Celebrating milestones of DMD siblings brings mixed emotions

In a large family, there is always something to celebrate.

I have seven children whose ages range from 15 months to 21 years old. Last week, we attended opening night at the theater, baseball games, a first communion, and a belated birthday celebration. Next week, we have another opening night at another theater, two birthdays, a music recital, a baseball tournament, and a choir banquet to attend.

If you have a large family, you know what it’s like. If you follow me on social media, I will make you dizzy trying to keep up. But, on the other hand, if you prefer small families, you probably think we deserve this level of large-family crazy.

I’m not complaining; constantly having a reason to celebrate fills my heart with gratitude. Although, as a mother of three sons with Duchenne muscular dystrophy (DMD), celebrations can sometimes be overshadowed by grief.

During the holiday seasons, I occasionally grieve out of fear that it could be the last holiday we celebrate as a family of nine. In the back of my mind, I always worry that one of my sons with DMD might get sick and leave us. The same goes with birthdays. I don’t mean to, but I do wonder if it will be their last. Having children who are given a short life expectancy is like a curse, because fear and grief are always part of the equation.

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Birthdays and a graduation

This week’s birthday celebrations include my oldest daughter, Lexi, who turns 22. She’ll graduate from college in a month. My only healthy son, Chance, turns 16, and will be driving a car we bought him today to help him gain independence.

We’ve planned significant celebrations for both of the kids. For Lexi’s birthday, we will take the entire family to Lincoln, Nebraska, where she attends college, and take her and her boyfriend to dinner and give her presents. Next month, when she graduates, the family will spend the weekend there celebrating with drinks, receptions, and meals at restaurants before attending the graduation ceremony. We are very proud of her and feel lucky she is our oldest, because she is an excellent example to her six younger siblings.

When Chance turns 16, it’ll be everything you would expect. He’ll finally get to drive the used car we bought him. It’s old but in good condition — a great first car. After that, he’ll drive to school and probably to his friends’ homes, and then take his siblings out for ice cream. He passed his driving test last week so that he could get behind the wheel the minute he turns 16. And even though he got a car, I’ve also bought him a few other gifts. He’s such a good kid and helps me with his younger siblings so much that I want to spoil him a little.

That may not sound like a mother experiencing grief or feeling overwhelmed. But my three sons may never be able to attend college out of town. If they want to pursue college, they’ll have to stick close to home so that my husband and I can help manage their care. I wonder, though, do they see what Lexi has done as something they’ll never be able to do? Does it hurt them? Perhaps as a mom, I worry about things that never occur to them. Knowing my boys, they are just happy for their sister.

But what about Chance driving? Max, my oldest son with DMD, is 17 and hopes to drive someday with a modified van. But no modified used van fits the same budget as Chance’s car. Also, the training to drive is a lot, so it will take longer. Seeing it happen so quickly for a younger brother is probably hard. I would imagine that it hurts, too.

My anxious thoughts and worries won’t stop us from celebrating Lexi and Chance. I think I hurt more about it for my sons with DMD than they do. I’m mourning these typical life events I thought all my children would experience. But I can’t let significant life events pass without a celebration. So we will celebrate, even if there is a tint of grief.

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.