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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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
"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.
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.
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.
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
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.
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.
Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Today, Noah has the diagnosis of hypoxic-ischemic encephalopathy resulting in spastic quadriplegia cerebral palsy with athetoid movements. Noah's miracle has brought our story to all of you.
Good Morning Christmas
Happy About Santa
Happy Birthday Noah!
From our family to yours, we wish you a Merry Christmas filled with lots of love, laughter and blessings!
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
Food can be so fun & messy
Noah's 1st solid meal 
Noah's Upright Swing
Noah's Blues Clues Pumpkin
.jpg)
