My husband and I make a great team as we care for our sons

Occasionally I struggle to find a topic to write about in my weekly column. I had that experience before writing this one, so I asked my husband, Jason, what I should write about. He jokingly said, “Husbands!”

At first, I laughed with him, but I quickly realized it was a good idea. Jason and I share seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 15, Charlie, 13, Mary, 10, and Callie, 2. Max, Rowen, and Charlie are living with Duchenne muscular dystrophy (DMD).

Jason and I have been married for 23 years. We graduated from college and started our careers at the same time. We rented a house together before we were married, and after, we bought a home together and adopted a shelter cat. We walked with each other through the grief of losing our parents and my sister. Jason and I have been together for more than half our lives. He is my best friend, my everything.

Of all the things we’ve experienced together, the best is that we’ve created seven beautiful children and shared in their milestones and the joy they bring us. We’ve also shared the heartache that has accompanied having three sons with DMD.

I believe in many truths, but if I had to choose the most significant one, it’d be that I couldn’t do this Duchenne life without my husband. We’re a team and get through challenging times together.

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Providing care as a team

Parenting three young men with DMD isn’t easy. It’s the most challenging thing Jason and I will ever do together. And because we’re two different people, we approach caregiving in different ways.

It’s similar to how we cook. My rule of thumb is to always follow the recipe the first time and then tweak it according to taste. Jason believes a recipe is merely a guide, and he’s welcome to make changes at any time.

We both cook in our way, but our ever-expanding waistlines and love of food prove that we’re both successful in the kitchen. I’ve never turned away a plate of food my husband has prepared, nor has he turned away a plate I’ve made for him.

We know what the other will do in the kitchen and adjust accordingly; it’s one of the perks of 23 years of marriage. It’s been much the same for us as we’ve learned to care for our sons with Duchenne, especially as our boys have grown into young men.

In the past year, Rowen and Max have become more dependent as Duchenne has progressed, weakening them. I’m no longer strong enough to lift and transfer the boys and use a Hoyer lift instead. However, both of our nonambulatory sons prefer not to use it. Jason wants to oblige, as he recognizes how using the lift must make them feel. He wants to wrap his arms around his sons and be the strength they lack.

I felt the same way when the boys were younger. It brought me solace to be the strength they needed. Jason never pressed me when I cared for them as young boys, probably overdoing it — both in terms of what they needed and what I could physically manage. He knew I was doing it more for me than for them.

I now have the same concern about Jason. He’s getting older and more fatigued, but I don’t want to ask him not to lift the boys because sharing his strength with them gives him solace.

I know the day is coming when we must use our Hoyer and ceiling lift system full time to care for the boys. But just as Jason and I have learned to dance around and with each other in the kitchen, we’re now learning the steps of caregiving for grown men. As time passes, we’ll learn the perfect balance and find different ways to achieve the peace we seek, knowing that we’re doing the best we can for our sons.

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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.