So what can I say about having a child with cerebral palsy? After going through all the shock, all the learning, all the adjusting, all the tears, all the questions, and all the surgeries and what not ahead of me, here is what I have to say:
First let me say that by no means am I happy that my daughter has a disability, but I am glad that I have been shown a better life and it is because my daughter has a disability that I have learned about this better life.
Just days after Emily's doctor suggested we have her evaluated for mild CP, we had to travel 3 hours to an appointment for Emily to see an Opthamologist to follow up on her undiagnosed (even today) eye problems. As we were waiting in the small examining room, I began to pace a bit with my 10 month (chronological) baby in my arms. I began to look at all the pictures of children on the bulletin board, then I slowly paced the four short steps to the other side of the room. I stopped and returned to the board to look at the pictures again, this time purposely looking for the disabilities. At that moment I realized the metamorphosis that had already began. I realized that the first time I gazed at those pictures all I saw was beautiful children, each and every one a miracle and it wasn't until I thought about it and returned to the bulletin board that I noticed toddlers with thick glasses, the many children with crossed or lazy eyes, and even the ones in a wheelchair or with Downs Syndrome. I realized that if I had seen that bulletin board only a week prior I would have FIRST noticed all of the disabilities and I know I would have been saddened and uncomfortable!
I am quite ashamed, in a way, to admit that I used to be uncomfortable if I met someone on the street pushing a person with a severe disability in a wheelchair. I never knew what to say to someone who was disabled.
IT'S ALL FEAR OF THE UNKNOWN. My opinion, after my metamorphosis, is that the only true thing to fear is fear itself!! Granted, it is a lot more work, a lot more responsibility, a lot more fighting for them when your child has a disability. But isn't parenting itself a lot more than what you thought it would be?
Each of you will have to decide for yourself whether you think I am "religious" in what I am about to say. I do definitely believe in God but what I am about to say really doesn't have anything to do with whether or not you believe in God or what religion you practice. I whole-heartedly believe that our bodies are merely shells that our spirits use. I first witnessed this as a teenager when I attended a funeral for the first time. There was my grandmother's body, but that was NOT Grandma! "Grandma" was a personality, a lifestyle, a way of thinking, love, friendship, warmth, etc, -- all intangible things! This holds true for my Emily -- Emily's spirit is undamaged at this point - environmental factors are what damage our spirits. Emily's body - the shell her spirit uses to function - was damaged most likely due to her premature birth, which, in my case, saved both of our lives!
I nurture Emily's spirit and assist her in overcoming the extra hurdles she will have to face functioning with her imperfect body. When we give birth to a child we first want to know if the baby is "all right", well what are we really asking? I would certainly say that Emily is "all right", but when I asked after her birth I certainly would NOT have thought that everything was all right if they could have told me right then that my baby had a disability. "All right" is only a state of mind. I do wonder, though, why human nature makes it so that we must actually be "not all right" physically (or, in my case, my child) to truly be "all right" mentally and spiritually.
I have been "touched" in a way that I cannot describe. I have made more friends, helped many people, and just truly appreciate the little things -- things most people don't even think about! The trauma of nearly dying from severe pre-eclampsia and having a premature baby certainly played a big part in who I have become, but even more so, becoming part of a world with people who have disabilities is the clincher.
A FINAL THOUGHT: I read somewhere (sorry I can't give proper credit) that if you think about it, we all have a disability. In my own words now, how many people wear glasses or contact lenses to correct imperfect vision? How many more wear hearing aids -- or even worse, how many need them but won't face it and get help? What about those people who skip gym class or make up an excuse not to participate due to a lack of athletic ability -- perhaps we should call them athletically disabled? As parents, we are certain to worry, and we should to some degree. I ask that you look closely at what you are worrying about, remember what I said about fear, and remember what is truly important in life -- your child having a delay or disability or not having the child at all? -- your child having an imperfect body or your child having a shining spirit to be enjoyed by all who are graced by their presence?
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