I Am Not Spina Bifida, I Am Lily

I am Loved

My grandma said she loved me before I was born. That is truly conceivable, since she was there together with my parents and siblings for my first sonogram. My family was giddy with excitement to discover if they would be adding a new sister or brother to their tribe. The sonogram Monitors were well placed so all could see me wiggle around inside my mother’s womb. The technician shared in the exuberance of the little crowd, and started the magic machine which could reveal images of me. Oohs and aahs were uttered as my tiny hand, foot or other little body part was recognized. Mommy, Daddy, my sisters, brother and Grandma saw images of my cute face, and discovered that I would most probably be a little girl. At first there was so much joy and anticipation, until a sudden hush fell over the room.

What about me?

The tech had noted classic characteristics of Spina Bifida, a birth defect in my spine and brain. All of a sudden, a doctor entered and suggested that grandma take the children to another room, while my Daddy stayed with mother. What had been a very happy occasion turned into tears and worries in an instant. My poor mother lie there emotionally injured. While grandmother tried to entertain my brother and sisters, a well-meaning physician shared the blatant facts with my parents. My spirit was housed in a broken and bent physical body. He encouraged them to abort me (calling me a fetus), since the likelihood of my being severely handicapped was imminent. What? What about me? My spirit was strong! I would be good and try to not cause too much trouble.

My "condition"

My parents thought about it only for a brief moment, and declared that they could not abort an innocent baby. Just the thought of it (to them) was bizarre and inhumane. They mustered up the courage and determination to raise a less than perfect baby. Years of operations, medical bills, daily cathetering, wheelchairs, were only part of what they faced. They were given a glimmer of hope that there was a possibility the defect could be fixed in utero, but it was highly unlikely. It was later confirmed that the defect was at L7, so the operation was impossible. My families hopes and dreams for me were sorely challenged, but they never wavered in their faith that my spirit would be strong.

I am Lily

I am Lily! I was born December 15, 2008 with all my fingers and toes, and an adorable little face with bright blue eyes. My spinal cord had not developed properly, and was partially outside of my back, encased in a little sac. I was adored and loved as much, and even more (out of compassion) than most babies. My family supported me through many years of medical procedures and daily, even hourly extraordinary care. Now I am five years old. I have my own pink wheelchair, and can go faster than most people can walk. I have great upper body strength developed from many years of pulling myself around by my arms and hands. I love to sing and dance. Yes, I dance in my wheelchair. My parents took me to dance lessons to learn how to be graceful and meet other children like me.

I can do it!

I spent much of my earthly life on the floor, on my skateboard, on the couch or in my hot pink chair. There is also a gizmo called the kangaroo which helps me jump around. I attend preschool and I am very witty. My parents got me a great playground that I can climb by myself and go down the slide. I have worn braces on my legs since I was tiny, because I have club feet. My upper body is a size larger than my lower body since the lower muscles are not used. My grandma used to pinch my legs to see if I could feel anything. It is okay, because it doesn’t hurt. My grandma thinks I am a bit bossy, because I always tell her what to do, but she usually does it anyway.