Embracing the season we’re in before preparing for the next one

A columnist has mixed emotions as her sons with DMD face a new chapter of life

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by Betty Vertin |

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The grass is finally green. Fragrance from lilac and other flowering trees fills the air. The fresh blooms brightly contrast the blue sky. These are all signs that spring has sprung and summer is just around the corner.

I love seasonal changes in Nebraska. We are fortunate to experience all four of them here. And while spring is beautiful, restoring life after a bland winter, summer is my favorite.

The backyard pool is filled and waiting for warmer days, and the seeds I planted weeks ago are breaking through the ground in my garden. As of today, six of my seven kids are out of school for summer vacation.

As a result, the pace will be slower, the mornings later, and the bedtime routine more relaxed. I have eagerly awaited the summer months.

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I still face typical teenage behavior, even if my sons use a wheelchair

Summer marks a new chapter of life

However, the approaching summer means the start of a new chapter for my family. My oldest of three sons with Duchenne muscular dystrophy (DMD), Max, 17, took his last final exam yesterday and is now officially a high school senior.

Over the next 12 months, Max, his dad, and I will visit colleges and decide if he will live on campus or at home. After that, life will change regardless of where he goes or where he lives. He will be an adult.

Earlier this week, my second son with DMD, Rowen, 14, had his eighth grade promotion and is now a freshman in high school. He is leaving a small, private middle school and will join his older brothers, Max and Chance, at a larger public school. So much will change for Rowen, too.

I’m emotional about these things. Sometimes I’m excited and wonder what will be next for the boys. But other times, there’s a pit in my stomach, and I feel like I could dry heave.

I think back to the boys as preschoolers and kindergartners. Back then, as I was learning about DMD and what it meant for my sons, I was afraid to dream about them experiencing high school and college. In those days, I worried that declining health might prevent them from having typical experiences. I should be ecstatic about the fact that they have opportunities I feared they wouldn’t.

But the truth is, it scares me. So I want to hold on to where my sons are now.

In kindergarten, I walked them into the classroom, helped them to their little desks, and had friendly chats with their teachers. I know that doesn’t happen in high school. Any discussion with teachers is through email and individualized education program (IEP) meetings. I don’t get to be hands-on anymore.

And college is something foreign to me. If Max lives on campus, we must figure out how to manage his care, leave him to make his own decisions, and instruct his caregivers. And Mom definitely can’t be the one to email his professors!

Don’t get me wrong, I’m thrilled that my sons with DMD are entering these new independent phases of life. But unlike when my oldest daughter, Lexi, 22, went to college, I cannot begin to fathom what college will look like for Max, and I have no idea how to get there, either.

I started from scratch when the boys were diagnosed with DMD, trying to determine the following steps. Then again when we had those first IEP meetings, I felt overwhelmed but started at step one. Now, here I go again, into the unknown.

And that is where my unease sits. Succeeding in high school and preparing for college will involve many moving parts that feel out of my control. Of course, by now, I know better than to expect things to be easy. But for a short while, I need something to stay the same. And so, as my favorite season approaches, I plan to embrace right where we are and celebrate it before moving on.

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.


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