BY BARBARA SWOYER

First published on The Dravet Syndrome Foundation site, June 21, 2019. 

Barb and John were one of the earliest couples that joined and contributed their story with Jake to the Network.

In 2018, I published a blog called A Blessing and A Burden. My writing was inspired by the milestone of my son turning 22, the emotions and challenges that surfaced as he aged out of school and its entitlements into an adult world, and what that meant for each of us. As we had already experienced many times, it was a turning point in his journey of living with Dravet syndrome that required acceptance and adjustment.

Just over a year later, there is time to reflect on where we are today, after that significant transition. My son is well into his new routine, and we are continuing to adapt into this new phase together. I am slowly and continuously evolving in my role as the parent of an adult with Dravet, just as I have adjusted and grounded myself throughout every earlier touchpoint of his life.

When I look back at the last 23 years, his journey with Dravet seems to have unfolded in series of stages. I remember those early years when the seizures began, full of fear, crisis and uncertainty. In hindsight, I think that was the most challenging time. I observe the same fear and despair that I once felt so acutely in the parents of young babies, as Dravet reveals itself. I see you. We have all been there.

At some point, gradually, there is often an adjustment. Seizures persist, stability is variable, your child is aging and growing, and though there is still confusion, there is also more clarity. You find your people and community. You find support and resources, leaning on the guidance and wisdom of parents who have traveled the same road before you. The realization that Dravet is going to permanently impact the life of your child and family slowly sinks in.

As your child ages, new feelings might arise. Fear and doubt about their future and yours. Wondering how and if your child will survive. How you will manage their care in the present and future. How you will cope as your child gets bigger and older. What will their life look like? Will they ever be independent? What will become of your life and theirs? You might look with unease at the older patients, particularly the severely affected ones, and wonder if that’s how your child will eventually present.

As older parents, many of us are keenly aware of the advantages that exist today that we didn’t have the benefit of, including an early diagnosis, better treatment options and outcomes, a robust virtual support network and advancing research. We also didn’t have the opportunity to see and learn from the lives of older children and parents. As is true for any person with Dravet, some of our children have grown to lead more independent lives, but many have not. We are sensitive to the fact that our grown children can instill both comfort and fear in seeing what lies ahead. It can be a challenge to blend the two worlds of the younger parents and the older, and to support the unique needs of each.

Sadly, Dravet doesn’t go away. In most cases, it does not get easier. There are days of joy, certainly, but there are also days when I feel I am hanging by a thread, wondering how much longer I can manage this parenting role that I am blessed with, yet often feel trapped in. Chronologically and legally my son is certainly an adult, yet in every other possible way he is a child who requires 24/7 care and is totally dependent on us for every single aspect of his being. A fully grown person who presents as a toddler, living somewhere in the gray area between childhood and adulthood with no clear path forward.

What I want to tell the younger parents is this. You will evolve. The fear doesn’t go away, but it won’t always consume you. As you have already done, you will continue to learn how to live with Dravet. There will be unexpected challenges all along the way, from infancy, to toddler, to childhood, to teenage years and eventually into adulthood. Thinking too far ahead will be overwhelming. Live in the moment and take each day as it comes.

Just as our children do, each of us as parents will evolve differently and in our own way. In this community, everyone brings something to the table. Everyone contributes, whether in a large or small, obvious or subtle way. It might be as simple as being there for a frightened parent in the middle of the night, or as substantial as raising thousands of dollars. The beauty is, we are all walking the same path and we are all able to be of support in whichever way our strength and capacity allows. It is compelling to watch the newer parents grow from being overwhelmed and uncertain to becoming supportive and knowledgeable, as they gradually learn how to cope and trust their instincts.

Age does not equal expertise. It equals experience and perspective that has come from years of struggle. I didn’t see myself here 20 years ago, and could not have envisioned my life as it looks today. Rather, I almost subconsciously grew as I needed to. The community of parents of adults with Dravet is a small but growing group. In this phase of the journey, our path and that of our adult child often feels as unchartered to us as it did when our children were born. We have learned many things over the years, namely how to cope and advocate for ourselves and our child.  We know the value of community. We know our value to the younger parents coming after us. We also know their value to us. Often, it is the parents of the newly diagnosed who are the most determined and driven to help move the mission of DSF forward. We all need each other.

Being a seasoned parent affords the opportunity to forge a path for the families coming behind us. As the adult Dravet population is growing, we as parents are recognizing and calling attention to the unmet needs of our adult children. Social, emotional, recreational and medical support is lacking across the board. Creating awareness of these shortcomings and advocating for greater resources is the best we can do to make a difference to affect change for a better future for all of our children.