The Risk of a Seizure Is Always Present With Dravet Syndrome
Regardless of how long my daughter Austen goes without a seizure, the risk is always there. Without a cure for Dravet syndrome, that risk will always exist in the shadows, lurking and hiding, and waiting for the perfect circumstances to jump out and wreck our day.
One hundred and sixty-seven days.
Austen made it 167 days without a seizure. To put that into perspective, 178 days passed from the day Austen was born to her very first seizure over five years ago. And this is the longest stretch she has had since then.
In the past, we’ve gone as long as 80 days and as little as 12 hours without a seizure.
This time, I had hoped we would make it six months. I had even allowed myself to imagine Austen making it one year. Instead, I’m sitting here, 167 days after her last seizure, once again adjusting oxygen levels, checking her temperature, and holding my baby as we both cry.
For her, the tears are because she’s confused, possibly in pain, and bone-tired from what her body has been through. For me, it’s because I can’t take this pain away from her.
As normal a life as possible, for as long as possible: That has always been our goal with Austen.
We’ve always said that 100% seizure freedom wasn’t our goal. But in the last 167 days, I had begun to imagine, to hope, that it could be a possibility for us.
In that time, Austen has done things I wasn’t sure she’d ever do. She’s gone on adventures, started learning to read, and had her first sleepover.
As my baby girl sleeps next to me now, I’m burying my sorrow in a large bowl of popcorn and a cup of hot tea. Once again, like so many times before, I repeat the now rhythmic pattern of knitting a stitch on the blanket I’m making, then looking down at her pulse oximeter.
Stitch, look down, stitch, look down.
I say a silent prayer thanking God that this seizure was not “the big one,” the one that might someday take her away from us either in body or spirit.
Austen will probably sleep straight through tomorrow morning. She’ll be cranky tomorrow as her brain tries to reconfigure itself after the ordeal it’s been through.
My prayer is that tomorrow will be the first in a long line of seizure-free days once again; that Austen will continue to learn and live without the struggles of multiple seizures a day.
But if that’s not the case, if this is the start of a downhill slope where we once again see seizure after seizure, we will deal with it.
We’ve done it before, and we can do it again. No, we don’t want to, but we didn’t want our daughter to have Dravet syndrome, either. You do what you have to do for your baby. You adapt and roll with the punches. One thing we never do is give up.
As long as she’s breathing, as long as her heart is beating, there is hope. And hope is a powerful thing.
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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.
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Melissa Bowen
Thank u for sharing it is almost like u took the words from my mind and gave them life
LeAnn Luttrell
I cannot tell you how much I enjoy reading your posts. My son also has Dravet so I relate to everything you say. I read your posts every week and often cry as I do because I feel your same pain and the way you describe it is so real. No one can imagine unless they walk in our shoes. Thank you for sharing your experiences. It helps to know you aren’t alone. God Bless you and Austen.