Accepting Dravet syndrome took me from fighting reality to finding peace

Accepting Dravet syndrome took me from fighting reality to finding peace

Every caregiver must find their own way toward accepting this diagnosis

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When my daughter began having seizures at 3 months old, I immediately went into fight mode.

At that time, Avery was a perfectly healthy and typically developing baby. I thought there had to be a reason these seizures were happening, and once we figured that out, we could find a solution. I’m a mom, and moms fix things. We were going to fix this, and no one could tell me otherwise.

I armored up and fought for months. I fought for treatment options. I fought for more testing. I researched, and researched, and researched. I talked to other people who’d experienced similar medical situations. And when that mother instinct inside me said there had to be something more, I fought for answers.

Seven months later, we ended up at the Mayo Clinic and with an answer I never wanted. Avery had Dravet syndrome.

When Dravet was suggested as the reason for her extremely long seizures, I adamantly rejected the idea to the point of feeling beaten down. Being a person of faith, I begged God not to make this my child’s diagnosis. I continued my re...