Strolling Backwards

The wind took a break today so Noah and I ventured out to attempt the stroller today. The start was quite rocky. Tears per usual so I had to walk in front of the stroller and tug it by the sun shade until Noah calmed. I'm sure my neighbors must find me hysterical. I don't get to do much the traditional way. We walked up the street to where I went to elementary school. Today was field day. Out of all days I picked today to walk that direction. Hundreds of kids laughing, running, playing, kicking.

There is a piece of my heart that is broken that Noah may never get the chance to do things like field day. All those parents cheering their little ones on, not even knowing what a gift it is to have a child that moves so effortlessly. I don't blend in with them. Noah is old enough now that it's obvious in that he holds his posture different. They know I'm not like them. I'm the odd parent out. We cannot swap stories about our children running and getting into trouble, cannot chat about what little Johnny said this morning... they cannot relate to me. It's like I'm on this separate island, and no one wants to travel there, nor do they want to send me a plane ticket to come visit them on the main island.

The representative that is fitting Noah with his special shoes and theratogs came out today. She says she's seen all sorts of developmentally delayed children that do quite well. It was so very nice of her to say, and I genuinely feel she was telling me the truth. Not just trying to offer me false words of encouragement. She was very sincere and sweet even in offering me her own life's difficult experiences.

I still cling to that dream - that hope that Noah will still find a way to walk and talk. It's not about accepting how life is, or may always be. It's about loving your child so much that you can't give up. I wish God would just come to me in a dream and tell me if the happily ever after is being written. Or if he's chosen to make this book have a different ending than the one my heart is craving.

Faith Baby Children's Apparel is donating a portion of proceeds of purchases that come from Noah's blog site to help pay for his therapy costs. If you are interested in purchasing Christian baby clothing please click on the Faith Baby picture/widget on Noah's site and it will send a link to give credit towards your purchase for Noah. Please remember to use the picture link as that is the only way Noah will receive credit for your purchases.

“Youth fades; love droops, the leaves of friendship fall; A mother's secret hope outlives them all.”
–Oliver Wendell Holmes

Love,

An Arrow Hits the Heart

I contemplated whether I should write today, for my feelings are raw, my thoughts sharp, but my heart simply wounded. But in all fairness this is what life can be like, it's an honest account of our days.

I should have known today would have presented a challenge. I felt it in the wind, I heard it whisper to me, but I did my best to ignore it's warnings. We went early this morning to get Noah a haircut. Haircuts for him are really no big deal. He really only complains when you spray his hair to wet it, and if he hears a blow-dryer. All things considering I have always believed he's done a marvelous job at allowing his hair to be cut.

We checked in and asked for our last hairdresser that had cut Noah's hair the time before. She shouted out to us as she was finishing the her current customer, "I just can't deal with you today." I knew what she meant. It could have been taken a million different ways, but I understood she didn't want to deal with Noah because he has challenges. My heart sank, I said that's fine whoever would cut his hair would be fine. He landed with a lady that seemed disinterested in the task, as if her number were up or she drew the short straw. I didn't even get her name. All the while I could feel the stares cling to us from the staff soon also catching the attention of other customers. Noah of course fussed more than usual this time, probably picking up on his mother's feelings, choking back the pain not to disclose my heartache.

We paid and quickly left, still with all eyes on us even as we walked out the door. We went around the corner to the store to get tea for Chris' work lunches. Ironically at the check-out was the same hairstylist that refused to cut Noah's hair. She wouldn't even look at us - especially him, and then I knew it was confirmed. It's was most certainly because Noah was different. Not because she was too busy, or needed to go on lunch break.

Noah is not contagious. You can't catch what he has. He's just a little boy. A precious little boy. My little boy. He cannot help that he has a brain injury. I absorbed the pain for both of us, as I'm thankful he didn't understand what happened today. They say you can only allow people so much power to make you feel a certain way. I understand that, believe me I do. But sometimes practicing that theory is harder than it sounds. Actions hurt, words hurt, stares hurt and being denied having someone cut your child's hair because he has a disability hurts.

How is it that people have such fear and unkindness towards those that are different in any way? Perfection is all that is rewarded, all that is seen. Anything less is discarded like trash.

I held my composure, feeling the tears I refused to let flow all the while burning my eyes on the way home. I called my mother so she could come help me as I had to take one of my dogs to the vet for a foot injury that needed medical attention. She of course asked me how Noah's haircut went and the tears that had been so forced back just flowed as I stood in the garage, and I just sobbed to her my pain over what happened. My heart had been shot with an arrow. And I was bleeding from the inside. How am I going to protect Noah from such cruelty if it is already present when he's only seventeen months old? What do I say if he notices the stares and understands the words? How do I fix that part for him? How can I nurse him through the wounds that he'll acquire at the hands of others?

