I’m sure that when some people hear that I’m raising a child with cerebral palsy, their minds immediately leap to the issues I may face. In large part, I am unaware of the specifics–Charlie is my only child and it is from time to time that my aching back reminds me that most three year olds don’t have to be carried or that I notice the ease that comes when I child can actually tell you what hurts when they are crying.
Sore backs and mind-reading aside, there are subtle changes that I cannot deny–they have become a part of who I am and I’m afraid they might be with me to stay. You see, there are problems with raising a special needs child, but they might not be what you think.
- I find myself acutely aware of the power of my words and many are now off-limits. I’ve abandoned idiot, dumb, spastic, and moron in addition to the much-reviled “r-word.” Not because anyone is making me, but because I now know that words can wound even if I can’t see the scars.
- I see people who used to be invisible. At moments it’s wonderful–I admire that the girl in wheelchair can use a straw–not as easy as it looks! At Mardi Gras I once threw some beads to a man in a wheelchair and was rewarded with a smile that I still keep with me. But it can also be heartbreaking–seeing a child and hoping that their parents are doing enough, that the doctors realize their potential, but not knowing for sure.
- Sometimes I congratulate people on their spectacularly advanced child only to discover that they are simply reaching milestones on time. You see, I stopped looking at the baby book a long time ago and have no idea what “normal” looks like any more. I hope my friends will forgive me.
- I pretty much blow a gasket when I see someone abusing handicap parking spots. My husband always thinks I’m over-reacting, but can’t help myself. I also can’t help but notice when a store is set up in a way that would limit a wheelchair user from getting around. Even if we’re not using the wheelchair–it still bugs me.
- I’m suspicious of black and white statements. When I hear that a child “will never be normal” I wonder what exactly normal is and who gets to decide. When I hear that someone “would have no quality of life” ask the same questions. And I will never forget that the child who was supposed to be “brain dead” could work a VCR, DVD player, and iPad at the age of three.
- I forget that not every medical crisis is my business and have the rein myself in when I hear about one–restricting myself to saying a prayer rather than Googling the best hospital in the country for that particular issue and finding five blogs in keeping.
- I react inappropriately to “bad” news. For instance, during one of my early ultrasounds, they were unable to detect one of the twins’ kidneys. The doctor started to explain that I shouldn’t worry, it might be the angle, blah, blah, blah and I stopped him and said, “oh, it’s fine.” He was a bit taken aback before I explained, “I deal in fatal and not-fatal–this isn’t fatal.” I’m pretty sure he still thought I was a weirdo. And not to worry, the kid totally has two kidneys.
- And worst of all, sometimes I get so hung up on therapy schedules, doctor visits, prescription refills, the latest research, learning activities, etc. that I forget that these things are there to help to our quality of life and not to ruin it. I have to remind myself that as he is, my child is complete and not in need of “fixing.”
The essential “problem” is that I’ll never be who I was before. I’ll never be able to move blindly past some of the neglect, carelessness, or even callousness that I was previously unaware of. My innocence is gone–that’s the problem. And frankly, I think it’s OK–I like this version of myself better anyway.