This week’s guest blog post comes from DSF Parent Ambassador Morgan Turpin. Morgan is a full-time genetic scientist, a mother of two, a part-time writer, a parent ambassador for Dravet Syndrome Foundation, and an avid researcher and advocate for her son. She aims to spread awareness about Dravet syndrome and the difficulties of parenting a child with a complex medical condition.
If there is one thing my husband and I have learned about Dravet syndrome, it’s that we still have so much to learn about Dravet syndrome. Our son Shayne had his first seizure when he was seven months old. We have been battling Dravet alongside him for almost seven years now, and the thing that becomes more apparent the older he gets is that Dravet is so much more than just seizures.
This past year in our journey has been extra difficult, and the battles we have fought have been numerous. We have fought insurance who denied coverage for a newly FDA-approved medication. We spent hours arguing on the phone to get it sorted out, while he continued to have seizures every day.
Once he finally started the new medication and his seizures decreased, we began to battle side effects. As the new med began interacting with the levels of his other meds, his behavior changed overnight. His impulsivity went through the roof, and we saw behaviors that were previously extinguished return worse than they were before. We found ourselves between a rock and a hard place, wanting to celebrate the newly found relief from seizures, and also wanting to cry from exhaustion and exasperation over the daily behavioral struggles.
We have battled a school system that is not designed to protect its most vulnerable students. We have fought to ensure that his accommodations are being utilized properly to give him the highest chance of success. We have fought to educate the staff on the severity of his syndrome, and how it truly affects every part of his life. We have advocated for him, and fought for the compassion and grace that we know he deserves.
We have fought against a larger system that is broken. A system that is intended to help those like him who need it, but one that is flawed and often ends up making things more complicated for individuals to access vital resources. He was removed from a program that we rely on, simply because an overloaded and overworked case worker was not able to complete a re-assessment on time that was necessary for him to remain eligible. We fought to have him re-instated, but it was a fight that never should have happened in the first place.
Currently, we find ourselves up against another looming battle- summer break. A time that many approach with hope and joy for opportunities to explore with their children, soak up the sun, and fill the days with play. In our world summer means rising temperatures and isolating him indoors to keep him safe. It means an unwanted break in the structured routine that he thrives in. It means internalizing the heart break that we feel as we hear children laughing outside and enjoying the warm weather, and wishing beyond anything that he could have that same experience without the consequences that would follow.
Although it’s been a battle-heavy year, we believe that with these struggles comes the opportunity for growth. Instead of dwelling on the difficult times this past year has brought, we choose to reflect on the ways that we have grown from these experiences, and the lessons we have learned. We know that each battle is preparing us for his future. We grow in confidence each time we stand up for him and advocate for his best interest.
Just as we have been given advice from those who have fought before us, we strive to pass along the knowledge we have gained to other families who are not as far along in their journey. We have learned that self-care is not selfish. These battles take their toll, and it is vital to take the time to recharge emotionally, spiritually, mentally, and physically. We have learned to lean on each other, because we cannot both be strong all of the time.
We also draw strength and perseverance from our hero Shayne; the one who fights the biggest battles of all. Despite the thousands of seizures he has had in his lifetime, he continues to face each day with a level of bravery that is inconceivable. Despite the physical, behavioral and cognitive setbacks Dravet has imposed on his body, he continues to defy the odds and to push forward. We will do our part to continue learning to navigate this complex world of Dravet syndrome with him as our guide. We will fight for the quality of life he deserves. We will choose joy and keep choosing it.