This National Family Caregivers Month, I honor my parents, who set the bar

I often write about the caregivers who help me live a full and meaningful life with spinal muscular atrophy (SMA), and it is the primary theme of this column. Since I’ve lived most of my adult life away from home, I usually focus on the many wonderful friends in my community who take care of me. But November is National Family Caregivers Month, so I’d like to share about the ultimate caregivers who started it all: my mom and dad.

My parents have always made a terrific team, whether hosting gatherings in their home, leading in church ministry, or making time for us kids. They each bring their unique strengths and personality to the table, and with their powers of love combined, they are pretty epic and unstoppable. Growing up, I saw this teamwork in action every day, especially in the care they gave me.

Because I couldn’t stand or bear weight, their tasks were often physically demanding: lifting, transferring, shifting, and balancing me safely, if sometimes a little precariously. But they did what was necessary to make sure I was properly cared for, and they put their heart, soul, mind, and strength into it — and got a full daily cardio workout along the way!

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There is a special bond that often forms between children with severe disabilities and their caregiving parents or guardians, an interdependence that can make life without each other hard to imagine. But one of the heaviest burdens parents carry is the question: “What will happen to my child when I am old or something happens to me?”

While my parents have never voiced this concern aloud to me, I feel it more and more the older we all get. I’m in my 40s and they are in their 70s. They look amazing for their age and are in remarkably good health, but the truth is they can’t quite keep up the energy and stamina they had 30 years ago.

When I first moved away from home it was so difficult to trust anyone else with my care. No matter how well others learned the tasks, they never measured up to my parents. But each time I transitioned to a new living situation with new roommates and friends, I grew in what it meant to invite others into my needs. Living independently now is one way I give my parents (and me) the reassurance that I will be all right, that I can manage my health, care, and household with a sustainable community looking out for me. This is only possible because of the valuable lessons they taught me about hospitality, self-advocacy, creativity, and determination.

My parents are still a valuable part of my caregiving team, though their roles and routines look different now. They visit me at my house a couple times during the year, and I stay with them for a few weeks over the holiday season. In a way, these visits offer respite for my friendship care team, but for me as well: With Mom and Dad, I can mentally relax and let “the professionals” handle things.

In this new stage of life, we’ve learned that the big tasks work best when the three of us do them together. For showers, dad rinses and dries while mom scrubs and lathers. Then mom pulls and tugs my garments into place while dad stabilizes and supports me. Throughout the day, they tag-team tasks like getting my shoes on, brushing my hair, shifting my sitting position, and turning on light switches. The choreography might have changed, but their teamwork, and the comfort I find in it, has not.

Growing up doesn’t mean I’ve outgrown my need for my parents. It has meant carrying what they taught me into a wider circle of care, while finding new ways for the three of us to keep caring for one another. This month, I’m grateful not only for the countless tasks they’ve done over the years, but also for the life they helped make possible. They were my first caregiving team, and they remain my very best friends. Wherever I make my home, their love comes with me.

Note: SMA 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.