"Science may have found a cure for most evils; but it has found no remedy for the worst of them all -- the apathy of human beings." - Helen Keller

Love,

Gentle Cotton

Noah enjoying his inflatable yard turtle

Theratog Suit front view

The Theratog Suit back view

Super interested in the bright pretty flower

Noah moves a lot. In fact a lot is sometimes an understatement. His arms and legs are almost always moving, so when you find him relaxed and just peaceful it's really nice. Yesterday the blowing cotton caught his attention and he sat completely still watching each piece as it danced with the wind. He was in awe. Clearly studying how this little white bundle had the ability to float so delicately. Some would fall gently on him and he'd look down and let out a sweet quite sigh - as if it were heavenly to him.

We had Noah's PT and OT therapy yesterday. We are going to get Noah a bath seat. I hope he likes it. It's always so hard with therapy equipment because you don't really get the opportunity to try it out, and if he hates it, much like he does his kidcart, you don't have the option of getting something else. There are a million things I'd like to get for Noah to try, but can't really get my hands on them. The Special Tomato Stroller looks great, so does the Tom Cross Country stroller, as well as the seat 2 go that adpativemall.com carries. Medicaid won't help me, and many of the items are out of reach financially for us. I try to convince myself that maybe Noah doesn't need them, maybe it wouldn't make a difference to have them or not. But there is always that little birdie that won't get off my shoulder that says I need to try to get all I can. And the darn bird won't stop chirping at me.

Noah tried a Theratog suit yesterday at therapy. It was a really neat suit. It's very soft, thin, stretchy fabric, he didn't seem to mind it at all. It actually looked rather comfortable. Medicaid will help us get a suit and also some beginner ankle supports (AFO's) for Noah, with the hopes that it will help him get ready for walking. That is an exciting thought that I try to guard delicately. It's walking that fine line of getting too excited prematurely. We have a long way to go.

I was pleased that Noah had a great time at therapy yesterday he was quite vocal, it was nice that he showed off his growing skills, and was mostly all smiles and laughter. And it is so great to be able to report little improvements, as I was so eager to share that meltables are going great. Noah still has a tendency to want to store food at the roof of his mouth however, so we've agreed that he needs to stay on the meltables stage for some more time. His tongue just doesn't go play fetch at the top of his mouth. But it moves great side to side, and he'll bite down with his front teeth to get pieces that he wants. He even seems to know when he's got a piece he thinks is too big as he'll spit it out.

Chris and I are getting ready for the 5K Run/walk for Two Angels Foundation this weekend. We are so happy that we'll be able to participate and we're rather looking forward to meeting other great people making a difference in the lives of others. The weather is looking like it will be a beautiful day for us for a run/walk. They invited Noah to participate in an adaptive run (in a stroller or adaptive equipment), but we're thinking Noah simply is going to want a nap then and won't want to participate. It was such a kind invitation for him to be included.

"Wishing will never be a substitute for prayer." --Ed Cole

prayers for Noah at:

http://prayersforlittleangels.blogspot.com/

Love,

The Gift of Happiness

"A truly happy person is one who can enjoy the scenery while on a detour."
~Author Unknown

My heart can swell with immeasurable amounts of happiness each day just by being with sweet little Noah. Some days choosing to be happy is a conscious decision, but most days it comes quite naturally on it's own. Noah has been especially happy the last few days too, the sun has peaked out and he's back to enjoying watching nature in the backyard.

Happiness is such a gift. Despite Noah's many challenges he is truly happy, which makes me glow in the inside. He loves life. He finds simple pleasures in playing in beans, laughing at Elmo, giggling at his daddy snuggling against his neck. He doesn't have to be running around or talking up a storm to be happy. He has found the key so many people don't even find as adults. He has found the root of all happiness.

A million books are probably written about how to find Happiness and Joy. But I don't think it's something you can capture and bottle or something you can learn in a book. It's something you have to feel in your soul, within your heart. There are days when I simply don't have the answers that I'm seeking and I suppose if I were to dwell on them long-term my happiness level could take a tremendous and even permanent dive. We may not be in control of every turn our lives may take, but we do have the choice to be happy to find our joy in each day. Everything seems brighter on the horizon if you can just remind yourself to find happiness. Whether that means you jot yourself a reminder note in your blackberry, write "be happy" on your Starbucks cup, or sticky note it to your lunch pail...

