Cooper turns 4 in less than a month. Like any normal toddler, he's beyond excited for his birthday and party. He can't wait to go to Texas Roadhouse and sit on the saddle. He wants a Lightning McQueen birthday party. And the best part? He'll be four years old, just like some of his friends and his cousin.
"And then when I turn four, I will finally be able to walk and run around like everyone else. Right, mom?"
Around Easter this year I realized that Coop thinks other kids can walk because they're older than him. He didn't realize his cousin was the same age as him because his cousin walks and he doesn't. He even thought the smaller kids we know that walk were older than him. So I knew this was coming. I knew he was expecting to be able to walk after his birthday. But we hadn't had a conversation about it yet. He hadn't actually verbalized it to me yet. But he did last night. He knows he has SMA. When people ask him why he uses a wheelchair, he tells them, "I have SMA." But he doesn't specifically know that SMA is something most people don't have. He doesn't know that SMA is the reason he might never take a step on his own. He just knows he has it. And to him, using a wheelchair isn't out of the ordinary because it's all he knows. So it makes perfect sense to him that he uses a wheelchair because of SMA.
But last night I knew I had to tell him more. He's a little older now. And smarter than any four year old should ever be. So I knew it was time to explain SMA a little more to him. Explain why SMA is the reason he uses a chair.
I explained to him that he isn't going to be able to walk when he turns 4. I told him that SMA means he was born with his muscles not being as strong as they should be. Cody explained that's why he goes swimming every week. To help him muscles get stronger.
I could tell we were having a conversation he didn't want to have. He started to be silly and was changing the subject every chance he could. But we continued explaining to him that it's okay that he doesn't walk. It's okay that he uses a wheelchair and it's okay if he never walks. I told him he might walk someday but it probably won't be for a while.
He seemed unbothered by it. And maybe he was. But I just can't stop thinking about how he thought he was going to walk soon. He thought all it would take is turning four.
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