Noah's Miracle

Three Noahs

2012-01-22T09:42:00.000-08:00

I made an appointment for Noah's haircut this time, making it more difficult to be turned away. Three children all with the name of Noah who also all happened to be three years old, all walked in for appointments at the same time. We all joked with odds like that we should all play the lottery. Ironically, the same hairstylist that turned us away a few nights previous was the one who had to take Noah for his appointment. She was overly nice, asking what seemed a thousand times if we were satisfied with Noah's haircut, hopeful and optimistic about all the things he'd be able to do in the future. I think it was her way of apologizing without really saying the words. I let it be. As really I suppose that is what God's Grace is really all about - Noah has his own ways of wedging himself into people's hearts and changing them for the better. He obviously didn't need my intervention to open her eyes and her heart.

Chris and I took a brave step last night, we all went out to dinner as a family, something we haven't done well before Luke was born. We have a pediatric wheelchair on loan, we don't get to keep it, and we will only have it a few weeks. That is a huge regret I have is letting therapists pick Noah's pediatric wheelchair at only 10 months of age. The dreaded Kidcart. I hate that thing. I seriously hate that thing. Every time I look at it, I'm reminded about what a mistake it truly was. At the time being so very new to the world of special needs, I had no idea there were a multitude of other options out there. The Kidcart was presented to me the only fabulous option for Noah, so it was ordered and received February of 2010. Noah never ever would sit in that chair, he hooked his arms on the rests causing himself injury, his equipment vendor attempted to take the arm rests off, of course disabling the tray feature simultaneously, adjusting the hard foam in the back and seat to make it more comfortable, but that seat was never a match for Noah. Now of course since Noah has at one time been given a pediatric stroller/wheelchair, Medicaid doesn't want to give us another one - even nearly two years later. So we operate only from traditional strollers for Noah. He has no chair to sit up and truly see the world.

I told Chris we need to take advantage of the loaned equipment and go to dinner. Brave move on my part. As I wasn't sure how we'd be perceived in public with an obviously handicapped child in a wheelchair and a small baby. People pass judgment rather quickly. I called Texas Roadhouse, Chris' favorite place to eat, and explained we'd be coming with a wheelchair and needed a sling for a baby carrier, they were amazingly nice and said they'd hold a table for us that would accommodate us. I thought maybe we'd be forced to wait, but we were able to get right in, a table already set up for wheelchair access and a sling to hold the baby carrier. What a relief that it was that easy. We sat down and Chris set Noah up to eat, as he expects to eat right upon arrival. I sat and watched other people watch us. Some looked on with tremendous admiration, offering me slight smiles. I seen pity and sadness in the eyes of others. And even expressions of relief. Relief that it was me - and not them. An expression I'm familiar with, as I gave that same expression to a mother and child in a doctor's waiting room about a month prior to Noah's birth. I was so thankful and relieved that it would "never" be me, as I would give birth to a healthy baby boy. But that is just it - you think things like this can't happen to you, but they can.

Chris and I ordered items from the menu that aren't typical of us, maybe staying with the theme "different is okay," the outing went off without a hitch. And it made me long even more for having a chair that I could pull right up to a table and have Noah participate with us. It was refreshing to feel like we were somehow rejoining the world. Trying to become a part of it again. I think it was healthy for all of us. As we left the restaurant it had grown so crowded that it was back to back people. No one could move. Yet it was like the sea parting as Noah made his way to the door, leading us in his chair, lighting up the way with his ocean blue eyes and tender smile. He was happy.

"Beginnings are usually scary and endings are usually sad, but it's everything in between that makes it all worth living." Sandra Bullock in "Hope Floats."

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

I Chase Small Miracles

2012-01-19T18:42:00.000-08:00

Christmas break from therapy spoiled us a little. I admit it really is nice to take a break sometimes from therapy. The scheduling, the phone calls, the people in and out of the house, getting both boys fed, ready and out the door in time to make it place to place. Sometimes I don't know who is more tired, Noah or me. Yet we trudge on because we know that we must - that Noah needs this extensive team of help.

There are days, like today, where I wake up with a crushed heart that is in a million teeny tiny pieces. So tiny it's impossible to collect them all and glue yourself back in time to present yourself to the world as a mom who isn't hurting over a child that is limited in physical ability. I spend my drive to therapy with on and off again tears, thinking, hoping, thinking some more and ultimately praying as hard as one can. Just let him sit... just him talk. And just when all feels lost, a small miracle happens that again somehow sparks that ultimate "hope."

Noah was asked to kick his legs in the water today by his therapist. I glanced over realized that he was kicking and immediately asked the therapist: "Are you doing that?" She looks at me with a huge smile and excitement and says no he's doing it all on his own. 17 times continuous kicking his legs in the water by himself upon request. Then another 20 intermittent times upon request. I was in awe. He understood we asked him to kick! And he was physically able to deliver upon that request. Then we worked on grab and releasing of objects in the water. Noah has never been particularly good at grasping objects. Today he refused to let them go and give them to me! I am not sure I even have words to describe what watching something your child has never been able to do for the first time is like.

I wish Chris had been there, its kind of the equivalent to watching your child say a first word or a first step. This was a first for Noah and I wish his daddy could have witnessed this amazing moment with me. A sense of hope had again re-sparked as I tried to piece all those shattered bitty bits of my heart back together to make it through the rest of my day.

Things were going rather well I suppose until we attempted to get Noah's haircut this evening. We generally walk-in with no problem, however tonight Noah was refused. The hairstylist was just finishing up with a child and as I was putting my name on the list told me that she had an appointment right after this one (which you could clearly tell was not the case as she smiled and giggled to a friend next to her), in any event she said the store's policy was to take no child after 6:40pm, mind you we arrived at promptly at 6pm, and I can't imagine any child would get a 40 minute haircut. I've gotten very good at detecting lies when it comes to Noah's special needs. Make an excuse - any excuse so you don't have to help the "special kid".... honesty I think would hurt less than the lie. Noah has never had the same hairstylist anytime that we've went, but maybe I need to start a relationship with just one hairstylist that feels comfortable helping us and just go to that particular one each time. Ironically I didn't come home in a heaping mess of tears, maybe it was Noah's successful day of kicking and grasping, or maybe it was Chris' lovingly rubbing my neck on the way home to silently say I understand you're hurting and I want to make it all better - it certainly isn't because I am developing a thick skin to the cruelty that is out there. I am sure if I dwelled on it more this evening the sting would cause a good cry.

I feel the most badly for Noah as cognitively he is very aware - and I mean super aware, he wanted a haircut, and did not understand why we were leaving without one. Uncontrollable tears and screaming as we packed him back in the car. We pulled over at Home Depot even though we needed nothing there, just to make him feel like we had a destination and a purpose. He stopped crying immediately and was soothed that we were entering a store. Oh, how I remember the days when it was the opposite and I couldn't take him anywhere! Nonetheless, we had found a way to soothe our distraught child who was looking forward to a haircut and didn't get one. Thank goodness Luke has the disposition that he does, he sits on the sidelines very quietly as Chris and I just do what we have to do to make things work for Noah. For tonight Chris and I think will try to have a mutual laugh over Noah and Luke fighting in their own way over a car toy... and start over again tomorrow.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's Third Year Video

2011-12-29T19:16:00.000-08:00

Thank you to all that have offered us hope, healing, faith and prayers.

We Believe in Miracles!

Make a video - it's fun, easy and free!
www.onetruemedia.com

Noah's Video is can also be viewed at the following link:
http://www.onetruemedia.com/shared?p=fed38dec3b2a24bb63e72e&skin_id=701&utm_source=otm&utm_medium=text_url

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 4th Christmas

2011-12-27T19:24:00.002-08:00

Good Morning Christmas

Happy About Santa

Noah walking to his presents with daddy's help

Noah had a great Christmas. This was the first year that he genuinely seemed interested and sat in his daddy's lap for the opening of gifts without getting upset. We had two little casualties this season, I broke off Joseph's fingers on our nativity, and Chris got overly confident that an excited Noah could not reach his treasured Christmas house that plays Trans-Siberian Orchestra music (which was our first concert together). This was the first year in six years that he took it out of the box, placed on the ground so Noah could see it better, and Noah goes and swats the little snowman in the front yard and flings it across the room. Poor house, thank goodness for superglue. I think next year we'll get the little people's nativity that won't break and put the house back in the safe box... Chris handled the accident rather well, I suppose although he was sad his house got injured he was happy that Noah broke something for the very first time. As for Joseph's fingers - well I've tried to glue them back together twice without success. Joseph remains fingerless, now packed away safely in a box.

Noah however hasn't been doing fantastic with the soft solids like he was a couple of weeks ago. It is almost like he forgot that he could do it. But I think it is temporary, it's all new for him, and we really don't want to force or rush this for him. It's all Noah time. He'll decide when and if he wants to eat soft solids. So I'm trying not to be heartbroken that he seems not to be able to really handle it this week. He did it once, well more than once - so he'll do it again.

The new year is fast approaching. I have no resolutions other than to keep fighting as hard as I can for all that Noah needs. I am hoping that a pediatric wheelchair will be in his future this year. It has been nearly two years since we obtained the kidcart that Noah sincerely hates. We have a Stingray on trial, and Noah seems to really like it. I had originally thought the cuddlebug would be a good match for him, but the cuddlebug is like sitting in a giant pillow, and I think it would limit the movement he already has. The stingray lets him exercise the skills he currently has, while offering him the necessary support. We've been warned that Medicaid will likely deny it. It is a tremendously difficult position to be in knowing Noah needs items that we can't get for him. More than anything we pray that the new year will bring huge healing for Noah. I would love nothing more than if this was the year of talking. We continue to hope, pray and have faith in all things possible.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah

2011-12-27T19:24:00.001-08:00

Noah had a great Christmas. This was the first year that he genuinely seemed interested and sat in his daddy's lap for the opening of gifts without getting upset. We had two little casualties this season, I broke off Joseph's fingers on our nativity, and Chris got overly confident that an excited Noah could not reach his treasured Christmas house that plays Trans-Siberian Orchestra music (which was our first concert together). This was the first year in six years that he took it out of the box, placed on the ground so Noah could see it better, and Noah goes and swats the little snowman in the front yard and flings it across the room. Poor house, thank goodness for superglue. I think next year we'll get the little people's nativity that won't break and put the house back in the safe box... Chris handled the accident rather well, I suppose although he was sad his house got injured he was happy that Noah broke something for the very first time. As for Joseph's fingers - well I've tried to glue them back together twice without success. Joseph remains fingerless, now packed away safely in a box.

Noah however hasn't been doing fantastic with the soft solids like he was a couple of weeks ago. It is almost like he forgot that he could do it. But I think it is temporary, it's all new for him, and we really don't want to force or rush this for him. It's all Noah time. He'll decide when and if he wants to eat soft solids. So I'm trying not to be heartbroken that he seems not to be able to really handle it this week. He did it once, well more than once - so he'll do it again.

The new year is fast approaching. I have no resolutions other than to keep fighting as hard as I can for all that Noah needs. I am hoping that a pediatric wheelchair will be in his future this year. It has been nearly two years since we obtained the kidcart that Noah sincerely hates. We have a Stingray on trial, and Noah seems to really like it. I had originally thought the cuddlebug would be a good match for him, but the cuddlebug is like sitting in a giant pillow, and I think it would limit the movement he already has. The stingray lets him exercise the skills he currently has, while offering him the necessary support. We've been warned that Medicaid will likely deny it. It is a tremendously difficult position to be in knowing Noah needs items that we can't get for him. More than anything we pray that the new year will bring huge healing for Noah. I would love nothing more than if this was the year of talking. We continue to hope, pray and have faith in all things possible.

Love,
Stacy, Chris, Noah & Luke

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 3rd Birthday Party

2011-12-24T12:12:00.000-08:00

Happy Birthday Noah!

Noah's Birthday Smiles

Noah's Balloons

Noah's Sesame Street Wall

Noah's 3rd Birthday Cake

Noah had a beautiful birthday. He squealed with excitement over his balloons and amazing birthday cake. His cake was provided by a foundation called Icing Smiles who bakes cakes for families with children that have medical needs or special needs. A sweet lady named Shannon, made his cake - a Sesame Street theme. It was the most gorgeous cake ever. She delivered it to our home, and it was truly a gift in so many ways. What an amazing loving person it takes to donate their time and talent to touch the heart of another human being. Noah loved his cake. Shannon made it extra special with no artificial dyes in the cake, and gluten free cookies. Noah was able to eat the center because it was a vanilla custard. She thought of everything and it made for the perfect 3rd birthday.

Chris helped Noah unwrap all of his gifts. He made attempts to help, swatting at the paper - so eager to try. Sometime it makes me twinge when I see him trying so hard to do something that he just can't do, but I try to flip that switch in my brain that says, at least he is still here, be thankful... be thankful that you get to even see him try. The day was emotional for me, but in really beautiful ways. My sweet neighbor brought Noah a card, another special needs grandmother that we've connected with over the years made a special delivery and got him the cutest pop-out book that Noah thinks is awesome, tons of birthday wishes poured in for Noah in emails and guestbook entries, each one of them so touching that I probably cried a thousand times over - even a birthday wish from the photographer who took what we thought would be his last pictures when we took him off life support. Tugs at my heartstrings. And I save everything for Noah, documenting it, so one day he'll know how loved and prayed for he is from so many around the world. His hope chest just grows each birthday, with cards and love.

Even though it was just us for Noah's birthday party, you all came in spirit, we couldn't ask for more. We have been blessed. Although this journey is tremendously hard at times, and I ache daily for what Noah cannot do, it is such a gift that we celebrate him three years later when the odds were against him. So many of you have been with us from the beginning, continuing to pray with each passing day for a little boy named Noah.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah Turns Three

2011-12-23T09:21:00.001-08:00

Sweetest Noah,

Today you turn three. I had hoped that I could tell you that you learned to walk and talk this year - or even sit unassisted, but I can't. But it's okay. You are blossoming in so many other ways and we continue to believe your miracle is not done. We still do some kind of therapy just about everyday. You are the hardest working person I know. I admire your courage, stregnth and continued perserverance. You make an excellent big brother, and although your are limited in what you can do, you always find a way to squeal to alert me if Luke is into something he shouldn't be - primarily your toys. This year you were able to eat spaghetti for the first time, your first un-pureed meal, and you have demonstrated some really great understanding in therapy. Your head and back control is improving, and you are now making an effort to compete for your toys and swat at them. And we remain so ever proud of you.

You have learned to sass back, although we don't know what you are saying, you clearly are passionate about your message. It is my hope that one day you'll be completely understandable and can share with the world all of your amazing experiences. Your daddy has become your entire world. He makes you smile and you light up with just the word "daddy." I am glad that he is your favorite person. He loves you beyond all measure. He calls like clockwork everyday to make sure you are okay, doing well and are happy. You never leave his mind or his heart. He still totes you place to place calling you his little "buddy." You now have a cute game you play before bath time, called diaper soccer, where he wraps up your used diaper and lets you kick it down the hallway while he holds you up. You seem to love it, and sometimes I swear the neighbors can hear your loud giggles and squeals.

Your patience has grown, I am now able to take you to stores without complete meltdowns. Although you still get annoyed occasionally if we are at stop lights, or if I don't pull out of parking spaces quick enough for liking. Your sensory issues seem to be improving yet I recognize there are still things that bother you. Yet I am so impressed that you tolerate Luke pulling your hair or trying to suck your hand. He means well, and just hasn't learned yet that you can't defend yourself from his gushy love attempts. Considering all that upsets you, I am impressed you let Luke get by with that.

Your eyes continue to tell me things words cannot. If I didn't know better I would swear they get more crystal blue with each passing year. They glow - and are simply beautiful. Your eyes bring me such inner peace when I struggle about your physical limitations. They bring me reassurance and comfort. They are the most loving eyes anyone could ever have. You somehow find a way to tell me everything will be okay. My worries and concerns for your future seem to grow with each passing birthday. I want only the best for you, and all the opportunities for continued recovery that I can find. I never give up hope that things will get better for you. I never stop trying, praying and hoping that all things are possible.

As you turn three, I want you to know that you could not be more loved, more treasured, and more prayed for. We love you so much and are so blessed that we are able to celebrate your third year of life.

Love,
Mommy

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

We Wish You a Merry Christmas

2011-12-18T15:10:00.001-08:00

From our family to yours, we wish you a Merry Christmas filled with lots of love, laughter and blessings!

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Brought Blessings

2011-12-16T19:10:00.000-08:00

Noah for the last month or so has occasionally had these moments of yelling at us - which sounds much like what Charlie Brown would sound like if he was mad and attempting to talk in sentences. We find it funny, because Noah is so serious and in his world he is talking. Last weekend we had lots of these moments, Noah is becoming more communicative - in his own way, we just don't know what he is saying - but he certainly does. Chris and I think this is very encouraging. Noah is making an effort. He wants to talk. He really does.

Speech therapy even reinforces Noah's amazing progress, as we asked him a series of questions for the last two weeks, and he is able to make the correct choices by first looking and then hitting the corresponding big mack button that is the correct answer. Noah is completely accurate and never misses the correct answer, which indicates to us that he understands. He could tell us who was holding him, the name of his speech therapist, identify who his brother was, and even make correct responses to what pieces of clothing a puzzle was missing. This is HUGE! Noah understands, and we have confirmation! This an amazing blessing and a big "inch-stone" for Noah. Now that he understands it is my task to figure out how to open the doorway to further communication between us. I still haven't abandoned hopes with the IPad, although communication apps that I would likely need for Noah are expensive - a few hundred dollars each. His speech therapist hasn't given up hopes that Noah will eventually be verbal, but we are working on both goals - augmentative speech device and verbal speech.

Two big successes in a month- the ability to eat soft solids and confirmation of comprehension and understanding. I can only imagine what the new year will hold for Noah. I keep dreaming of all the endless possibilities for Noah, all the things I still would love to provide for him to further his successes.

We also were gifted with a early Christmas blessing. Four very talented engineering college students built Noah a chair that straps in to other chairs for feeding and activities. They put so much time, love and creativity into making Noah something functional and safe. They have forever touched our hearts with what they have done for Noah. Not many people take the time to care they like did. Their hearts were genuinely in helping Noah. They thought of all the creature comforts for him, an abductor, special padding, 5 point harness, BPA safe plastic, magnetic tray with a lip, Noah's lack of head and trunk control and added extra supports. Young minds with such determination and love for others. They are the type of people who will help shape a better future for little ones like Noah - people who care so deeply sprinkled about out there - angels in waiting. Sometimes there are not enough words to express the gratitude that your heart contains. I am as candid about our hardships as I am about the joys and thankfulness we have for the blessings that come our way. They even made an instruction manual for us and called it "Noah's Miracle Chair."

"Gratitude is the music of the heart, when its chords are swept by the breeze of kindness." ~Author Unknown

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Put a Little Love in Your Heart

2011-12-08T14:35:00.000-08:00

I must have left my badge of courage at home today - my armor to guard my heart. I had to go grocery shopping which means just me, two boys and a bulky double stroller. I try to convince myself that I can do all things - after all this is my life - for the rest of my life. Special needs aren't going to exit anytime soon. So I've taken on the attitude that I must find ways to do things that are simple for other people, but complicated for a mom like me.

Noah does possess a handicap parking pass which often causes people to look at me like a lazy mother that just doesn't want to park in the North 40 during the holiday season. People pass judgment quicker than I can blink. When I entered the store a pregnant mother points at me with her husband and says "that's the mom I told you about thinking that she is too good to park far away." I wanted to say something. I wanted to walk up to her and tell her how the cows eat the cabbage, but really I was mostly hurt and heartbroken. So I proceed down another isle trying to shrug it off when I am stopped by a lady who I am sure meant well but bends down to Noah in the stroller looks him up and down briefly and then stands and says "its cerebral palsy." "It's?" Noah is not an it. He is a person, a little boy. That's great she wanted to play diagnosis, but it was rather impolite and it sent a further sword through my heart. Usually I don't mind talking about Noah's special needs, but today was just not my day. I nodded and kept going. I didn't want to engage in explaining Noah. I round the corner to pick up spaghetti sauce only to find my third enounter with another lady who asks why Noah looks so sick. I tell her he isn't sick. And she asks why his cheeks are so red, and his skin tone is flushed and he looks like he is fever stricken. I explained to her Noah's cheeks were merely chapped, and that he wasn't ill, thanked her for her concern and literally bolted to the check-out lanes before I busted out in a thousand tears.

I passed a Starbucks on the way out, thought about trying to find something to comfort my woes, only to feel even worse as I reminded myself that Noah doesn't get to enjoy such luxuries so why should I be able to? So then the tears just flowed, I load Luke in the car who offers me his pacifier if somehow that will make me feel better, and Noah just looks at me with this angelic expression like he's sorry. And that just made it worse, because none of this is Noah's fault. This feels so hugely unfair that this is his life. I am the one who is sorry - sorry that I cannot fix it for him. I feel utterly helpless in making things better for him - making people kinder along his path. I do my best to really have some thick skin when it comes to what people say, the stares the points, the gossip - but it's so exhausting to imagine that I have to face these types of things on a regular basis as the years go by.

I rarely have the opportunity to watch television. However, the television is often on in the kitchen as noise as I go about doing laundry, or cleaning the kitchen and I overheard two shows the other day discussing special needs in an unfavorable light. It is no wonder our world has such a negative view with people who have disabilities when these messages are being sent out to the world - to our children who hear this and think that those with special needs should be discarded members of society. Why isn't anyone ashamed of this? Why does everyone let it happen? Even if you aren't directly affected by someone who has special needs this shouldn't be okay with you - with any of us.

The first show was; The Doctors, discussing the plight of a mom who refused to "pull the plug" on her siamese twins after being coached and convinced that her children would have no quality of life. Her twins did eventually pass away, but she received some heavy criticism from this panel of so called "doctor celebrities" on TV, that she merely caused them prolonged and unnecessary suffering. So as I stewed on that jaded one-sided television commentary, I'm hit with yet another show as I am making Noah's nightly bottle - Harry's Law as I am listening to the comments of character who is a mother to a special needs child who dies as a result of his neck being broken and it is presumed the mother did it as a mercy killing. She of course denies involvement with the killing of her child but does not deny that he is "better off dead," after all he'd be just like a "houseplant." And doctors were very right in that he'd have "no quality of life." In the end it is found that the nurse preformed the "mercy killing" of this small child and not the mother. Does that make any more right? I just can't believe we are sending these types of messages out that are so one-sided. First I really think that doctors and nurses should never ever, ever, ever tell a parent that their child will have no quality of life. They do not have a crystal ball... God is not whispering in their ears. How can they even predict that? I would love nothing more than if the medical profession ceased instilling in parents that there is no hope. There is always hope. I can tell you from first-hand experience that although Noah is very physically challenged, he has a quality of life. He is loved - a thousand times over, he is cared for with everything we have, he is happy, he is healthy and he is living. Every life matters not just those that are viewed as "perfection."

Sometimes I find the things some people think and say to a special needs family simply appalling. Another mother stated that someone called her special needs child a "flushable." Society generally thinks we have come so far in discrimination...not so. We still judge color, we judge gender, we judge age, we judge sexual orientation and we certainly judge people with disabilities. How do we fix it? I don't have the answers I wish I did. Sometimes I think if I write about Noah, write about our family that maybe someone out there may stumble upon it and genuinely think twice about what special needs means, what our family is like, the message behind, hope, love, and faith in all things possible. Yet am I so naive to think that one person or one child like Noah can change the world? Even change just one person's perception? I would rather you turn your back on me, than look me in the face and ever call my child a "flushable."

We are human just like you, we feel we hurt, we crave love and acceptance just as much as the next person does. We want opportunities for our children - we have hopes and dreams for them just like the rest of the world does. We are not that different from the rest.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Santa's Fire Truck Arrival

2011-12-06T15:31:00.000-08:00

Santa's Arrival on the Fire Truck

Noah trying to tell Santa his list

A Very Happy Noah & Family

Santa's Presents for the Boys

Our much anticipated double Santa day, turned out to be a single Santa day. Unfortuantely, Noah's little brother spoiled his morning fun and was under the weather so we were unable to attend the morning festivities with his therapy school. This evening by far was the best Santa visit to the house for Noah. He watched the fire truck pull up to the house with sirens and lights and watched on with curosity. Noah was eager, happy and he even reached out to touch Santa's hand when Santa offered it to him. He even watched as Santa and all his helpers climbed back onto the fire truck and drove away. His expression was wanting to run after them and ride along - just like any almost three year old might. He's trying. He's trying so hard. He's in there, he understands it all. One of Noah's therapist was so kind and delivered his gifts from Saturday's missed event for him and his brother. We are going to save them for Christmas, so that Santa can leave them under the tree. Being able to provide Christmas gifts or even birthday gifts is a financial challenge. I state that no way in no way complaining about our circumstances, but simply the reality that many special needs family face. It is such a blessing that such places that want to help special needs children have a brighter holiday, also include their siblings. It means the world to families like ours.

Noah continued his amazing eating today. I fixed him organic mac and cheese for lunch - the noodles were a bit thicker but he did it. And he did it with ease. I am of course going so slow and easy that it takes me much longer to feed him. He is so patient with me, as this is new territory for me as well. I don't want to get overly confident or rush Noah with this progress. This is a huge step for him. I am proud and want to still take this new advancement slow for him. We might try maybe some scrambled eggs in the morning - we'll see. He's by no means ready for a sandwhich, or has the abilty required to chew complex solids. But with a lot of time, help and love - we'll get there.

I read an article the other day on the preservation of baby teeth to obtain stem cells to treat cerebral palsy the other day...comes with a price tag almost just as bad as saving sibiling cord blood and tissue stem cells. $800 a tooth - not including the storage fee. Wow. I wonder what the toothfairy would think of that? And they really don't tell you how many baby teeth they would need for treatments. I still believe there is such promise in stem cell therapy, I just don't know if anyone truly knows the best way to administer them just yet. I do feel that stem cells will one day help Noah in his recovery.

