Tali's Story: Struggling with Epilepsy and Dravet Syndrome
“I choose to believe that even when things seem to be out of our control, it is important to remember that it is up to us to find a way to make that situation our own.”
When working at a sleep-away camp during the summer of 2018 I was asked to speak to the oldest group of campers and staff to inspire them with a personal story or experience. As an educator I know that the best way to inspire young students is by sharing something personal, something shocking. After racking my brain for a few hours I realized I did not really have much to say. I was never someone with an “interesting story” or a “unique past.” Frankly, I was pretty boring, and I was okay with that. I never wanted to be someone with a crazy story that would inspire others, because I was afraid that would be borne out of a negative experience. I politely declined the offer to speak and deferred to people with something interesting to share. You know, the parent of a child who survived cancer, or the woman who went on a wild trip of self-discovery before finding religion.
And then everything changed. On September 14, 2018 my healthy seven-month-old baby had her first seizure. It was scary. Really, really scary. It was hard to believe that this was really happening to us. After a lot of tests and tears, it became clear that this was not a one-time seizure. It was not something that would go away. We learned that her seizures were the result of a genetic mutation which puts her on the spectrum for Dravet syndrome (or as a dear friend coined it, “designer epilepsy”).
So, like any normal person, I went online and I Googled. At first I looked up all things epilepsy and Dravet. But that was…really depressing. And not particularly productive. As much as I wanted to, I could not change my new reality. A reality which meant excusing myself from a meeting to take Sarena out because she started having a seizure. A reality which meant running out of the airport as I was about to board a flight because Sarena was on her way to the hospital... again. A reality which meant watching as my nine-year-old calmly stroked Sarena’s hair while she held her during a seizure. Nope, these were all things I could not control. And no amount of curling up in a ball on the kitchen floor, crying, was going to change that. So I had to find things I could control.
“There are so many things about the past year that I have not been able to control, and I know there are a lot more unknown challenges ahead.”
If you ever meet Sarena, you might notice that her bow always matches her outfit, which matches her pacifier, which matches the clip it is attached to (which usually matches whatever her three older sisters are wearing, too). You might think “Wow, what a stylish baby!” or “wow, what an insane mother this baby has! Does it really matter if her diaper matches the outfit? No one even sees it!” Well, I am here to tell you that it does matter. It matters because I was given a choice. Should she use the silver pacifier with the black clip or the pink one with the furry pom pom? Should I run upstairs and grab the toy that coordinates with her outfit better, or just let her bring the one that’s already in the car?
There are so many things about the past year that I have not been able to control, and I know there are a lot more unknown challenges ahead. I also know that despite what happened, or what will happen, I have choices to make. So here is what I choose:
I choose to believe that everything happens for a reason (if you want to hear the story on how I learned that lesson, hit me up).
I choose to believe that doctors are truly messengers from God (shoutout to Dr.Vikram Bhise at RWJ for being the best messenger for Sarena and our family).
I choose to believe that we don’t always know how things will turn out, but that God has a plan.
I choose to believe that even when things seem to be out of our control, it is important to remember that it is up to us to find a way to make that situation our own.
So next time you see me walking down Easton Ave with four little girls who look like nesting dolls, remember, I’m not crazy, I’m just coping.
By Tali Wohlgelernter
Mother of Sarena, Dravet Syndrome
