When did I stop being a fun mom for my children?

“I didn’t think you’d jump with us,” said my daughter Mary, 9, breathing heavily as she bounced from trampoline to trampoline.

It’s true; I’d never taken her or her little sister Callie, 2, to the trampoline park before. But we do fun things, I thought. After thinking some more, however, I now realize that — at some point in the past six or seven years — I stopped doing fun things with Mary, which has continued with Callie.

I have seven children: Lexi, 23, Max, 18, Chance, 17, Rowen, 15, Charlie, 13, and Mary and Callie. In my big family, I want to split my time and attention equally among the children. However, Max, Rowen, and Charlie are living with Duchenne muscular dystrophy (DMD), and as they get older and need more from me, I acknowledge that it’s becoming more of a challenge to be the mom I want to be for all seven kids.

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Life with fun

When my older kids were little, I was a fun mom. After Max, Rowen, and Charlie were diagnosed with DMD, I tried to do as much as possible with them while they were still physically able to participate by walking, climbing, and the like.

We went camping on our way to Minnesota, stopping at state parks and sleeping in tents. We drove to a Florida theme park while the three of them could still get on the rides with relative ease. On that trip, we also spent an afternoon at the beach because I wanted them to say they’d walked in the ocean before they couldn’t walk anymore.

We did fun things at home, too. For several years, just before summer vacation ended, we celebrated our made-up holiday, “The Last Nine Days of Summer,” when we took on a bucket list of activities the kids wanted to do before returning to school. They devised ideas that included eating at a food truck, joining their cousins in a water balloon baseball game in the front yard, and playing glow-in-the-dark tag.

We had so much fun in those years, and I felt a sense of accomplishment in making sure they were experiencing as much as possible. My goal was to give them an arsenal of memories to help ease the pain of the losses I knew they’d one day endure. I don’t know what the boys with DMD thought I was doing or if the experiences had helped them. I was probably doing it more to protect my heart.

Today’s challenges and changes

But what happened to my fun? It’s still there, but life got busier. Duchenne is the primary reason, but there are others. The older five kids all got older, for instance. The activities I enjoyed with them in their toddler and elementary school years aren’t things they want to do anymore. Some boys prefer video games and YouTube to the splash pad. Others play elite-level club athletics and are away and spend hours training for their sport.

Duchenne, however, has made it challenging to have fun with Mom. Only Charlie is still ambulatory of the DMD sons; the other two use power wheelchairs. Although still possible, theme park rides and beach trips require so much more planning and, frankly, help, which my husband and I have only sometimes.

Even the fun things at home are increasingly difficult. I can be gone for about two hours before I need to take someone to the bathroom, help them reposition, or assist them in countless other ways.

Finally, I’ve been afraid to take the girls to do things that the boys can no longer do. I know it’s unfair to the girls, but I’ve hated that it might not be fair to the three boys.

But if our trip to the trampoline park taught me anything, it reminded me that all three boys with Duchenne had been there when they were Mary’s age. I’d made sure they had a variety of fun activities. Now I’ve somehow forgotten to ensure that my younger, healthy kids get to experience the same.

Now I’m telling myself that letting the girls have their activities is OK, even if the three boys can’t do them anymore. They did them once, and it’s fair and right that the girls have the same opportunity.

Note: Muscular Dystrophy News Today 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.