So now Chris and I start the hunt for birthday and Christmas goodies for Noah... always a challenge to find age appropriate toys that Noah can engage in. I was thinking maybe I would search out some special needs paint brushes, maybe some inexpensive communication aids like flash cards. He is making appropriate eye gaze choices and attempts to swat and chose correct answers with flash cards during speech therapy, just another indication that Noah is understanding way more than many give him credit for. After Santa left we told Noah that eventhough he didn't tell Santa what he wanted that Santa can read minds and already knows. We got the biggest smile from Noah. I just love him so much. I could hug and squeeze him endlessly.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Let it Be Christmas....

2011-12-02T17:52:00.001-08:00

Food can be so fun & messy
Noah's 1st solid meal

Let it Be Christmas...

The house is decorated, the stockings hung with love, angels to look over us during the holdiay season and lights to guide our way. It has become a time where I just don't celebrate Christmas but I celebreate you Noah. I celebrate your life and how far you've come in nearly three years. You will forever and always be the best Christmas gift I have ever received.

We had another little miracle today Noah. You had your very first solid food lunch. I had hoped you were ready and you were. Today you had Chef Boyardee spaghetti and meatballs (minus the meatballs because I am not sure about those just yet). You handled yourself like you've always eaten solid foods. Not a single gag, flawless swallowing. And you even were able to suck back the noodles that hung out of your mouth! - Which leads me to believe straw sucking may be possible for you. Unbelievable, and truly inspiring. This is something you couldn't have done a short few months ago. I of course called your daddy and your grandmother right away to tell them of this amazing accomplishment and took pictures of this special moment. I will probably be on cloud 9 for days... maybe weeks! To think how far you have from where we started. To all whom have ever doubted that you had the potential to ever find any recovery... never count Noah out. He is a fighter. He is a survivor. He is a miracle.

Tomorrow you have a full schedule lined up of Santa... Your therapy school is doing Santa tomorrow and the City of Westminster has Santa scheduled to arrive for you tomorrow evening on the fire truck. What fun. Hopefully this being the third time you have seen Santa, will be all smiles and laughter. I still remember your terrifying screams as you watched Santa get off the fire truck and walk up our driveway. It was funny and sad at the same time. Last year was slightly better, but you still looked at Santa with extreme uncertainty and you certainly didn't want Santa to hold you. So we will see. We are hoping that you have a day of nothing but joy.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thanksgiving Blessings

2011-11-25T17:41:00.000-08:00

Oh sweet Noah, I am sitting upstairs listening to your daddy make you and your little brother laugh and squeal. Your daddy is just your world right now. He always knows how to make you happy. I love all three of you so very much. You had a really great Thanksgiving. You were able to eat small pieces of jelled cranberries and I pureed you a dinner with all the trimmings and chocolate cheesecake for dessert. You loved it. You looked on at your little brother with such curiosity and joy as you both watched your train go around the Christmas tree. These are the things memories are made of, Noah. I watched a documentary this year titled the "Life of a Turkey" on PBS. Many people probably would have found it a bit boring and maybe odd considering the timing of it so close to Thanksgiving and the fact that millions of turkeys are slaughtered across the world to find themselves on a dinner table for this holiday once a year, however I didn't really give it much thought that we'd also be serving up a turkey in relationship to watching it. To me it simply had some great messages about life. As mentioned in the documentary, as humans we fail to take life one day at a time, we rarely find the joy in each second - other creatures are able to do that. They aren't planning what they are doing today, tomorrow or even next year. They exist only in the moment. And because of that their worries are few, and their joys abundant.

I look at you and think you are a lot like that. You aren't planning your today, or your tomorrow or your next year. You have that joy about each moment you are here on this earth, you have something many of the rest of us don't have - a sense of enjoying what you have today, making the best of whatever it is. I wish we all had the ability to live in the moment, but we simply don't. You see I will always have to plan, to make arrangements, to figure out what comes next for you. That doesn't mean that I won't ever find that peace and pure joy. It just means my peace, joy and contentment will come from a different place. It means I have the hope that someday I can rest knowing your needs will forever be taken care of, that I have done my job to bring about the most independence I can for your life, to provide you with all the tools at your disposal to be all that you can be. Then when that happens I can sit back and exist only in the moment.

I can't exactly remember how the conversation was brought up, but your grandmother was telling me the other day of a bad time in history, during the Holocaust, where they killed thousands of disabled children in their Child Euthanasia Program. I learned of course of the Holocaust in grade school, but I don't remember them teaching us about that portion, some things in this world Noah are so horrific, that no one wants to talk about it. I of course didn't remember learning about it - so I came home and read up on it and sure enough your grandmother was telling me correctly - indeed thousands of children just like you were killed just because they were different. They deemed them "Life not worthy of Life - or useless eaters" implying heavily upon their burden to society. I don't understand humanity - how anyone could ever think that about someone like you. You are not a burden in anyway to this world. The world is a better place because you are in it. You are a blessing - a gift to this world Noah. Although these events occurred as early as 1939, I grieve years later for all the families that lost their special children. There are not enough tears in the world that express the magnitude of that pain. I am mad, sickened and filled with tremendous sadness all at the same time. The world must never ever let something like that happen to special needs children ever again.

I refuse to let you ever be mistreated by this world in anyway. I will fight through the stares, the mean comments, those that lack compassion and education. I will fight for you until my dying day to make sure that this world is appropriately kind to you. I will never give up on that mission. Your little brother will stand by your side always, he too will defend you long after your father and I are gone. He too will make sure that you will always be okay. We will stand by your side always.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 3rd Halloween

2011-11-13T17:10:00.000-08:00

Noah's Upright Swing

Noah's Blues Clues Pumpkin

Noah the Race Car Driver

Noah had a good Halloween. He made a cute little race car driver. Noah refused to wear his hat, he isn't into hats... or hoodies even. I think it still goes back to his birth trauma and even potentially having his head cooled for days. He doesn't much like it if you fiddle with putting things on his head. Who could blame him? However, he's fine if you want to brush his hair, or kiss his head - or even give him a haircut.

I think Noah's sensory issues are improving, I haven't seen his gag reflex in about two months, and he's also welcomed his animated Elmo's back into his life, finding them fun and entertaining. He's even starting to blossom into different interests. I see him rolling around the floor to get to his toys and intently spends a lot of time swatting and attempting to reach for things. I think his head control is even getting stronger. When I carry him he is able to turn his head to the direction we are traveling now, something he couldn't do before. Things are slow, but we continue to work hard everyday to help Noah make gains. I still cling to the belief that miracles happen everyday.

Noah's grandma got him an early Christmas present. A swing so that he can have different motion than the platform swing offers him. Our basement has become much of a therapy gym for Noah. I am so tickled that we have a swing for Noah that we can also attach to a swingset in the summer months. Finally, Noah can swing like other children his age. I especially love the H-Harness, I think I much prefer it over a 5-point harness for Noah, it seems to offer him the stability he needs with softness and security.

I think I have hit a record with the earliest I have ever put the Christmas tree up. It was up November 5th - There is something so hopeful about Christmas, that I itch to participate in the season. A reminder as I walk the house, toting Noah in my arms that love, laughter and blessings are all around us. It is magical to see a child light up over lights, a train that circles a tree, gifts that have their names on them. All things seem possible at Christmas. A special kind of innocence that we seem to lose the older we get. The child-like awe and wonder amazes me. I gravitate towards it... I actually crave it... once remembering exactly how I felt at particular ages along my childhood. And now I am privileged to watch my own children create holiday memories. You must always draw upon all the sweet moments in life to get through the difficult ones. It is key to staying positive along the way. I am certain of it.

There is a quote that I just love by Annette Funicello, "Life does not have to be perfect to be wonderful." Chris and I are truly doing the best we can to find our rainbow in some often times very dark clouds. Perfection is overrated. What a life lesson to realize that you don't have to be perfect to be wonderful. One of the many things Noah is showing me, and hopefully showing the rest of the world as well. He is wonderful in every sense of that word.

Everyday I am simply in awe of how hard Noah is trying. If love can move mountains as they say, then watch out world because Noah is going to do great things in his lifetime. We are so dedicated to this little boy, he is the center of our world.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Share Your Story

2011-10-13T18:56:00.000-07:00

Worry is just about the worst form of mental activity there is—next to hate, which is deeply self destructive. Worry is pointless. It is wasted mental energy." Neale Donald Walsch, Conversations with God

Worry and fear are powerful emotions that often consume large parts of my day. I also understand I could worry until the cows come home and it wouldn't necessarily change an outcome. But I don't know how to turn my worry and fear over to God. As mothers, to some degree we worry about our children, always. But to worry over a special needs child is a million times worse. It almost feels like a heaviness lays upon my heart. I am afraid to breathe, afraid to move, afraid the other shoe could drop at anytime. I am always on guard. I have grown into Noah's voice... his defender. I wish I could eliminate this immense worry and fear I have over Noah. I am scared for him - always.

It doesn't take much to put me on guard's edge. Noah grinding his teeth while readjusting himself in the night. A thousand things run through my head since it isn't characteristic for him. Is he uncomfortable? too cold? upset? possible breathing or seizure? My mind comes up with a million possibilities for simply hearing him clinch his teeth in the night. I wake up Chris briefly for his assessment to verify if I have pushed my inner alarm button prematurely. He reassures me all is okay, even getting out of bed to peak at Noah to help ease my concern. Yet I remain on duty. Wide awake listening for any potential signs of distress. An hour and twenty-two minutes later Noah laughs in his sleep and I finally give myself permission to close my eyes.

Everyday Noah has some kind of therapy with Luke in tow. My days are so fast often time leaving me really little time to even plan dinner for my family. My house has never been messier. Something that I am having trouble getting used to. Everything used to be so perfectly polished and cleaned. Now I find myself tripping over toys, baby gear and large therapy equipment. I am trying to learn to go with the flow. Everyday I learn something. Noah and Luke are my guides.

These are three things I learned today:

1) Don't write a therapy check in advance on a windy day unless you plan to sprint faster than a cheetah across 3 parking lots to chase after it.

2) It's okay to bring your child to therapy in his pajamas, even if you get a multitude of stares...

3) I will never ever have clothes that don't contain drool, spit, or splattered food on them ever again.

Noah and I were listening to a friend's Christian Music CD on the way home from therapy - Megan Isaacson, and her new CD titled The Living Room. We were in the car and I could have sworn I heard him try to sing to me. It was amazing. He didn't have words, but he was humming. Here I am at the drive thru at Starbucks crying. Because my little Noah was trying out his heavenly voice. The cashier asked if she could help me, I told her they were happy tears. She smiled and told me to have a good day. It took my breath away as I simply thanked God for just that small moment. I find such tremendous beauty in such small joys. There is nothing like else like it. It is the most intense feeling watching Noah do these miraculous things. I keep telling myself if he did it once, he will find a way to do it again.

Chris and I finally decided on Halloween costumes for the boys. Luke was easy... naturally he will be a little lion, Noah however was a bit more difficult. I've seen so many special needs networking postings with Halloween costumes designed around wheelchairs and walkers, however for Noah we're still in the in-between stage, as he isn't proficient in walking in a walker, nor has Medicaid "gifted" us with a pediatric wheelchair that will work for him. There are some mighty creative special needs parents out there who truly give a lot of effort and thought about making Halloween costumes that surround adaptive devices. We, however went simple and cheap this year. Noah will be Dale Earnhardt, Jr. #88, Chris' favorite NASCAR race driver. We found a new Dale Earnhardt, Jr. costume for a mere $4.97. And I think he'll be super cute. We almost went with Cookie Monster, but Noah was Elmo last year and although his skills are often infant-like, he is now a toddler and growing up, and a race car driver seemed maybe more age-appropriate for him.

And before I leave you with all my rambling feelings and Noah updates. I must share with you a story about a man named Christopher Coleman who pronounced dead at birth, and without oxygen at least fifteen minutes, much like that of Noah's long thirteen minutes, his story literally leaves me in tears every time I watch it. It makes me believe in infinite possibilities for my Noah. I promise never to give up on him. I will believe all things are possible for him. And I will forever and always ask for all that come in contact with him and our family... pray. Pray so hard and please don't stop praying for our little Noah. I would love nothing more if God called Noah to share his story. For now, I share that story for him. Someday I hope he will write the words.

(Remember to pause Noah's music to watch the video) You can also double click the screen directly for a larger view or cut and paste the Youtube link for viewing:
http://www.youtube.com/watch?v=6ERwwrK3I_I

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

I Just Need Possible

2011-09-28T12:48:00.001-07:00

"I don't need easy, I just need possible." Bethany Hamilton (Soul Surfer)

It is now fall and the crickets seem to echo at me. They do this every fall, when the weather is just a bit cooler, the window is cracked open and they sing this perfect little song as my mind wanders before I am able to fall asleep. I just lay there and listen to them, often fanaticizing about a little boy down the hall running and opening our bedroom door, jumping in bed with us, wanting me to read him a bedtime story, a boy that can wrap his arms around me and say "I love you mommy." Sometimes I imagine it to be so real, I want it, I crave it. I don't think I will ever stop wanting it. A piece of me feels so broken about where Noah is with his development, while another part of me remains hopeful and positive about all the possibilities for his future. Noah is such a full-time job. There is not a moment in the day when I am not networking, researching or even praying on his behalf.

Luke continues to speed along. I am in awe everyday about how fast baby development happens and how effortless it is. Luke doesn't need me to teach him, he just does things. He doesn't need me to navigate his hands to his mouth, or how to show him how to get his head up, or even to crawl. It's built in knowledge. Yet for Noah I continue to try to show him how to do things, only to have his body fight against him. And in a couple months he will be three. Three years ago that terrifying event and a fight for life. And three years later I am still fighting for him in so many ways. I imagine I will fight for him until my last breath... the life of a special needs mother.

I have had some wonderful friends pop in for little visits this month, which has has been nice. My sweet neighbor a few houses down, former co-workers, and even my new friend Sarah, who I latched onto at Target. You can tell a lot about a person if they love children and animals, even more so if they find it within themselves to love a special needs child. They hold Noah and talk to him just like he's any other little boy. They see past his differences which makes my heart just flutter. I feel he's accepted. Although I know everyone recognizes my life now is significantly different and permanently altered. I have a handful of people still in our corner. There are lots of people out there that are so unbelievably loving and kind. They sure balance out the ones that are completely the opposite. They are pieces of sunshine in my challenging days.

Chris and I continue to struggle a financially to obtain all we can for Noah. We tried to hold a garage sale during the summer, but it was a flop. I think we just picked one of those "off" weekends to do it, and didn't get a lot of traffic. Sadly we lack the time to try again, so what remains will likely be bundled off for the DAV. I've contemplated how to go about fundraising, or finding assistance, but it's not as easy as selling Girl Scout Cookies. I've tried to find help even through Noah's Early Intervention, however they tell me that their funding has been cut significantly and they can't help through their Family Assistance Program. I of course, being a mom directly affected by the lack of financial help, take great issue with the fact our government can spend millions throwing junk into space, paving roads like, Wadsworth, that were never in need of repair to begin with, and to top it off I have to listen to the nightly news about how our politicians dine lavishly, and use campaign funding for expensive gifts for themselves and others. It is almost like someone stabbing you with a dull fork. So many millions of wasted dollars, when there are so many people around the world struggling. The world feels so out of sync. It is estimated that there are 100 million people worldwide living with disabilities. A tremendous number. Often times I wonder if the majority of intention is not to provide rehabilitation to these individuals, but to simply say, you're not worth the time, effort or money it would take to make your life better. There is no doubt in my mind that Noah will make advancements with therapeutic help, and of course the love we hold for him. Granted, I don't know how far Noah will go, but healing is possible for him. Chris and I will walk to the ends of the earth and back to do what we can for him. We will do our best to leave no stone unturned.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah and the Attack of the Red Sisters

2011-09-21T18:45:00.001-07:00

I was feeling like a cooped up chicken today, so I braved it with both boys out into the world on my own. I tried to find a place that Noah would enjoy so I picked Sensory Park, the only "combined" park for both typical and special needs children in our City. Let's just start by saying the entire experience was disappointing. Noah loves to swing. It quite possibly is his favorite outdoor activity. Usually however, we have to place him on our laps, hold him with one hand and the swing with the other. A difficult feat for me, a bit easier for his dad. I had never been to Sensory Park so I really didn't know what to expect. I suppose I envisioned lots of fun and many things Noah could do. Not really the case. There is only one swing there with a reclined 5-point harness. And that swing has seen better days. There were no other things Noah could do at this park. The 5-point harness on the swing is overly stretched out, and shows signs of high abuse. Yet, somehow I thought I could make it work. I parked the double stroller close to the swing so I could supervise Luke, and swing Noah at the same time. I placed Noah in the swing, and attempted to buckle him in. The 5-point harness offered him no support so I attempted to angle him sideways and put his arm through one of the harness straps for some resemblance of support.

Suddenly out of nowhere the Red Sisters appear. Two overly precocious red head girls in pigtails. I am swarmed in seconds by these rambling obnoxious girls. One takes the break off the double stroller and makes an attempt to kidnap Luke while the other grabs the swing Noah is on and attempts to make him go faster and higher. I ask her to stop and she tells me "No. She'll do what she wants". Noah has a panicked look on his face, that says oh God, this little girl could kill me. I yank Noah out of the swing all the while hollering at Red number two who is trying to drive off with Luke as I shout don't touch the baby, he bites. Luke has no teeth, nor does he have the demeanor capable of biting anyone, yet it was all I could think of as a deterrent for a five year old terror. However her response was "cool" as she holds out her hand to see if Luke will play vampire. Where is the mom?, I keep asking myself. I turn to find anyone that looks like a parent. No one. What did mom do drop them off and run?

I had no other option than to pack up my crew and leave. The two intentionally block the bike path and refuse to move. It's like a stand-off. I should have rammed them with the double stroller, but instead my better judgment says throw it in reverse and go through the sand pit. Of course as soon as I hit the sand the double stroller is stranded. I look up to the sky and say "Why me?" I pick up the 27lb double stroller with both kids and their combined weight and carry it over the sand pit. No doubt my back will feel that tomorrow. The Red Sisters obviously annoyed that I found a way around them chase after me like piranhas desperate for a feed. Why won't they just go away? One shouts "the baby hasn't bit me yet", and the other reaches for a stick and throws it down in front of me intending for it to stop the double stroller like a police strip. Who are these girls and where did they come from? I tell myself God if this is a joke it isn't funny. I finally make it to the car and look back to see where the Red Sisters went. They are no where in sight. I sigh thinking I've reached safety, only to turn around to see one clinging to my bumper of my car. No way! I ask her to get her rear off my bumper so I can load my kids in my car. She gives me a dirty look and backs away. Defiant little things is an understatement. All I wanted was a little get away from the house and this was way more than I bargained for. A dog walks by on a leash and then off they go - saved by the walking Labrador Retriever.

I load the boys up and head for home. On the drive back I kept thinking maybe I expected too much out of the experience. Maybe there is no place that we will ever fit in or have opportunities for us like other families. But as I pulled into my driveway, I said to myself, my expectations are not too high. That park sucks. And anyone that thinks otherwise is kidding themselves. It is just like any other park. It doesn't have what Noah needs and he is entitled to the same fun as any other child. It needs better accommodations and at the very least a working 5-point harness, more than one swing and shade! Had the Red Sisters arrived before me, we never would have been "allowed" to get on that one existing swing. They are building another special needs park in the City neighboring us, however I'm not sure if it will be any better than Sensory Park. I wonder if they've even consulted with parents like us to see what activities our special needs children can engage in. I'm sure the response I would get is most children aren't severely physically affected as Noah, and they have to appeal to the "majority" which is slang for "it would cost us too much to accommodate your child." I think a real special needs park needs a swing capable of holding a wheelchair, ramps for wheelchair accessible play yards, shade and cabana for sensory issues, I'd also love to see a picnic area that accomodates special needs children and their families, and ditch the sand. How would someone like me even get to the playground with all the sand that is literally everywhere? It needs a rubber ground service everywhere. Sensory Park leaves out a huge amount of kids as it is far from wheelchair friendly.

I don't think we'll make an effort to go back. There wasn't anything there for us. Those "typical parks" are a dime a dozen. And I'd probably be looking over my shoulder the entire time wondering if the Red Sisters were going to strike again. I was clearly out numbered today.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Irritating Factor

2011-09-13T19:43:00.001-07:00

Noah woke up at 5am this morning because there is a car in our neighborhood that refuses to fix a muffler problem. That car passes our house several times a day and without fail if Noah is sleeping or trying to sleep it is over. There are so many little things that now get on nerves that never did before simply because it makes life in the special needs lane more complicated. Like the teenager down the street that purposely lets his beagle poop all over the sidewalk down the entire street. Not so cute for a parent that takes lots of stroller rides to calm a upset child, or needs to use the sidewalk for a child in a walker or adaptive tricycle who can't easily dodge fresh poop. I think I even am starting to develop a short fuse for those who complain about literally nothing. Is it really a crisis because you burnt your dinner? Call for pizza. Try a REAL crisis. Try dealing with terminal illness, a special needs child, or a even a death, not everyone comes home each day to those they love - then tell me how serious your burnt dinner is. It feels like no one has any real perspective on how their actions or words affect someone else. We have such an egotistical society that it gets to me. We rarely help our neighbors or fellowman unless there is something in it for us. Or we use only a specific cause to be "nice" for a day. Cancer awareness day, or an Anniversary of September 11th... then everyone goes right back to forgetting what really should matter all the rest of the days of the year. Why can't we just all be in it for each other 365 days a year?

I get more annoyed that insurance agents, medical billing representatives and equipment vendors cannot seem to find the time to return my calls. Five minutes in my day is like an hour when you have to care for a special needs child. Hunting them down over the phone takes precious minutes I often don't have to deal with them. It also irritates me when I find a product I depend on and they discontinue it. There rarely is a substitute that works as good as what I liked. In the land of special needs that really is a pain. I also get irritated more when people put me off. They think if they ignore you long enough you'll go away. Little do they know the special needs mother is probably the most persistent creature walking the face of the earth. We will stalk you, bother you, and make you memorize our child's name until we see results to get them what they need.

And raise your hands if you know of someone who told you life just really isn't that bad? Not bad for who exactly? Not bad for the little boy who cannot do anything but lay on the floor all day? Not bad for the parent in ICU with a dying child? Even more ironic when you have a special needs parent tell you they just love the way their child is. Really? Who really hopes and dreams their child will face physical or mental challenges? Let's be honest. Totally honest about what this is like. Don't sugar coat it, don't say you're okay when you are not. It's okay to put your heart out there and wear it on your sleeve. There is no shame in pain. None. We all have it to some degree throughout our lifetime. Talk about it openly. God would want us to help each other through the mud puddles, and rough patches. He would want us to try to help heal each other. Yet so many just turn the other cheek... not their problem, not their child.

Noah may not be a child any of you gave birth too, but he is a small part of your life in someway if you are reading this. Whether you sit on the sidelines and are rooting for all his little achievements, or praying daily for continued miracles to come his way, whether he touches a soft spot in your heart with his tender blue eyes, or inspires you to help someone in need. There is a reason he is here, and there is a reason that you are reading about him - however you crossed his path. The biggest irritant is that there are so many that don't recognize that there is something much bigger than "us." So I ask that you don't worry about your burnt dinner, but worry more that your neighbor might be hungry. Pick up your puppy poo because a special needs child needs that sidewalk, and please... just please fix that loud muffler whoever you are so this tired mommy can sleep. Amen.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's AmTryke

2011-09-08T20:06:00.000-07:00

And suddenly fall is upon us, without much of a warning. The changes however that I want to come the fastest come the slowest. The closer we inch to Noah's third birthday the more I wish we were so much closer than we are to recovering gross motor development. Patience, I try to tell myself - but it doesn't work. I still feel so restless for all I want for Noah. Noah watches Luke now with such awe. He is quite aware that this little being half his size on the floor is gunning for all the toys he cannot play with. He now recognizes he must share my time and attention with someone else. Yet he remains lovingly curious about his little brother. Luke likewise has this amazing understanding of Noah's challenges and watches me intently as I feed or carry Noah from place to place. It is such an intriguing dynamic to have two very opposite children with very different physical abilities.

I found these fantastic little swim socks for Noah that prevent his feet from blistering while standing assisted at the bottom of the pool at therapy. I tried several swim shoes without success, they were simply too heavy for him and rubbed his ankles until they were raw. It's amazing how something so simple can make my day. Swim socks - who knew? Noah's daddy also finished putting his AmTryke Adaptive Bicycle together. Noah made his official debut today in his new bike. It was unsually comforting to watch his legs move up and down as any other child would... well with the exception that his feet were strapped in to simulate regular pedaling. It's hard to believe this little bike when you look at it, is as expensive at it is. It's much like something you'd buy at Toys R Us, except with adaptive hands and feet and a special harness. Noah had a great time. We decided not to strap in his hands yet to give him an opportunity to get comfortable with the fact that his legs were now doing something different than ever before.

I'm still trying to pursue getting Noah equipment, my never-ending daily challenge. I'm trying to still get him a free-standing toilet system, although the equipment vendor isn't responding to my inquiries. The seating system of course is still a problem, and his is quickly outgrowing his infant high-chair. It would be fantastic if I could find someone to custom make something just for Noah's particular body and needs. I also have been looking into seeing if I can get Noah and adaptive velcro spoon to work with self-feeding. Each spoon, left or right handed costs nearly $30 each.

Noah's attachment for his daddy is beyond words. I mean literally nothing to Noah as soon as he sees his daddy. Poor Chris can barely even get away to mow the yard. Noah insists Chris never leaves his side. I don't know what I would do without Chris. He is the most amazing father. The two of us are giving all we have for our two little ones.

I was at Target the other day, as it seems to be the only place I can buy Noah's particular brand of diapers, and found him a Crayola - Mess-Free Finger painting Kit. It is super neat. With all of Noah's sensory issues, touching regular finger paint drives him to the moon. It causes him to gag and cry, as he is overwhelmed with the texture. The mess free is so neat, you dip a finger in a little container filled with a uncolored substance that feels a bit like lip balm and magically color appears when you touch paper. No water, no mess, no fuss, and one happy Noah. I highly recommend this for any little one with sensory problems. We plan to paint a picture for daddy soon and post in on the refrigerator for all to see.

