The week we ran out of our emotional ‘leftovers’

When I was a young mom watching my oldest daughter, Lexi, move from upper elementary to middle school, I often felt heartbroken and helpless. She was an excellent student and friend at school, but when she came home, her exhaustion could turn into crankiness, and it felt like she was shutting me out.

A friend with older children told me Lexi’s behavior was normal. Lexi was doing everything she was supposed to do all day long and when she comes home, I was getting the leftovers, she said. I had never heard it explained that way.

That conversation from more than a decade ago continues to shape my parenting. Now, as a mom to seven children — Lexi, 24; Max, 20; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 3 — it has helped me become more patient and understanding. Instead of arguing over the behaviors I observe, I try to get to the root of them. Are they hungry? Are they tired? Did something bad happen at school? I try to determine if they need space, a hug, or food. Then I give them what they need.

I learned to appreciate that the kids can let go and just be themselves because they feel so loved and safe at home. What a gift it is that my husband, Jason, and I, along with our home, are our children’s safe space, I realized. I never expected the leftovers to matter so much.

‘We don’t even have the leftovers’

Three of my sons — Max, Rowen, and Charlie — have Duchenne muscular dystrophy (DMD), and I’m their caregiver. They’ve faced fatigue, broken bones, clinical trials, and medical appointments. They give so much of themselves to get through long days and painful experiences. There are many days when I only get their leftovers, too.

My husband and I strive to be our sons’ safe place. Duchenne is as challenging and tiring as anything I have ever experienced. Absorbing all of that for our children sometimes only allows Jason and me to give each other our leftovers. It affects us and our marriage.

Recently, a member of our extended family fell and was hospitalized, and our life outside of Duchenne took on everything we had left. Either my husband or I needed to be at the hospital to support our family and help as we were needed. Ideally, we would have both gone, but with our large family and our sons’ special needs, I needed to stay home. We were split up and going in challenging, different directions. After 10 days, we were both exhausted.

One night this week, I was overwhelmed. I was tired, I missed my husband, and I was worried about our family member. I fell asleep in Callie’s bed after I tucked her in, then woke at 11:30 p.m. and moved to my own bed, snuggling next to Jason. He rolled over and held me. I started to cry, and admitted I felt alone and invisible.

It felt good to be next to him, and we drifted off to sleep, but I woke up a couple of hours later and thought to myself: This week, we don’t even have the leftovers.

Jason and I have been asked to shoulder a heavy burden — raising and caring for three young men with Duchenne. I love my husband so fiercely that even his leftovers feel precious, but when those vanish, a well of longing and pain opens up in me. That ache brought me to tears this week — a deep truth about caregiving that we rarely dare to say out loud.

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.