Disclaimer: This is one I those random posts I will have from time to time that has little or nothing to do with the project, but I feel it needs to be said.
My almost 5 year old son was born with a disability. Because of a brain injury at birth he now has spastic quadriplegic cerebral palsy. He has trouble eating, speaking, walking, keeping his balance, and performing most fine and gross motor skills. He needs a lot of help to do the things a normal 5 year old would do.
When he was born I felt very alone. I ostracized myself from my friends, I read blogs on how people who don’t have special needs children couldn’t possibly understand how hard it is. someone introduced me to a poem about holland (it’s a great poem and you should look it up if you don’t know it) which made me cry, so I read it over and over again to make myself cry. I read that poem at least once every day. I tried to write a book about my experience with his birth and what it was like to have a disabled child. At one point when he was about six months old I pulled my car over on the highway and cried. I cried for myself because of how hard it was for me to have my life flipped upside down. It would never be the same. That’s when I got myself a therapist, because it wasn’t about me.
I love my child. My son is the best person he can be and I do not want him to grow up thinking there is something wrong with him, or thinking that he is a burden on me or any of his other family, because he isn’t. Is it exhausting to feed him, dress him, brush his teeth, help to physically place him in the positions he wants to sit in, carry him to the bathroom when he needs to go, yes, heck yes it is, but I don’t let him see that. I take that to my therapist every 2 weeks and complain to her about how exhausting it is. I do this because on top of him knowing that he isn’t like other kids his age who can do these things I don’t want him to think he is a burden on me, because it’s not about me.
It’s about him and helping him to grow up to be the best person he can be. I watch other parents fight tooth and nail over every little injustice that is or could be done to their special needs child. They fight about non handicapped playgrounds, wheelchair ramps, handicapped accessible this and that, and while I think it’s important to fight for the things that matter I also know that the world doesn’t work to accommodate people. I fight the battles I think are important but I don’t want him to watch me fight any and all battle I come across because the world accommodates no one, disabled or not.
I don’t want my life to become consumed and defined by my sons disability. His disability happened, we now have to find ways to adjust our lives to it and move on. It’s a thing in our lives but it’s not his life. He is bound for greater things than that and I want him to know that. I decided a long time ago that I was going to try as hard as I could to not separate myself from the world. To not be like the blogs I once read. I read them now and those people aren’t me. I don’t separate myself from my non special needs moms because ” they couldn’t possibly understand” or “they don’t know how to act around us” because I don’t see myself as different. I have different struggles than them but we all have struggles, ours are just more apparent. I do not want my son to watch me limit myself because if his disability because he will learn to do the same thing, and he is not a victim. We have to learn to adapt to our environment instead of exclude ourselves from it.
The most important lesson I want to teach my children is that God made them beautiful and He doesn’t make mistakes. It is our job not to make the world fit our circumstances but to see the world and ask “how can I figure this out”. If my son wants to do something I help him figure out a way he can do it given his circumstances and the kid usually finds a way to do it. It may take some temper tantrums and arguments and lot and lots of time but he does it. That’s how the world works, for all of us. My children are not victims and neither and I.