"Dear God, Please send to me the spirit of Your peace. Then send, dear Lord, the spirit of peace from me to all the world. Amen." Marianne Williamson

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Mama Don't Cry for Me

2011-08-29T19:42:00.000-07:00

I took Luke grocery shopping with me over the weekend while Noah stayed home with his dad. Luke and I had wandered a few aisles before a lady with a little girl in a car seat carrier stopped us to ask how old Luke was. I think I knew what she was doing before she ever spoke. I passed her and she gave me that same glance I used to give other mothers when Noah was a baby. The look of uncertainty and desire to be inquisitive. I told her Luke was four months old. She said she noticed him grabbing, reaching, playing with toys, smiling and babbling. She explained her daughter was five months old and not doing any of that. You could tell she sensed something was wrong with her baby, but didn't know what. She said she had an older child so I knew she was familiar with typical baby development. I explained Noah to her, and his special needs being my first... not really going into depth much about his specific problems. In hindsight maybe that wasn't wise to mention Noah, I didn't necessarily want to scare her into all that "might" be wrong, I just wanted to offer her comfort - to know she wasn't alone in wondering about development or comparing. Her instincts were already telling her that something wasn't quite right with her child of five months not even being able to smile yet. She turned from me quickly as if she were terrified with no where to run. My heart wanted to run after her and hug her and tell her regardless she was going to be okay. But I stood still, frozen looking at Luke for guidance. His eyes told me I could make it worse, so I walked away.

I wish I could tell you that it gets easier each day, that somehow you heal yourself. But you don't. I have good moments, but I have equally crushing moments filled with mega flowing tears and a broken heart. However, as God has it, he makes me listen to things I need to hear, people I need to meet and lessons I must learn from. Today he sent me a song called "Mama Don't Cry for Me." by Harker and Wolfley (found here for listening) http://www.vimeo.com/27847555

It is written about an Autsitic child, but the words mean exactly the same in the land of special needs mothers.

God knew what I was feeling today. He was telling me he doesn't make mistakes. Noah was meant to be here - God sent him back to me after thirteen long minutes knowing the road for him would be a hard one. He knew I would shed countless tears. That I would cry for him at least once a day. There is purpose in Noah's life. There is a reason that he survived against all odds against him. The lyrics in the song are as follows:

Seven tests and 13 weeks of doctors she heard the words no mother wants to hear. Her little boy won't be like the others. He's gonna need a lot of help through the years. She couldn't hardly breathe so she just listened. When the doctors left the room she came undone. But she's always known that God doesn't make mistakes. For a moment for all that she could do was pray. She looked in his eyes and her heart heard him say, can't you see? I was meant to be. Mama don't cry for me.

Years went by and her prayers kept on growing. Help me be his mamma today. Oh, God give me strength. She wondered if she'd ever really know him. But even through her tears she wouldn't trade one day. Cause she's always known that God don't make mistakes. With a little faith she knew she'd be okay. She looks in his eyes and her heart hears him say, can't you see? I was meant to be. Mama don't cry for me. There was pain, but there was joy. And she looked at life from that little boy.

Cause she's always known God don't make mistakes. When his high school graduation finally came. He whiped his mama's tears, a smile was on his face, he said look at me, I am so happy, mama don't cry for me. Mama don't cry for me. Mama don't cry for me.

So many of us out there crying for our little ones.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Welcome to My World

2011-08-03T14:55:00.001-07:00

Today Noah received his TAOS. He was less than thrilled. When Noah is upset it simply upsets me. I can't help it. It's like this built in mommy device that feels his pain. You might as well just stab me in the heart repeatedly and watch me bleed a thousands times over. It is the worst feeling in the world. I want to take it all away for him, all of his frustration, fear, anxiety, and to be able to restore his physical abilities that were stolen from him. There are days when I feel like I could scream with the pain that exists.

I'm not afraid to talk about how this journey makes me feel. I gave up counting the number of emails with negative, unsolicited advice many months ago. Some from well intentioned people, some from those who forget to think before they speak, and well simply others that I can come up with no excuses for. Words of encouragement and support most certainly help on days that are difficult, it helps to remind myself that I'm not utterly alone even though I often feel that I am. Chris and I do feel abandoned by those that should be there. I ran across a blog posting today in the land of special needs, that really says a lot. It is written by a father of a little girl named Katy, titled "The Five Things You Should Know About a Special Needs Family." It is located at: http://hope4katy.com/five-things-you-should-know-about-a-special-needs-family/

Todd, the author of Katy's blog states these as the five things you must know:
1) We're Ostracized
2) We're Jealous
3) We're Scared
4) We're good at hiding things/We're not good at hiding things
5) We're stronger than you realize/We're more fragile than you realize

All of it is true. Whether you want to acknowledge it or not we are ostracized. People will walk up to me in the mall and scold me for allowing my nearly three year old to still be in a stroller, by giving into his tantrums by holding him, for me still be "feeding him by a bottle." I want to shout at them how cruel they are to me, if they only understood, if they took a minute to be less than judgmental. Must I put him in a shirt that says "I am disabled" for people to get it? Yet I feel so alone that I lack any words in my time of need and become much that of a shrinking violet in my pain. My mother tries to force people that only want to give us unfavorable glances rather than speak to us, by starting small talk in elevators. Some are simply too uncomfortable to pay us any attention, some unwillingly give in to a simple hello. How do I change the world on my own? How do I get everyone to realize what we're going through? How do I make everyone understand and love us despite the fact we are so different from most families? We don't get the luxury of attending parties or bar-b-ques, going out to dinner, or really gatherings of any kind. We have to think about the fact we don't have seating for Noah, that he'll be uncomfortable and irritable, that we won't blend in with everyone. We've become that family that you want to stare at like a freak show.

Todd's second item is jealously, although I feel a bit more like it's envy. Sure it aches when I see a child Noah's age running, playing, talking and hugging their parent. I even adore those that act out and wish I could intervene when their parents are disciplining them over something so minor like asking for a piece of candy in the check out lane in the grocery store. I want to tell them I only dream that my child could ask me for candy, I'd buy him the whole shelf if I could. I like Todd, also feel tremendously proud of Noah for he struggles for every single accomplishment, yet a part of my heart will always yearn for him to be like other children that can run about.

The third item: We're scared. Yep. Super scared. We're scared of things we didn't even realize we were scared of yesterday. Are we doing enough? How do I get the equipment he needs when Medicaid won't help? Are we making the right decisions that will better his life? Should sell everything we own and attempt stem cells in another country? How do I protect my child when I die from being put into a group home or institutionalized? Who will care for him and love him when we are gone? We worry about the future just as much as we worry about the present. Our fears are tremendous and endless. Just like Todd mentions, everything involved with caring for a special needs child costs way more than it should. It is not an exaggeration. When I tell you there is no help to get Noah's needs met I am telling you the honest truth. This is the truth of our lives. We are much forgotten members of society. We need help that isn't there. The government, family, friends, medical and therapeutic professionals all turn a deaf ear.

The fourth item: We're good at hiding things and not so good at hiding things. That is something that Chris and I try to find a balance on. We have always been private people. Noah's blogs emerged out of great pain of those inquiring initially about his condition, and us being to distraught to verbalize it. It's developed into a testimonial of what we've been through and what we're currently experiencing, while offering to the world I hope a sense of hope that this little boy named Noah has the ability to beat the odds against him. I want someone to read this one day and say look where he started from and where he is today. I want his story to restore faith and offer hope when all feels lost. I want Noah's story to teach others to challenge thoughts and inspire change. There are days when I can put on a great face and smile and laugh like there's not a care in the world, when in reality I could be so sad and crying in the inside. I've learned fast people don't want to be around you if you are sad, you bring them down. They don't want to hear your problems. I'm expected to act like I can handle everything at all times. Reading Todd's number four was difficult for me, because many forget that Chris is along side with me in all of this too. Even though I am the one writing Noah's blog, this is all very hard for him too. There are many days when we cry together. We are all each other has. It is hard to discuss all of these emotions in a public forum, so many of us put ourselves out there only to get slammed down. Just like Todd, we often times contemplate if we should even hit the post button and publish what is truly in our hearts and on our minds. We are judged just like our special needs children are.

We are stronger and more fragile than you realize. The last two and a half years have forced me to be stronger in ways I never imagined I could be, in ways I never wanted to be. I've learned to be more assertive for a child that has no voice, to stand up one hundred percent for what I believe in, even if it makes me completely unpopular. Chris and I never forget how fragile Noah really is. We know a common cold could be worse for him than the average child, that medical treatments that are safer for other children, could pose a life-threatening event on his life. We are more sensitive, and feel pain more intensely. Words cut through us quickly even if we don't display the initial pain.

Todd suggests these are what you can do:

"Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and strain take their toll. We're just trying our best to survive. We wish people might see through the facade every once in a while and understand that we appreciate the slightest effort to make us feel... special."

If you happen to stop by Todd's blog about his daughter Katy. Please remember we all need a little kindness and support.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Stranded

2011-07-29T09:53:00.000-07:00

I'm still on my quest to find equipment for Noah. Unfortunately, I feel like I'm just stuck in the mud with my options and resources. We want to go to the Village Inn and eat out like other people get to do, but we can't because Noah doesn't have seating, I can't afford to buy him the Seat 2 Go out of pocket and I can't get help through Medicaid, and can't find any organizations that can help me. I want to get him adaptive spoons that have velcro straps to go over his hands to work on self feeding, can't get those either. I have to give the borrowed cuddlebug back in a few days, and there is no one out there able to help me purchase another $3,000-$4,000 mobility chair for him. I want to get Noah a Dukki Pediatric Commode Chair, and was told that Medicaid will not approve it because Noah has a shower chair and they consider them one in the same. I found Noah on the floor this morning, yet Medicaid won't allow him a Sleep Safe Bed. Finding foundations for help is like finding a needle in a hay stack. Sometimes I feel like I could do internet searches until the cows come home and still come up empty handed. I lack the time, resources and the ability to network efficiently to hold fundraisers. You watch your circle of friends and family dwindle as they realize that Noah's condition is not temporary and that our lives will be permanently and forever altered. I simply feel stranded. I have a child with needs and can't move forward obtaining any of it.

The only highlight is Noah qualified for an adaptive tricycle, and we are hoping that he'll be able to get the AmTryke-9xs soon. Noah of course does not have the ability to ride a bike on his own so his little hands and feet have strap on gadgets while we push him from the back. We are hoping though it will be therapeutic for him. His TAOS arrive next week. I am curious to see how that works differently from his gait trainer. I hear though I should expect him to flop over in it since he doesn't have trunk and head control. So I am really not sure how comfortable that will be for him if he drapes over it. But the orthotist thought it would be beneficial for him, so we'll see.

I was talking with a special needs dad the other day that has two teenage children that have I believe a neuromuscular disorder, I don't believe either one can self feed, I know they cannot reposition themselves, both are in power wheelchairs, and at least one is on a pulse ox while sleeping. He reminds me so much of Chris, this devoted dad and husband. I have such admiration and respect for them. Dads that would do literally anything for their special needs children. This dad sleeps on the floor next to his children at night so he can turn them, and be alert for their oxygen monitoring needs. His cell phone goes off not because someone is calling him but because he set the alarm to remind him of medication his children need. No one could ever comprehend how much love and devotion parents like us put into our children. We give up literally our lives for them. Not one thing is ever about us anymore. Yet you'll never hear us complain, we carry this heavy load and responsibility on our shoulders while attempting to project to the world we will be okay - even if we are crying on the inside, not because we've lost a normal life, but because we cannot fix our children. We are the walking wounded.

It grows increasingly difficult to listen to parents who brag about their children reading at four months old, being a "genius," bumper stickers that gloat and advertise that their child is the smartest, most talented human being to ever walk the face of the earth. They have no sense of what I would give to have my child just say one word to me, even if he could never read or never write, or if he could walk five unassisted steps, if he was even able to wrap his arms around me and hug me. I go through everyday feeling shattered and broken, I try to glue my heart together long enough to be the best mom I can be. I cling to wishes that with each new sunrise that Noah will do something remarkable that will inspire me to grow roots of new hope. The cycle is endless and I feel as if my soul is at unrest because I am always searching and trying to find ways to make Noah's life easier and better.

Luke's milestones are coming so fast, so beautifully and effortlessly, yet I haven't been able to record them because I almost feel guilty that I couldn't record them for Noah, I hold these dates in my mind. His first smile, his first laugh, his first rollover. They aren't written but simply etched in my heart. It seems unfair that one can do things that the other cannot. I feel that they both should be completely equal. I try to buy them both toys at the same time, even knowing that Noah cannot likely play with his, I already anticipate such guilt when I can offer Luke a piece of solid food, but can't for Noah. Luke somehow looks at me with these most patient loving eyes, reassuring me daily that we're all in this together. He allows his big brother to inadvertently swing his arm in the wrong direction, hitting him, or to unintentionally kick him. He already understands, as if God whispers to him you will be the most remarkable little brother to a very challenged older brother.

"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

A Blessed Baptism

2011-07-09T18:26:00.000-07:00

Today Luke and Noah were baptized. For those who have followed Noah since birth, you may remember that Noah was baptized at Children's Hospital when we believed that his time with us would be short. However, there were certain aspects to the ceremony that we were not completed for Noah, the cloth and the candle. So today we finished the ceremonial part of his baptism along with Luke's entire baptism. I was so glad that Noah was able to be included, his baptism was sad and difficult for us, and this made things feel a new. Noah had his proxy Godparent there, which comforted Chris and I to have someone there for him.

They each wore matching outfits, that Luke's Godmother purchased for them. They looked absolutely heavenly, and I do mean heavenly. It was a very small baptism, but it was a beautiful day. The kind of day I will always hold dear in my heart. There were only two people that attended to celebrate the boys. I've always said if you have at least one person who loves and cares about you in this world that is all that you need. And Chris and I love Noah and Luke so much that I pray we can make up the difference for the missing family members that wish not to be a part of their lives. Luke's Godmother got the boys a beautiful cake from Das Meyer, our favorite cake bakery in the whole world. All great occasions are always extra sweet with a Das Meyer cake.

Noah did beautifully in church, I really do think Noah has this connection - this deep knowledge that comes from his thirteen minutes struggling to get back to us. To be around Noah is a divine kind of love. And Luke he brings up the rear with love and understanding to accompany Noah's great gifts.

Luke's Godmother wrote an incredibly special letter for Noah today, the kind of letter that makes you all teary:

Dear Noah,
From day one you have been a light to this world Not many can say they have inspired people to pray, to trust in God and to believe in miracles as you have. The way the eyes are the window to the soul. Through yours it seems as though we can see God himself! As we celebrate the completion of your baptism today, I wish you peace, love and all God's blessings. There's a song I sing to myself when I think of you. My favorite line... "God danced the day you were born."
Love,
Julie

Isn't that the kind of letter that just makes a mom melt? (And Luke's letter was just as beautiful). How blessed I am that I am able to share this little boy with so many. What a privilege it is that God trusted me to care for two of his little ones.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Life's Storms

2011-07-07T18:19:00.000-07:00

Today is Chris and I's wedding anniversary. I woke up to a beautiful blooming red roses and a card that made me all teary. Noah looked at me in his highchair ready for breakfast and smiled as if he had been keeping his daddy's surprise a secret. I turned to him and said aren't they pretty and he laughed in delight. It is really hard for me to get out with both boys so I had no present for Chris. I thought all day long about what I could do for him. The easiest thing I could think of was picking up dinner from his favorite place, Texas Roadhouse. The only problem, they don't do curbside service, so I called them up in hopes they would do me a huge favor and bring out my order to the car so I didn't have to load up Noah and Luke to get inside. I spoke with Becca the manager, who answered the call, I explained Noah was special needs and wondered if they would bring the food out to me, and apologized for any inconvenience, she said she would be more than happy to help us and to call back when I was ready to place my order. I was so excited, to be able to get Chris his favorite meal, since we really are unable to dine out without Noah having a proper chair to eat from.

I packed up the boys and headed out only to find myself half way there in a tremendous storm. Suddenly without warning, the car was overwhelmed with blowing winds, hail and rain so hard that I could see nothing in front of me. Noah began to panic and scream in fear, he quickly took his eyes off his Elmo DVD, and remained fixated on the windshield with terror. I also was fearful, being with both the boys and caught so quickly with this storm. The clouds were swirling and I had no idea if I was facing potential tornado without shelter, and the streets immediately began to flood. There was no where to pull over, so I kept going, I only had a few more blocks to go before I had made it to my destination.

I called Texas Roadhouse when I arrived and they immediately brought my food out to the car in the pouring rain. The waitress was soaked in a matter of seconds. My car window had let in a huge puddle of water that drenched the side of me and the entire car door. The only thing I had to help me absorb the water was a size 4 Huggies Natural Diaper of Noah's and it gets a five star rating for the amount of water it absorbed. Way to go Huggies!

If you patron Texas Roadhouse off of 52nd & Wadsworth in Arvada, please give that manager an extra thank you the next time you go for being a person that has such kindness, care and willingness to help a mom like me. Tip them extra big. They deserve it.

The drive home was nothing less than eventful, the streets under the overpasses had begun to flood and I had to go through two of them. I was blinded by water from other cars and the rain and I could not judge how deep and if I could make it or not. The water had made it to the doors of the car, but thankfully, I made it through, as Noah screamed on while inside I was doing the same. I knew that God had brought us to safety when the sun came out all the while the rain continued it's downpour. It created a foggy type of light, and Noah closed his eyes to rest briefly, something he never does in his car seat. That is what God's love feels like. The love during the storm. He is always... always there. And he continues to get me through some very difficult things in my life.

It was definitely the most challenging anniversary present to date. Next time I think I'll check the weather channel before leaving home. We really put Noah's sensory issues through the test. Poor little guy will probably sleep extra well tonight from all the anxiety and fear the trip created for him. And We give our thanks to God for seeing us through and keeping us safely in his hands.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

A Joovy Kind of Love

2011-07-01T10:32:00.000-07:00

Noah's eyes are looking much improved and he seems to be feeling a lot better. The Orthotist came and measured his feet for new shoes, sure-steps and a theratog suit. Now we are getting ready to measure Noah for a TAOS orthotic system. It's kind of like a walker, but is made a little differently, and the good news is we can actually have it because it is not billed as a gait trainer, it is billed as an orthotic. Sometimes it is just nice when you know you can have something and insurance won't tell you no. I am hopeful that Noah likes it and that it will help him in the walking department.

Noah is starting to like Luke more and more each day. I was feeding Luke in my arms and Noah was in his highchair trying to gently play with Luke's feet with his own feet. It was sweet. Noah was doing it really gentle, so I knew he wasn't trying to kick Luke and that it was purposeful movement on his part. Noah also watches Luke in the bouncy with curiosity. The bond between them is growing. Luke is very beneficial I think for Noah. It was a gift for him to be blessed with such a loving and patient little brother. They seem to compliment each other nicely.

We were finally able to obtain a double stroller for the boys. We had to find one that would work for Noah primarily. It is a side by side, with a huge canopy shade because Noah still has trouble adjusting to the sun. It is called a Joovy Double Stroller, and it is working beautifully for both boys. I had to put a Snuzzler in Luke's side since he cannot sit unassisted yet and is very little, but it is working out great. I don't know if I'll be able to get through all doorways. The doctor's office has a small door and ironically no handicapped button to push for it to open. It is frustrating when I run into places that don't have that button for doors. I never realized how needed it was until Noah.

Thank you for all the well wishes for Noah's speedy recovery. Reading his comments and caringbridge guestbook entries always warms my heart and fuels me when I need it most. God finds a way of connecting me with exactly who I need to get me along my days on this journey. Thank you all for taking the time to come and read about Noah and caring about our family in such beautiful ways.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Conjunctivitis Strikes

2011-06-28T09:52:00.000-07:00

Noah Day 2 of Illness (much improved photo)

Noah had a bit of a rough end to his weekend, developing bacterial/chemical conjunctivitis that came accompanied by a fever. It came on rather quickly like in a matter of hours a slightly red eye exploded into a swollen, crusty, draining eye that quickly spread to the second eye. Poor little guy isn't happy about his eye ointment treatments, and it is much improved today, although it still looks very bad.

Daddy bought him a Nemo stuffed animal fish, and Grandma got him a new Elmo DVD to make him feel better. He was rather sad and and his tone was floppy most of yesterday, an indication that he indeed was under the weather. The heat I don't think helps, as I'm trying my best to keep the house as cool as I can for him. Doctors say it most likely that Noah acquired the bug at pool therapy, since he is not able to get his hands to his eyes. I'm sure he wants to they have to bother him. I see him trying to rub the sides of his face on the floor. He's no longer contagious, which is good news for Luke who I think didn't catch it (only time will tell as I'm not really sure about the incubation period on this germ). And they say that he'll look pretty normal by Thursday, and I'm crossing my fingers and toes.

I'm also having to wash his bedding and all that he touches daily since he lays on the floor and surfaces so the germ doesn't stay there and re-infect him. Makes for lots of laundry and busy work for me on top of having to handle a special needs little one and a baby. Thank goodness that Noah's little brother is very patient.

I was able to meet a new neighbor on one of our evening walks with the boys. Chris had to keep walking, as Noah hates it if he isn't on the move, while I chatted. Her husband has MS, and she recently quit work to care for him. It was nice just to talk to someone who understands, who knows what this feels like, the fear and sadness that accompanies it all. We hugged and cried on the sidewalk together. She is such a beautiful person and I share her pain. This isn't easy being a caregiver to someone you love and knowing you are limited in the fact that you cannot cure or fix them. For a moment I didn't feel so alone on the block. Someone understood. We promised to take a walk or have coffee together sometime soon. No one should feel alone in this and it will probably be really good for the both of us.

Please say a little prayer for Noah that his battle with conjunctivitis is short lived. I miss his clear baby blues.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Double Blessed Father's Day

2011-06-18T20:28:00.000-07:00

What Makes a Dad

God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle's flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so,

He called it ... Dad

~~Author Unknown.~~

The devotion that Chris has for Noah grows with each passing second. I watch as Noah's daddy totes his floppy body from place to place, as he tenderly lifts him out of a bath and gently puts on clothing over stiff arms and legs, his patience for a child that is restless to fall asleep, words of encouragement for a child that cannot self-feed, excitement for a little one that can only roll over, loving glances for a child that is trying so hard to move towards his father in a walker, a daddy that points out airplaines in the sky, a daddy that holds his growing body and feeds him bottles, a daddy that takes long walks and says "I love you, my little buddy."

God couldn't have blessed our two boys with a better father. Chris is the most amazing man I have ever met. His heart swells with this emense love for his family. He is Noah's biggest fan, supporter and believes all things are possible. After a long day at work, he immediately runs to his Noah and embraces him with a loving hold. Scooping him up in his arms kissing him on his forehead. Noah smiling as he is carried from room to room. Chris' love has grown this year as he welcomed his second son. Little Luke tucked in his arms, starting to babble and smile for his daddy. You can tell Chris glows with this love that he holds for them.

On Father's Day I feel so blessed to be witness to such an amazing bond and relationship that he has with these two special souls.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

One Giant Step...

2011-06-13T09:49:00.000-07:00

Noah finally made an effort to take small steps in his gait trainer. It is still not going as great as I think it could. The seat on the Rifton goes side to side on him when he tries to walk, I really think it needs different seating for him, probably something stationary like the kidwalk offered. Darn do I feel like we made the wrong equipment choice yet again. He has the desire to try though, and is happy about making the effort. Now if only I could just make it easier for him. Of course we are having issues with shoes, but he's willing to give sandals a try, another small step, then we'll move on to regular shoes. Noah has outgrown his sure steps and therapy shoes, so we'll have to work on that soon with his Orthotist. I'm sure he could also use a new theratog suit, he just grew super fast.

We have been practicing walking out in our driveway, Noah likes the sense that he's going somewhere. Even if it's just to the sidewalk. It's curious to watch how our neighbors take to watching Noah in his walker. I would say most notice, but they try not to stare or watch, or really pay us any attention. We're kind of like out of sight out of mind, as they go about grooming their yards and parking their fancy boats. A wave or a smile might be nice. I certainly don't see a block party in our future. You would think that society would have come much further than we have with the stigma that is attached to disabled bodies.

Today Chris and I were out and needed to stop somewhere to eat and feed Noah. Of course we don't have a highchair with us that accommodates Noah, all we had was his stroller. The restaurant didn't want to let us in with the stroller. They said it was a fire hazard and against policies. I understand, I'm not trying to break the rules, but Noah can't sit in a booster seat, or any seating that restaurants offer. The manager made an exception and allowed us to dine with the stroller, it wasn't like I was lying to get the stroller in the doors, it really is the truth, Noah cannot sit unassisted. I almost wish there was a card or a letter I could carry with me that I could show someone to say Noah really has a disability and just because we don't have a "wheelchair" because he is so little doesn't mean that he doesn't have these needs.

The manager came by to ask how everything was but he couldn't look at Noah or us in the eye. I was going to thank him for letting us in with the stroller, but I detected that the "Noah situation" made him very uncomfortable, so I let him get away from us quickly without us saying a thing. We ordered the only thing on the menu Noah could eat... ice cream. But it bought us enough time to get home.

Today I actually had my head held high. I am proud of my Noah. He's doing the best he can with some really crappy circumstances. He didn't ask to be this way. It must be tremendously hard to be him, and he's trying... we're all trying to help him. So what if a restaurant manager gets the hebbie jebbies when looking at us? We're a family just like anyone else - we are just slightly different is all. But I look at Noah and just love him to pieces. How can you not just love him? He has such a sweet little soul. Those who take the time to know Noah understand that. He's more than just a body that cannot work properly.

He's been quite happy lately, a welcome change from the fitful fights of going to sleep. Now we have just the opposite. He wants to play, laugh and giggle for a long while before he's ready to say goodnight. However that's much easier on our nerves, so we let him play away as we wait patiently by him until he's ready for us to hold him to help his arms and legs settle so he can sleep.

