I Can’t Do That Anymore

I have a confession to make. Sometimes I focus way too much on the negative things in my life. I see a family riding bikes and my heart sinks, my boys can’t do that anymore, I think to myself somberly. The other day I bought our daughter a small trampoline. My first thought when I brought it home was, I hope this doesn’t make my boys feel left out, which of course it didn’t. They even cheered for her as she jumped and practiced for her next gymnastics class.

This thought process is one of my biggest depression triggers. Instead of looking at the world as a place for everyone, I see it as a place for only ambulatory people. I’m the first to encourage my boys to avoid this mindset, yet I find myself spiraling out of control into a web of self-pity and sadness. If my son asks if he can be a certain occupation, I make sure he knows that he can – it may look different for him, but it’s possible. I don’t want them to see the world as a dark place full of obstacles, yet I fear that’s exactly how I view it sometimes.

One night I was tucking in my boys and noticed my oldest son reading a framed picture on his wall. I made it when the boys were little so I knew what it said. It’s just a wall-hanging titled brothers, that lists all the things brothers do together. “Stand in my corner, play Legos, be my best friend “– stuff like that. Then at the top, I noticed it said “play catch” and “build forts.” My heart sank once again. “Mom, you may want to take the catch thing off of there and the build forts, since we can’t do those things anymore.” I wanted to scream and cry about how unfair life is, I wanted to smash the picture and sob in a corner like a toddler having a tantrum. I wanted to change those words immediately, but I didn’t.

He wasn’t sad when he said that. He’s a very honest, blunt person and he rarely shows emotion. If I started to cry, he would just feel worse so I took a deep breath and said, “you can design the fort, and I can build it. “You can play catch with a big ball or something light.” He laughed and put the comforter over his head. “Look I built a fort,” he giggled. We laughed and I kissed him goodnight, blown away by his ability to find humor in something unquestionably sad. I left the room with pride, not sorrow, because of him.

I’ve realized that my boys have the same thoughts as I do sometimes. They look at things and think I can’t do that anymore, but they don’t dwell on it. They don’t stay there like I do. They don’t allow those thoughts to take them into a dark place. I’m inspired by them in so many ways. On a daily basis, they teach me how to be a better person and a better Duchenne mom. I’m so inspired to try to model their attitudes about life, instead of getting sucked into a world of negativity.

I suffer from depression, so this is not a magic fix, but it does help when something like this triggers me. We were driving past a park we used to play at the other day and I felt that familiar gut-punch reminding me of yet another thing that we can’t do anymore.

Then a few miles ahead, I saw a family hiking up a mountain trail. I started down that road to sorrow until I stopped and thought for a second. I took a play out of my son’s playbook and found humor in it. I thought about how clumsy I am and how my boys are always teasing me about it. I thought about how my daughter complains like she’s being tortured anytime we exercise together. Suddenly I wasn’t sad anymore, I was smiling. I was accepting of our reality, not wishing for someone else’s. That’s not us anyway. Duchenne or not, we are not hikers so why should I let that get me down?

So, what if we can’t do certain things. So, what if we have to make adjustments or improvise to do the things we like to do. We still do them. We still live a beautiful life that we love, and honestly the things we can’t do kind of make the things we can do sweeter. I can’t control my depression or anxiety, but I’m learning to control the thoughts that trigger it. I’m realizing that if my boys can roll around our cul-de-sac while others ride their bikes nearby and say, “We are faster in our chairs anyway,” then I can learn to stay positive too.

Every day I try to view the world through the eyes of my sons. I try to think ahead and watch how I respond to hard questions. I try to make sure they know how loved they are, exactly as they are. I try to help them focus on all the things they can do, not the things they’re unable to do. Since their diagnosis I promised myself, I’d stay strong and show my boys that they can still do fun things, even if it looks a bit different. I’m not sure I’ve been the one to stay strong, I’d have to give that credit to God. At the beginning of our journey with Duchenne, I vowed to teach them how to live abundantly, but somewhere along the way, I realized that they’ve been the ones teaching me the whole time.