Caring for a medically fragile kid while parenting multiple children

My youngest daughter, Avery, has Dravet syndrome. Because of this diagnosis, the treatments she needs, her day-to-day care and supervision, and seizure triggers, my world has largely revolved around her for the past 10 years — but my other kids need me, too. This has probably been the hardest part of the parenting journey for me.

My other children were 2 and 4 when Avery began having seizures. They were babies themselves, yet their lives suddenly changed in a big way. Those first couple of years were filled with days that suddenly turned emergent — days when I had to urgently leave the home and hop in an ambulance, while a family member or friend unexpectedly took over the parenting role for days at a time.

The things we could do and the places we could go as a family were limited by what felt safe for Avery. Our entire household spent prolonged periods in survival mode, which affected all of us in some way.

As a family, we have always done our best in any situation. I also know that we’ve had to put Avery’s siblings’ needs on the back burner to keep their sister alive and well. Avery is often my No. 1 priority because she has to be, but there are two other kids in our home who, at times, need to be the priority, too. Finding a way to make that work can feel impossible.

A dilemma with no easy answer

A perfect example is that my oldest daughter, Riley, was recently given a cool opportunity to pursue her love of softball. Riley has worked extremely hard over the past few years to improve her skills, with the goal of playing the sport through high school and into college. This is a lofty goal, but because she has backed it with hard work and determination, I want to support it in any way I can.

She was offered a position on a new team, one that will likely help her achieve this dream. However, this opportunity will require a higher level of commitment: more games, more tournaments, and more travel. For those of you who don’t know, softball is competitively played outdoors during the hottest season of the year. Heat also happens to be one of Avery’s biggest seizure triggers. This scenario just doesn’t work for us.

It is impossible to attend a daylong softball tournament with Avery, even with protective equipment and supports in place, such as cooling vests, portable air conditioning, a pop-up canopy, fans, misters, and cooling cloths. All of these things help, but at the end of the day, it’s just not enough.

This becomes such a predicament for me as a mom. While I’m excited about my oldest daughter’s opportunity, my heart is torn, knowing that figuring out the logistics will be a struggle. We cannot just allow Avery to run wild at the ballpark with other siblings, like many typical families do.

I’d either have to leave Avery behind frequently — which is a challenge in itself, as there are limited options with a medically fragile kiddo — or divide our family unit. I’m not thrilled with any of the options, but my hands feel tied.

While this may seem like a minor challenge, it’s one many parents can’t quite understand. My heart is divided, and yet I have to prioritize caregiving when deciding where to spend my time and energy. I don’t have an answer to this problem. I simply know it’s a dilemma I wrestle with frequently, and one I think many other caregivers will likely relate to.

I pray my kids grow up to know that I did the best I could and that they are each loved beyond measure, even in the moments of our journey that weren’t ideal.

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Note: Dravet Syndrome News 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 Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.