A few months ago I did a survey over the phone for a genetic counselor at Nationwide. It was for a study she was conducting in order to better the experience for parents of children who received gene therapy. She asked me to start from the very beginning of our story and just kind of go through everything and tell her how we ended up at Nationwide and what our journey to a diagnosis was like.
It was the most therapeutic thing I've done since diagnosis day. Cody had done it the day before so I kind of knew what questions she was going to ask and what to expect. I knew I was going to get emotional but I didn't realize how good it was going to be for me. I found myself telling her that I'm not nearly as angry as I used to be. I told her that I've accepted that this is our life. Believe it or not, I hadn't realized any of that until I was saying those words to her. But it's the truth. I spent the entire first year after Cooper's diagnosis being so dang mad. At his neurologist. At God. At myself. Almost every single day I would ask myself, "How could you not notice? How did you let him get that bad before really fighting for answers?" I also spent a lot of time thinking if only we could go back in time. If only we could somehow know when he was born and get him treatment right away. Things would be so different.
I still have these thoughts sometimes. I still get mad. I still question why us? Why him? But I'm healing. I won't ever be the same. I won't ever be fully healed. But I'm doing so much better than I was last year. I'm no longer dwelling on what could've been and what should've been. I'm focused on our future and doing whatever it takes to help our little man. I spent a lot of time last year thinking about what life would be like when he can walk. I know now that if that happens, it won't be for a long time. So I've started focusing on what we can do now. How can we make the most of our situation as it is right now. Because I don't want to waste anymore time thinking about things that might happen. I need to enjoy my family and my life as it is right now.
That's not to say I don't still struggle. I do. It's still hard to see other kids run around and live a normal life. It's especially hard to see the kiddos who were diagnosed with SMA as a newborn, who have the same number of copies of the SMN2 gene that Cooper has. Typically kiddos with the same number of copies of SMN2 will develop similarly. But many of the ones diagnosed through newborn screening have been able to receive Zolgensma before any symptoms of SMA are detected. And while this is so incredibly amazing for them and their families, it's so hard to see these kiddos progress normally in the way that my little boy should be. Don't get me wrong, I am beyond thrilled for these children and their families. No child should live with the effects of this disease. No family should have to go through any of the things SMA families go through. But I'd be lying if I said I didn't feel a little twinge of jealousy when I see those kiddos running around. The difference is, a year ago, I would've obsessed over the fact that my baby should be doing that too. I would've spent an unhealthy amount of time thinking about how unfair it was that my sweet little boy didn't get the chance to be symptom free.
Now, I think about how happy I am for those families. I wish ours was one of them but it isn't. Nothing can change that. I still get sad about it. Sometimes I have to scroll past certain posts or videos because they still hurt too much. But I don't obsess. I don't spend my free time thinking about how unfair this life is. I spend my free time thinking about where we're going to spend our next vacation and what fun things we'll be able to do as a family with a wheelchair. I think about how incredibly smart and funny my child is. I think about what kind of trouble his mouth will get him into when he goes to school. (If you know, you know.)
So yeah, I'm doing better these days. I have bad days. I have bad weeks, if I'm being honest. But it isn't as bad as it was. And I'm not angry anymore. I'm still sad. But I think there's a slight bit of perpetual sadness when you're raising a child who isn't able to do all the things he wishes he could. And I'm way more emotional now than I was 2 years ago. But sometimes I think that's because I'm just more aware now. I'm more aware of how fragile life is. I'm more aware of how lucky we truly are to have access to the equipment and medicine and knowledge that we have. I feel more now, too. I think that's because I look at every single aspect of life differently. I look at people and wonder what they're carrying. Everyone is carrying something. Mine is a special needs son and a disease that has completely changed our lives. But you can't see that just by looking at me.
I'm a work in progress. Just like Coop’s strength and abilities. Just like his muscles. Just like every other person carrying something hard and traumatic.
We‘re all just a work in progress.
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