everyone knows someone who has a kid with it.
Maybe you have one, too.
Saw this on Motherhood is hard. Admit it.. truemomconfessions.com (beware: some of the confessions are NOT family-blog friendly...)
autism= a life sentence of wondering what my son could've been.
I have looked at Jonathan and wondered, "What if he were normal (typical/not affected with either Fragile X or autism)?" What would he be like? At almost 20, would he still be living at home? Would he have a girlfriend? Would he wear his hair long, steal $20's out of my purse and roll his eyes at everything I said?
I don't know these things. I do know that he is the way he is. Sometimes, that frustrates the living batcrap outta me. Seriously....Many days, my life can be reducued to one word: repetition. Repeating the same instructions/words/remark over and over and over and over.......
You get it. Maybe you don't.
Sometimes, I meet other Moms (who I secretly think have perfect lives but I know they don't) and they look at my life, my kids and they say, "Oh Suzanne, you're so brave......"
Let me say this VERY loudly: I am NOT brave. I am not a firefighter who runs into a burning building. I didn't ASK for this. I didn't volunteer. I was punched in the gut when I got the news that my son, my beautiful then-almost 3 year, would never grow up. My sister was pregnant when I got the news and I knew it would ripple through our family like a genetic tidal wave. That might sound dramatic but that's exactly what happened.
But I didn't ask for this. I don't walk around saying, "Oh look at me. Pity me, I have "special" kids. I have it hard." I live my life. I wake up each day and try and not screw them up royally. I make mistakes. I learn along the way. Having a disabled child is not a punishment nor is it a badge of honor. It's just the way it is.
Today, we were in Wal-Mart, right near the WV border (where LOTS of odd people live) and someone made fun of Jonathan. He blew it off but I couldn't. I marched up to them and "educated" them. Probably not a Kodak moment for Fragile X & Autism awareness but I couldn't help it. He's fragile and beautiful and he's the way God made him. Don't pity him though. Just get to know him. He'll tell you knock-knock jokes. He'll say "Bless you" when you sneeze. He'll open your car door for you. He's a whole person.
I wouldn't change him. I couldn't. He wouldn't be Jonathan if I did.