Caring for a child with Dravet syndrome is a marathon, not a sprint

When my 10-year-old daughter, Avery, had her first seizure at 3 months old, I was all in.

I made it my priority to find a solution. We didn’t yet know what was causing her to have seizures, so I fought with everything I had to figure out what was happening and to fix it. In my mind, Avery’s seizures were a short-term problem as a result of something that could easily be treated.

During those initial months, the trauma was unending: seizures lasting more than an hour, ambulance rides every couple of weeks, frequent hospital stays, and life flight transports. When these realities are short-term, you can muster the strength to power through the chaos. However, when Avery was 10 months old, we received her diagnosis: Dravet syndrome.

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To put it simply, Dravet syndrome is not a short-term diagnosis.

Dravet is a lifelong form of epilepsy with no existing cure. When the neurologist called with the official results of genetic testing confirming Avery’s diagnosis, I realized the permanency of what we were walking through. This diagnosis wasn’t going to get easier. In fact, it would likely get more difficult and complex.

I’d been giving everything I had, showing up to this journey as if it would be a quick and painful sprint that would soon be over. But it became apparent that this journey was no longer a sprint; it was a marathon. I’m not much of a runner, but my older kids have participated in track long enough for me to understand that distance running requires different preparation and pacing than sprinting.

When my perspective shifted regarding what this journey would require of me, I recognized that, as a caregiver, there were some things I needed to change in order to be able to run the marathon that is parenting a child with Dravet syndrome. I began to understand the importance of healthy coping skills for myself. In order to care for my child, I needed to slow down and care for myself.

Healthcare includes self-care

The idea of self-care has become cliché in many regards, but the root from which it comes is very logical. If I am not OK, I cannot continue to help other people be OK. Recognizing that my daughter would need me as her caregiver for years to come, that we would be navigating the trauma and treatments on an unending loop, and that I would need to be her primary advocate through it all prompted me to look for ways to pace myself on this journey.

For me, exercising, getting outdoors in nature, walking, creating, and writing became coping skills I fell back on. I also developed some not-so-healthy coping skills, like scarfing down a large cheeseburger, fries, and milkshake every time life felt unbearably hard, or binge-watching the saddest movies I could find in order to let all the emotions flow. It was important for me to find a way to make sure the healthy coping techniques outnumber the not-so-healthy ones, recognizing which coping skills were actually beneficial for my well-being in the long term.

At one point, I saw a naturopathic doctor who specialized in helping me figure out how trauma had impacted my body, what I was lacking, and what supplements or other actions I could take to function better. For a couple of years, I saw a therapist regularly who helped me work through my emotions and the burdens I felt from the impact of Dravet syndrome on my life. I chose to start saying “no” and let go of some previous responsibilities I had held. These were all things that allowed me to face this journey in a healthier way.

There have been seasons of my own journey with Dravet syndrome when it was easier to do these things, and seasons when it seemed impossible to do more than just exist. The demands of caring for someone with Dravet syndrome do not always allow the freedom of the type of self-care that requires a lot of time or energy.

From my own experience, self-care and finding healthy coping skills have been a lifesaver as I face the tumultuous experience that is caregiving for my daughter with Dravet syndrome. My advice to other caregivers: Start with small actions, be willing to start over when you get off track, and make caring for yourself a priority so you can continue caring for others well.

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.