We resumed pool therapy and it's going great. Noah hasn't forgotten the experience and has made great gains. It's small things, but giant for us, extra seconds or minutes doing something in the pool just makes us feel like he's making progress. The hippotherapy hunt isn't going well. There are no scholarships to be had. Apparently there is no money to give any out and they haven't offered scholarships in years and I'm just not sure it's possible without financial help. Therapy costs are tremendous out of pocket for us for what we are already trying to provide for him. It is discouraging not to be able to get all he needs.

"We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don't see a cripple. I haven't met anyone yet who isn't handicapped in some way. So what's the big deal? Don't hide your deformity. Wear it like a Purple Heart." - Georgiann Baldino

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Space In Between

2011-06-06T10:53:00.000-07:00

It seems as if almost everything I have for Noah isn't working these days. He looks like he's outgrown his highchairs, the double stroller we have catches his long legs because he moves them all the time and gets stuck, so it doesn't work, leaving me without a way to really stroll both children at the same time. I lack the funds to go out and purchase a side by side double stroller and I still think Luke is too small for such a thing, I have no idea what to do with Noah's seating. I found a Seat2go online that looks promising but it's so expensive and the you have to buy the headrest and abductor separately, both I think he would likely need. And then I run the risk of it getting here and it not working. I got the Tumzee, it's worthless. If you are a special needs parent considering it, don't. I'm not even sure it's comfortable for a typical growing child. Of course to return it is a restocking fee of 15 percent and I have to pay for shipping...

I'm very frustrated, that I can't seem to find something that works, it limits my ability to do things. I can't even attempt to go out with both boys anywhere really, I'm pretty homebound without help. Noah gets upset frequently and there is no way to hold him and Luke at the same time and without a double stroller of some kind it is pretty much game over.

Chris and I attempted a Home Depot run the other day with both boys realizing the double stroller we have just isn't going to cut it for Noah's muscle tone as he fights to get his legs out from underneath the foot rest. So Chris carried his limp body through the store, as people stared on. Sometimes it feels quite horrible to be this "freak show." An unkind glance is just as bad as an unkind word. You constantly feel on display. Often Chris and I feel like we really don't fit in the world on either side. We no longer fit in with society's definition of "normal" and we don't quite completely fit with the "special needs community."

Other families with special needs have these groups - mom support nights and such, they network in ways I simply can't. And if you find that you're out of favor with one then you're really out of favor with them all, even if you've never met a single one. Dads, really are entirely left out of the equation in the land of special needs, leaving it often to a female-drama filled arena. Maybe that's because many abandon their fatherly and husband duties when presented with a life-altering special needs child, I don't really know. It's a phenomenon that I ponder and recognize exists.

I must admit these past few days I've felt a combination of both sadness with a hint of bitterness. My feelings are in no way because of Noah, it's more because I cannot provide him what he needs. I can't get a functioning stroller, I can't get him a seat to eat better in, really the list is endless and it leaves me with this immense failure feeling. A mother that cannot provide. I feel stuck and often hopeless. I convince myself that if I had the access to the right equipment that Noah would be making more gains. I've tried foundations without success, I can't even afford these recycling equipment groups, like differentneedz.com. They say you get a discount, but even $500 is out of reach for an item that is originally priced at $800. I've tried to contact groups like Kids Mobility without any response. There are days when it just feels simply useless despite my best efforts. How does one stay on the side of optimism when it feels the odds are constantly against you?

I found this little prayer box at a local garden store. It has three little angels inside for prayers. I wish it had three hundred. I need all the little prayer angels I can get. Each little angel is carrying a special prayer. As hard as things get I know God is there, and I have to keep trusting "where there is a will there is a way."

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Finding Hope

2011-06-03T20:47:00.000-07:00

Noah's little "Miracle Garden" is doing wonderfully. Every sprout is up and thriving. It really is a special little garden and it is so wonderful to watch it grow. Sometimes it is hard to find the excitement in each day, knowing that Noah cannot catch a grasshopper to show me, he cannot play in a sandbox, or splash in a wadding pool. I don't get to experience any of those things with him. I wish I did. I try to find things to fill that void and occupy that space in my heart that craves such things, like watching a simple garden with the hope that it grows. Yet I still feel so robbed of all the things Noah and I should be able to do together. I'll put Luke in an outfit once worn by Noah, and think this is what he should have looked like, moved like, and sounded like. It feels so unfair that Luke can do these things and Noah cannot. Having a other child that is capable of all physical abilities in no way lessens the pain and loss that you feel.

I feel Chris losing some of his unwavering hopes that Noah will walk and talk. I see him trying to accept things, I hear the worry in his voice - the fear as he tells me Noah must never be institutionalized or put in a group home after we die. It is especially difficult for me as I always lean on Chris for his optimism about Noah, and to see him starting to worry about Noah's future makes it harder for me. We both are starting to detach ourselves from the love we have for this home. Deep down we know time is limited for carrying Noah's growing body up the stairs, and we realize he may not be capable of getting up them on his own. It brings constant uncertainty to our lives. We cannot plan our future in anyway as we do not know what tomorrow will bring us.

Noah seems restless these days, the weather is warmer, and we should be outside doing things, but Noah has no swing set, no outdoor activities. He's getting heavier for me by the day. His long legs dangling as I struggle to carry him. All he has is a therapy mat to lay on to watch the sky and clouds above him. He gets board easily, causing him to have mini tantrums. I feel his frustration, being locked in a body that doesn't work, unable to communicate to me his needs.

I dream of healing, I would the gift of someone or something to repair him. I find myself often searching for hope in all the wrong places. Internet searches for children that are doing better, therapies or equipment that are bringing successes, stem cell therapy clinical trials, the list could be endless. But I am learning hope isn't on the computer, it isn't on a google search, it's not found in someone else's blog or website. If anything you could quite conceivably make your aching heart worse by trying to find it in all those places. I have to find hope by looking at Noah. At his small fragile little body, by looking into his eyes and telling him he can do this, that he himself has to want this for his life as I can't do it for him. He himself is the hope.

"Hope never abandons you; you abandon it."
George Weinberg

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Put a Little Spring in Your Step

2011-05-24T10:42:00.000-07:00

Yesterday was the first day I attempted taking both boys on a walk by myself. I tried to gather all the things that would prepare me for making it around the block and back... water, keys, garage door opener, a receiving blanket for Luke to block the sun, a bottle for Noah in case he screamed and I needed something in a pinch... got the stroller ready, put Luke in then car which was close to the stroller. Put Noah in the stroller strapped him up, quickly snapped up Luke in the snugglie as fast as I could as Noah hates to wait and gets upset quickly. Rushed out the garage door and down the street like I knew what I was doing. I got four houses down before I realized I had no shoes!

So I throw the stroller in reverse only to toss the garage door opener out of the stroller as it shattered into several pieces. As I bent down to collect all the pieces to put the garage door opener back together the strap on the snugglie came undone. I couldn't re-hook it without taking Luke completely out and starting over. So one handedly I scramble to put the garage door opener back together only to realize I killed it. Thankfully I had remembered a set of keys, as a back up plan. So I run back unlock the doors feverishly all the while Noah is starting to whine and gearing up for a tantrum if I don't hurry, and I'm still holding Luke with one arm since I lost the left side of the snugglie support. Find some flip flops and we're on our way.

I'm surprised I just didn't give up and call it quits. But I kept going and we made it all the way to the elementary school up the street. It was field day. It didn't make me as sad this year to watch the other kids playing as it did last year. I think for me it was more of one last tour of a goodbye since the school is permanently closing due to budget cuts. It would be last time I'd ever see school kids playing there. The end to a piece of my childhood. It was okay to say goodbye, it was closing the door to memories of a little girl that had no idea what lay ahead for her in life. A time when life was innocent, sweet and easy.

I walked one last time where I learned to skip double rope, where I threw sand on the slide, where I fell off the monkey bars and landed in the nurses station, where I watched Blair whip out his boy parts on recess and pee in the tunnel. I passed the bicycle cage where the bikes were kept during the day, visualizing mine and how proud I was when I decorated the spokes with paper ribbon in red white and blue to match my patriotic outfit for a elementary school parade. I remember the tree that little five-year old Emily and I sat under when she told me her mother died of cancer, and I cried for the first time for another human being as we hugged. The gazebo that no longer exists that I would eat popsicles under. And the field where I let my monarch butterflies go that Mr. Waddingham had helped us hatch from their cocoons. I could still in my mind hear the bells ring and the sounds of happy squeals. I could see my small self lining up in order to go in to wait my turn for the drinking fountain. Life was truly beautiful then. What a wonderful little girl I was. I was precious and I miss those tender years in a lot of ways. I'm glad I didn't know then what life would be like when I got older. I am glad I enjoyed every beautiful moment that was brought to me, and that I had no worries. What an easy and wonderful childhood. I can only hope that my boys have a childhood that is filled with such memories.

After exchanging some hugs and conversation with a friend that I once worked with that I see from time to time that was watching her child participate in field day, the three of us headed back home. The walk back was slower paced. I had burned all my energy. My left arm was heavy from supporting Luke's weight that the snugglie had failed to provide. My right hand sweaty from being the only hand to push Noah in a stroller. I had wanted to drink the water I brought but failed to have a third hand to do it with so I trudged on. Me and my two boys. I think I was a bit lonesome on my walk. Sometimes I feel as if I am walking all alone. But I wasn't really alone because I am walking this road with these two sweet boys. Just the three of us.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sure it Hurts...

2011-05-22T19:17:00.000-07:00

Today, I had to go shopping for necessities, so I bundled up Luke since I'm his only food source, and my mom for an extra set of hands, and Noah and daddy stayed home to cuddle and take a nap together. We bumped into an old friend that we hadn't seen in years, she didn't know much about Noah other than I had an older child. Probably through the grapevine as people talk. I'm sure I'm quite the topic... the girl up the street that went to school with so and so that had a "damaged child"... did you hear? We explained Noah and having quadriplegia cerebral palsy. She was completely un-interested, in Noah. She went on and on about her "normal developing" grandchildren how they run and run and she can't stop them, how they tug at her hair and are busy and into everything that are Noah's age. As my mom quietly says, Noah may never walk. Yet she kept going and going, and said it was great Luke was fine. Some people talk around it. I tried to read in her eyes was it because the topic made her uncomfortable? No. Was it because she didn't know what to say to me? No. It was because her perfect life trumped my non-perfect life. After all how does one go about bragging about a child that cannot sit, crawl, talk, walk or even self-feed? Saying my child is able to roll about on the floor doesn't entitle me to boasting rights like other parents. I used to think I represented a parent's' worst fear, that I'm a prime example of what could happen. So they could not go there in their minds to discuss it let alone comprehend what life for me must be like. But the more time goes on, I just think some people are plain flat out ignorant and insensitive. There are no good excuses for some.

The question everyone seems to be asking: of course Luke is fine. What happened to Noah is not my fault. It is not Chris' fault. It is automatically assumed that just because Noah has cerebral palsy that Luke does too. Cerebral Palsy is not genetic. And it hurts to hear people say well at least you have Luke. No, at least I have both of my children. Both boys. Just because you have a typical normal developing child it does not erase or ease the pains of a having a special needs child. Suddenly you have a normal child and no one wants to acknowledge Noah's existence they only want to ask how the one that doesn't have problems is. It doesn't just make everything all better. I will still grieve the loss of my first born's motor skills, I still will ache for him and all he should be able to do until the very day I take my last breath. Watching Luke do things Noah should be doing is difficult. I want those same things for Noah, how can I not? Luke will grow up attending therapies, and watching his parents work with their older brother, it will never be like most households.

I've continued to struggle to find a way to pay for upcoming hippo therapy for Noah. It's frustrating when I hear other special needs parents spending hundreds to have their nails and hair done, off to the spa, off to the Caribbean for a vacation while respite care tends to their child, still while receiving fundraising funds... all these wasted thousands of dollars that I only wish I had for therapy purposes. I've never had a massage, can't have my nails or hair done, there is no pampering, no vacations in our future. But that is okay. It doesn't bother me, I am not jealous. I don't want those things. But what I do want is the opportunity to help my Noah. And I can't. I would love to be like the rest and have all this extra money floating around plus whatever else fundraising provided. It feels like some of these families are double dipping. If you have the money to go on a Caribbean Cruise then why are you fundraising? Cancel your fancy vacation and use it to help your child. I can't think of the last time I bought a pair of shoes, or make-up, or anything for myself. And I hear the excuses "you need to take time for yourself." What time? There is no time for me. There never will be. My days are consumed with therapies, and tending to a child that is in no way self-sufficient. I don't have the luxury of trying to potty train my two year old, or reason with him over why he can't have a toy, or communicate with him about being sick. I don't have anything that resembles a normal life. Just because a new baby came along doesn't mean life got all lolly... it is still the same hardships it was before, the only difference is there is another beautiful soul to love and a sweet little brother for Noah, a built in friend who won't look at him any differently. Luke, unlike the rest of the world, will see his brother for what he is, not what he isn't because he won't know anything else.

I've learned I can't change the way people respond to me having a special needs child. You can't force someone to feel things they don't, you can't educate them, you can't replace a cold heart for one that beats with love and understanding. Sure it hurts... but there are lots of things in life that hurt. You just keep picking up those broken pieces of your heart and you carry on.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Time for Therapy

2011-05-20T15:05:00.000-07:00

I've been trying to balance mothering a special needs child and a newborn. It's much like probably having a twins, trying to feed both at the same time, soothe two crying at the same time, carry two at same time. Except Noah is much bigger, and harder to care for than a little ten pound baby. Noah is at least able to look at his little brother now without a meltdown which is improvement. Luke of course has adored Noah from the beginning and is just patient and quiet.

I of course have also been on a mission to figure out Noah's therapy. Which is very time consuming. His doctors and therapists have recommended Noah enroll in hippotherapy as they think it will help his trunk and head control more. They recommended a place close to us, which costs $750 for every 10 weeks. And Noah would need continuous therapy there year round. Which added up is thousands. Supposedly DDRC (Early Intervention) pays for hippotherapy but when the center contacted DDRC they said the budget could not help our family at this time. Insurance won't go near it, which leaves Chris and I on our own for funding. I don't know whether to find some type of fundraiser, or grant or where to start. When you are told your child needs it, you just have to find a way... somehow. We meet with the ranch for hippotherapy next weekend to do a meet and greet of the therapists and horses to get Noah aquainted. I really think he'll do quite well, he made a great horse connection last fall at the pumpkin patch and showed no fear and the horses took to him immediately. His doctor even was hopeful that it may even prompt speech to start. Which would be a dream come true.

I've also been trying to figure out a better way to get Noah to be more calm at meal times. He gets overly exicted and his arms just go everywhere, knocking spoons out of your hands, the food gets dumped if it gets too close to him, the dogs are loving it, but clean up is terrible. For the longest time Noah has hit his knees on the highchair tray, so we took it off, I found knee pads deisgned for crawling children, to put on him so we can try the tray again in an attempts that it may help limit some of his arm movements and that he may try to learn to pick things up off the tray. I also found a gadget called the Tumzee recommended by a friend that also has a son with special needs. http://www.tumzee.ca/
It is designed to help Noah with his hands and head in crawl pose. I hope he's not too big to fit into it. I'm also going to try hanging the Wingbo swing my mom got him downstairs to see if that type of motion will spur any type of crawling effort.

Always trying to think of ways I can better help him. I still always feel like it is never enough. That Noah has the potential to get better if I could only provide him with all the therapy and equipment he needs. Noah has been doing well with the Ipad. I've found some great sites that offer free apps on a regular basis, since we cannot financially afford to by apps for Noah. Babies with Ipads, Moms with Apps, and A4CWSN (Apps for Children with Special needs). A4CWSN is having an apps party June 11th at 9am, where you can score lots of apps that you could not otherwise afford. http://www.a4cwsn.com
Everyone that attends the app party is guaranteed at least one app that would cost money to otherwise purchase for special needs.

The Two Angels Foundation 5K walk is this Sunday. I don't think I have what it takes to run after having a baby so soon, but Noah was invited to attend the special needs adaptive dash, which I think he might really like to do. He's a bit older now and his daddy could run him to the finish line in a stroller, maybe next year he'll be able to do it in his gait trainer. That would be fantastic. It is a great cause and I would encourage all those in the area to participate and run for such a good cause: http://www.twoangelsfoundation.org/id17.html
They also serve a light lunch, goodies and refreshments after the race, and it really is a wonderful opportunity to meet other special needs families and children.

Noah is refusing to walk in his gait trainer, I fear maybe I got him the wrong one. He seemed to walk fine in it at therapy that one time and I really thought he needed somewhere to place his hands, where the kid walk did not provide for that, but I see all these other kids his age walking in gait trainers called the Pony or the Mullholland, or even the kidwalk and I start to doubt whether I made the right equipment choice for him. There are so many things out there, how would I know what is the best for him? All I have to rely on is what therapists tell me may or may not work. And now I'm stuck with this Rifton Walker and what if he never walks in it? What if I failed and he needed the Mullholland or the Pony? Now I'm just out of luck because insurance won't fund something else.

Please continue to pray that I can find a way to get Noah the therapy he needs, I'm trying not to stress about how to do it, and just letting God take the lead, it's all I can do, it's kind of out of my hands. I've tried all avenues I know to try.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

A Grandmother's Love (Happy Mother's Day)

2011-05-07T19:47:00.000-07:00

Before Noah was born, my mother loved him. After he was born she loved him even more...

When our lives were shattered with Noah's diagnosis, my mother found a way to hold us all together. We felt the loss of many friends and family members who were unable to cope with our circumstances, yet my mother stayed by our side, and constantly reminded us we were not alone. She has dried the tears that Chris and I both have cried and shared in our small joys. She's hugged us both during some of our hardest days and nights. Encouraged us every step of the way that we were doing a good job with Noah. She never waivers with hope and faith and continues to believe all things are possible. In the middle of the night you can often find her snuggled next to Noah. She comes at all times of the day to soothe a distraught toddler and to help his overwhelmed and exhausted parents. She holds our hands through hospital visits, and accompanies us to all emergencies, even holding her small grandson's hands in an ambulance ride.

Knowing our ability to get out is harder than most, she often shops for us, tends to errands and picks up dog food on her way home from a long day at work. She gets up hours early before work to come assist me in getting my morning started and help with Noah, knowing that it makes her day longer and more tiresome. She gives of her heart and time so freely, never expecting anything in return. When she looks at Noah it is with such intense love, that she sees no physical limitations, she speaks to him when words do not exist. She's learned how to carefully feed, clothe and bathe his fragile and floppy body, and learned to protect his head as he fumbles to find control. She holds him when he's upset and rocks him to sleep so ever gently in her arms. His long body stretched out across her lap, as she holds him as if here were still the tiny baby we brought home. All the while looking at him with such awe.

Noah is never off her mind as she comes home with clothing, and supplies, and diapers for him or toys that might help him with his development, all the while she lets her own wants and needs go to provide for this tiny little person that she adores. She has immeasurable patience for Noah, never getting upset that he cannot do something or requires extra help and attention. Never once has she ever spoken an ill word, gotten upset with him, or given him an unfavorable glance. She is Noah's earthly angel guiding him the best that she can. We are so blessed that she is along this journey with us.

She did not stop mothering when my brothers and I were grown. She's continued to love us and provide for us the best she can even into our adulthood, sticking by our sides always, unconditionally, and without limits. A mother's job is never done, it's never over, it is death do you part. And my mother has embraced her special needs grandchild with open arms, loving him beyond all words. She is amazing, and everything I hope I can be for my children now and always.

My mother has taught me that we are equal in this world and that no one person is ever better than another. She's kept me humble, even when my goals and dreams were soaring in the clouds. She's comforted me during my mistakes, and taught me how to learn from them. She's taught important lessons like "you can catch more bees with honey than vinegar", "patience is a virtue," and "good things come to those who wait." She has demonstrated on giving without receiving as she often gives her last pennies away to those she sees on the streets, is willing to talk to a stranger that has no home or gives a ride to a stranded person in need. I have learned from her example. She has taught me to love thy neighbor no matter what and to find at least one good thing about each person I meet. She has helped mold and craft me into the person I am today.

Without her important life lessons, like "put yourself in someone else's shoes," and "To never judge a book by its cover," I wouldn't have been properly prepared for raising a child with special needs. Because of her I have tried to become a person who is kind, patient, non-judgmental, fair, honest and loving. She's taught me to hold my head strong even when the odds seem against me, she's taught me to stand up for myself and for others when I see wrongdoing. She's given me the confidence and love to continue to grow as a person, to not limit myself in only what I know today, but to encourages me to seek out new personal growth in each day, to learn something new, and most of all to count all my blessings. I give my thanks to her today and everyday for the special person that she is.

"A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts." Washington Irving

With Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah Becomes A Big Brother

2011-04-30T19:32:00.001-07:00

Noah's little brother, Luke Everett Warden arrived on April 11, 2011. Chris and I had decided to keep news of Noah's pending sibling private until after his birth, and celebrate the arrival of new life once he came. Luke is a little miracle of his own, surviving a car accident with me last fall. God has a plan for everything and he wanted Luke here. Noah isn't quite sure what to make of little Luke yet. But hopefully with time they'll be the best of friends. From the moment I looked at Luke I had this little voice almost say, he's your little lion, he will be here to help Noah, to protect him to guide him. So that's what I call him my little lion. Not to mention that he has this blond hair, a surprise to both his daddy and I.

Luke Everett Warden "Our Little Lion"

I must admit my emotions are running high. I feel so blessed to have both boys in my life, yet I significantly twinged when I witnessed Baby Luke being able to suck on his fingers and hands at only four days old, something that Noah cannot do at nearly two and a half years old. There are obvious differences between the two babies I have brought home. And I suppose I fear Noah's future more now than I ever did before. I had nothing to measure it against. Now I see exactly what Noah should have been doing at this tiny age. It's so bittersweet, but I feel so robbed of Noah's babyhood. I had no idea that babies ate and went to sleep, I only knew a fitful distraught baby that never soothed to anything.

We saved Luke's cord blood and tissues with the hopes that someday we'll be able to use them to help Noah in his recovery. A very expensive task we took on to store these stem cells, yet we felt that we couldn't just throw this potential opportunity away for Noah in the future. It may make a huge difference in his life one day. This is something has significantly put us in even further debt, but I figure it can't get much worse than where we are, we basically have nothing anyway. And I thank goodness that there was one last open charge card for such a thing. We really have no idea how we're going to pay for it, or even the annual storage fee, but we felt like we couldn't let this opportunity to pass us by if it could indeed help Noah. They are currently doing sibling stem cell trials for cerebral palsy and expect clinical trials to be over in two years or less. Luke's tissues provided 855.40 million cells that we could save. And I pray with every ounce of my soul that someday somehow, Luke will have provided the medicine we needed to change Noah's life. What an amazing thought that a younger brother could make such a difference in his older brother's life.

Noah is doing much better with his illness. I think we are over the worst, yet I am watching him, guarding him, to assure that he doesn't have a relapse. He's on a second round of antibiotics, since it's a bit harder for him to clear his lungs than children that are mobile. I'm sure the days ahead will be a bit stressful as I figure out how to balance two boys, both that are not self-sufficient in anyway. I've had to put therapies on hold because I know that I cannot get both boys to therapy on my own, I have no help. Chris and my mother both return to work, and there is only me. God must have a plan, and I hope that he tells me what direction I'm supposed to go in. I feel a bit like a fish out of water - Just taking each day as it comes it's all I know how to do. It's all I've been able to do for the last two years, and I continue to ride this roller coaster called life. Mine isn't easy. Maybe it never will be, I don't know. But I'm still hoping God shoots those special arrows my mother was telling me about, those special arrows that come with just a little help to assist me along the way.

There is no doubt that things will be difficult, but it is my hope that there will be far more joy on the way. I'm hoping that little Luke will help Noah in ways therapy may not be able to. It's like I'm experiencing this completely high joy from Luke joining our family, to this really high low looking at Noah feeling the loss of all his motor skills, a helpless mom as I watch on as he simply can only lay on the floor and look up at me and smile. I long for God to help me now more than ever. Please help me heal my Noah. Please grant us all some sort of a resemblance of a normal life, please just give us an easier path, please hear my prayer. I keep asking, and asking and asking some more. Noah is the most precious little boy ever. He lights up dark corners of my days with a smile and laughter so big, he is so deserving of the blessings to be able to walk, and talk and sit or even crawl. I long to watch both my boys run together someday side by side. Please God let it be so.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Still Sick...

