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.


Dravet Birthdays

Children’s birthdays are such a happy time. They’re colorful, musical, delicious, and filled with goodies and gifts. We celebrate growth and milestones achieved. And as special as birthdays feel to parents of neurotypical children, Dravet birthdays are in a league of their own.

In life with Dravet syndrome, traditional birthday celebrations can be scary. The fun and the excitement of parties often cause medical complications or emergencies for our kids, and this can be heartbreaking. At the same time, recognition of another year “survived” is something we parents cherish and want so badly to celebrate and make special. It’s a mixed bag of emotions, as are many situations in life with Dravet.

DSF recognizes that Dravet birthdays are unique milestones, and thanks to a partnership with Greenwich Biosciences we were able to launch DSF’s Birthday Buddies Club this summer. Patients who are registered will receive a special gift from DSF to help celebrate another year with their loved ones. You can register here: https://www.dravetfoundation.org/dsf-birthday-buddies-club/

In honor of our Birthday Buddies, here is a letter I wrote to my daughter on the eve of her most recent birthday:

Tomorrow is your birthday.
 
Before you were born I knew things. I understood things. I knew about the world, my place in it, and my purpose. I knew about my passions, my strengths, and my beliefs. These things defined me and I was proud to be that person. Yet from the moment you were conceived you’ve taught me many unscripted lessons and shown me so much of life that I didn’t ever realize I was missing.
 
Tomorrow you’ll wake up to your birthday and you’re excited to celebrate. We’ve been talking about this for months. You can hold up the right number of fingers. You can recite the date. You have likes and dislikes and you chose a theme for your own party.
 
These small parts of a birthday are often lost in the complexity of what we have decided are noteworthy milestones. These moments and achievements were never guaranteed. For a long time I wasn’t sure we’d ever experience something as simple as having a child who is excited for her own birthday.
 
There are often times when I’m not sure what will happen, when things will happen, or what the future will look like. But truthfully, none of us know. Life is complicated and challenging and rarely do things turn out as we plan. And most of us struggle with this, we fear the unknown and shield ourselves with grand plans like saving for weddings, college, and retirement… scripting what we imagine our children’s and our own lives will look like. This is responsible parenting, but it’s also distracting. Because every moment, every goal achieved no matter how small or how certain the expectation, it’s a miracle.
 
I no longer believe “everything happens for a reason”. That’s oversimplification of an incredibly complex world. But I firmly believe that in every situation there is something to be learned, and something for which to be grateful.
 

You and your beautiful soul have taught me to let go of the plans and favor gratitude. Gratitude is what makes this life so full. Today, tomorrow, and every day I am grateful for you.

Happy Birthday, fierce girl.