Earnin’ my Birkin

Did you know that June is Dravet Syndrome Awareness month? Well, you’re in good company because I did not know either, until last year that is. In fact, about a year and half ago I had never even heard of Dravet Syndrome at all.

Then…everything hit the fan and I knew I had to learn. And learn fast. Studying and research are not my forte, you can ask any of my high school teachers! Yet here we are. I can now tell you more about epilepsy and Dravet Syndrome than most medical students. I do not say this to brag (although I won’t shut you down if you want to brag for me), I say this because I want to share some of the most important things I have learned so far. 

I learned that Dravet syndrome affects an estimated 1:16,000 individuals in the U.S., or 0.0064% of the population. Basically, Sarena’s condition is as rare as the finest Hermes Birkin bag.                                              

I learned that patients with Dravet usually begin having seizures in their first year of life. Sarena’s first seizure happened when she was just 7 months old. 

I learned that on average, patients with Dravet will have seizures that last over 5 minutes. Sarena’s average is closer to 15 minutes, with her longest seizure lasting over an hour and a half. She’s basically a genius. Some might even call her a prodigy.

I learned that Dravet Syndrome is not “just” seizures, it can also cause sleep disorders,  developmental delays and walking issues, but not necessarily all of these things. It definitely causes extreme cuteness.  

I learned that out of all the medications available to treat epilepsy, many of them can be harmful to patients with Dravet, limiting the options available for treatment. One of the first medications Sarena was on actually caused her seizures to increase in frequency and length. 

I learned that there is a difference between a neurologist, epileptologist, and Dravet specialist, but no one knows more than a mother’s gut. 

I learned that despite going to “the best” doctor, it is possible they are not “the best” for you. Sometimes a doctor is so important, they forget to take care of their patients! (Ask me about the time we tried getting Sarena onto a specific medication for months, then once we finally received approval, her doctor realized, “oops, we forgot to tell you that she cannot take the new medication at the same time as one that she is already on… and oops, it takes months to get her off of it…” )

I learned that after Sarena’s diagnosis I would receive so much love and support. From the most elaborate gifts (still waiting on my Birkin though) to the simplest text, every single message and gesture truly feels like a hug from afar. 

I also learned that I would receive judgement and criticism from some of those closest to me. At first I was hurt. I mean, I am still hurt, but what hurts the most is not the criticism, it is the fact that someone can believe that I am not doing the best thing for my baby because it is not what they believe to be the best. Let’s get one thing straight, I will leave no stone unturned in the quest for a treatment, and hopefully one day a cure, for Sarena. Anyone who doesn’t see that can take their kale shakes elsewhere. 

I learned that happiness does not mean you are happy all the time. And sadness does not mean you are sad all the time. Our emotions are complex and are not mutually exclusive of one another. It is possible to be so angry about this diagnosis, and also so grateful for it. Angry, because, duh, it sucks (sorry Aba). But grateful because, out of all the random, rare, “designer” epilepsies she could have, God gave her the one that is being researched, funded, and talked about.  Pretty amazing, right?!? 

Don’t get me wrong, I would much rather her not have any of this at all! But, if she’s going to hit the epilepsy jackpot, at least it’s one with new medications and treatments being developed as we speak.

I learned that just like bread is better than wheat, each one of us is a work in progress. 

It’s not always easy. In fact, sometimes it really sucks (sorry again Aba). If we look around we will see that God has given us the ingredients we need, but we need patience to figure out the correct recipe. There can be lots of trial and error, and waiting is never easy. 

So the most important thing I’ve learned is that I’m still learning. Learning how to be patient, learning how to accept, learning how to be happy and sad and grateful and angry all at the same time. 

As we enter Dravet Syndrome Awareness month, join me as we become aware. Not only about Dravet Syndrome, but also about the importance of being aware of ourselves, our surroundings, and the potential we have to grow from it all.