2011-04-08T20:25:00.000-07:00

Noah is still struggling to get better. His cough is now pronounced, although not tremendously frequent. His appetite has been affected, he looks droopy and sad, sometimes I can catch a short smile or laugh in between the cries and moaning. I understand that he is sick, but I can't understand what he wants me to do when he cries. He can't tell me if he's uncomfortable and needs to sit, or lay down, or if he's hurting. I feel like I'm grabbing at straws, as is Chris and his grandma. All three of us taking turns trying to get Noah back to a good spot. I got him to eat cheesecake, he'll drink bottles really only for his daddy, and then there's nothing like falling asleep in the comfort of your grandma's arms. The fever has stayed down, I just assumed Noah would be more perky by now. I worry about him, hoping that pneumonia is all we're battling. They've checked his mouth, and ears and all... but I always worry what if there is just something else I am missing. This is truly a hard spot to be in, harder than I thought it would be when the time came. The lack of communication for me breaks my heart. I want so badly to talk to him... Even with Chris' help I'm down to mere hours of sleep, I cannot stop thinking about Noah and clinging to every sound on the baby monitor, counting his breaths to make sure he's receiving enough oxygen. Making sure I have a phone nearby should I have to place another emergency call for help. I of course am too still battling this illness, the same one I probably gave to him as much as I tried not to. He loves the taste of his antibiotics, which is great. We have no battles over taking medication. In fact when it's done he even gets a little mad that his dose is over and protests briefly. Like I've just taken away his cotton-candy treat. I worry about him not being able to clear his chest and cough things through like other children his age that are mobile. Without us he's stuck laying on the ground continuously. I'd feel so much more at ease if I could see signs that he was completely improving, but just like me, I'm sure this will take him a while to recover from. My hopes are that he'll battle it off quicker than I have been able to. I could tell Chris was a little sad over dinner tonight, he tries really hard not to dwell on Noah's condition, but it's hard to realize that this will be life-long for Noah and for us. He mentioned he'd do anything to make Noah okay and take away all his problems. And he would, this excellent father with an amazing heart would do anything... just anything for his "little buddy." As I write, they are currently snuggling together. As I can hear Chris whispering in his ears sweet nothings in an attempt to help soothe him to sleep. At the end of the day we don't have much, but one thing we're not short on is the love we have for each other. "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." — Christopher Reeves Love, Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

104.4 Happens... and then you Pray

2011-04-06T19:30:00.000-07:00

I knew I couldn't dodge it forever, I wanted to, oh God how I wanted to for safety's sake. The idea of a seizure is beyond terrifying. Noah developed an illness. He didn't look sick, didn't really act sick. But I knew something was wrong when he didn't laugh at the television and acted really lethargic all day. He was hard to wake from a really late nap, which was completely uncharacteristic for him. So I asked Chris to dig out the thermometer out of our hall closet that I stashed way at the top just in case. Sure enough temperature reading of 102.9 at 8:30pm. My stomach sank. These things always seem to happen at night. So off to the hospital we went in the middle of the night. Noah showed no signs of congestion, so I didn't know if this was an infection or what I was up against. They took his temperature when we got there, and it had decreased by mere points. They finally were able to get a normal reading two hours later, and after a strep test, ear check and xrays it was determined that Noah had developed pneumonia. I was surprised because there was no cough to accompany it, but maybe I caught it so quickly there wasn't a cough to go along with it. We were relased of course at almost 2am in the morning, leaving Chris with only a few hours of sleep to function on. Noah's grandma came with us, as we needed all the hands we could get with an ailing Noah. He's getting so big it takes multiple people to hold and pass him off to. My little village of three...Chris, Grandma and I. They couldn't send me home with medication so I of course panic when Noah wakes up this morning with a temperature of a 103. 1 and rises to 104 within twenty minutes. I called Noah's grandma to see if she could find any place that was open to get Advil or Tylenol. And to fill his antibiotic prescription for me as Noah is too sick to leave the house like this. Of course off she went, even though it left her late to work. When something is seriously wrong with Noah it impacts the whole family in big ways. No one really understands, we don't have respite, or a nurse or nanny. We are it. And Noah isn't just a typical child with an illness. This is the first time I truly wish he wasn't non-verbal. Just be able to tell me what is wrong, he doesn't have to say mamma or dadda, just where does it hurt? Where do you not feel well.... I've gotten Noah's fever down to 102.1 for the most part of the morning and then he just spiked suddenly again to 104.4. His primary care physician said that they thought I should take Noah straight back to the hospital and so off we went again, as I called home the troops since they said we could be staying. The thing about ER visits is there is nothing quick about them. You wait and wait and then wait some more. The verdict is still that Noah had pneumonia and that we will alternate tylenol and advil every three hours to attempt to conquer this fever. And of course at the hospital Noah exhibited his first signs of cough. I probably won't sleep for days now as I watch over him praying that God spares him from seizures and allows me to get him well. I wish I could have post-poned this day longer. But you just can't control every little germ on earth no matter how hard you try. And I've tried hard for 27 long months. I've worked so hard to make sure he stayed as healthy as he possibly could. We are very tired, as we've spent more time at the hospital these last two days than we have slept. It's been a rough week for Chris and I. Please pray that Noah will conquer this quickly, and that seizures continue to stay away. He looks and acts so miserable and I just want to see him eating and smiling back at me again very soon. Love, Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Gait-Trainer Has Arrived

2011-04-05T10:17:00.000-07:00

Noah has had a good week, he seems to be really enjoying his new Organic Pedia Smart, and I was lucky enough to score Medicaid assisting us with purchasing it on a regular basis through a local nutrition company. I wish they'd help with his pureed foods and such, but it sounds like we're on our own until he hits age five or is on WIC. I caught a cold, my first in years and I've been petrified I'd pass it to Noah. I'm so thankful for Chris and my mom's help. I don't know what I would do without them, they make trying to guard Noah from this germ a lot easier. I of course have scrubbed my skin off to no end after every kleenex use, trying not to breathe in his direction and am chasing all door handles and anything I can think of in the house with disinfectant toilettes. Nothing paranoid about me, but I know that if Noah gets sick it would be a million times worse for him that it is for me... not that I'm a bit happy about feeling as terrible as I do. But I'm in way prepared to fret over seizures, and an illness for him. Noah got his gait trainer today. A Blue Rifton Pacer. The verdict is still out. It's new. I don't know if he knows what do to yet. It will be a work in progress. And maybe when the weather gets nicer we can get outside and use it a bit more. We don't have a lot of indoor options with our current set-up. His head and trunk control still lacks so he kind of drapes himself over it and doesn't push off with his feet at all. He kind of looks like a limp rag doll. My heart ached for a bit. Not because he didn't automatically take off, it's just getting used to the idea that equipment like this is even necessary for him. This certainly isn't the dream you have for your child to be strapped to all these gadgets and apparatus. Noah also got to trial the cuddlebug. It's purple, but at least it's not pink. It weighs about 45-50lbs, not so cool. And it doesn't collapse down well to get it in and out of vehicles. Those seem to be the automatic drawbacks. And even though it has a sun visor I wish it were a little bit bigger as it won't catch as much sun as some of his stroller canopies do. I like that it's soft and squishy, I think Noah does too. It really feels like you're setting him in a big pillow. It's been crash tested, travel approved, and can also become a seating device. It does look slightly handicapped. But in a way it also kind of looks like a really fancy stroller. Noah seems to like it. He certainly didn't complain at all. We'll have to try it out now for walks or at stores, get a feel if it's a good match. The drawback is if we do really like it, Medicaid will not pay for it. The rehab company stated since they already gave Noah a non-returnable Kid-kart that he hates, that they refuse to purchase a new one for him (even though that purchase was nearly two years ago), Medicaid's position is that the kidcart could be modified as he grows. I asked what our options were and it basically it's to find an outside organization somewhere willing to purchase it (i.e. a church donation). And I keep thinking how am I going to swing that? Somedays you feel like you're begging for help because you don't know what else to do. Our pride and feelings of being self-sufficient were taken from us a long time ago. It's such a hard position to be in. You hate having to ask for help, you really do, it makes you feel like you're nothing. Like you're not mere inches tall as the world looks down on you, waiting to swallow you up as one of "those" that is weaker. Please continue to say a little prayer that Noah can dodge this germ that I'm carrying. And that he learns to stand up in his walker, it would be nice to see him take some steps someday soon. Love, Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's New Gadgets

2011-03-27T10:05:00.000-07:00

Noah has had a pretty good week. It was slower than usual for our schedule since some therapy was on spring break this week. Noah and I just watched some of his sprouts grow that I tried to germinate in the house prior to making them fend for themselves outdoors since our nights are still a bit too cold for baby spud survival. I got him a new toothbrush kit, which I'm totally in love with. I wish I had found it months ago for him. It's a vibrating toothbrush and gum stimulator. It doesn't vibrate back and forth like you'd think an adult tooth brush would, but gentle vibrations rather as you brush traditionally. I think it totally makes the need for any Nuk gadget obsolete. Noah actually chases it around in his mouth with his tongue which I have to believe is good exercise for both oral eating and potential speech. But I highly recommend it. I'm very impressed with it. The only draw back is that they don't sell replacement heads yet for the toothbrush, even though it comes with one spare, after that you'd be forced to purchase a brand new pack.

I also found another really cool gadget. It is a soon that screws onto the top of the organic pouch foods, made by Plum Organics. The dispensing soon is fantastic for traveling with. Most children Noah's age could just squeeze the pouch full of food themselves, but since he physically can't do that yet, this attach-on spoon makes it so much easier to feed him in between appointments and therapies, or even at home. I still try to Vitamix what meals I can for him, but realistically we're still dependent on baby food, even though the cost for us is much higher than it would be for most families since Noah cannot eat solids.

We also switched Noah from Pediasure to Organic Pedia Smart. It comes in Vanilla and Chocolate and he seems to really enjoy it. It does taste different than Pediasure, but I think in a rather good way. I'm really excited that he's taking a liking to it, as the ingredients are a lot better for his health long term, and he still isn't a child that will drink juice or plain milk no matter how much I try to encourage it. I'm sure he will eventually, but like with everything with Noah it is just super slow.

Noah seems to be enjoying his newly decorated room, minus the fact that we can't get his stickers to stick properly to his wall. That's really what you get for trying to decorate on a shoe string. Creatively I'm currently trying to figure out ways to get them to stick better without making them permanent like wallpaper. So far I've found that the Creative Memories Scrapbooking Frosted Photo Splits are doing the best job. But just as you get one to stay up, another one falls.

Noah's gait trainer is also destined to arrive April 5th. I'm guarding my excitement as I hope he'll walk in it, but I don't know for sure. I remain hopeful that he'll find a way to walk in it and really have a mobile opportunity during the summer months when we can take his walker outside. I think we only have a couple of neighbors that know that Noah is special needs, so I'm sure as we walk around the block we'll have lots of questions since in a stroller he looks pretty much like an average toddler. There won't be much room to use the walker indoors due to our house design. Please continue to say little prayers that Noah continues to grow stronger, and that with each day he finds more freedom in movement. That he will find a way someday to walk and talk. Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Happy St. Patrick's Day

2011-03-17T13:34:00.000-07:00

Spring is in the air, I can smell it and hear those delicate birds that seem to appear right at the sign of better weather on the horizon, and my rock garden is starting to come alive, baby crocus blooms already risen, just awaiting their tulip companions next to them. Which means I'm that much closer to planting Noah's special garden.

I already planted him some tomatoes, sweet peppers and herbs in the house last weekend. I pray they grow, I'm not great with seeds, I do far better with starter plants, but it was really important to start something from seed this year to me. To watch it grow, and help and nurse it along until it gets healthy and strong and ready to pick. I put Noah's feet in the dirt while I was planting. It didn't go so well, the soil was so soft out of the bag that I think he felt like his feet were sinking and disappearing. I keep trying to open his world to new sensory opportunities, but it was just too much too soon. He cried for a half an hour after wards and I felt terrible that I had tried to offer him a new experience that he simply wasn't ready for.

I found a really great deal on soil, Chris had to travel some distance to retrieve it, but it was nice that we got almost a $4.00 discount per bag, which is great when you're after organic certified soil with very little funds for projects. Chris came back and had to tell me that some soils even contain bat poop, like it was an important fact I needed to know right away. It sure gives a different meaning to what my grandmother used to call chicken high-high. I guess she would have called that bat high-high? In any event, I also found a sign that will read Miracle Garden on a stake that I can put in Noah's little garden. I think it will be the perfect little accessory. The garden will get lots of sun, partial shade and fabulous moonlight.

I also got confirmation that Noah's gait-trainer has finally made it off of suspended status and was approved. Yes I know I was ready to fall over myself when I got the call. I don't know if I'll be as lucky to get that news with a stander or new chair. Noah has also had his weighted blanket about a week. http://www.affordableweightedblankets.com It makes him really hot, so we had to pack away the feeted fleece jammies, and opt for the cooler spring line. I can't say it's really made a huge difference in his sleeping patterns, but he doesn't hate it. But come summer we won't be able to use it at all since our home has no air conditioning and a window unit is not an option in his front facing room. We all roast sleeping on the top story of this home.

Noah's Weighted Blanket

Now that Noah is getting his gait trainer I suppose I need to look into finding a way to make the house a little bit more handicapped accessible. I really don't know where to start. I guess I see us a bit stranded. I anticipate there is no organization out there that covers the entire amount to come in and put in new floors and get rid of your carpet, and Chris and I don't have two pennies to rub together for such an endeavor, we're just doing the best we can to maintain a roof over our heads and get Noah all the therapy we can.

We also re-decorated Noah's room with little wall stickers and I think it turned out really cute. Noah seems to be calm in there when I change his diaper and clothes so I think he in his own way understands it's his space. I wish he had the ability to come and go and play in there as he chose, but he still spends the majority of his day on a blanket in the family room with me watching TV and doing therapy. The summer gives us a little bit more options because I can take him outside and lay him on his therapy mat and he can watch airplanes go by, watch for butterflies and hear the birds chirping. He also loves to watch the leaves move on our neighbor's massive tree.

Noah had a great St. Patrick's Day, (he gets that from my side...) He sported his green, even ate his Ella's Organic Kitchen Apple, Rutabaga, Spinach meal for lunch which even looked like liquefied shamrocks. He did well at pool therapy, he wasn't as grumpy today. Some of his therapists have encouraged me to explore a local hippo therapy place and cranial sacral therapy to assist Noah in his continued struggle to gain head and trunk control. http://en.wikipedia.org/wiki/Craniosacral_therapy However it doesn't matter if a doctor, or a therapist recommends any and all of these things, as insurance won't help us pay for it. That's such the tough part. You have experts in their field advising you to attempt these therapies, yet you can't afford them out of pocket. It lays heavy on my heart a lot. Because it gives you that inner failure feeling. His therapist gave me all the brochures on them. I haven't sprung it on Chris yet, as I'm not sure he can take much more, he's financially doing his very best to provide for his family in all the best ways. And in his heart I know he wants all we can do for Noah too.

I also researched this little place in Florida that does dolphin therapy.
http://www.islanddolphincare.org Although Noah is too young for it now, and lacks the head control I think he would need at this time. I envision that if Chris and I ever lucky enough to leave home it will be to some place for a type of therapy to help Noah. I most certainly don't see Hawaii, Italy, or New Zealand in our future. Nor do I think we'll get to experience typical vacation family spots. Special needs is life altering, and it alters every single thing in your lives.

Hopefully Noah will take a nap before the corned beef & cabbage dinner is ready, and we'll have a quiet night at home working on vestibular motion and occupational therapy brushing for tactile sensory stimulation. Just a another day in the life...

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

"The Label"

2011-03-09T20:17:00.000-08:00

Noah received his official cerebral palsy diagnosis this week: quadriplegia.

I know it's just a label. I'm sad that Noah will carry any type of label no matter what the verdict would have been, but at the same time I think I've done well not being crushed by the type of cerebral palsy. I've had two years to know that eventually a official label would follow. I admit I had hoped it would be diplegia or even hemiplegia. Somehow I had convinced myself that Noah's chances at sitting, crawling, walking and talking would be greater with either of those two. But it's just a title, a name, a word. It shouldn't define Noah's chances. I just have to keep reminding myself of that. That this does not mean that Noah's reached the end of all he might ever be able to do.

Noah had occupational therapy today. I was a bit disappointed that we were supposed to look into a stander today, although the equipment specialist did not show even though we had this date calendared for at least a month. No status on his gait trainer, no status on the cuddlebug that I was assured would take two weeks or less for us to see... I'm a bit disappointed that I feel like the ball is getting dropped once again. Which means more phone calls to make to see if I can get it all coordinated on Noah's behalf. Noah did well at therapy today. He still very much likes his swings and of course I have to take his portable TV along for a distraction. It's almost like his security blanket. It helps him block out other things he can't handle. He only gagged once at therapy today when he was touching the rope to the swing.

We also broke down and purchased Noah a weighted blanket. It arrived today. It's a rather small blanket for being $80, but they are all custom made for each child, and Chris and I are praying that it agrees with Noah and helps with sleeping hours. There are so many other things we need to purchase for Noah, this long list is growing and none of it insurance will go near. He uses this special life jacket with a hood at pool therapy, that we need to order, along with a nemo floaty (which I happened to spot at Target but didn't price). I know the life jacket will be a special order item. I'm trying to get Noah to drink from a sippee cup, but we haven't found one yet that is agreeing with him, and he doesn't want to drink sitting up, he still prefers to be laying down with a regular bottle. He also did really well with handicapped paintbrushes and things in sensory class, things that I don't have at the house to practice with. Things that seem small but that add up to hundreds very quickly.

We looked into litegait training, and our out-of-home therapy center no longer carries it, and families are renting them in home. However that is not an option for us. We cannot afford the $350 monthly, the $250 shipping and the $200 deposit. Not to mention we don't have a therapy treadmill to accompany it. Even if I could find a way to get the money, it sounds like a type of therapy that would be best supervised with a professional. So that one will be going on the back burner.

Noah has also given me the potty lip lately, a prelude before the cry. Which is new. Oddly many have asked me this week if I think Noah is cognitively on target for age two. I don't know. He has no words, no way to play age appropriately. I'd like to think he's just locked in physically and understands it all, but I don't know. I know that with quadriplegia they say there is a higher likelihood of mental impairments that also accompany the physical. I'm just trying not to think about it much. I don't want to overwhelm myself with emotions or thoughts of things that I have no control over. I just have to turn it over to God for now. The worry is exhausting and can even be paralyzing if you let be.

Chris built Noah's garden last weekend. It is exactly how I pictured it to be. Now I am searching to find some OMRI Certified Organic Dirt to put in it, so I can start his little seedlings. And hopefully I can make a little sign to hang from him garden titled Noah's Miracle Garden.

I've been so busy with Noah's appointments that I totally forgot that I needed to think about giving up something for lent. I received all these emails (late) as my computer has been down for sometime, with declarations of intentions for lent. I remember the days when I would give up buying a pair of new shoes... the days when things were beyond easy. I received an email from a friend who also has cerebral palsy declaring they had already given up everything; the ability to self-feed, dress, bathe or care for themselves, asking what more could God expect them to give up? I understand that feeling.. when you say how much more. As I grow older, and travel this special needs journey with Noah I see things differently than I ever did before. For me it's not about giving up chocolate, or my favorite latte, or quitting sweets or not eating white bread... to me it's a time to think about Heart, Soul, Strength and Mind. It's a time for reflection. To spend more time thinking about where I am with God emotionally, to think about spending ten minutes more a day in prayer, finding the strength and courage to persevere, closeting the tears and the pain and finding more faith, remembering to be a person that comforts others in times of great need. Giving up one desire for lent isn't going to bring me any closer to God... but hopefully a collection of other things will. No matter what God is always there, no matter how much I worry, stress, cry or fret over Noah he holds my hand through my day. I feel this silent encouragement, I am trying to listen for I need all the wisdom I can gather.

A Lenten Reflection
Give up complaining——focus on gratitude.
Give up pessimism——become an optimist.
Give up harsh judgments——think kindly thoughts.
Give up worry——trust Divine Providence.
Give up discouragement——be full of hope.
Give up bitterness——turn to forgiveness.
Give up hatred——return good for evil.
Give up negativism——be positive.
Give up anger——be more patient.
Give up pettiness——become mature.
Give up gloom——enjoy the beauty that is all around you.
Give up jealousy——pray for trust.
Give up gossiping——control your tongue.
Give up sin——turn to virtue.
Give up giving up——hang in there!
unknown

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Cerebral Palsy Awareness Month

2011-03-01T08:07:00.000-08:00

Cerebral Palsy Graphics

We completed the last class of Noah's sensory class for a while. He was a bit cranky today, but had moments that he seemed to be willing to sit without arching. Nothing like trying to hold a twenty pound two-year-old as he spring loads backwards faster than a malfunctioned toy! But he doesn't have a lot of ways of communicating and arching still remains one of his "hear me now," I'm mad techniques. I'll miss the moms and the kids. But I know I'll still see them periodically here and there. We all have some heavy lives and we come together for one hour a week, trying to better our children in some way. We have unspoken emotions that each understands, expressions on our faces that are so familiar from one to the next, exhaustion levels that seem to be endless. But each of us keeps going with our special needs kids.

I'm hoping the weather stays nice so Chris can help me build this garden I have brewing in my head. There's lots of things that seem to be brewing these days. Thoughts I keep categorizing in these mental folders because I don't have the time I need to nurse each and every thought at the same time. Things that might benefit Noah, things that we know he can't handle at this time, things we hope are available in the future for him. I never stop thinking about how can I make it better for him - easier.

March is Cerebral Palsy Awareness Month. I hope that each of you that come across Noah's blog whether you are directly affected by Cerebral Palsy in your own lives or whether you just come to read and support our little Noah and others like him that you will take time to remember that each special child or person with Cerebral Palsy not only this month, but always. I pray and hope someday there will be a cure, someway that we can heal the brain. It's not about accepting things as they are, it's wanting an easier future and life for all those that are challenged by this.

You can find some really great Cerebral Palsy Awareness gear and clothing at:

http://www.zazzle.com/cerebral+palsy+awareness+month+gifts

http://shop.cafepress.com/support-cerebral-palsy-awarness-month

Cerebral Palsy Graphics

(Remember to mute Noah's Music on the Right to watch video)

I will NEVER give up Hope on my little Noah. Believe... Miracles do happen to those who believe in them!

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Digging in the Dirt

2011-02-16T10:26:00.000-08:00

Noah had his second to last sensory class yesterday. He did pretty well for the most part, except that sensory gag reflex was in full force. He just gags when he's overwhelmed. And the class just keeps getting bigger and bigger. I couldn't detect much wrong with additional one that came yesterday. She was speaking multiple languages, running around and looked absolutely perfect at age two. A far cry from my little Noah that can't sit independently and can't utter a word. The daddy that brought this little girl seemed to be almost flaunting how wonderful his little gifted prodigy was. I'm not sure if the other parents felt it or not, but I did. I don't think he even took the time to really look around to see what the rest of us were facing. He had his blinders on. But you can't open everyone's eyes. Not everyone is going to care about your difficult plight. Not everyone is going to see Noah as a "person." I do really wish though that all these parents that are so desperate for their children to read at nine months old and walk by six months, would realize that your child doesn't have to be the best and the brightest. Can't you just let them be what they're to be without placing this gifted and talented perfection syndrome on them? I can't imagine that is really a turn on even for parents with other typically developing children. My little Susie is brighter and better than your Johnny? What is that teaching our kids?

Noah and I are looking forward to pool therapy this week, we hear the pool got a tune up and is extra warm this week. The warmer it is the better Noah does. I have spring fever, and am anxious to plant Noah a special garden that I have all planned out in my head. I ordered him some organic seeds from a local nursery that were really reasonable, and hope to add them to the Vitamix to make him some yummy homegrown food during the summer months. It's really funny that it took me until my middle twenties to realize that Jello was not FDA approved and made from crushed bones, and until my early thirties before realizing that non-organic seeds were treated with formaldehyde, fungicides and disinfectants. All the things they just don't tell you...

I really wish I had a bigger yard, I have the planting bug in a big way all of a sudden, I want to grow apple trees, a weeping peach... the list is really endless. But there really isn't room for all these plants in our tiny yard. So a little garden for Noah will have to work. I already have a little garden with miscellaneous things that I call the "Victory Garden", maybe I'll call Noah's companion garden the "Miracle Garden." It sounds rather sweet, and completely Noah. Hopefully Chris will help me with this project that I have stewing in my thoughts on a warm March weekend. He thinks I was kidding when I mentioned it the other night, but little does he know I'm quite serious about this little garden! Noah can help and get his hands all dirty, play in it with his feet. It will be all his. Better than a sandbox that he can't play in I think. We'll watch things grow slowly together. Maybe I can even help him pull his very first carrot out of the ground.

"You can bury a lot of troubles digging in the dirt."
~Author Unknown

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Happy Valentine's Day

2011-02-14T09:55:00.000-08:00

"Above all else guard your Heart, for it affects everything you do."

PROVERBS 4:23

Sometimes it feels like my heart is all that is left of me. A simple shell of a person that has only a beating heart, that cares beyond all measure. Valentine's Day in the world of special neeeds takes on quite a different meaning. I'm sure it was intended to always be a lover's holiday. Even the sweet lady at the grocery store the other day was joking she calls it "Singles remeberance day." And declared she was going to blast Beyonce's, All you Single Ladies song all day long. We all attach our own meaning on it. But regardless it surrounds the thought of love.

I baked Valentine's Day cookies yesterday, it was the first time I ached for Noah's participation in the kitchen. He should be at the age now begging me a for a cookie, clinging to my leg asking if he can help me. These cute little cheap ready-to-bake cookie hearts with be-mine messages. He lacks the ability to even nibble on one. Yet I baked them anyway. Why? I don't know. To feel "normal" maybe. Because that's what other moms are doing. Baking goodies for their children to take to class, helping them fill out cute little Valentine's for classmates. Life can have such bittersweet moments.

My heart is so full of happiness that Noah is still here with us. Against all odds he is here. He is the ultimate Valentine. He is better than any box of chocolates, any Hallmark card, or fifty dozen long-stemmed fire and ice roses. By: Terri Mauro
http://about.com

http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/Youaresloving.htm

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

You are Strong

2011-02-13T18:34:00.000-08:00

"How often has it happened -- an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you shake your head modestly, and brush it off, and maybe even feel a little condescended to. But you know what? They're right. You're strong. You're facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be so strong. But appreciate that strength now. It makes you special. Capable. A force to be reckoned with."

By: Terri Mauro
http://about.com
Love Notes for Special Parents

They say time heals all wounds. I don't believe it. It doesn't. Who ever came up with that expression ought to be slapped for giving a false sense that all things heal. Chris and I will never be the same that we were two years ago, my family will never recover, my child will always be physically impaired. Everyone says you find a "new normal" I don't want a "new normal." I want it how it should have been, until everything was yanked from under us. How many parents have to run to therapy almost daily? Not many. How many parents have to worry about germs and carry lysol rags everywhere they go as if they have verminophobia only to protect their child from an illness that could compromise his safety and health? How many parents have to worry if they'll get two more days or twenty more years with this precious soul that has all these special needs? We have no choice but to be strong, there is no other alternative. We cannot and will not ever give up. Faith, love and hope always.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Modification Attempts

2011-02-08T15:11:00.000-08:00

Homemade attempts at a bath chair

The quest is still on to find ways that Noah will learn to love a bath without his toddler tub. The manatee just isn't working no matter what I do or how I force it on him. Then Chris and I spend gobs of time trying to calm him down after his bath in order to even try to go to sleep. I dismantled one of his highchairs that we tote to various places and sit him in occasionally in the family room. I stripped it off all the metal, the padding and reclined it. I thought I had found the perfect fix. But Noah was still unsure of it and it slid all over the bottom of the tub floor because it doesn't have suction cups. So Chris rushed to Target and got a bath mat, and we're hoping that helps the cause. I really would love him to enjoy a bath like other kids, to be able to play with toys or push them around or even swat at them with his feet or hands.

