Believe it or not, this SMA life seems to be getting easier. Most days. I did an over the phone survey with a genetic counselor from Nationwide back in the Fall and it made me realize how much I've healed in the last year. How much less angry I am this year than I was last year. I've got another post coming about that because it was such a therapeutic conversation. And because I don't feel like I've shared anything positive in quite a while.
Even though things have been better, the holidays were rough. They just seem to hit different when your kid is in a wheelchair. When we go to a family member's house and there's no room for him to get around. When we're spending time with our friends' and family's littles that get to run around and go up and down the stairs and do whatever they want. And I sit with my baby. On the floor. Usually by ourselves. Because you can't teach 3 and 4 year olds to stay put and involve him the entire time. I can't expect them to remember him while they're running around playing with the others. They do include him. But it's hard. They don't understand why Coopy can't play with and follow them everywhere they go.
Stupid SMA.
At one point while Cody and I were Christmas shopping one afternoon, I somehow ended up near the cleats. Instant heartbreak. Knowing my guy will never be able to use them. Something else I hadn't really thought about before. Something else I now have to make a conscious effort to avoid when in a store.
I was so caught off guard by that realization and those thoughts that I found myself just standing there, in the middle of the aisle, staring at those shoes. Tears welling up in my eyes, knowing I probably looked like such a crazy person. I don't know how long I stood there before Cody rounded the corner. Maybe a minute? Maybe only a few seconds? I honestly have no clue. And I don't know if he realized how much it affected me or not but he walked up, grabbed my hand, gave it a squeeze, and walked me away from that aisle. We didn't talk about it after that. We didn't have to. Whether or not he knew how much my heart was breaking, I'm sure his was breaking just as much.
Stupid, stupid SMA.
And then just the other night while I was bathing him, he said one of those things that stopped me in my tracks and left me struggling to speak. He was stretched out in the bottom of the tub. I was washing his little belly and legs and toes. I was telling him how big of a boy he is and said, "You're basically a big kid now! You're getting so grown up!" And of course, right on cue, he said, "But I can't stand yet." Now, you might think this is what got me. But I hear those words all the time now. He's fully aware of the fact that he can't stand and others his age and size can. So hearing him saying that these days isn't the hard part. I responded with, "You can't stand yet. That's why we go to swimming each week. That's why Miss Megan wants you to work as hard as you can each week. She's helping you get those muscles stronger so someday you can stand."
And then he said it...
"Yes! So when I'm all grown up, I'll be big and strong like my dad! When I grow up, I'll have big strong muscles and I'll be able to carry my kids and lift them up so they can walk on the ceiling and be Spider Man. Just like my daddy does to me."
Of all the things for my three year old to say about growing up, he talks about wanting to grow up and be a daddy. Because all three year old boys talk about being daddies, right? He wants to lift his kids all the way to the ceiling and let them pretend they're Spider Man just like he does with his dad.
What are the chances of that happening? I don't know. At this point, pretty slim. At this point, he'll be lucky if he's able to walk when he's a dad. Chances are he'll be in a wheelchair. If that's the case, he won't even be able to reach the ceiling. Not to mention the fact that he'll probably never have the strength to lift a child above his head.
I've thought about him growing up and getting married and becoming a dad. I've thought about some of the struggles he'll face through all of that. But I'd never thought of this. I'd never thought about how he won't be able to do the things with his kids that his dad does with him.
Add another check to the heartbreak column.
Stupid, stupid, STUPID SMA.
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