When Hard Things Help You With the Important Stuff

Some days do not want to be good ones. We had one of those days this past Sunday.

I was determined to get to church on time. From the get-go, many factors were working against me. For one, my husband wasn’t home.

My son without Duchenne, Chance, is playing on a travel baseball team that has him all over the country most of the summer. We’re thankful that my husband’s job can be done remotely, so he works as they travel. This is great for Chance and my husband, Jason, but not so great for a determined mom at home with an infant, a 7-year-old, and three boys with Duchenne muscular dystrophy (DMD).

All of these children depend on me to get them ready. It’s slow work getting them fed, given their medications, dressed, in their chairs, teeth brushed, and out the door. This Sunday, though, we were given some extra obstacles.

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At first I was ahead of schedule and had time to dry and straighten my hair. Hallelujah! But as I smugly gave myself all the positive affirmations and thought about how I might brag about my accomplishment on social media, the power went out. I don’t know what happened, but it affected our entire neighborhood. It was suddenly a boring and predictable mom bun for me.

We were still on track to make it to church on time. I needed to finish getting the baby in her car seat, but sent my 7-year-old out to start loading her brothers. Yes, she can operate the wheelchair-accessible van lift like a professional, and I needed her help. When I got there, my sons Max and Rowen and their chairs were in the van, but the lift would not fold shut.

I tried everything we could to get it closed, to no avail. It’s a good thing I’m a stubborn person. When I set my mind on something, like getting someplace on time, it’s hard to sway me.

It was nothing short of a miracle, but we still had just enough time to make it to the start of Mass; we live only a few minutes away. We could still unload the boys. But the lift went up and down and unfolded, then wouldn’t fold shut. So we got the boys out of the van and left the doors wide open and the lift unfolded, hanging out the back end.

We have a backup van with a manual ramp. The ramp is heavy, and the van is not a high-top, so it’s not supercomfortable for the boys. But it can get us where we need to be.

My children thought I’d lost my mind. They were ready to go back inside and watch Mass on TV, but I didn’t want to concede. So into the big blue backup and off to Mass. We were sitting in our pew in the front of the church before the priest began his processional! We also found a pair of long-lost dress shoes under a seat of the blue van.

It felt like good versus evil since we were on our way to church, and I wasn’t about to let the devil win. It also felt a little bit like a taunt. In a sing-song voice, Duchenne said, “It’s too hard. You can’t do it.”

I’ve thought about that Sunday morning over the last few days. I’ve come to a couple of conclusions. First, we decided not to let a rough start ruin the day. I feel like in our lives with Duchenne, we’re forced to make a choice. Will we let Duchenne ruin our lives, or will we make our lives work the way we want them, even if the how is different than we’d expected?

Second, sometimes we must go through hard things to find something we’re missing. It was pretty literal for us this time. We had a hard morning, but we found shoes that are very important to us; they’re the shoes Max performs in.

But in many less literal ways, we’ve experienced this, too. We found how deep our faith was rooted when our sons were diagnosed. We realized the depth of our love for each other and our children. We learned to love them in ways I don’t think we could’ve fathomed if they didn’t have this fatal, muscle-wasting disease. We found our courage. We’re brave enough to dream big dreams.

Duchenne challenged us to live, and through that challenge, Duchenne helped us find what matters, living the days we get and loving the people we have.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.