Friday, November 25, 2011

Thanksgiving Blessings

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

Sunday, November 13, 2011

Noah's 3rd Halloween

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Noah's Upright Swing

Noah's Blues Clues Pumpkin

Noah the Race Car Driver

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

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

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

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

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

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


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