How I Learned Not to Borrow Tomorrow’s Trouble Today

I had one of those moments that hit you hard with a dose of the future last week. And those hits hurt.

I was pushing my baby daughter, Callie, in her stroller. We were on a walk to the middle school my son Rowen attends. I happily thought about it being the school Callie would attend someday.

I imagined having all the kids in school and what that would be like, and it hit like a jolt of lightning straight to my heart. When Callie is in middle school, it’s possible her brothers could be gone. Anxiety gripped me as that reality sunk in.

It hurt because I was not imagining the happy kind of gone, like going to college or getting married and living on their own like her other siblings. Instead, in 12 years, when it is time for Callie to go to middle school, her three brothers with Duchenne muscular dystrophy (DMD) will be 28, 25, and 23. And although I know young men with Duchenne are living and thriving at those ages, I know of more that haven’t lived to be that old. It took my breath out of my lungs. It caused physical pain in my chest.

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As much as I think our future looks brighter than I could have imagined when the boys were diagnosed over 10 years ago, it scares me in equal amounts. I love my kids so much. But imagining life without them, well, I just can’t. It hurts.

I was stressed out last week. My husband, Jason, was traveling for work, and as the boys get older, it is harder for me to do it all by myself. We keep saying we need to find help, but it’s not easy. The new baby came with a set of needs all her own, and the boys, especially my 13-year-old, Rowen, are finding it difficult to alter their routine to help me help everyone. My stress level did not lend itself to a positive attitude or outlook, even though I prefer to have both.

I was glad I was on a walk when I had that moment. I was about a mile from home, and I needed the exercise to help me process my thoughts. I want to say I felt better by the time I got home, but those moments rattle me.

However, I reminded myself not to borrow tomorrow’s trouble today. It’s something someone told me, or maybe it was something I read — I can’t remember for sure — when we were at the beginning of our journey with DMD. Regardless, it has always stuck with me as a mantra of sorts.

I write a lot positively, both here and on my blog and social media accounts. I try to find the joy in our days and experiences and share them in hopes that it helps someone else see a positive light when living their own lives affected by Duchenne.

However, I hope that it doesn’t make me seem naive. Duchenne is a hard life. It’s hard to watch our children struggle to control their gross motor skills and other things that come so easily to their peers and siblings, only to watch them lose those same abilities a short decade later.

I have hard days, and I feel many feelings that range from anger and sadness to joy and happiness. I’ve learned that happiness and joy don’t mean an absence of pain and sorrow. They coexist.

That all said, what I try to do is focus on today. If there is trouble today or something bad happens, I deal with it; I feel it. But if it’s something that changes our lives, like loss of ambulation, a broken leg, or a new piece of equipment, we begin again to learn our new way.

But what I try not to do is think about what might happen. The steps my family and many others are taking for Duchenne today, like clinical trials and new treatments, are steps that have never been taken before. We don’t know what the future will bring. We can be hopeful.

We don’t know what’s going to happen. It may be challenging, but it also might be amazing. We can’t start to mourn and grieve for things that haven’t happened yet; it only makes our life with Duchenne harder. That’s what my mantra, “don’t borrow tomorrow’s trouble today,” means to me.

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.