I also purchased him a toddler indoor swing from especialneeds.com. I thought it would work. It has a five point harness, however the straps cut into the sides of Noah's neck because they aren't soft, and he still wants to lean forward and sideways. Chris says we should keep it, that Noah will eventually learn, and in my mind I'm still trying to find ways to modify it so it will work. I hate feeling like I keep failing at equipment for him. On the brightside however, a Convaid representative has been diligently attempting contact with the equipment vendor we've been going through. It sounds like if I'm patient that a cuddlebug trial may be in our future. So far he's been unable to make contact with them, but I'm still hopeful they'll make a connection soon and that we can try something that has the potential of working for Noah.

The weather has us cooped in again this week. No sensory class today, and no pool therapy last week. And his therapist got stuck on the way to the house today, so no therapy today either. At least we had a miniature break in the weather for one day and were able to get together to celebrate my birthday with my mom and Chris. We had to sing happy birthday three times because it gave Noah the giggles. Maybe someday he'll be trying to sing along. He certainly loves birthdays. It's a combination I think of the candles and the singing that he seems to enjoy. Noah also loved the fleece pajama pants that his daddy gifted me with. We placed them on his lap on his highchair and he clung to them looking down to pet them occasionally. I think he liked the fuzzy feeling of them. It was cute. Anything that will trigger a positive sensory response in him is truly wonderful.

Chris and I have also decided that it's time to redecorate Noah's room a bit. He's no longer a baby. Even though his skills may very much make him look like an infant, he's simply a toddler. And a change of scenery might be nice for him. Noah has latched on recently to Blues Clues, and seems to have put Elmo on the back burner. Blues Clues is a little harder to find because it's no longer being made, but I was able to find some cheap stickers to throw up on his walls and some curtains that were on clearance at Target. Noah won't mind that it won't be fancy and elaborate. It's just time to put away the baby decor. We hope to make that our spring project, Chris and I are slow to get things accomplished these days. There never seems to be enough time to do all we need to. We want to make sure the room stays simple. We aren't going to paint the walls a color or do anything loud, as I think it would be overwhelming for Noah sensory wise, not to mention financially something we can't do. He can't focus on things that are overly busy. He needs simple. And everyone needs a "zen-like" place to sleep. Noah has also outgrown his baby changing table. I researched pedatric changing tables, and without surprise they are in the thousands! I found a really nice one by Sammons Preston with drawers, and doesn't look like a doctor's table that you attach to your wall. And I bet a million dollars that Medicaid won't go near it. I don't even know if I could score that on appeal if special needs children can't get beds approved how on earth would I even think I could get a pedatric changing table approved? And the list of things that Noah needs just keeps growing...

"Sleep is an Art" (That Noah has not learned).
Unknown.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Year of the Rabbit

2011-02-06T15:12:00.001-08:00

February 3, 2011 marked the start of the year of the Rabbit on the Chinese calendar. A year that is believed to bring quiet, positive and inspiring things. I survived the year of the Tiger, and is certainly had it ups and downs; a car accident, social security modifications, medical bills, you name it there was something falling to pieces at least three or four times a month last year. I love fresh starts. Even if we convince ourselves that they are such. It opens your intentions and subconscious to possibilities. Doors open that you may have not realized were there, you have renewed perspective faith and hope. A new found energy comes over you. And suddenly you say to the world I can do this, tomorrow might be different, but today - today you can do this! And then you cross your fingers and your toes that all that positive energy that you can gather will somehow filter to the sweet little one in my life - Noah. That he will feel all things are too possible for him.

I've spent some time reading new blogs this week, new amazing challenges, families facing what seems to be the impossible. The fight between life and death for a child that is a reality for many of us. You question sometimes is it better to put it all out there, to expose yourself in your most hurt, dark and painful moments. How will our words be taken? Will they be digested and dissected into a million pieces? Will we find words and comments of comfort or face heavy criticisms? Will our words be twisted and used against us? Are we better off remaining silent? Are we even helping the world at all by sharing our lives, exposed and raw? We network with other parents, talk to others that have children similar in special needs and conditions. We hope to give hope and inspiration to those sitting on the sidelines, serving as example that you too can rise above some really difficult times, to demonstrate there is such beauty underneath a child that cannot speak, or walk, or sit. At the same time we do crave and need a certain amount of support to get through the day. And some days we're a bit easier to knock down than maybe the next person. But we continue to get up and dust ourselves off regardless and move on because we know in the end we're advocating for the most precious things in our lives.

I stumbled on this poem titled a Litany for Survival in touring a blog. I've read it four times now, including this post. Thought about it, considered it, and it spoke to me in a different way each time. Like this layered message. I am one that can no longer indulge in the passing of dreams of choice. It took only one life altering event, and I feel robbed of them. Like they were stolen without warning. My dreams are no longer my own, they exist only for Noah. I do reside and live with fears. Many of them. Fears for the future, fears for safety and quality of Noah's life, fears that the world will be unkind to him or us as a family, fears that someone will stumble across my blog and dissect into a million pieces when it's intent was just merely to offer support to others, describe what our life is now like, and share with the world this beautiful blue-eyed little boy that survived against the odds. But as the poem suggests:

"and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
remembering
we were never meant to survive"

It is better to speak, and not be silent. As special needs parent, I don't want to close that door. I want everyone to know what this is like, I want to share Noah's story, for better or for worse, I want to offer hope, or let you share in our sadness or joy. There are so many beautiful blogs out there filled with inspiration, hope, love and faith. And most importantly God. Regardless of the scrutiny the medium of a blog offers, the fears that somehow your words will be taken sideways or backwards, or misunderstood. I commend all that are brave enough to do it. That put themselves out there to suffer any potential scrutiny. We make ourselves vulnerable and find ways of such expression that only we can bring in sharing special needs with others in the community. We should not be silent, for most of us we are our children's only voices. Their journeys deserve to be told. Our lives shouldn't be hidden in the closet like a disease trying to be contained. God would indeed want us to share our special children with whomever came across our blogs. There could be someone out there needing a message in something they read in a blog. Whether that be advice, help, support, or information on equipment or therapies. That is what it should be all about. Don't be afraid to write, don't remain silent, our children are counting us to be that voice.

A LITANY FOR SURVIVAL
For those of us who live at the shoreline
standing upon the constant edges of decision
crucial and alone
for those of us who cannot indulge
the passing dreams of choice
who love in doorways coming and going
in the hours between dawns
looking inward and outward
at once before and after
seeking a now that can breed
futures
like bread in our children's mouths
so their dreams will not reflect
the death of ours:
For those of us
who were imprinted with fear
like a faint line in the center of our foreheads
learning to be afraid with our mother's milk
for by this weapon
this illusion of some safety to be found
the heavy-footed hoped to silence us
For all of us
this instant and this triumph
We were never meant to survive.
And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full we are afraid
of indigestion
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
remembering
we were never meant to survive
- Audre Lorde, The Black Unicorn

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Love & Understanding

2011-02-02T15:09:00.000-08:00

While I was waiting for Noah's battery to rundown the other night I watched an episode of Parenthood on television. This particular episode had a storyline of a grandfather wanting to take his grandson who has Asperger's Syndrome camping. His parents, with obvious apprehensions allowed it, outlining a written guideline for a reference on how to handle situations with their son. The grandfather denied needing any kind of help. He had it covered. After all it was his grandson, how complicated could he really be?

I seen qualities that were so very familiar in that dynamic. The grandfather wasn't doubting that his grandson had such a diagnosis, but I don't believe he truly had a firm understanding of how difficult just one entire day was with a challenged child. He winds up calling the parents for help and advice after an apparent meltdown from his grandson, and after the parents had spoken to him on the phone magic words to calm and soothe his world, all was fine and they were able to finish their camping adventure. They both returned home to anxiously awaiting parents to hear how the trip went.

The grandfather admitted he really had no idea what they must experience as parents, but said his grandson was a great boy. You could tell this character had a new profound understanding of his special needs grandson. I hear a lot of special needs family with the same complications. It's a hard road to really understand unless you're personally living it and it affects your daily life in some way. You can be a family member - even a close one at that and unless you help daily, or often you may not fully realize what a day in a life for special needs really means.

You may hear your son, daughter, sister or brother, or best friend discuss what it's like to have a special needs child, you may sympathize and try to relate, but until you've had it land in your lap all alone - just you and that special needs child one on one, you can't truly ever know how hard it really is. Does this mean that every grandparent needs to go off on a trip with a special needs child? No. You have your own backyard to get to know them. Same is true with friendships that often become substitutes with family breakdowns. Spend time, not even necessarily alone. But take the time to see it, just not hear about it. Watch it with your eyes, so your heart has a greater understanding. We can speak a thousand words, try to describe it to the moon and back. But bear witness to it, just for a moment. Appreciate our experience, know that we're doing the best we can with circumstances that are often beyond our control. Give us that room and freedom that we need to cry, find our joy, celebrate inch-stones, and cry some more. Most importantly don't pass judgment.

A lesson that my mother reminds me of all the time. We came out of Target the other day and a young kid, who to me looked beyond irresponsible, probably lacking a job, potentially drug addicted, scruffy, and without manners to say please and thank you, pulled up in a white handicapped licensed car, which clearly wasn't his, asking for two dollars because he was hungry. I hesitated thinking there is nothing wrong with him and I didn't believe he was hungry and need two dollars. Yet my mother passing zero judgment, gladly hands over the last two dollar bills she has in her purse. And after he drives off she turns to me and says we must give him the benefit of the doubt and pray for him. I guess God couldn't have sent a better teacher for me to lead me by example. She was right as much as I could sit there and study this kid, it wasn't my place to judge, I wasn't in his shoes and maybe just maybe he was telling the truth and was indeed hungry. Who am I to judge? We've all got our personal struggles on this earth. With understanding comes profound love and acceptance.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Cooped Up & Cold

2011-02-02T08:22:00.000-08:00

We are still missing sleep. You'd think Chris and I would get used to it. But we truly suffer when Noah's bedtime is 2am and he gets up at 6am. I'm not sure which is worse late nights, or being up every one to two hours. The other night we had an added bonus, his loudest toy in the master bedroom decided to go off because the batteries are trying to die. Nothing like being woke up to a toy cackling at you and lighting up your room like a UFO just landed on the carpet. And of course our little light sleeper heard every second of it and was up immediately. Darn.

Noah has been doing really well in pool therapy, we put a life jacket with a hood on him for the first time. He tolerated it really well, and we were able to give him some more freedom with his vestibular motion in the water. We made the formal decision to take a break from sensory class for a while. We've had discussions about addiing additional types of therapies in its place, but we're just trying to make sure we don't overload Noah. We know that he lacks the speech component to his therapy week. We've been trying to do as much in-home speech as we can, yet to no avail. Noah still has no words. We've had recommendations to enroll Noah in hippotherapy in the fall, something we can't afford either. I'm so frustrated that Medicaid won't help us pay for these things. It's not like they are experimental, they do work. I also was reading up on the benefits of acupunture for the compromised brain, and the help it can often give the nervous system, and we can't try that either. I know there is no cure for brain damage. I'm not looking to "fix" Noah. I know I can't do that. God how I want to. But it's compeletly out of my hands. All I can do is attempt to find ways to improve his life. And it's frustrating not to have access to things that we truly believe would offer Noah the hope of making physical gains.

It's been extremely cold here the last couple of days. I'm thankful that our snow was minimal as I know many other states haven't been that lucky. Due to the temperatures Noah's sensory class was cancelled, and I'm not sure if pool will be possible or not this week. The pool often suffers with temperature problems when it gets really cold outside, even though it's an indoor pool it still has an impact on keep the temperatures as high as usual for him. It's just as well that Noah stays inside, the cold can't be good for breathing, and I'm sure these temperatures will sprout a whole new chain of illnesses that we'll have to watch for. We keep Noah still heavily guarded from germs. We just aren't risking the onset of seizures if we don't have to. We remain so very thankful to family, friends and therapists that warn us when they aren't well so we can keep Noah healthy.

A representative from Noah's equipment vendor has agreed to pick up the Twist pediatric chair that is in my basement non-functional for Noah in the next few weeks. Even if it is modified I know that it's not the right chair for him. I really want to trial the Convaid Cuddlebug, yet I'm told that there is no way to do that in this state since there isn't a vendor that carries them. So as any persistent mom, I contacted Convaid via email to see if I had any other options to trial their product to see if it is a good match for Noah. Maybe I'll hear back, maybe I won't. But I won't give up on finding the right equipment match for him. There is a reason there are so many products out there because it isn't a one size fits all for special needs bodies. And I'm determined, to find the perfect equipment match for him. He deserves to be comfortable.

Hopefully Noah will want to snuggle for a while today and nap. Another cold day today, which means we'll be cooped up inside again, for the third day in a row. The highlights to our day are washing rugs and scrubbing the kitchen floor since the dogs think it's too cold to take even 30 seconds to piddle outside. I don't blame them really, below zero temperatures I wouldn't want to potty outside either. And Noah seems to like some of their cooped up energy as they bounce around stealing clean socks from my laundry basket and playing tug of war. I think I even seen him smile in one of their directions yesterday and usually he avoids looking or paying the dogs any attention unless he has to. Waiting patiently for spring.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Equipment Challenge

2011-01-25T09:36:00.000-08:00

Measurements are in to attempt the Rifton Pacer Walker for Noah, I hope it works. I'm equipment leery since Noah is very particular about what will work for him and what won't. The kidcart is still not workable, and I have a borrowed Twist pediatric stroller that sounds like it will also become part of my collection whether we want it to be or not, that Noah indeed may hate as well- even if it is modified - finding it's way into the basement to collect dust. I found a stroller online that I'd love to try for Noah called the Convaid Cuddlebug, but it sounds like I won't be able to get my hands on one to try it for Noah. And just by looking at it I think it has strong possibilities due to soft fabrics and design that would make it sensory heaven for a little one like Noah. I know he needs something plush and soft. And I know what he likes in a stroller and I'm trying to find those qualities in a pediatric stroller/wheelchair. It's very much a frustrating process for me, and so many other special needs families. We have ideas of things we think might work for our children but there's always something standing in the way whether it be a manufacturer, needing a specialist, or the ever popular insurance denials.

I also was discussing obtaining a stander for Noah, something that may or may not be challenged by Medicaid and something hopefully we will be exploring in March. Right now his only options are laying on his back and it would be nice to give him some time during the day with other options to strengthen his legs so hopefully he can learn weight bearing. Our house is quickly becoming super small, something I never dreamed would happen when I first bought it. Noah's equipment takes up a lot of space. It's nothing like having regular baby items around, or gadgets, this stuff is heavy and cumbersome, and things we need for him. It's weird trying to already handicap modify the things I can, like removing my shower doors to get Noah in and out of the bathtub, trying to find places that will help me remodel my first floor with hardwood and lengthen my doorways to accommodate a walker, knowing in the end if Noah isn't mobile that I very well will have to consider abandoning this home all together to find one that is handicapped accessible. My mother warned me when I bought this house that it had a lot of stairs. Little did she know then how complicated this house design would actually wind up being later on. This was my dream home, and I worked so hard to get it, fix it up, and take care of it. And now I look around and just remind myself all the time you can't plan your future. You think you can, but it's impossible to know where you'll be tomorrow. It's such a false sense of security that we give ourselves.

Noah's therapists say usually you have to have homes custom built, like we have any pennies to rub together for that. But again I have a tendency to put the horse before the wagon. And really I shouldn't box Noah in prematurely. Although I try to be realistic about our lives, I still have the burning hope that I cling to. That hope that I refuse to abandon. The hope that Noah will find away around all of his neurological damage to make leaps and bounds. I'm just hoping this year brings something simple for us to celebrate, maybe a first word, or being able to sit, just one thing that we can celebrate and that I can put in a baby book that say yes you did it!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move."
The Bible, Matthew 17:20

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sleepless Struggles

2011-01-20T11:01:00.000-08:00

Noah is still struggling a bit in sensory class. Our neighborhood walking friend joined us for class this week and it was so great to see her. They are closely matched in what they can do and what they can handle. It was rather nice not being the only person with a child that couldn't participate in every activity. I don't know if she'll be able to make class with us in the future or not, but we enjoyed our time together. She's a sweet little girl, she's grown in the months I haven't seen her because it's been too cold for walks around the block. Chris and I are considering withdrawing Noah from sensory class at the end of this six week session. Maybe it's too much too soon, or too many kids. At this point there is no way Noah could handle preschool setting, there is just too much going on in a class room full of energetic little ones.

Noah had one of those nights again where we were up every few hours crying and screaming. On the average I think Chris and I survive on three to four hours of a sleep. I'm sure we have premature bags under our eyes and always look like a train hit us. I think around 4:30 I just decided to have a good cry in my pillow with Noah screaming next to me in bed. It's so frustrating when you can't soothe your own child. Sometimes you feel like you're failing at a parent, but then I keep trying to remember this is all part of brain damage, nothing is the same after your brain is changed. You don't sleep like everyone else, you don't move like everyone else, you won't think like everyone else, or sound like them. It alters every aspect of your entire life. Not only for the child but for the parents. Life as I knew it will never be back. I will never get off this road, my detour will never end.

Whether Noah naps or doesn't nap it doesn't make a difference in his sleep patterns. I noticed today when he was napping with me that his arms moved frequently like a startle reflex in his sleep, maybe that's what keeps waking him up is movement. I thought about using a weighted blanket had one picked out was going to place the super expensive order, but his therapists tell me not to do it becuase Noah cannot move things away from his face and a weighted blanket could suffocate him if he gets it over his head. So that idea seems to be out. Last night he was up every one to two hours, he didn't want to sleep in bed with us, so Chris slept on the floor with him, but nothing we did really worked. Sometimes it all is a very discouraging feeling. Since Noah's ER visit and ambulance ride in December things have been even more difficult for him than they were before. I feel like we lost ground somehow, that we went backwards.

Today we attempted pool therapy, but when we got there the pool wasn't working so we attempted to do occupational therapy things like the platform swing and such. Things that usually Noah really loves to do. But he had a hysterical breakdown, and nothing I or the therapist did could soothe him. She's trying to teach me all these touching techniques to make it better, yet she reminds me every child has a different trigger and we don't know what will or what won't work for Noah. We just finally had to leave, Noah was still distraught in the car, something that is dangerous to travel with an upset Noah. I almost thought I'd have to pull over and try to give him a break so he didn't get sick, but then he finally started to calm down enough that I was able to keep going.

His pool therapist recommended respite help for Noah, knowing that we're just simply exhausted. Unfortunately we don't qualify for most programs because Noah is not G-tube fed or on oxygen. Even if we did, it would take a really special person to adapt to Noah. I worry that a stranger would become so overly frustrated with him that they'd injure him in some way. He is difficult. And I wouldn't want someone to hurt him or shake him just because they couldn't calm him down and they were frustrated. You have to love Noah through all the tough times, if you raise your voice or he detects in any way that you're frustrated he cries harder. I'm sure most respite care providers are used to dealing with children that lack the ability to get upset, those that are so medically fragile that they require very little maintenance. Noah unfortunately is very high maintenance and is very needy.

I passed a mom that today leaving that said if I can't soothe my child there is always medication. I wanted to react and tell her exactly what I thought of her two cents, maybe I should have but I didn't. I'd like to think she was joking but I don't think she was. Sometimes you have to forgive people for their ignorance on what they say. They see two minutes of a picture of your entire life and think they have the right to criticize and offer an opinion. She has no idea what Noah suffers from. No idea about our life or Noah. It's easy for an outsider looking in to say I'm sure lots of things. Walk just minutes in my shoes and you'd think differently. This life is not cupcakes and icing. I'm not living a fairytale. God I wish I was. Lately I think I've even bit a bit annoyed with God, shame on me I know. That certainly will get me nowhere fast. I want to know why he's not helping healing Noah, certainly the only miracle can't be that he survived his birth. There has to be more. I want there to be more. A mother can't help but ache for a child that is struggling. I'd gladly take his place, take the burden he must carry of being so physically impaired.

"God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way."
Unknown

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Battle of the Bath Seat

2011-01-17T18:31:00.000-08:00

Noah's has had a Manatee Bath seat for many months now, but we had yet tried it out in actual water. We've still been using his infant to toddler tub. Chris and I had a wild hair that Noah might be ready for it. Of course he wasn't. Noah isn't ever ready for much. Chris spent some time taking down our shower doors (something you can't have with a child like Noah to get him in and out of a tub), I spent most of my afternoon chasing the loudest, most colorful, playful and happy vinyl shower curtain and rod that I could find. We adjusted the bath seat, all looked well. It takes up almost the entire bathtub. We have to of course fill the bathtub up much higher too. So the water actually reaches the chair.

We put Noah in it and he immediately knew the difference, and the screaming began. He kept sliding downward even though it does have crotch support, you cannot put Noah in the straps because that sends him into even more of a frenzy, he cannot handle being tied down. But if you think about it, what a frightening thought that would be for any of us, being tied down in a bath of water, completely helpless. I'm sure that has to be scary. It was definitely a two person job, I tried to rinse his hair using the shower head, something we've tried to practice after pool therapy for sensory issues that he has with people touching his head and neck. That made him even more mad.

His daddy tried drying him off quickly, and dressing him, all the while I tried to drain a tub that wouldn't drain, I finally got it to drain at a trickle, but obviously something is wrong with the drain. And why wouldn't it be because that is how everything goes. Always a problem of some kind for me to conquer in the land of special needs.

So I guess we go back to the toddler tub for a while again. I'm not sure what to do, but spending an hour calming an upset Noah all because we threw him in a bath seat, isn't healthy for him. He shouldn't get that worked up, to the point of not being able to calm down to go to bed.

Noah still isn't sleeping through the night and in fact his time of getting up has increased. I keep going over the cause, is he too cold? too hot? is he dreaming? is it the barometric pressure or weather changes? He much has the schedule of a newborn up every couple hours. Sometimes I can take him to bed with me, but it takes him a while to get comfortable and fall asleep. Other times Chris gets out of bed, even on work days, to try to help soothe him on the floor in his room when I'm simply at a loss as to what to try. And Noah lacks the ability to utter a single word to us to tell us what his problems may be.

At the end of the day, Chris incorporates into his nightly prayer, "Dear God, please let Noah sleep tonight", and I just want to throw my hands up and say what else am I supposed to try? Yet, I have to keep trying, have to keep going, because that's the only option I have is to continue to help Noah each and everyday with everything that he is experiencing and going through. None of my days are easy, I've long ago accepted that. But I do always wish I could make life easier for Noah.

We did have an amazing highlight to our day; a beautiful haircut and experience for Noah. I hadn't really intended to get his haircut today, but I stopped by a place close to home called Cool Cuts 4 Kids. I just wanted to see what the environment was like, if I thought Noah would be comfortable there, if I could still hold him on my lap, just get a feel for things. They weren't busy, so I opted to just give it a try. They found a really great Elmo DVD for Noah that he was able to watch in his own little salon stall, he was beyond happy. Alice was his hairdresser and is also the store manager, and she was like a gift today. An angel sent to understand little Noah and his needs. Her personality was soothing and calm, and although the lobby wound up filling up quickly with seven customers waiting, she was patient and didn't rush him. She allowed Noah to turn his head as he chose and I really think he enjoyed that. It gave Noah more control over his experience. He laughed and giggled, and she gave him the cutest little duck point at the bottom. The best looking haircut I think he's ever had. It is truly adorable. She made notes in the system so we could get the same cut again.

Alice said they do a lot of special needs children and get lots of requests. Truly she has a special touch to go with a special child. What a blessing she was today for us. We needed a good experience. We were overdue. And Noah left looking so very handsome.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Weather Challenges

2011-01-15T07:37:00.000-08:00

This week it actually felt like winter with snow included. It's a bit more challenging when you have to drive a stroller in snow packed parking lots to get to therapy. They really should come with optional snow tires for parents like me. I'm not sure which is more challenging holding and carrying both an arching toddler and stroller to a doorway, or just trying to force a stroller with a child in it through the snow. I imagine the same is true for wheelchairs, they don't come any better equipped for the weather.

Noah had a good pool therapy session, he wasn't able to hold the swim sticks this time more than just seconds, but he was happy and allowed us to wash his hair and give him a shower without complaint. His therapist holds him on her lap while I do the washing and the rinsing. Noah will always be a multiple hands job for things like that. It was nice to just sit and watch Noah at therapy be so relaxed. Even if it was just for an hour. It gave me time to relax a bit too. I just sat there with my feet dangling in the water, feeling the sun come in and offer peaceful reflections against the pool water. I don't get many moments like that. For a moment it felt like a kiss from God. A teeny tiny moment of reassurance that we'll be okay.

And it's always so nice to talk to all of Noah's therapists. They each bring to the table wonderful ideas, things to try, goals for me to work on at home. I had seen a poster posted to the therapy doors up prior to the holidays about a little boy that they were doing a fundraiser for that had fallen in the pool and was a near drown. He was on my mind for sometime. I asked how he was doing, and the therapist explained he passed away and didn't make it. It's amazing how you can be heartbroken for a family you don't know and will never meet. But I was. You just root for all of them. Every single struggle out there, you feel pain as if it were your own. You genuinely find yourself caring in ways so intensely that you want to take all the pain away that exists for any parent in the entire world. Sometimes you feel as a special needs parent you are very much fighting an uphill battle. You convince yourself with time that it will get easier, but I can't say that after two years things have gotten any easier.

Even last night I'm dreaming I heard the words mama. Just like dreams before of watching Noah walk and run, I want them to formulate into reality. I want them to jump out of my dreams and become real. But they don't. Teasers as I sleep for something I crave and cannot have.

