How I’ve gotten through a busy season in the life of my family

My life has recently been a whirlwind of activity. Now that the dust is finally settling, I’ve taken advantage of the relative quiet to take inventory of my family.

An inventory of my family? What does that even mean?

I have a large family. Inventory is how I describe keeping track of them, their well-being, their comings and goings, their school and work, and the care needed by my sons with Duchenne muscular dystrophy (DMD).

My family includes my husband, Jason, and seven children: my daughter, Lexi, 23, and her husband, Nick; Max, 18; Chance, 17; Rowen, 15; Charlie, 13; Mary, 9; and Callie, 2. Max, Rowen, and Charlie all live with DMD.

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We’ve lately experienced some big changes. Lexi got married, and Max graduated high school and now lives on a college campus. My only son without DMD, Chance, committed to a college where he’ll play baseball next year, following his coming high school graduation.

Meanwhile, we’ve also faced some financial challenges that required me to return to work after more than a decade of focusing solely on serving my family and caring for my sons with DMD.

Managing the struggles

As you can see, managing the day-to-day life of my large family has kept me in hyperdrive, and I know I haven’t had time to process everything. Namely, I haven’t had the capacity to consider the effects on my marriage and absorb the disease progression my sons have experienced during the past several months. I kept pushing it down, deciding to deal with all of it when I had more time.

In all honesty, I didn’t want to deal with it. I know it’s not the healthiest way to cope with adversity, but sometimes survival is ugly, and I was trying to survive. We’ve had so much to celebrate this year, but it’s also been one of the most challenging seasons of my life. I’ve felt pulled in many directions, trying my best to do everything and often feeling as if I’d failed.

The clinical trial we started late last year was more demanding than expected and just plain hard. We tightened our budget as much as possible, but it wasn’t enough. My children were hitting milestones I’d dreamed of, and my stress level stole some of that joy.

It’s been more than I’ve ever had to give. I’ve often felt empty, yet every time my family needed something, I found a way to provide a little more. That left me depleted.

Rowen stopped bearing weight. He went from standing in the bathroom when I helped him to no longer standing. He now requires a lift or a two-person transfer. It’s the first time in my journey with DMD that I’m not physically strong enough to care for my son alone.

My marriage took the biggest hit. I’d looked for places where I could give less so I could give more in other areas. Without realizing it, I gave less to Jason. I closed myself to him, not out of anger or love loss, but because the family as a whole needed me more than Jason did.

The problem is that I need Jason. He’s always been my rock, strong and steady, when the waves of life knocked me down.

Renewal

Thank goodness, life has settled down. I’ve been working for over two weeks, and we have the semblance of a new routine. Lexi has settled into married life as a happy newlywed. Max is living on campus, and as of this week, his care assistants have been trained to provide all of his care. Chance has started his senior year and is celebrating being on the homecoming court.

We had a free weekend. We rested, laughed, slept, and puttered around the house. But the best thing was that Jason and I reconnected.

Jason, my best friend, knows me better than anyone. He knows all my dysfunctional ways and loves me anyway. He waited for me to come to my senses. With him by my side, I’ll find a way to be OK with accepting help as I care for Rowen. I’ll also pray that I’ll find a better way to get through the next time I feel so depleted.

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.