And those around you will be much more dramatically happy too. Emotions are one of the most contagious bugs around. Sadness always finds sadness, joy will always find other joy. I've been quite blessed to have some great friends in our lives that are always happy. Sure they have brief moments just like the rest of us, but they are truly wonderful to be around because they are so bubbly and happy. I can't help but always want to be full of smiles with their company. And that is the key to getting through any difficult day. Find the smile, find the happy. Search it out, hunt for it - stalk it if you have to. Many other emotions could be described as "toxic", except for true joy and happiness.

My life as you all know has taken a "detour." I'm on a road that is unmarked, bumpy, with often scary roads without highway guards. It comes with no roadmap, and gas stations that are so far in the distance you have to remind yourself to stock up on extra fuel to get to the next place. When I first started out on this road it was very stormy, but it is summertime now, flowers are blossoming on each side, and happiness is all around me as I travel my detour.

Love,

Noah Meets Elmo

To help raise funds for Children's Miracle Network, Costco had picture day with Elmo. Of course we had to take Noah to get his picture taken with his favorite little red monster. I wasn't sure if Noah would react the same way to a real live Elmo like he did with Santa Claus, but Noah clearly knew who Elmo was and thought it was wonderful.

Noah was a little unsure of Elmo when he was being held on his own. I think he thought Elmo might drop him, since he doesn't sit like regular babies he went a bit sideways and it caught him off guard. But he looked up at Elmo after the picture was taken and then decided to smile once he knew he was secure and not going to tumble.

Both our hearts were flooded with joy simultaneously as we watched our little sweet Noah fall in love with seeing a real Elmo. It's the simple joys we enjoy so much, and to watch his little face light up and hear that sigh of happiness in his voice makes for the best day. Chris and I are so blessed with these tiny treasures that each day can bring.

Noah has also been having a blast playing in his dried macaroni and beans. He loves to squish them under his feet and attempt to grab handfuls at the same time. I think it is helping his sensory issues as I am now able to occasionally put his feet in the grass or touching concrete without him crying in a sort of fear of the sensation.

"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault

Love,

The Resilient Family

Having a child with challenges can significantly and almost instantly change family dynamics. Many have asked me about Noah's entire family, how have they handled the crisis? Have they risen to the occasion to act as the "village"? Are they there day and night if need be? Are they all there for us?

The answer is sadly, no.

To the defense of many of them they are simply too far away to help, but their hearts are always with us. While other bonds have broken down and simply are no longer present.

"Irving Dickman and Dr. Sol Gordon (1985, p. 109) share in their book One Miracle at a Time, that “it is not the child's disability that handicaps and disintegrates families; it is the way they react to it and to each other.” I've learned you can't force anyone to understand - even family. I'm sure there are various reasons for family breakdowns after a disability occurs within the family unit. Reasons that could vary from embarrassment, overwhelming emotions of sadness or grief, the loss of dreams for a grandson or granddaughter, the stress of having to care for this child differently. This phenomenon happens to many families. In fact most families I've spoken with have at least one or more family member that has distanced themselves purposefully from the situation. Whether they completely withdraw, or intentionally cause a rift that spreads like wildfire amongst the entire family.

Sometimes there are "cracks" in a relationship that already exist and coupled with the presentation of the stress a disabled family member presents just causes that crack to turn into a complete break.

It's also very hard for some family and even some friends to understand a situation or a disability when it is completely foreign to them. Many would have loved to dismiss Noah's neurological arching as simple baby acid reflux - something temporary - as the idea of something really being neurologically wrong with Noah was beyond comprehension for them. Families also get highly sensitive when it comes to parental advice. Even with normal developing children. Those that have parented before you give you unsolicited advice thinking that your challenged child is like all other babies in the family before them. Let them cry it out - not so great for the neurological baby that gets so distraught that aspiration becomes a minute to minute risk. Swaddle them and they'll quit crying - not the case for a baby that finds every position uncomfortable. Taking the time to learn how to care for a child with special needs is also difficult for some family members. Some families view it as a case of "bad parenting" rather than an "disability."

"However, if your family unit separates, you can each still go on to build full and productive lives” (Albrecht, 1995, p. 24) Raising a child who has a physical disability . This is the key to becoming a special family; providing the children with a stable family system." And this is where the tremendous strong bond that Chris and I have comes in. We cannot spend a large amount of time grieving over the loss of relationships that have broken down. We simply have no choice but to embrace the struggle and move forward. Our positive energy has to be devoted to Noah. The relationship that we have between us is important to demonstrate to Noah that he is indeed loved beyond all other factors is one of the many important keys to his continued recovery. He would never thrive in a distraught and unhappy home.

