Accepting Dravet syndrome took me from fighting reality to finding peace

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 research and enlisted hundreds of people to pray that this would not be Avery’s reality.

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An unwanted diagnosis

Weeks later, the results of the genetic test came back and confirmed that Avery did, in fact, have Dravet syndrome.

Then and there, my fight changed. You see, up until her official diagnosis, I believed this could be temporary, something that could be fixed or that she would grow out of. But Dravet syndrome is not that, and I knew this was permanent — the seizures, trauma, and aching were not going away.

I fell apart for a while. I couldn’t fathom a world where I would have to continue to witness my child’s suffering. Talking to other caregivers of people living with Dravet syndrome sometimes gave me hope and sometimes absolutely crushed me. Her life would be changed by this diagnosis. My life would be changed by this diagnosis.

I fought, I fell apart, and slowly I tried to put myself back together. I began to fight again — not against the cause of Avery’s seizures, but against accepting this reality. I had to believe that things would be different for her, that her outcome would be better than everyone else’s. Along with medications, we tried to do everything that might help keep her brain healthier.

Acceptance

I continue to pray. For a long time, I believed God was still going to spare her, but after months and years of wrestling against both the physical and spiritual realities, I knew I had to stop fighting. My fight was no longer benefiting Avery; it was only making our experience more difficult. This was when I finally began to reach some level of acceptance.

This was not going away. There was only so much anyone, including medical professionals, could do to help. Dravet syndrome was the path she was going to walk. I wouldn’t say I embraced the condition, the seizures, or the struggles that have accompanied the diagnosis, but I am able to accept Avery’s journey more fully.

For me, laying down the fight and accepting the reality of Dravet syndrome has meant that I’m less shocked when Avery has a seizure, and I’m more aware of the milestones she may miss or be slow to reach, and most of the time I’m OK with that. I understand this is her path. I don’t compare her with her peers as often. My expectations align with her reality, which means I am far less frequently disappointed and discouraged. I have made peace with the fact that she will continue to need medications and treatments throughout her life.

There are still days when aspects of this diagnosis wreck me or leave me grieving, but I am less likely to stay stuck in those places now. Every caregiver must find their own way to accept this diagnosis. It is not easy, but I do feel it is an important part of this experience. Perhaps, with acceptance, there can be a sort of peace as 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.