When we heard about The Cute Syndrome Foundation's Annual Gathering, I thought, oh, that would be so neat, but there’s no way we could make that happen. Then we realized it was only 2 hours away, and my husband insisted we try to make it work if we could. I went in, not knowing what to expect. I felt unease and uncertainty, but, in hindsight, it was a great decision.
My time at the Gathering it left me wanting to create a guide for other SCN8A caregivers for when they attend their first Gathering. However, since my experience is unique, I thought I would reach out to my new-found friends, to inquire what other first-time Gathering parents experience. Here is what I learned:
1. There are both joys and challenges to bringing your kiddos along. We brought our kiddos along (our typically developing daughter, and Shirley Rose, our SCN8A warrior). We also had my parents along to help us care for the girls so we could focus when we needed to. I think we got the best of both worlds. But not everyone has that luxury. So know that whatever you choose, it will be GREAT. It’s helpful to able to focus and go to the late-night outings without worrying about meds or bedtime. Still, there is a joy in having these kiddos all together. One momma, Nora Lyons, said, “Blake got so much out of meeting people who ‘get it’ right off the bat.”
2. If things go wrong, you are surrounded by people who understand and can help. Traveling with a medically complex child is intimidating. It’s one of the things that held me back from wanting to go. But I found comfort in knowing that not only was I surrounded by other parents who also live this life every single day, but I’m surrounded by clinicians who can help if something goes wrong. Jenny McGill Weaver, a momma at the event, shares her experience “…my youngest had a seizure during one of the seminars. My husband was outside taking a work phone call, so I hurried up and got her emergency meds out of my bag, and my husband pushed her stroller down the hallway to the bathroom, not realizing I was being followed. When I got into the bathroom, there were two other ladies from the conference who came into the bathroom to ask if I needed help and just stood there with me while I ministered meds and checked on her and got her levels back up. There was no judgment. There was no looking at me strangely. It was all very routine for us. To have that support and someone there to say, “It’s okay, we’ve got your back. It’s okay to be scared. It’s okay to run down the hallway.” Just knowing we have that support was a blessing to me that day.”
3. You will be up late! One of the things we had to think strategically about was the fact that many of the sessions were after 6pm. So if you plan to bring your child(ren) along, account for bedtimes, and tag team with your spouse, or bring a grandparent along. And drink some coffee. We lucked out by staying in the same time zone, but others were coming from all over the world and were exhausted.
4. You don’t have to remember everything. At first, I had this sense of panic. I felt like I should be writing everything down so I could remember all the details. But, the volunteers at TCSF are fantastic and make sure to record everything. They make it available to the families after the event, so we have the opportunity to listen to it again later. So don’t fret. You can go back and listen again.
5. You belong. Let me say that again: You belong. I had some serious imposter syndrome when I first arrived. I felt out of place. I didn’t know anyone. I have a reasonably introverted temperament, so meeting new people is quite intimidating to me. But within an hour, it hit me; these people get it. They understand the struggles, they understand the joys. They GET IT. And never have I felt so known in this journey with Shirley as I did hearing the struggles and celebrations of other SCN8A families. Some of you may feel this sense of belonging right away, but for others like me, it may take you a while to warm up. But regardless of your temperament, you will know that you belong before the weekend is over.
6. You will be overwhelmed at moments. And it’s okay! There is a lot of scientific talks, and unless you have a framework for science, some of it will be very confusing. Take some time to talk with your neurologist before coming about the science of the variant SCN8A, read up on the way sodium channels work, or just come ready to learn and ask lots of questions. Depending on your personality, you may like to feel prepared, or you may want to come in open-minded and learn as you go. Just know that it’s okay if you don’t fully understand some things. One thing that is helpful to know is your child’s specific variant.
7. Some of the best moments won’t happen during a session. Roland Waegner says it well when he says, “Bring spare time. And if you’re bringing your kids, make sure there’s someone else with you to look after them, because the socializing in between events or at the bar is where I felt the real magic happened. Parents (veterans and first-timers), clinicians, pharma people are all completely eye-level peers once removed from the lecturer-audience context, and you can feel the tremendous energy and dedication on everybody’s part.” Some of the best conversations and connections we had were not during a session but in the in-between times. Talking with families who have been walking this journey for years, hearing how far things have come, asking how they cope with some of the struggles, it was all so encouraging to my soul.
8. You will leave part of a beautiful community. During this event, you will realize that you have never felt so understood in your journey with your child. During one of the sessions, a clinician asked how many parents felt their kids were sensitive to sounds or easily startled, nearly every hand went up. He asked how many parents felt their child had a high threshold for pain, again many hands went up. These are things that the researchers can’t explain with science(yet), but we parents are living it firsthand. These parents, clinicians, and researchers are a powerful community. A community who is a driving force to gather more understanding and better treatment, so that we can give these kids their best shot, despite a really crappy diagnosis. You may start the gathering uneasy, but you will leave feeling part of a family.
Written by Faith Titus, SCN8A Mom and first-time TCSF Gathering Attendee