As you may have read in my previous contributing article as an Everyday Expert, my wife, Dawn, and I recently took our two daughters on a cross-country road trip. Our final destination: The Dravet Syndrome Foundation’s 3rd Biennial Family and Professional Conference in collaboration with Children’s Hospital Colorado in Aurora, Colorado (but for the purposes of this article, let’s call it the DSF for short).
This was to be our first time at the DSF. While we’d attended epilepsy conferences in the past, we never really felt like we belonged. Because Dravet is just so different. So, eventually, we started to involve ourselves a little bit more in the Dravet community. And it’s the sort of thing where, once you become a little more involved, you just want to be a little more involved.
Even so, when they held the last DSF conference two years ago, we just weren’t ready. We didn’t have the seizure control down. It just wasn’t the right time. But this year, we knew we had to go. Everyone we knew who’d attended DSF had nothing but great things to say about it, and we knew we had to see it for ourselves. But nothing could have prepared us for the feeling of acceptance we felt once we were actually there.
Within minutes of stepping onto the floor, Zora had invaded another kid’s personal space. But instead of being put off or unnerved, instead of looking at her funny, this little girl just took to her. Took her hand and away they went. Right away, it was like they were best friends. We didn’t have to explain to the other kid why Zora doesn’t talk. It was just understood. It was heartwarming. And it didn’t stop there.
“Nothing could have prepared us for the feeling of acceptance we felt once we were actually there.”
Normally, when we’re with Zora in public, it’s like trying to control a greased octopus. She only has two arms and two legs, of course, but the way she uses them makes it seem like she has 8. And each one is grabbing at something different. Which inevitably makes us nervous about entering any new environment. Because she’s unpredictable. We try not to let that unpredictability control our lives, but we have to acknowledge that it’s there. That said, when you’re at DSF, all that anxiety evaporates within moments. You walk in and you just know: there’s no judgment. Everyone here understands.
At a DSF dinner one night, Zora had a mini meltdown and threw herself on the floor. My wife and I were about to jump up and react when we suddenly remembered where we were. We remembered that everyone here gets it. Zora might sit in some stranger’s lap, eat food off another stranger’s plate. But here, it’s okay. Here, she can be herself. We all can.
Over the next few days, we were so taken by the sheer number of people involved. Especially those with no personal ties to Dravet. These were advocates who didn’t have to be. Yet there they were, working with us to make these kids’ lives better. It really blew us away.
And then, of course, there was the unrestricted access to all of that invaluable information: an education in Dravet more specific than any we’d ever received before; information on new therapies that might be coming down the pike; different points of view from parents in the same situation as us who’d maybe thought of things that we’d never thought of before, asked questions that we’d never thought to ask. We draw so much from our life experiences with family and friends, but with Dravet, there aren’t a lot of people to draw from. So to be surrounded by people we could feed off was nothing short of amazing.
“[We had] unrestricted access to all of that invaluable information: an education in Dravet more specific than any we’d ever received before.”
All told, we attended 12 sessions while at DSF, and they covered a range of topics (boy did they ever): from IEP planning to disability planning and everything in between. The latter of which, by the way, while not especially relevant to us now, was eye-opening all the same. With the adult Dravet population getting larger every day, it’s important to know and understand what the future might hold for all of us so that we can start preparing for it now. In fact, you can view this and many other sessions from the DSF on the Dravet Foundation’s website.
Of all the sessions we attended, both my wife and I found the one on marriage and relationships to be the most rewarding. I’d forgotten how common divorce is among parents of special needs children, and it made me so grateful not to be going through this alone. The speakers of the session talked a lot about personalities—understanding where the other person is coming from and understanding their reactions so that you, in turn, can understand your own. Using the speaker’s words: marriage—particularly a Dravet marriage—is not a sprint. It’s a marathon. We have to be able to endure this for the long haul. And to do that, we need to try and only focus on the things that are really important. And let go of the fear that we’re not doing enough.
They also spoke a lot about “dividing and conquering.” It’s a technique used by a lot of parents, but with Dravet parents it becomes even more pronounced. This means that, for us, it needs to be less about dividing and more about conquering together. And you do this by identifying your individual strengths and then using them in service of the greater good of your family. We should divide based on our strengths, but also remember to hold hands. Remember that we’re not just Zora’s mom and Dad. We’re Steve and Dawn, and we’re in this together.
In fact, togetherness was a recurring theme throughout the whole conference. Everywhere we looked, people were connecting. The excitement was contagious. Even though we didn’t know each other, we were all so happy to see each other. It was motivating, informative, and supportive in equal measure. Before we went to DSF, I think Dawn and I were both feeling a little deflated, tired of having to advocate so hard at school, in life. We were losing steam. But the conference and the energy of the people there were all the rejuvenation we needed. It gave us a sense of renewed urgency in our desire to get things done. Looking back, attending this conference felt just as monumental as going for that first EEG. We were given access to information about Dravet that we just couldn’t get anywhere else.
“[The DSF] was motivating, informative, and supportive in equal measure.”
Another session that we found especially interesting was the panel that discussed siblings of children with Dravet. We know we’re not outliers when we express how equally important the well-being of our non-Dravet daughter, Eva, is compared to that of Zora. But what we found most surprising during this session was the fact that, by and large, as parents we perceive the unhappiness/anxiety levels of our non-Dravet children to be much lower than they actually are. That our Dravet siblings share many of our stressors and, in fact, their stress levels intensify when they feel that information is being kept from them. To us, this reminded us how important it is to honest with Eva about Zora’s condition, involve her in Zora’s care, but also allow her the freedom to be herself and step away whenever necessary.
To that end, even Eva got something out of the DSF. Watching her interact with her sister in a different setting, at a different level, was just amazing. She seemed so relaxed there; so free of the baseline anxiety she must feel when she constantly has to explain Zora’s behavior to other people. At DSF, she could just be.
And as for Zora? Well, she received life experiences that she just won’t be able to get anywhere else. She got a week of open play with open-minded kids who would actually play back. No judgment. No questions asked. One of my final (and fondest) memories of the conference is seeing Zora gather for a group photo with all of the other kids in attendance. One kid was climbing on top of Zora. Another kid had his finger up his nose. But they were all in their element, all of them smiling ear to ear. Not caring at all what anyone around them was doing, but feeling accepted by them all the same.