We choose to be brave so our daughter with Dravet syndrome can live a full life
Our first impulse had been to shelter her, so she wouldn't have seizures
Written by |
When my daughter Avery was diagnosed with Dravet syndrome at just 10 months, it felt like life was constantly hanging in the balance. She had been having lengthy seizures that required medical intervention regularly, and I could only watch helplessly as Avery fought for her life every couple of weeks.
Avery’s dad, Jonathan, and I both wanted to do whatever we could to protect her, and because of the many seizure triggers that accompany Dravet, this often meant secluding her from the world around her. If there was even a possibility that a seizure trigger could be present at an event, we would just stay home. If it was hot, we would stay home. If an illness was going around, we would stay home. If it interrupted her typical nap time, we would stay home. If it involved going to a location where we were unfamiliar with the emergency medical services or the local hospital, we would stay home.
But as our journey progressed and I recognized that life with Dravet meant Avery may never have control of her seizures, no matter what I did or how much I protected her, I had to weigh quantity of life versus quality of life. I realized we weren’t truly allowing her to live a big, full, beautiful life, and, in my heart of hearts, that’s what I really wanted for her. It took every ounce of courage we had, but we decided to be brave so that Avery could live.
Avery’s bravery
It began with baby steps. With the help of resources like cooling vests and fans, we began taking her to all her siblings’ sporting events so she could interact with our community. We took her to the lake, where she went out on her dad’s fishing boat for a few hours. We climbed in a car with our extended family and made the 18-hour drive to the Florida coast so she could see the ocean for the first time, and man, did she love it.
We signed her up for a mini-cheerleading camp at her school, and then a dance class where she performed in her first recital. She got on a water sport tube behind the boat and begged for someone to drive fast enough to dump her into the cool lake water, smiling and laughing the entire time.
We made a second trip to the beach — Avery’s new favorite place — and this time she learned to boogie board with her older siblings. She entered a local talent show where she performed her own rendition of “Let It Go” from “Frozen.” She jumped off a diving board and rode a roller coaster with her hands in the air.
Watching her live her life so fully inspires me to live mine more fully, too. Now, every single day, it’s my mission to let her live. She swims, sings, and runs through the sprinkler in the backyard. She goes to vacation Bible school, attends play dates, and goes down the big-girl water slide at the local pool.
Of course, there are still things we just can’t do because of seizure triggers. Fortunately, at this point in her journey, we are more aware of her primary triggers and have more supports in place to keep her safe in those situations than we did at the beginning.
But there are still times when fear and anxiety clench my heart, and some of those brave decisions have led to seizures, but, at other times, even a protected, secluded environment has not prevented one, so allowing Avery to live a full, beautiful life has meant making a choice. For me, that choice will always be a resounding yes, to be brave, even when it’s difficult. Bearing witness to the way Avery loves life has been one of my greatest joys.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.