My older brother brought over a wagon for Noah a few weeks ago. It's still sitting in the garage and I pass it every time I load Noah into the car. I wish I could put Noah in it, but I can't. He won't sit safely. I think about how I can rig it, to make it so Noah could be more like other children. Could I build something, sew something - make a gadget so he too could enjoy a red wagon. My brother said I could sell it in a garage sale if it wouldn't work, but I can't seem to really put it in the garage sale pile - maybe because it represents something I truly want for Noah and can't have. I never did seriously explore the Radio Flyer's Comfort Embrace Wagon, I knew the cost was out of bounds and although I know it has a five-point-harness I wasn't sure how long Noah would be able to fit into it. Yet Noah probably doesn't even care that he can't sit in a wagon, he doesn't even know the difference. I found this quote in a book the other day and it really does speak volumes. Although I still desire so many things for Noah, we have been blessed with that we did once only hope and pray for.

"Do not spoil what you have by desiring what you have not; remember that what you have now was once among the things you only hoped for."
Epicurus

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Social Fears

2011-01-11T15:41:00.000-08:00

We went and looked at some walkers yesterday with Noah's physical therapist. Although Noah is not tickled about the experience I was at least able to see how he walked in it. Which was nice. I liked the kid walk that we borrowed but it always seemed like he wanted something to do with his hands, and the bike type seat always seemed a little firm for him and he's got a tiny frame (he comes by it naturally) Chris and I both really looked similar as babies. The advantage to the kid walk is a child could easily come up to something closer, where other walkers really don't allow for that because they have a larger front frame. I thought about the Bronco walker after looking at some pictures that I had seen from online friends that have special needs children too. But it would force Noah's body forward and thus causing his feet to really launch from the front, and from what we can tell Noah does not scissor when he walks and is able to walk flat footed one foot in front of the other. Which I think is a good thing. Or at least in my mind I'm telling myself that it is.

I liked the way he was positioned in the Rifton Pacer, and he would have a place for his elbows and hands to land. It's a bit bigger than the kid walk, has a larger frame, but I like it's bucket seat better, it's softer and complete fabric that can be removed should Noah ever learn to increase his walking skills, something that only time can determine. And of course I come home and look at my house and think this home is so completely wrong for a handicapped child. It's carpet to carpet except the kitchen, the entire first floor really needs pergo or hardwood for Noah to navigate such a thing. Chris and I have no money to even pay for therapies that are not covered by insurance, let alone redoing our home to make it more accessible for Noah. I don't know if there are places that help you financially to readapt your house, or we're simply on our own. I really don't know how that works. This is all so new to me. I would love it though if I could make it something where Noah could have some freedom and potential independence in some way. I don't expect him to learn to walk in a walker overnight. Yet I know I will need to give this some thought.

Noah will probably also need to be re-fitted for sure-steps again, his little feet are growing. I'm glad he doesn't need full AFO's yet, maybe he never will I don't know. It's early to tell. I still dream of him walking, but I keep these dreams guarded, I bounce back from reality to dreaming and back again all at the same time. And really it's all up to Noah, it's how far he wants to go. I can only be his guide, the rest is up to him. I will cheerlead him on, and never ever tell him that there is something he cannot do. My hopes is that this little determined person will reach places no one ever thought he would.

It will take many months to get Noah a walker, Medicaid isn't fast. And equipment doesn't just arrive in a week. We still need to measure Noah and work out all the details. Hopefully by Summer he might have his own walker. We still don't have a pediatric stroller/wheelchair worked out yet. We're constantly trying to give that some thought. And I'm assuming that Medicaid will consider his walker a stander, so I'm assuming we wouldn't be getting a stander for Noah at all. I looked at the Rifton bikes that they make for kids, at first I looked at it thinking Noah will never ride a bike, but his physical therapist thinks that Noah may be able to do it as he gets older he just has to learn to pattern his leg movements. That was encouraging. Sometimes as a mom I think about all the things Noah might miss out on, all the things I would love him to have access to. Of course Medicaid doesn't pay for bikes, but we'll cross that bridge when we get there. Chris and I can only go day by day with getting Noah what he needs. We try so hard to provide for him in all the best ways.

Today we did had therapy and Noah's sensory class. I was a bit worried that sensory class would be an utter disaster considering we've taken a break for the last three weeks due to holidays and that Noah has been struggling a bit more lately in those areas. He had some moments of gagging - an indication he's on overload, and was getting agitated towards the end, until one of the therapists bounced with him on the balls and trampoline. Noah needs that movement often times to re-group and center himself. The kids played with play dough today, but Noah just can't yet. His little hands are so far away from working to play like that. So we watched the other kids build their gadgets and mold their dough.

As I was leaving there was this group of moms that were feverishly making play dates in the hallway. I twinged, I know I shouldn't - sometimes it just happens. Over silly things obviously. I know that no one is ever going to ask Noah for a play date. Noah can't play. He's two and just lays on the floor. Other moms aren't going to invite me over for things, they aren't going to include me in their "reindeer games" and tupperware parties or whatever stay at home moms do. My child is different, so therefore I am different. There are days when I feel that distance growing even bigger. Although I'm so busy tending to Noah because his needs are much like a newborn or infant rather than a toddler, that I tend not to have the time to slow down to really realize how left behind I really am.

Parents can't invite me places, I can't travel with Noah to the Botanical Gardens, to the Colorado Springs Zoo... so after a while the invitations stop, no-one really wants to figure out what you can do, or what Noah could make it to do or what he'd like. I think in a way they hope that you cannot go, then they've done their duty of trying to include you, while still keeping their distance from "the disability". A conscience clearing technique that maybe we all possess to some degree. To say well I tried, even if I didn't really try at all.

Even though Sociology was my major, there is so much to be said that you simply cannot learn from a book. Have a special needs child and realize that's the huge social experiment. Who needs to study which way people tend to stand in an elevator? Or how they react when a stranger sits next to them for a meal... try special needs. There should be a huge book on that. My biggest wish is that people wouldn't be so frightened of it. My life isn't contagious. My child doesn't have a disease, sure people might stare at us, or ask questions, but the only person that should even affect or make uncomfortable would be me, not the person standing next to me.

"Have no fear of robbers or murderers. They are external dangers, petty dangers. We should fear ourselves. Prejudices are the real robbers; vices the real murderers. The great dangers are within us. Why worry about what threatens our heads or purses? Let us think instead of what threatens our souls."
Victor Hugo

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Aromatherapy

2011-01-10T07:46:00.000-08:00

Yesterday I was on a quest to find soothing techniques for Noah. I must have sniffed almost every essential oil scent at Sunflower before realizing there were none that were smelling good to me. I felt a bit discouraged, but my mom recommended we go to Vitamin Cottage and see their selection, so we went across the street, and found the perfect combination of lavender and vanilla. I opened it up and thought instantly this is the one. If I liked it, surely little guy might like it. It wasn't overly strong, and I liked the little dabber that it had as a dispenser.

I also found this really interesting therapy tool called the Hot Diggity Dog while I was there. It's an aromatherapy stuffed animal that goes around your neck that is scented with Cinnamon, Eucalyptus and Clove. It can be put in the microwave and warmed up or in the freezer for cooler comfort and can be machined wash and dryed. It also comes in a teddy bear called Buddy Bear, and a cat called Cozy Cat. I'm going to ask his therapists what they think if it might help soothe Noah when he's distraught and is on sensory overload. They are a little pricy, so I want to make sure if I make the investment that it will be something that might really help Noah.

Hopefully this is all just a phase that I can get Noah through. I remember having to bounce and constantly move him as an infant to soothe him, and give him vestibular motion that he needed. I thought those were hard days, and now I've moved into another hard phase. I can't bargin with Noah, I can't negotiate with him to be calm, or coax him with a cookie or a treat. I admit there are days when I just want to cry with him because I don't know what to do, or can't figure it out fast enough. And I wish in everyway it was different for him. I want to make him all better in an instant. I want everything I'm trying and doing to be working. All really all I can do is turn it over to God, so much of it is simply out of my hands.

Granted Noah still needs vestibular motion, which we do in therapy or at home. We still rely heavily upon platform swings and bouncy balls. Still all the while working on head and trunk control, and trying to get him to balance to sit. It's really exhausting sometimes, but I'm so glad Chris is my other half. He participates equally in helping Noah. Even though I'm the one primarily taking him to therapy or am here with his in-home therapists, Chris still comes home after working and helps him play with knobbed puzzles, hold triangular crayons, and work with speech on his Ipad. He spends a large amount of his weekend being my right hand, we take turns doing this dance of taking care of home repairs, therapy with Noah, grocery shopping and finding a way to at least get the laundry done, even if it seems to pile up clean on a bed for days at a time. I don't know how we find a way to make it work some days but we do. It's a marriage filled with love, and we're in perfect harmony of doing what just needs to be done. Each of us rarely complains and if we do, it never has an ounce to do with Noah - it's usually related to economical or insurance circumstances. We always wish that we could change things for the better not only for Noah but for all that are like him.

We're hoping the essential oil that I bought will make a difference, it's still too early to tell if it will have any kind of an impact. I know I can't expect this to get better overnight. But hopefully with time I'll be able to get Noah to work through this. Thank you all for continuing to pray for Noah and our family.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

A Special Grandma for Special Needs

2011-01-07T08:26:00.000-08:00

Ever since Noah came home from the ER, he's been suffering from on and off again moments of hysterics. Things will set him off that never did before, he's frightened of things he never had been. Between Chris and I we spent over two hours trying to calm and soothe him last night to no avail. He just cried and cried super hard no matter what we did. Listening to the radio didn't help, being held in a different way, being cuddled, we tried both beds his and ours, nothing. We weren't sure if he was sick, he didn't have a fever. But he can't tell me why he's crying and it's distressing. He had a happy day, it was perfect, the first one in days where I didn't have a distraught Noah. Laughed and giggled and was basically himself. We made it to pool therapy and he did great, loved it, and he looked like he was relaxed and enjoying how his body felt. He took a decent nap. Ate great all day. I went over the checklist a million times as to where it went wrong for him at the end of the day.

So as a last resort what do I do? I call my mother because if I don't have the answers surely she will! The second time in weeks I've woken her out of bed, and she doesn't even hesitate she comes right over to help. At 11pm at night here is grandma trying to help her little Noah. She finally is able to comfort him and they both find a spot on the floor and she spends the entire night sleeping and cuddling with him, even though she has to go to work and face a tremendously demanding workload the next day. It takes a really special grandma to love Noah in the way that she does. It's just amazing. I don't know too many people that would love him like she does. She doesn't see a broken little boy, she just sees a soul that she's going to help make his way. Her patience and love for him is incredible. She knows his limitations, how fragile he is, how he needs to eat, what we have to do to make sure he stays healthy. I tried to even get into a program that would pay her for all her efforts in helping us care for Noah and his challenges. But the State said since Noah didn't have a "short life expectancy" that we didn't qualify for the Medicaid Waiver Program. (Just one of many program and service denials we've received). So all I have for now is to pay her dearly in our love and thanks.

We never did figure out what was upsetting Noah. He's fine and chipper this morning like no big deal. Last night he grew upset because we touched is prayer bear and made it recite its nightly song, but usually he loves that bear, then he seen Chris on the phone and that upset him more. He doesn't mind if the phone rings but he doesn't want to actually see you on the phone or know you're having a conversation with someone. Maybe in his mind he thinks we're calling 911 again I don't really know. He always was sensitive with sensory issues, but never this bad until after that emergency room visit.

And I worry as we have some medical appointments scheduled this month, and I really am concerned about his well-being. I'm trying to get him to move forwards, not backwards. I've asked his therapists for advice, and they've been great offering me some sensory techniques to try with dry washcloths, essential oils that might be calming that I'll go hunt this weekend. But the problem with sensory things is they don't go away overnight. This could take me a really long time to get Noah over what is scaring him into these episodes. Chris and I feel that something scares him into these hysterical episodes where you can't calm him down. And I'm not about to drug Noah just because we have some sensory problems and fear issues we need to work on. I will find a organic way of getting him through this. Granted it's hard on Chris and I, but God never told us this was going to be easy. We just have to keep trying until he understands all is safe and well and wonderful.

And at the same time while Noah's auditory and visual sensory issues seem to be on high alert, his sensory issues with touch are much improved. He actually held a swim stick in one hand for a minute and 15 seconds. Not hardly impressive I know in the world of typical children at the age of two, but highly impressive for a Noah that can't even hold a spoon, bottle or feed himself in anyway. He's also allowing me to freely brush his teeth without complaint and gag. Huge in our world or sensory problems. You had to trade one improvement and lose ground on another. Special needs is just challenging. It's truly hard to explain it unless you're living it. I'm so glad I'm not alone. That's been such a comforting part of the last two years. You really do need support to get through some of your days, you do need prayers, you do need those hugs from friends, you do need love from the family that will be there. It's like the energy you feed on to keep going. And even though some like us find there many not be many in their corner, all it takes is just one person that cares. Just one - and you can do this.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sensory Days

2011-01-04T14:58:00.001-08:00

Noah started his new year off a little rough. There are just so many overwhelming sensory issues for him. Can't turn on the electric knife without him screaming... the blender often sends him to the moon... his Tickle Me Elmo that I thought he'd love freaks him out. We've been without internet service for several days. And Qwest come at all time unannounced to make more repairs that still have yet to fix it. We only have access for minutes at a time and then are without it for hours and days at a time after that. A service man rang the doorbell yesterday during Noah's nap, I of course still have to snuggle with Noah in our bed for naps, he has not learned to soothe himself enough to take an independent nap. Once the doorbell rang, our loud mouth barking dog, Hollie wouldn't give up, causing Noah to immediately cry. I attempted to tell her to be quiet which made Noah even more upset, because in Noah's world you can't get mad or upset, he's too sensitive for it, and that makes his hysterics worse. So Hollie runs outside and barks, which still is upsetting to Noah while the Qwest service man is yelling at her through the fence to shut up. I put Noah down because I have to do something. I attempt to call my mother because she happened to be off of work, only to find Qwest had disconnected my phone line. I'm scrambling for my phone as I charge out the door to tell Qwest exactly how they've tortured my kid and ruined my day, with their unannounced visit and ask him to reconnect my phones.

Noah of course was still crying and hysterical by the time grandma arrived. We took turns trying to soothe Noah and calm him. He gets so worked up and often time just lacks the ability to self-calm. It's not his fault. This is all part of his neurological damage. His triggers are so sensitive, he just can't help it. You can't offer him a bottle until he calms because he tries to inhale and gasp which is risky for aspiration, you just have to walk with him and hold him and tell him how much you love him until it's over and it could last a long while. I was thankful for the extra set of hands to help Noah through it. I know it was a combination of a very short nap with terrifying noises that set him off. I'm sure it's really hard for Noah to be Noah. He lacks the ability to tell us what is bothering him, he can't run from anything, he's completely dependent.

Well intentioned people tell me that the only way to get Noah past these things if force the exposure of them on him. But that's not the key. A mommy's intuition tells me the opposite. That would be torturing Noah. He will either find a way around them, but I'm not going to purposefully expose him to things that I know will cause him hysterical hour long meltdowns. I'm doing the best I can to fix them, buying anti-barking devices for my big mouth, contemplating disabling the doorbell so that the dogs don't freak... packing Tickle Me Elmo away in a box...

I've always had this tendency to gravitate towards movies that aren't all happy endings and roses. Movies that whether they be fictional or not, have such heart and character you believe that someone could have really lived it. Like Terms of Endearment, Steel Magnolias, Thorn Birds, or the one I re-watched last night Fried Green Tomatoes. People that have such heart still while possessing typical flaws that we all have. In the movie there is a section that always made me cry, even years prior to Noah's birth. Where the character Mrs. Threadgoode, or as I believe is really turns out to be the character Idgie, describes having a special needs child, Albert. The book rather offers a way more detailed description of Albert, and Mrs. Threadgoode's reaction regarding his circumstances. They suggested to her that the child would be a burden. And she replied:

"How could that precious, sweet baby ever be a burden? How could anybody think such a thing? Why from the minute he was born, Albert was the joy of my life. There wasn't a purer soul that ever lived on this earth. And years later when I was feeling a little down, I would just look at Albert. I had to work everyday of my life to be good, and it was just a natural thing for him. He never had an unkind thought. Didn't even know the meaning of the word evil. A lot of people may have been sad to have birth-injured child, but I think the Lord made him like that so he wouldn't suffer. He never knew there were mean people on the earth. He just loved everybody and everybody loved him. I truly believe in my heart he was an angel that God sent down to me, and sometimes I can't wait to get to heaven to see him again."

If only years ago I would know in hindsight that my own birth injured son was in my future. Maybe there was a reason I always connected to that passage and never understood why. I too do not see my child as a burden. As challenging as some of our days may be. He is and always will be my gift. I will remain always humble and thankful to God for sparing him and allowing me to parent him the very best way I know how. I pray everyday that therapy continues to help Noah, that with this unconditional incredible love that I have bursting from my heart for him that it will be enough to carry him his entire life. That he too will not ever see the world in it's most wicked ways. That he will only understand pure love.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Second Year of Noah's Miracle

2010-12-31T10:45:00.000-08:00

Make an on-line slideshow at www.OneTrueMedia.com

"A new year is unfolding—like a blossom with petals curled tightly concealing the beauty within.

Lord, let this year be filled with the things that are truly good—with the comfort of warmth in our relationships, with the strength to help those who need our help and the humility and openness to accept help from others.

As we make our resolutions for the year ahead, let us go forward with great hope that all things can be possible—with Your help and guidance."

A New Year’s Prayer
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.
Anonymous

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 3rd Christmas

2010-12-28T08:16:00.000-08:00

Noah had a really good Christmas. It was especially magical this year with all of help from Santa's Elves that came from all different places to make sure Noah had a wonderful Christmas. Noah still was fussy over opening presents, maybe it's the noise or the crunch of the paper or the frustration knowing he can't do it. Some of his gifts were an automatic hit, while his daddy and I are trying to slowly get him used to the original Tickle Me Elmo. As soon as that Elmo hits the ground he screams with fear. Sometimes it is just so hard to know what Noah can handle sensory wise and what just blows his senses to pieces. We're still hopeful that it all will get better with time. But it's hard sometimes to watch your child be frightened of certain toys or not be able to play with the majority of them without your help. Sometimes you just want to cry because you just can't fix any of it for your child. Balancing that feeling of helplessness and hopefulness is tricky.

Noah spent the morning watching Christmas paper be tossed around and his new DVD's. Hopefully with each passing year he'll be able to participate more and more. I fixed just a tiny little dinner for us, and we had Noah's giant cake that we'll probably be eating the rest of the week. We're looking forward to the new year. There is something always interesting about the idea of the new year being able to bring about wonderful things. I have no resolutions, only a million wishes. But I don't think it's customary to get wishes granted upon New Years. Yet I'll toast to my sparkling pear juice probably around 9pm since I drop early, and still cross all my fingers and toes that we'll find a way to make it through the new year, provide for Noah's therapies, and that the year will be filled with new beginnings for Noah. Maybe this is the year he will learn to sit, or even army crawl or say a first word... wishes. But it's all up to Noah and I just have to follow his lead. We will open a book. All of the pages will be blank. We are going to put words on them ourselves. The book is called "Hope" and its first chapter is New Year's Day.
"And I said to the man who stood at the gate of the year: Give me a light that I may tread safely into the unknown. And he replied: Go out into the darkness and put your hand into the hand of God. That shall be to you better than light, and safer than a known way." Minnie Haskins
Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 2nd Birthday

2010-12-24T18:12:00.001-08:00

Noah had a wonderful Birthday. I think he kind of knew in someway that the day was about him. I dressed him up in an Elmo shirt that a friend had sent us in a care box of clothes to match his themed birthday. We went to Das Meyer and picked up his cakes, his baby cake for his birthday, customized with chocolate mouse filling and whipped cream topping, and natural dyes so he'd be able to eat some parts of it. And a Christmas cake for his 3rd Christmas. It was so wonderful because the bakery remembers Noah from last year and his first birthday cake. I got a big hug from the girl who helped me to the car with his cakes. Along the way you just get really attached to those who have these amazing hearts. They become like extended family. I got Noah three little Elmo balloons for his birthday. Elmo items can be quite costly so he didn't get the great big ones they had, but I know he was totally thrilled with even one Elmo balloon. He watches them sway back and forth.

We sang happy birthday twice for Noah (because you could see he wanted an encore performance). And then just when we told Noah to blow out his candle it went out on it's own. Just like that. Maybe an angel blew it out for him because he couldn't do it himself. It was one of those moments where you just wonder did I really just see that happen? Noah smiled as he put one hand in his cake and smeared it. His daddy trying to show him that his hand was yummy and putting it to his mouth. Noah still doesn't quite understand the relationship to hand in mouth, even with whipped cream on it. But that's okay, we're still here to help him.

We all shared in some of Noah's itty bitty cake. We opened presents for him, I thought maybe the wrapping paper would keep his interest but it didn't. He may have been frustrated too that he couldn't do it himself. It's hard to tell. But as soon as the presents were out and about he was thrilled.

Noah's buddy Bill and his wife Marge stopped by too to wish him a happy birthday. It always feels complete when they come to visit little Noah. And it's always so nice to visit with them. Noah always smiles at Bill, those two will always have a connection. Overall it was a blessed, calm day. Thank you to everyone who sent him well wishes & birthday cards, we keep everything for him in special little keepsake boxes so he can know one day how much people around the world have been cheering him on. All that positive energy bundled up I'm sure will make the biggest difference in his life one day.

Tonight Noah gets to sleep in his Elmo Christmas pajamas and wait on Santa's arrival. I think he's been an extra good boy this year. God bless and to all a good night.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Happy 2nd Birthday Noah

2010-12-23T06:51:00.000-08:00

My Sweet Dear Noah,

Happy Birthday Noah, you are two years old today.

Two years ago today, you entered the world and blessed our lives. As you turn two, you still cannot sit, crawl, walk or talk. I have yet to hear a first word, watch you clap your hands, or take your first steps. You still cannot hold a bottle or eat foods other than purees. All those milestones that parents look forward to, we have yet to experience. But we’ve traded them for something far more precious. Something that many would never understand. We are gifted with your life. You are still present and here with us, what a treasure. The world would be dull and my days would be so dark without you in it.

Your smile and laughter brings a special kind of love to all that know you. You’re teaching us so much about life, about what hope and faith really means. How you can’t give up. I watch each movement you make and the struggle it is for you. The simplest things that we all take for granted. It is something I cannot give you. Something that I cannot teach you. You have become my teacher. Teaching me patience and faith in all things yet to come. Yet despite all your challenges sweet Noah you don’t seem to dwell on your physical situation. There is not sadness in your eyes, you are happy. I know you realize now that you are limited, but you keep trying I see you thinking of ways to get around your physical limitations.

We celebrate you today and get ready to also celebrate your 3rd Christmas. We celebrate how far we’ve come. We recognize and give thanks for all the days, minutes and seconds we’ve been gifted with you in our lives. A little boy that no one thought would make it, a little boy that would have no quality of life, a little boy that fought against all odds with the help of the power of prayer. A team of angels gathered for you, I still suspect you see them. I simply cannot. But I know you tell me something is watching over us. I see it with your eyes. Those precious blue eyes that are as crystal clear as your daddy’s.

Your daddy and you continue to bond into this beautiful father-son relationship, and I’m so privileged to witness it. He loves you beyond all measure, he never waivers not one second in the possibilities that lay ahead for you. He tells me all the time he wouldn’t trade you for anything. He comforts me on the days I have fears for your future, telling me all will be okay because we’re a family and we’ll always be together.

We only can take things a day at a time, but I’m so glad that my days are spent with you. I don’t mind if we go to a thousand therapies, or if I still have to hold a bottle for you, or snuggle you tight to comfort you. I’d do anything for you. This love knows no limits and has no end. We’re so blessed to be your parents. I couldn’t ask for a sweeter little boy. A precious little soul, with so much love to give the entire world.

Happy 2nd birthday, we love you so very much.

Love,
Mommy

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Draw Strength from Heaven

2010-12-19T18:09:00.000-08:00

Noah has had a pretty decent weekend. You can't really tell anything happened, although I've been guarding him like a mother hawk. I have yet to get my center of gravity back and although he seems to be doing fine I feel like I simply am not. Maybe I was overly confident that any types of emergencies would skip Noah. I can't seem to shake those terrifying moments, and I keep seeing him gasp for air and making these sounds in my mind. Replaying it over and over to figure out the cause. I'm hoping it was a one time fluke, something that won't repeat itself. I honestly don't know how parents handle witnessing their children in a medical crisis on a regular basis. My heart aches for all them.

I'm still trying to recapture the Christmas spirit that had come so easily and happily this year and getting ready for Noah's second birthday. We went to a church Christmas play with Noah's buddy Bill, Noah of course did really well, but Noah seems to really like church atmospheres. Chris and I always try to make light that Noah got thirteen more minutes of a conversation with God then we each both got. Sometimes there are just qualities to Noah that are unexplainable, but like my older brother reminds me, it's in Noah's eyes that there is something he's been gifted with. A secret perhaps? I don't know. I hope he's able to tell me one day. He often has a variety of heavenly expressions that make you melt and feel complete peace.

I've spent hours watching Noah sleep in the last few days. I suppose I'm a bit exhausted and worked up. With time I'm sure that will get better, the scare is just so fresh, and it had this ripple effect - this painful reminder and feeling of those seventeen days in the NICU. The smells of hospitals come back, the sounds, the people. It's forever haunting. And no less at Christmas time just like it was at Noah's birth. The darn tinsel and garland hanging at nurses stations. The Santa hats here and there. Listening to the still of machines and intercom noises.

These amazing collection of Secret Santas that have gathered for our family this year, have made the world of difference. Sweet messages arriving in cards, a beautiful pocket prayer quilt... tender little gifts of love - they're all coming at the perfect time, words I need to hear just on that particular day. There's nothing really else to explain it - other than it's a God thing. It's one of those life experiences that you just will never forget - that special Christmas when people all over the world cared and prayed. What a comfort it has been the last few weeks.

