Focus on today.

Since Cooper's delays began I have tried to be as upbeat and positive as possible. I took a few days after his diagnosis to allow myself to wallow in my feelings and really, truly be sad for myself. I still feel that same sadness creep in every now and then but I try not to stay there for too long. Because, if I'm being honest, I could be sad all the time. I could spend the rest of my life being sad. Being mad. Being bitter. But I don't want to do that.

Of course, I'm sad. I'm sad that my family's and my son's life probably won't ever turn out anything like I'd pictured. I'm sad that I won't get to watch my son play traditional sports.

Sure, I'm angry. I'm angry at the damn neurologist who we trusted to help our son. I'm angry that even when I asked him to test for SMA he said he wasn't sick enough. And I'm so freaking mad that even though there was an amazing treatment available to babies born with SMA our state didn't implement newborn SMA screening before Cooper was born.

And yeah, I'm bitter. I'm bitter that everyone else seems to have perfectly healthy children except for me. I see a child Cooper's age or even younger and I feel that bitterness creeping in. He should be running around and playing with his sister, cousins and friends.

He's making small improvements every single day. But if I'm being honest, he isn't doing as well as I hoped he would be by now. Probably because I had some pretty lofty goals for him during our quarantine. I know they weren't realistic and I know that if we're ever going to reach those goals it's going to take a whole lot of physical therapy and tons of determination. Luckily this kid has more determination than anybody I know.

When we first learned of Coop's diagnosis and his treatment options, we knew right away that we wanted to go with Zolgensma. It was a one time infusion that would literally give him the gene he was born without. We knew this wasn't a magical fix and we still had a long road ahead of us. At first I told myself he would never do all the things we'd always dreamed of our son doing. But then, as we started noticing improvement almost right away, I let myself think that maybe, just maybe, he'd make a full recovery. He would get this treatment, do a little therapy, and catch up to his peers. He'd be just as strong as any other boy his age.

I'm slowly coming to terms with the fact that, that just isn't going to happen. I have days where all I can think about is what Coop can't and may never do. If I'm being honest, most days are like that. I blame it on being stuck at home for the last 4 months. Maybe someday he'll be able to do all of the things a typical child can. But not today, not tomorrow, probably not even in the next few years. He's strong. So much stronger than he was in March. And I know he's getting better. But he still can't sit himself up. He isn't able to lift his head when on his belly yet. He still isn't bearing weight on his legs. And if you're carrying him and turn too fast, he can't stop himself from tipping over.

That's not to say he won't ever do those things. I have all the faith in the world that someday he will be able to do all of those things with ease. But right now our reality is that our almost 2 year old child is still stuck in an 8 month old's body.

But he's here. He's healthy. He can breathe on his own. He can eat on his own. That's way more than so many other SMA kids can do. Had he been born just a few years earlier, he may not even be able to do those things.

I do my best not to dwell on what could've or should've been because there's nothing we can do to change where we're at right now. No matter how much I focus on the past, I can't go back. I can't change it. I'm learning that it isn't worth my time and energy. I'm learning to redirect my thoughts and do my best to focus on the positives. Focus on today and what my sweet baby can do today.