Our Seizure-free Streak Started Over, but I’m Still Counting My Blessings
Parenting a child with Dravet syndrome is often an emotional roller coaster
Back in November, I wrote about my 7-year-old daughter’s great accomplishment. Austen, who lives with Dravet syndrome, had set a new seizure-free record that seemed to be holding strong.
But as it did last March, the flu hit our household in early December. It hit Atlas, Austen’s 9-year-old brother, then me, and finally Austen. I tried to keep it under control, hoping we’d be fortunate enough to avoid a seizure this time around. But unfortunately, that wasn’t the case.
The risk of a seizure is always present for children with Dravet syndrome, even if they’ve gone years without one. Researchers haven’t found a cure yet.
On Dec. 6, Austen woke up without a fever, but because I was sick, I decided to keep her home. Her first sign of sickness didn’t appear until lunchtime, when she told me she wasn’t hungry and would rather take a nap. I had given her Motrin (ibuprofen) a half-hour before, so I put it down to that. She fell asleep, and a few minutes later, she was seizing.
We were fortunate — the seizure was short, and no rescue medications were necessary. Within a few hours, Austen was up and ready to go about her day. She was mostly mad that her lunch wasn’t still sitting out for her. She insisted she hadn’t had a seizure at all.
But the clock had started over on her number of days without a seizure. And although I was so grateful for the time we’d been given without seizures (eight months and 20 days, to be exact), my heart still shattered knowing the monster had hit her once again. Would it come again later that day, the next day, the next week?
In this life, I’ve learned to be grateful for each and every day. Over the past few months, two Dravet families I know have lost their children, and another child from my Colorado special needs village passed away. And just last week, an old friend of mine lost his toddler, with no prior sign of anything being awry.
Your heart never fully mends after watching friends suffer like that; there’s always scar tissue left over. These past few months, mine hasn’t even been able to scab over before being shattered again. Every time I got a call, my breath would catch in the back of my throat and I’d simultaneously pray for my friends and thank God that it wasn’t us. Not this time, at least.
The emotional roller coaster of parenting a child with a life-threatening disorder is one I don’t wish on anyone. Our low days are so low that they often tinge our view of the better days. But our really good days, when we allow ourselves to have them, are absolutely wonderful.
Yes, our seizure-free count has started over, but I’m trying to remind myself that day 27 is a lot better than day one. And two seizures a year is a whole lot better than up to 10 big seizures a day.
So I’ll tick another day off my calendar. Tonight, when I go to bed, I’ll say a prayer for my friends who are suffering unimaginable pain. And I’ll give thanks for another day with my children, seizures or not.
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.