Thank you for all those that continue to pray for Noah, that he'll continue to grow stronger in the years to come, that he won't have any more scary episodes of any kind.

"I believe in prayer. It's the best way we have to draw strength from heaven." ~Josephine Baker

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's Medical Emergency

2010-12-16T08:19:00.000-08:00

All should have been calm, all should have been right. It was nine minutes until 10pm when I checked on Noah and Daddy who were working on cuddling to get Noah to sleep. I walked into our bedroom, only to hear moments later what sounded like choking. I was only steps from Noah's room and I flipped on the light knowing something was terribly wrong. Chris had Noah cradled in his arms trying to sit up upright as much as possible. Noah was gasping and making this scary sound, he would not focus on me, I could not get his attention he just looked off to the side. I thought seizure although I've never seen one before. We keep a phone in Noah's room and I dialed 911 immediately. Of course in my panic I explained Noah had a head injury - cerebral palsy and I thought he was having a seizure. In my mind I think it still took forever for someone to get to us, but I know they were fast. It was just that time slows in a crisis. I started to panic and cry. I was beyond terrified. I shouted out to God, please don't do this to me, I've tried to be all you want me to be, spare us this pain please. Noah continued not breathing well, and still wouldn't respond to either of us when we got him down the stairs.

There were too many paramedics and fire department people for me to even count. I rushed him into the ambulance with no shoes, no coat, I felt nothing but numbness in my whole body. They attempted to give Noah oxygen, they were of course trying to ask me a million questions when I was pulled away because the dispatcher had misunderstood my call and called the police thinking Noah acquired his brain injury that evening and that we had caused him abuse. So they wanted to speak to Chris and I, thankfully I called Noah's grandmother who stayed with him in the ambulance while Chris and I clarified Noah's condition and what happened to him. When I got back to the ambulance I could hear him crying. A good sound. I wanted to know he was still here with me. They were attempting to find a vein for an IV but were unsuccessful and just gave up attempts but did manage to take blood for blood sugar testing. Although his grandma and I both agreed Noah wasn't paying attention to us at first, paramedics said typical seizure behavior is different. That children usually roll their eyes, or stiffen or jerk and shake. Noah did none of that he remained limp in our arms the entire time. They suctioned out secretions in his mouth and his temperature was low at 96. We chose to go to the nearest hospital we could with the option to transfer to Children's if things worsened. Thankfully the ride was only 6 minutes long as Noah still isn't a great traveler and it often shows. Noah started to improve in those 6 minutes he started to focus on me, I got a smile from him, I seen him react to bumps and his breathing returned to normal.

Paramedics suspect maybe he was choking which caused a lack of proper oxygen which caused Noah's slight disorientation and non-reaction as they said they could still see he was "home" something they say isn't really typical for a child that is seizing. This of course is all so new to Chris and I. We have been so lucky we've dodged an emergency call for nearly two years. Something we both knew could happen at any time given Noah's medical history and problems. Chris tried not to cry, but I could see is face swelling with fear and his eyes filling with tears. We were the most two distraught parents one could probably ever see.

I went back to that place after Noah was born, the moment they tell you your child didn't breath for 13 minutes of have a heartbeat for 13 minutes. That place where you sink, your soul breaks and your mind and heart snap at the same time. You relive it over again in some way. All those feelings rushed back, I've suppressed them all for so long, knowing they'd always be with me. Always worried that something like this could happen.

Noah was still responsive and growing irritated and tired when we arrived at the hospital. They said blood work would likely tell them nothing, but they ran a chest x-ray to make sure that Noah wasn't suffering from silent aspiration a potential cause of his breathing difficulties. We waited for hours for the results only to find out that radiology was so backed up. So they read a preliminary one saying they thought all looked okay, and would release us home and if radiology found something they didn't they'd call us immediately.

Even though it was already the early morning hours when we released Noah woke up from a small sleep to still be happy on the short ride home. Thankfully his grandma and grandpa stayed with us the entire time. I don't know what I would do without them. I simply cannot do this alone. They followed us home because our warning light came on telling us we had a low tire. It's like one little problem after another. Such as the story of life goes. However the car tire is the least of my concerns.

Noah didn't want to co-sleep with us. So Chris slept on the floor close to him. I listened from the baby monitor to both of them. Waking up several times to Chris snoring but I had to make sure which person was making sounds. I had to feel Noah side to make sure he was breathing okay. That's what a scared mommy does. We both are feeling quite emotionally and physically drained this morning I plan to cancel Noah's therapies today and do nothing but watch him. Chris stayed home from work today, as he wouldn't be a safe driver with really no sleep. However, I suspect he has no more time off to take and won't be getting paid for today. I feel bad that life offers us up both these unexpected things all the time.

I pray this never happens again. Chris and I are trying so hard to keep Noah healthy, alive and well. I hate seeing my husband so scared and terrified, I hate feeling like my heart is being torn again from my chest. Noah is everything. I love that child beyond words. I can't lose him. I need him to feel whole. Once you have a child like Noah your entire world changes, how you do things change, how you perceive situations and things change, your sensitivity and emotions are always on your sleeve, you remain raw and exposed to the world.

I'm so thankful Chris was with him and got him upright immediately. He is the very best dad God could have ever sent me for Noah. He is so attentive, so loving, so kind and gentle with Noah. Chris calls often times just to check on Noah and hear him on speaker phone through the day just to know we're both okay. We're never off his mind. There simply isn't a better man out there, and I'm blessed to have an amazing husband and father for Noah. We're both in this together for better for for worse. Sharing the same fears and pain.

Thank you all for thinking of us and praying that little Noah stays well and does not suffer any more medical problems. I want that to be the last time I need to call for help. Hoping that Chris and I can regain a calm center of focus to get us through the holidays and Noah's 2nd birthday. Even though both of us I know will be on guard and a bit of pins and needles for a while since the fear of last night is so fresh to both of us.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Beary Merry Christmas!

2010-12-09T13:25:00.000-08:00

Free greeting card generated with Smilebox

This week as usual there have been a those occasional bumps in our road, but somehow the Christmas season, the Christmas cards, the special little Secret Santas in the mail, the smell of pine, and a waive from my neighbor that lives at least ten houses down makes everything feel like it's filled with peace, love and joy.

Everyday Chris comes to me and says is there something in that package I can use? And yesterday he got his answer. A cotter pin was at the bottom of a shipped box probably just by mistake and he picked it up thrilled like he had just been shopping in the tools section at Sears. I of course had no idea what a cotter pin was until he explained it to me, but I played with my Christmas towels and Noah's goodies and he walked around with this little cotter pin. It doesn't take much to thrill us, and honestly he really did love finding that cotter pin, and I got a great laugh. A sweet ending to our day.

Noah's on break for a little bit from his sensory class, occasionally we have a few new students that come in just to observe to see if it is a good match for them. Noah does relatively well with new people, he has to observe a lot just because he has no other way of really physically participating on his own with these other children. He tried a jumbo knob puzzle for the first time in class while sitting on my lap and it was the first time I thought that Noah was purposefully trying to pick it up and put it back in a spot. I'll have to look for one maybe for his birthday. I'm hoping it's not a specialty store that I have to order from. It was a 4 piece puzzle set, with an Elephant, Zebra, Giraffe, and I can't remember what the 4th animal was, but the knobs were big like drawer knobs on a child's dresser. I'm hoping that I can find something like it at Wal-mart or Target that is inexpensive. He seemed to be interested in it. And I'm always trying to find things that Noah seems to find fascinating. And it's great practice if he'll do it for his hands since he still cannot hold things or grasp items for more than mere seconds.

After Noah's pool therapy today, he got to meet the real Santa Claus. He was visiting just for a short while and came to watch him work in pool. He had such loving eyes, perfect little glasses, naturally rosy cheeks, that gentle beard, and the ho ho ho that gave you tingles down to your toes. Noah loved him. I loved him. It was like a moment out of a storybook come to life. Of course I had no camera with me, so only Noah and I will be able to hold that memory. But it was sweet. Santa gave him a bag of candy to share with his daddy, and told him how proud he was of him. Noah looked up and smiled as if he understood. It was one of those mommy moments where you get all teary because your child is just plain happy. It didn't matter that Noah couldn't hug, or sit, or walk or say thank you Santa, it didn't matter because their hearts touched and connected. Its the little things that tug at my heart so, all I have are the little things, but to me they are the biggest treasures God could have given me.

I finally finished our family Christmas cards, it took me a bit longer than I had hoped. Wishing you all a very happy and bright holiday season.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tri-City Elks Christmas

2010-12-04T19:26:00.000-08:00

Noah in one of the Biker's Hats from Tri-City Elks

Santa Arriving

Santa Greeting All the Children

Tri-City Elks Christmas

Santa

Noah's gifts from Santa

Today Noah got to participate in a very special event hosted by the Tri-City Elks. Santa arrived at his therapy school on his sled that was being towed on a trailer behind a truck with motorcycle escorts. It was reported that Santa was texting and sledding to check on his reindeer and to advise us of his estimated time of arrival. He's got access to some really great technology that he didn't have when I was a little girl! It was quite the event. We all met at the school and did a caravan through town as the Tri-City Elks on motorcycles even stopped traffic for us. It was the only time I think I've ever intentionally ran a red light, with being waived on and it felt so strange! Most traffic was nice about it, but there were some that didn't quite understand what our caravan was about, some I think even thought it was a funeral procession as they pulled over to offer a gesture of condolences.

One of the Tri-City Elks even gave Noah his hat temporarily to keep warm while we were greeting Santa on his sled. You could immediately feel the love and big hearts they had. They are an amazing group of people. Noah loved the action, and the motorcycles. They served all of us hot dogs, sloppy joes, chips, hot chocolate and lemonade for lunch. It felt so neighborly and you felt loved by all when you were there. Santa came in and gave presents to each child in the family that was there, one by one they were called up to receive their special gift from Santa. Noah did pretty well, but was approaching nap hour when he met with Santa today. Maybe he already thought he had told him all he need to tell him the other evening. But he didn't really want much part of Santa today. Just everyone else, as he flirted and smiled to get attention. Santa must have thought Noah was exceptionally great this year, as he got a kissing Elmo, and a toy that lights up and roars.

It was so nice of this organization to do this for for families like ours and our children like Noah. For every mean heart that exists it seems there is a hundred more out there to make up for it. They made a very special day for us and for Noah and so many other families. It really felt like what Christmas was all about. And driving home I just silently thanked God for allowing me this day, allowing me to wake up and breathe this beautiful air, to have the gift of my son's life, no matter how many difficulties we have faced in the past, are currently facing or will continue to face in the future. The feeling of overwhelming love from strangers makes you feel like you are very far from alone.

Noah and I have also been receiving treats in the mail this week from what we can tell is multiple Secret Santas in multiple states. We can't figure out where they are all coming from, as the handwritings are all different and the postage stamps are from multiple states and areas. Nonetheless, to all of you out there that have somehow coordinated this, thank you. These tiny daily treasures mean so much and bring us so much joy you can't imagine. It's like a piece of daily sunshine and it's the first time in two years we've looked forward to opening our mailbox! God bless all of you for your kindness and love.

I wish I could just hug all of you out there on behalf of my family and Noah. These last few weeks have been so uplifting, and so comforting. I hope to bottle up all this joy you all are bringing us to get us through all the tough times that still lay ahead.

Many blessings & love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Santa Comes on the Fire Truck!

2010-12-02T13:47:00.001-08:00

The Fire Truck

Nice to Meet you Santa

Telling Santa his List

Very Happy to see Santa

Letting Santa Hold me

Santa

Santa came for Noah on the fire truck last night from the City. This year he didn't squeal and cry in fear. He was a little unsure of Santa at first. I think touching his beard by accident may have sent him temporarily to the moon. But once he realized Santa was going to talk to him, and ask him questions he started talking back in his own little language. It was so sweet, and so precious. This Santa took so much time with Noah, and made him comfortable. I know they probably had dozens of kids left to see, but Santa offered Noah all the time he needed. They were such a gift to all of us last night. Santa was the best!

Noah's grandma got to come this time, she was sick last year and couldn't be with Noah for his 1st Santa visit. So it was so nice that she could come for the second. Of course she said it flooded memories of when we were little and Santa came for us all those years. It truly is a wonderful service that they do for the community. They bring so much joy to so many houses. An even bigger blessing for a child that is not mobile and lacks all motor skill abilities.

The firemen, and volunteers, also known as Santa's elves, were beyond kind too. Such an amazing group of people, I wish I could just hug them all season long, they'll probably never know what it means to us. They had the smaller fire truck this year which was neat, the City has so many vehicles I didn't even know they had. It's the only time that you ever want emergency lights to come for your little one, but Noah stared at the lights with joy, we took him outside and got pictures with the truck. Probably every little boy's dream. A fire truck with lights and Santa right next to it.

I've attached some pictures of Noah's visit with Santa, a beautiful night, that Chris and I are so blessed to be able to share with our little Noah. What a gift he's been to us, we're so glad he's here and that he fought so hard to stay. Building memories of the sweet times is what we always hold dear to our hearts. We have to cling to all that is good.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 2nd Thanksgiving

2010-11-29T20:03:00.000-08:00

Noah had a really Happy Thanksgiving. He's been quite the sweet little character lately, full of smiles and giggles. I love it when he's this happy. I know that it will never make up for the things he cannot do, but it gives me a sense that I'm at least making him as happy and comfortable as I can. He didn't gag once this holiday with food, which I consider a huge improvement. We're still so far away from eating real solids like children his age, but I remain so proud of his teeny tiny progress. His daddy put up the Christmas train, and Noah thinks that is just simply wonderful. Chris stalled until Sunday putting up the outdoor Christmas lights up to him it means dollar signs handed over to Xcel Energy. If only there were a less expensive way to celebrate with lights!

I received a letter from Regis Corporation a few days ago. They control the Supercuts chain and explained to me that there is not and has never been a policy regarding children sitting on booster seats and not on the laps of a parent. To me it made that burning in my heart so much worse. We were lied to. We were made to "think" that it was a policy for everyone, when in fact it was a policy for no one - an excuse, a lie in order to turn away our little Noah from a haircut. Noah by no means is difficult. He's only two, and behaves similar to any other child his age getting a haircut. He squirms and expresses his minor complaints. It's not like he's biting, clawing and unreasonable. The world of special needs and those that are handicapped have a tendency to make a lot of people simply uncomfortable just by being around them. I wish it wasn't that way but it is.

I contacted local media stations, our local newspaper, no one has taken any interest in covering this story, although I wish someone would, as change is not possible unless we discuss it. We cannot sweep it under the rug and pretend things like this don't happen. Change isn't possible otherwise. I don't know if I file complaints with the ADA or with other agencies if I'll even be heard, or if my paperwork will somehow just become like so many others in a pile and ignored. I don't know how to actively make sure this doesn't happen again to us or to another family. Regis Corporation was apologetic in their email, and said they contacted that location to advise them there was no policy, but that doesn't fix it, that doesn't change what happened. I really don't know where to go from here to be heard. To make change possible. I just know I don't ever want to be made to feel this way ever again, nor do I ever wish anyone to feel like we've felt.

I've attached some pictures of Noah's 2nd Thanksgiving. He had a absolutely wonderful day.

Remember God's bounty in the year. String the pearls of His favor. Hide the dark parts, except so far as they are breaking out in light! Give this one day to thanks, to joy, to gratitude!

~Henry Ward Beecher

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's Wish Lists

2010-11-27T08:32:00.000-08:00

Greeting card created with Smilebox

For those who have inquired about sending Noah a Birthday/Christmas Gift, these are his wish lists:

TARGET WISH LIST List name: Birthday & Christmas *** Created For: Noah Warden *** Target List ID: 012399302344702

https://www.target.com/lists/36MH5OZ0WOREO

TOYS R US/BABIES R US WISH LIST

CREATED BY: Stacy Warden and Chris Warden Wish List #: 30706526

http://www.toysrus.com/wishlist/index.jsp

The most important gift will always be your love, support and prayers.

Many blessings for a bright, beautiful, holiday season!

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sweet Surprises

2010-11-23T14:00:00.000-08:00

There are not enough words to even describe the outpouring of love from the community, friends, those of you around the world that are always there praying and caring, in the last few days. Never did I ever expect that so many would be there to support us, to give us strength, to help ease our pains. It means so much to our family that so many stood up and said this isn't right, that people with special needs should not be treated this way. It's so easy for me just to retreat when I'm hurt, I think it is that way for a lot of people. Due to all of your encouragement and support we've decided that this cannot happen again, that if I can spare just even one family from feeling what we've felt being turned away, then something good has come from something so bad. I plan to write letters to corporate offices, local locations, file complaints - whatever I need to do to be heard so that this does not happen again to anyone. Thank you all so very much for standing behind us, together we can make a difference after all.

Chris and I were so desperate to find a bit of happiness over the weekend that we started putting up Christmas feverishly. Out came Rudolph, Christmas Elmo, two trees, tons of collected ornaments, Noah's tree train, and garland that has seen way better days and no longer lights up! But it didn't matter we were trying to sprinkle the house with as much joy as we could find to override all the pains we've had lately. Chris was a fantastic sport about it, I promised I wouldn't turn the lights on frequently to cut down on our electrical costs and in return he dragged out both trees within a half hour. I even made a Sears photography appointment with less than a day's notice.

Noah received the sweet little puppy sweater that I had wanted so badly at Macy's from a very loving family. I opened the package and squealed like a little school girl with excitement. If Noah only knew how much I adored that sweater and it came just in time for our Christmas pictures at Sears. Thank goodness for Sears coupons for making the dream possible. It was the best eight dollars ever spent to see him smiling so beautifully in that puppy sweater I had dreamed about. I can't wait to post them when it arrives of Noah in this sweater. As I write this I'm still teary just thinking about it. There is so much that would have never been possible without the love from so many, you have no idea the difference you all have made in our lives. God bless each and everyone of you out there reading about Noah, and praying hard for us, you're always there in our hardest moments, and celebrating our joys with us. All of Noah's angels all across the world.

I was also hoping to put Noah in that same sweater for Santa this year. I had a bit of a panic, tears and pouting for an hour or so yesterday when I called to find out that Noah had not made it to the list as promised from last year. Santa and Mrs. Claus told me we wouldn't have to participate in the lottery, so I never called in to enter our names for the drawing, I just assumed we were on the list and would be called with our date. But when I didn't get a call, I called the City to find out that no one had told them Noah was on the list, and our district was full for a Santa visit. She said she had no way to verify that we were told we'd be exempt from the lottery, and was very nice and apologized. I however was still crushed. Feeling like once again I dropped the ball for little Noah in some way. Failed to get him Santa...

Later that day I received a message that there was room after all for a Santa visit for Noah, and I called my mother and Chris overjoyed. Now I hope that after all of it, he isn't as scared as he was last year with Santa... I want it to be just wonderful for him. Santa comes December 1st on the fire truck! Another joyful thing in addition to putting up Christmas.

It's like that song from Annie, "The sun will come out tomorrow, Tomorrow, Bet your bottom dollar, That Tomorrow, They'll be sun! Just thinkin' about Tomorrow Clears away the cobwebs, and the sorrow, 'Til there's none!

I have to keep remembering for every hard situation, for every tear, for all the hard work, for all the struggles, there will be sun, you just have to give it time for the skies to clear. And even if that sun doesn't last long, it will be back eventually. You just can't give up on it.

I hope this entry finds you all blessed this Thanksgiving holiday. May the day be filled with lots of love, laughter and beautiful memories to hold and keep a lifetime. Thank you for sharing in our lives, and praying for us. As I say a huge Thank You prayer for all of you.

With tremendous love and thanks,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

An Arrow Hits the Heart.... Again

2010-11-20T16:47:00.000-08:00

May 22, 2010, Noah was refused service at Fantastic Sams by a hair dresser. The same salon that had cut his hair three times previously. Some of my family had gone to Supercuts and recommended I go there. My family told them what had happened to us at Fantastic Sams, and they said they would absolutely help us, and would cut Noah's hair. They told us they felt bad we ever had that kind of experience anywhere. Today was also Noah's third haircut there. We walked in, called ahead like all the times before. They immediately whip out a child's booster seat, I reminded them Noah still cannot sit on his own, both hair stylists that were there already knew that. They both had cut his hair previously. They said that they would no longer cut Noah's hair that their corporate office told them they do not have to cut children's hair that cannot sit on their own in a booster seat. They said they would refuse to cut Noah's hair if we had to have him sit in our laps.

Chris looked at me, knowing I was wounded, not sure which direction I was going to go. Was I going to fall to pieces and cry? Was I going to stand up and fight for what I know to be wrong in my heart? Or was I going to put my tail between my legs and leave? I asked when this became policy. They said it always has been, they're just now enforcing it. I asked what my options were with a child that was handicapped and would probably be his entire life. Coldly the stylist turned to me and said I guess you should learn to cut his hair at home or have someone come out the house to do it. I felt like my heart was going to burst out of my chest and shatter into a million unrecognizable pieces onto the floor. Not again. Not in public. Not with all these other people there looking at me and my "special needs disabled child." Like me, my husband and my child are a defect. I was reliving it all again, the same moment. Why do I feel constantly discarded by society? Why can't I have the same rights and opportunities for my child? What makes this right? Doesn't this go against the Americans with Disabilities Act in some way? Why isn't there an exception for Noah, he can't help he cannot sit. He cannot help he's different. I cannot help this is our life. Why won't someone hear me? And why has this happened twice now at two different hair salon chains?

A few people have questioned my faith recently, saying if it were stronger things would be going easier. This isn't about not crying out for God, not asking him for help, not having faith all things will improve. I refuse to believe God is sitting up there thinking any of this is okay. Because I do everyday, pray so very hard for it all to turn around and get easier. I'm doing the best I can. Trying all I can. There are days I'd love to give up and I can't. I probably should have gambled on the drive to the children's salon that the other special needs mother told me about. But I thought just going up the street two minutes from home would be easier on Noah and he had been there previously without any problems. I could probably write a thousand letters to corporate offices, no one cares. No one would listen. No one understands the hurt and pain they've caused us. But this isn't right. How can they legally do this to us time and time again?

The stylist finally conceding knowing she was wrong said they'd cut Noah's hair one last time but that we would be refused in the future if Noah could not sit on his own for a haircut. I probably should have walked out, but I didn't. I sucked up those tears for twenty long minutes while Noah complained and fussed, he feeds so easily off my emotions. I don't even have to display them, he feels it, he knows what is happening. I told Chris in the car with my tears set free, I'm just not sure I can keep going through this, he turned to me and said I understand it is my pain too. But he said we have no choice. Chris stores his pain inside while mine is often displayed for the world to see.

So where do I go from here? These types of battles could happen to us our entire lives. Will I be at a zoo and refused entry? Will we be at a restaurant and told to leave? How is this happening in today's world? We have not come as far as everyone would like to believe. Discrimination is so alive, so evil and so strong. How do I fight against it? My skin is only so thick, even though I do my best to put up a brave face, I'm so fragile inside and I crumble with pain. We deserve the same rights as everyone else. I deserve the option of taking my son for a haircut just like any other mother. I deserve that right. Why must I be banished to having his hair done at home? I'm so hurt and angry. I can't make people understand what this is like. It's not their pain, not their special child, they will likely never feel what it is to be me, or live this life. There was no compassion, no understanding today. It almost felt calculated, premeditated, and purposeful. And not one of the customers at the salon stood up for us, they all looked and stared. I cannot help that Noah makes people uncomfortable. He is a person, he is different, but he's so beautiful and precious. How can you tell him to go away? And how on earth as his mother do I teach him to survive in a world that hates him at such an early age? How do I do that without breaking his precious little spirit?

I want all these answers that I don't have. I just want someone to come and fix it, fix my heart, fix my pain. This isn't acceptable that this keeps happening. It isn't.

"God whispers to us in our pleasures, speaks to us in our conscience, but shouts in our pains: It is His megaphone to rouse a deaf world." C. S. Lewis.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wooden Snowflakes

2010-11-16T18:23:00.000-08:00

Noah has had a pretty good week. He's been such a little champion at his therapies, and even at class today he was happy. We decorated wooden snowflakes today. On one side we decorated with markers designs and colors, and on the other side we put each child's name, size, age and listing of toys that they might like. These snowflakes are going on a tree for special needs children at a business location. And someone will pick Noah's name and give him a gift.

I participated in a tree gift giving at work at the courthouse for many years. I never gave it a second thought. I just pulled two names off the tree each year, bought gifts, wrapped them up and dropped it off at the CASA office. I never realized how much the need really is behind the name. I knew I would never meet the person I was gifting, it's something we all did, Judges, Magistrates, Division Clerks, and Court Staff. Now I'm on the other side, we are a name on a tree, and someone out there will be helping us and giving Noah a gift. There is so much behind the name. Real people, real children, needing help. It's nice to know that we're not forgotten. That special needs children matter too.

After we decorated our snowflakes for the tree, we all got into the pool for sensory class. Something we only do as a group every so often. Noah laughed and giggled and actually did quite well with other children splashing him. He was overall a good sport about it. Noah is the most physically challenged out of the group. And although he can't do as much as the other children can, we always feel included in all that they try to do. Even if he can't perform it and I have to simulate it for him. I do recognize we have a long way to go, but I'm so proud of him. He never gives up, and I admire his spirit.

One of the mothers that attends class with me just opened up a hair salon for children. I mentioned Noah's hair needed a cut. I've been delaying it for many reasons really. I think I'm still wounded in a lot of ways from that salon that refused Noah months ago because of his disabilities, and I've convinced myself that Noah plays more with his head and ears if it's longer. And I keep thinking any self-awareness and touching of his head is good for him. The name of the salon is Pigtails and Crewcuts designed just for children. She was so nice and said they'd love to have Noah there anytime. They are a bit of a drive for us. I don't know if Noah would make it that far or not, but the pictures of the salon look like something Noah would just love and be entertained by. It's even nice to find someone that understands and would never refuse us or look down upon Noah because he has special needs.
https://www.pigtailsandcrewcuts.com/default.aspx

Thank you to all that continue to pray so hard for Noah and our family. We always feel your love and are so thankful you are there sending us your words of encouragement and kindness.

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.