Monday, July 6, 2009

Ground Floor Opportunities


I believed fiercely that my child would make it. I never once wavered in this thought. We were told by the NICU doctor he could have little to no problems at all. OR – he could be completely retarded, disabled and require a lifetime of care. We asked if it could be something in between. The doctor allowed himself to show a knowing smile, and I saw a brief spark of compassion in his eyes. The fear that gripped our hearts that day was like no other. I suddenly felt bad for him, and wiped my eyes. “It must be difficult for you”, I said, leaning back in my chair. He tilted his head toward me as a question. “Every time you have to say these things to parents”, I said. “It probably doesn’t get easier.” He was surprised to hear this as a response to the bad news he had just delivered. But in that moment, I felt for him as much as I did for us.

Fast forward 16 months. Seeing our son move his limbs, feed himself, watching him use sign language, I am filled with hope that is the complete antithesis of the fear I felt that day. But I am on a roller coaster of questions and feelings. One minute everything feels normal. The normal you want for your children and your life. The next minute is filled with making doctor appointments, scheduling three therapists, helmet fittings and trying out gait trainers. My son giggles in his bouncer and I laugh along with him. He screams during therapy because his body is being stretched in ways to which his brain wants to say no. The first time I saw my son in a gait trainer three times his size, I wanted to cry. Though I know he has limitations, it was all too real in that moment.

I only want two things for him: to be able to take care of himself when he is older, and to fit in socially. This is not different from what we all want for our children. I have so many questions. Will he be able to be in a regular classroom? Will he be sad if he cannot run and jump and play? Will the other kids tease him? Will he be in therapy forever? Will he walk? Will he need a wheelchair? Will we need a one story house? How will he feel about his body not working the same as other kids?

I know he was born healthy. How will I keep my sadness and feelings out of what I must do? I must teach him to reach for his best, be all he can be, and go for what he wants. It may all sound cliché, but it never sounded so necessary to me before now. He cannot know my pain. He must believe deep down that he is capable.

This quote from “For the Love of Rachel: A Father's Story”, hit me square in the face one day: “Accepting the limitations of a child whose life was supposed to be imbued with endless possibilities requires us to come to terms with expectations of ourselves and the world around us.”

None of this occurred to me before. I was not patient. I am good at being alone. Now we must always wait – for results, appointments, diagnoses. And I will never again be alone. I have never needed as many people as I do now. I was never so grateful for people who care. People who will help my son live a life that I cannot possibly give him alone.

The other day while his brother and sister walked around fighting over toys and playing, I lay down on the floor next to him. This is his vantage point on the world. I put my face close to his and stayed next to him for a long time. We looked in each others' eyes and his small fingers gripped mine. This little guy has personality to spare, he is smart, with a sweet face, bright blue eyes and a smile to beat the band. In his eyes I could see possibility. Laying there on the ground, I knew that this child is blessed with something that will carry him toward opportunities. They may not be my possibilities, but even if he never gets off of the floor, he will rise.

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