Having family or even friends close that door of support doesn't have to be a catastrophe. Is it sad? Most certainly so. But Chris and I have learned, as with many other families, that support comes in all different shapes and forms. Noah is loved by so many, proof in his caringbridge guestbook messages. And although Chris and I face the occasional off-the-wall negative comment, the majority of support is overwhelming and that is what counts. And most days we feel like there are those who have adopted us as their own. For those that feel forsaken, know that you're never alone. Even if there is just one person out there that cares, that's all you need. Most importantly cling to what matters, discard the rest.

When thinking about family discussions this quote gave me a bit of a chuckle:
"If you cannot get rid of the family skeleton, you may as well make it dance."
Gerorge Bernard Shaw

Love,

Noah's Birdhouse

I had a beautiful mother's day. It's a day that is extra special to my heart. There were days that I thought I would never get to celebrate mother's day - well not in the sense of having Noah with me. Although our life can be hard, I'm so very fortunate that I get to celebrate it with this sweet little person.

Noah, with his daddy's help, got me a Noah's Ark birdhouse with two bird feeders. It was the perfect Mother's Day gift from him. So very sweet and thoughtful. And his card was just as equally precious. A big picture of Noah glued to the front of a card his daddy helped him customize.

I toured a school for Noah this week, granted he's a bit young still but there is currently a wait list. It is a school that accepts both special needs children and normal developing children which is really nice. However if Noah isn't walking by the time he starts school, I would need to attend with him. I don't mind that idea, in fact it's rather comforting because I'd be right there with him as long as he needed me to be. The classes are a small size with two teachers per class and any parents that needs to attend with their children. The facility was comfortable, warm and welcoming. The staff seemed loving and they knew the names of every single child we came across on our tour giving you the sense that every single child in attendance was important to them.

I liked that everyone was included, not just a select few children. It was a nice idea that Noah could plant flowers, read books, create craft projects and participate in everyway along side other children with or without disabilities. I've always worried that Noah wouldn't be included as he gets older. Almost like the popular Christmas song "Rudolph the Red-nosed Reindeer" if you are "different" no one wants to include you - "all of the other reindeer used to laugh and call him names, they never let poor Rudolph join in any reindeer games." And you didn't get the feeling that the children or the staff were separated by those who could or those who couldn't. Everyone was equal. If only I could give him that feeling his entire life. It is a comfort that this school exists for little ones like him.

I think our May snow and cold temperatures have made Noah a bit cranky. He is such a nature boy and doesn't quite understand why I won't take him outside in the backyard to study the trees and watch the birds and airplanes in the distance. I love that he's so involved in learning. I can see he's like a giant sponge absorbing everything I tell him about. I know that it is in his favor. He may not sit, talk, walk or crawl but Noah understands everything.

The other day Noah and I were out and about and when we were walking to the car in the parking lot a small boy rolled down the window in his family's white Suburban with tinted windows to holler as loud as he could "Hello Noah." I turned to see if I recognized this loud pint-sized voice, but the child was completely new to me. I had never seen him before. He was maybe three or four, dark curly hair everywhere, with a deeper olive complexion. Noah smiled back as if they knew each other. Their connection is a mystery to me. If the weather had been nicer I probably would have explored why this child seemed to know Noah, but I quickly buckled him his car seat to be protected by the warmth of the car.

It's certainly not the first time I've had an interesting "enigma encounter." Much like last summer when the elderly lady on the bike path and touched Noah and said he's special and here to do great things promising me that I would see her again in the future. Periodically the unexplainable just happens and I just have to go with it, as I don't have the answers. But I remember them all the same as if they are pieces to a puzzle that I'll eventually put together.

Attached is a link to watch Noah's Miracle Network Story: http://www.givemiracles.org/miracles/450

Love,

Happy Mother's Day




Love,

The Love Touch

There are some things that Noah will never learn in therapy. He can't learn what it feels like to be cuddled when you're scared, can't learn that a tender kiss can fix a lot of boo-boos, can't learn that a soft song can help you through a rough night. A mother's love is the most amazing bond for any child.

From a neurological standpoint, in my opinion, it's even more beneficial for children like Noah to have extra attention for the brain's continuing development. It would be easy for someone to put a baby like Noah in a corner and forget about him. He's not mobile, cannot sit, cannot play like other babies his age and throw toys or piece them together, can't talk or tell you yet his his needs. Some might consider Noah a boring baby, I consider him the most intriguing and loving human being on earth. But children like Noah need more attention than normal developing children do. His brain needs lots of interaction to learn and build pathways.

