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.
A Dravet Mother’s Day
I thought I knew what to expect when I became your mother.
I felt your fierce and feisty personality from your first kick. I knew we’d butt heads with our strong wills and I’d yell things like “Someday you’ll understand!” There’d be door slamming and show tunes singing and late night tears over broken hearts. You’d hate me for a while but eventually think I was cool. We’d lament over short legs in dressing rooms and share gallons of ice cream from the carton. I had a vision… but Dravet had another.
When you had your first seizure I thought that was the end. My heart shattered that day and has been slowly gluing itself together since. Watching you suffer over and over and over is the most devastating thing I ever could imagine. And knowing the only things I can do are work hard and have hope… it’s exhausting.
But you, my dear, taught me how to work hard and have hope.
You taught me to embrace everyone and everything. To enjoy simple things and take nothing for granted.
You taught me that every day is a miracle, every breath is something to cherish and be thankful for.
You taught me that everything is a celebration, and that not all milestones are created equal.
You have shown me strength, true strength, that only the toughest warriors have. And you are slowly helping me build to my own strength.
You taught me lessons that have led to new mantras like “Choose Joy,” and “low lows = high highs.” Even on our worst days I find confidence in you.
You’ve inspired the masses. Your bubbly smile and shining light have helped raise thousands of dollars so that we can build a better future for families we’ve never even met.
I thought I understood myself, my life, my purpose… but I can see now that none of it mattered before you. You sparked a love so deep that I’d be willing to uproot everything and move mountains.
I don’t know if we’ll ever get the future together that I cooked up in my brain. We’ll probably never share ice cream from a carton, and I’ll never yell about our unpromised future. We already lament over broken hearts, just not in the way I imagined. And we do get to sing show tunes, for that I am incredibly grateful.
The truth is I have no idea what is coming… and I never did, I just never realized that.
What I do know is that becoming your mother has been the most transformative and empowering experience I’ve ever had. Being your mother gives me meaning. Every day you give me drive to power through whatever challenges come our way. You make me a better person every single day, and I am so thankful to be your mother.