This week’s guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny’s diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome.
Wendy joined #teamDSF in March 2018 as Director of Family and Caregiver Engagement after serving as a Volunteer Parent Ambassador for the Northeast Region of the DSF Family Network. She comes to the team with a decade of experience as a classroom teacher.
That age was so hard.
I’ve heard this a lot lately. As a mother to a four year old with Dravet syndrome I’m hearing, and living, these hard years. I’m so thankful for the compassion and guidance of my community, especially the parents of older children and adults whose wisdom guides me in more ways than they realize.
Year 4 has been such a turning point for our daughter, as I feel like it is for many parents including those of neurotypical children. We’ve had fewer tantrums and more hugs. She oozes love and every day a new surprising and hilarious catchphrase pops out of her mouth. She’s got the best dance moves ever and has become a total fashionista. I know there is much to be thankful for. Her communication. Her awareness. Her mobility. I take none of it for granted and realize that at any time it could change.
This age is so amazing.
But in spite of all that, Dravet syndrome persists. She’s seizing a lot. More than ever, actually. And though the prolonged seizures for which we frequented the emergency room have been gone for years, the frequency and number of seizures is crippling. This is difficult in so many ways. No activity can be done without caution. At any time we may need to drop everything and become first responders. And she knows now, just enough, that these seizures are a part of her life. Just this morning after a series of little seizures, which we usually call head drops, she said to me “Don’t worry Mom, I’m just having head drops.” Last week after a big seizure at a fun new play place, we went back the next day and she said “Don’t worry Mom, I won’t have a seizure today.”
This age is so heartbreaking.
This little incredible person who I am supposed to be caring for is telling ME not to worry. Meanwhile she is poked and prodded weekly. She takes more pills in a day than most people take in a week. She tells all the well-meaning adults who offer her cookies or candies “I only eat Keto food.” She kicks back syringes of oil and medication willingly without gagging or fighting. She amazes me with her four year old ability to manage this life with such grace.
This age is so resilient.
I find myself in this strange limbo. Not just as I look at my daughter and wonder what the future will hold, but also as I look at myself. At some point in the toddler years things became manageable and I decided I would take back my life. I would champion for her and advocate for the community. I would work and find time for self-care and balance. And then things slowly got unmanageable again. So many parents have to give it all up. Their careers, their hobbies, their family plans and hopes for a future. Some brave families I watch with awe as they plow forward with futures that are not defined by Dravet. They have more children. They find helpful caregivers and take advantage of them. They travel and try things and live fulfilling lives that are not guided by fear of the unknown. And every day I wake up and think: which of these will we be?
This age is so defining.
I’ve learned to dial back my naivety. “Cautious optimism” is the name of the game. We continue to try and retry medications with bated breath. We focus on the long game; this is a marathon not a sprint. We’ve explored our first clinical trial. We’ve felt the gravity of big life-changing decisions and the pain and fear that we might (or did) get things wrong. We’ve met the top doctors and we’ve assembled an amazing care team. We’ve got educators and therapists and coaches on board. We’ve built our village. We’ve encountered the kindness and dedication of so many from within and out of our community.
This age is so eye-opening.
We’ve shared our story over and over again and we wonder “When will everyone tire of this?” We’ve questioned everything. Parenting, career, medical decisions… There is no correct path. Do we save for college, or adult medical daycare? Do we need to keep accessibility in mind when we make decisions about our living space? Do we sleep with her in her bed or ours? Do we let her have one little extra bite of broccoli even though it’s not in her medical diet plan? Every decision feels like the weight of the world. And with such an unclear future, no path ever feels right.
This age is so confusing.
And when it all boils down, we rely on hope. Hope that soon there will be better treatments. Hope that soon we may have a genetic cure. Hope that someday she may become independent. Hope that if she doesn’t we are able to keep up with her care. Hope that she continues to advocate for herself and be proud of who she is. Hope that as she ages she finds compassion and support from peers. Hope that our community continues to grow and support one another, and that we can guide the next generation through the hard years with as much kindness and compassion as we receive. Hope that as we become more knowledgeable those with Dravet will receive better care and have better outcomes. Hope that our sacrifices will have a lasting impact on the face of Dravet syndrome and rare epilepsy.
This age is so hard, but so full of hope.