When I first heard the words spina bifida I had no idea what they meant. I knew I didnt want to hear them, and I knew they were words that packed a powerful meaning. I first heard these words on September 24, 2009. I heard them said as the condition that my baby boy would be born with.
Spina Bifida----- myelomengingocele in our case. An open neural tube defect.
They were words that I couldn't really understand at the time. The dr. explained it as best he could, even used a baby doll as a illustration... drew pictures... showed us medical books. Still I didn't quite understand. I went home and googled the words.... Most research left me in tears. It left me hurt and it left me feeling scared and helpless. Praise the Lord in my research I found a community of mothers whose children also had spina bifida. The first I remember meeting was Emily. She had a son whose name was also Carson.... he was just a few months old at the time.... he was adorable... and she was sweet and so very helpful. I met other mothers and read blogs about children who were miraculous... children who were living with spina bifida. They were happy, and adorable children who were doing everything that other children their age were doing. I remember reading at the time about one little boy who was very active in wheelchair sports. Very active and very good. I remember reading about a little girl who just took her first steps in a walker. I met friends. I met help and I met comfort. I learned that though there would be lots of new words added to my vocabulary (ex. hydrocephalus, kidney reflux, lesion level, chiari malformation, etc. ) everything was going to be ok. I learned that spina bifida was being redefined. It was not what google said. Kids as young as 2 days old were bringing an entirely new light and meaning to the words.
On November 11, I met my Carson. As I placed my hand in his I knew confirmation of all these words. Especially strength and even more so love. These words have themselves gained a new meaning in my life.
From a very young age Carson could put up a fight.
And he loves to flex his "muscles"
Him redefining love is pretty obvious. Everyday I take new photos of this LOVE.
Because I can't help it. He brings so much joy and so much laughter to my life. There are so many moments I just do not want to forget. When I see him and I see his happy face and hear that belly laugh I do not think about spina bifida the same.
So few people know about spina bifida. It is extremely sad. What is even sadder is the false information that is given online and given by doctors to those who are expecting a child with spina bifida. Believe it or not, many women are encouraged to abort the baby. Spina bifida is among the conditions that is considered medically necessary even. They consider the quality of life to be hindered and therefore disregard the sanctity of life and abort.
But we can do something. We must do something. Please help us redefine spina bifida. Please help us spread awareness about what spina bifida really is. Support Carson and support his friends. You can purchase a t-shirt, tote bag, even a hoodie.Go to http://urbanupcycling.blogspot.com/ and place your order. FAST! You have till Tuesday February 1.