As a Mother With Mitochondrial Disease, My Presence Matters

Mother’s Day provokes odd emotions in me ever since my first husband died of a brain tumor when I was 27. Some years, I celebrate simple survival, parenting two young boys on my own. On others, I just cry, overwhelmed by it all.

Ten years in, when I thought I was finding balance in my role, my legs grew unstable. Fatigue intensified and after years of medical tests, my younger son and I were diagnosed with mitochondrial disease — a cellular level powering problem.

When I’m too tired, my legs don’t work well. Clumsy, awkward strides slow me down and keep me from long walks, mountain climbs, and a lot of other activities. The year my oldest son graduated from high school, I had two unexpected surgeries in five weeks and fell way behind.

The world kept spinning as I limped and healed. Despondent, I often felt like I was letting my family down. Unable to fully participate and keep up, I felt like a failure.

Those feelings didn’t abate overnight. It took time to accept what I know is true — that being a mom is much more than keeping up with the silent standard of perfection our society espouses. Being a mom is mostly about maintaining heart connections that provide love and acceptance in the walls of our home.

Sometimes it means cooking when I don’t feel good, or sleeping in the car after driving to an early morning swim practice, or taking long afternoon naps so I can watch as evening band competition. I adjust much of my life so I can simply be present when possible.

And while it was hard to accept, even when I am tired, using a cane and moving slower than all of the other parents is OK — my presence matters. Simply because I am a mom — a mom to two talented young men who just need to know I am there.

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Thinkstock photo by Pavel Losevsky