While watching a therapy video of a child with a brachial plexus injury (which is an injury to the network of nerves that originates from the spinal cord and controls muscle movements and sensation in the shoulder, arm and hand), I realized that the therapist was indeed kissing on the child's hand for reinforcement. And over time the child would make an effort to reach out it's hand for another kiss. Now you're probably thinking how could the child have felt anything from that kiss if the network of nerves had been so severely damaged. Well the brain is a mysterious thing, and who's to say if that child felt anything or not, or if it simply enjoyed the loving attention it was receiving from that movement.

I've applied that same idea to Noah. Noah's arms can be very stiff at the elbows. Granted Noah has complete feeling, but his nervous system needs a bit of help transmitting signals into proper movements. I can get the same type of results with Noah by kissing on his arms and hands, and gently caressing his arms with my finger tips, slowly but surely he'll release his tight arms and allow me to put his arms in the air over his head. He also responds to gentle shaking of his arms as you move them upwards and releases the tension. He'll still of course revert to his comfortable pattern of stiffness over time, but it's teaching his brain slowly that there is another way for his arms to be.

Granted, therapy has it's role, but so does a mother's love and tenderness - or even a father's for that matter. There is something that is so beneficial in a child's recovery that comes from his or her parents. I knew the moment that we first brought Noah home that his will to thrive soared. He wanted to be home, he wanted to be loved, he wanted us. And he still wants us. As parents of any child we are their first teachers, their first line of defense, and their first love.

There are days when I wonder am I doing enough for him? Could I be doing more? Teaching him more? Showing him more? I'm sure all parents feel that to some degree, but with having a special needs baby that feeling is magnified times a thousand.

Today I brought out Noah's dried pinto beans for play for the first time. I put them in a tupperware bowl and let him squish the beans between his toes, kick them and even reach for them with his hands and grab them. Granted this is safe because Noah cannot get the beans to his mouth, but should there be a time when he's able to, bean therapy will have to go. But for now, he's loving every second of it. I've attached a great resource link for home-made therapy ideas and learning toys. Therapy equipment and toys are often so expensive it leaves you feeling helpless to purchase everything you'd like to. And sometimes the best things are as simple as a bowl of dried beans.

http://www.ssco.org/ocdbe/PDFs/holdon.pdf

Noah and I have also found our favorite Elmo DVD. The Best of Elmo 2, is our favorite. He loves all the songs and the dancing. I love how he makes a cub-like roar at the sound of hearing Elmo's voice or squeals with excitement at watching Elmo ride a bike through the park. Our best days are spent dancing and singing together, just the two of us.

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." ~Elizabeth Stone

Love,

Simple Blessings

Noah and his Buddy Caleb

Costco Miracle Network Wall

Noah's Miracle Network Story Poster

Noah continues to be just as sweet and darling as ever. His laughter just melts every fiber of my being and I can't help but just feel the purest joy. He's been showing off for his grandma this weekend, sucking on his hand and even a thumb. His grandma has that magic "love touch."

We were able to make it to Coscto today to pick up a handful of things and seen Noah's picture and story on the wall to support The Children's Miracle Network donations. It's so nice to see that Noah's story will encourage others to help children in need. Please donate and receive your Miracle Network balloon. If you don't have a special name for your balloon, please feel free to write in Noah's name. Last year it was so wonderful to walk in and see a wall full of balloons with donations made in his name. I took some pictures of the board at Costco with Noah's story.

Noah is becoming more vocal, still no words, but a whole different set of sounds. I love this little baby bear roar he does when he gets very excited. And the squeals he makes when his daddy nuzzles his face. And of course the conversations he has with Elmo on TV are quite adorable too. I still have hope that all those interesting sounds will one day turn into words.

I went out shopping today and seen the cutest little Noah's Arc child's bench. I wanted to get it, and probably could have afforded it as it was priced reasonably, but I knew Noah could not sit on it, he'd just arch and slide right off it. I was a little sad driving home until I said to myself Noah wouldn't care that he couldn't sit on that bench he's just happy to be here.

He had a great Sunday. Chris and I took him to the mall to meet up with my friend Heather her mother, and boys. To our surprise Noah did fantastic in the stroller. Not a single cry. All smiles and laughter. He really enjoyed Heather's boys. They fascinate him. It was a great time just strolling up and down the mall.

We received our pictures back from Brian Kraft Photography and Foothills Church/MOPS who helped us get family photographs. I don't think I'll ever be able to look at a picture of Noah and not get all teary with sincere joy. He is so handsome and beautiful in every way.

http://www.briankraft.com/MOPS/Brian-Kraft-Photography-Warden.html

"Life holds so many simple blessings, each day bringing its own individual wonder."

John McLeod

Love,

Stacy, Chris & Noah