This little body held a secret. Eight days after this picture was taken, on February 16th, 2014, this little boy would have his first seizure on a chilly Sunday afternoon while on a walk in his stroller with mom and dad.
Over the next 10 months we watched him seize, turn blue, take medication, and then return to the silly boy we knew. But then milestones were missed. Development declined. And a new seizure type presented. At the age of 13 months old the secret was revealed; a non inherited genetic mutation on his SCN1a gene and a diagnosis of Dravet Syndrome.
Did you notice the date? February 16th. Today. Today is our seizure anniversary. A full decade. Thousands upon thousands of seizures equating to days of his life gone. Gallons of medication. 10 years of around the clock vigilance. And something new to learn every single day.
They say parents learn more from their children than they teach. And I think that is true. I’ve learned about a disease that is a thief and in a strange way a gift. I’ve learned more about medical terminology than I ever dreamed. In the last 10 years we have learned that seizures can be cyclical, and February, well… February is always one of the worst months.
I’ve also learned how to be a fierce advocate. I’ve learned how to be patient. I’ve learned a new level of kindness. I’ve learned that everyone belongs in a more deep and profound way. I’ve learned perspective of what really matters; community, compassion, hope, and doing the hard work that needs to be done.
About four years ago I asked him where he goes when he has a seizure, what he sees. His answer shocked me. He said, while spreading and raising his arms wide, “blue. Calm.” I imagined an endless sky of blue where he floats supported and safe. Is that real? I don’t know. But something about that idea brings me peace. On the outside he is running marathons, but maybe on the inside there is calm and quiet so that when he wakes he can take on what’s next.
This little boy has moved mountains. He continues to move mountains. Is it easy? No. Do I love him? Without measure. Do I work toward finding a cure? Every single day. You see, it’s not just about him. It’s so much bigger than that.
So today, when the grief of this disease is particularly heavy for me, and the weight of what is and will never be is sitting upon my heart I’m going to ask a favor of you. Anniversaries are a time of celebration and of gift giving, so in honor of our anniversary will you please give a gift of love to someone? A hug, a smile, and text message that says, “You’re so stong!” It can even be a gift to yourself. But give the gift in honor of the little boy you see above. Will you do that favor for me? Will you share a little love and sunshine with someone?
And to my son: Happy anniversary. You are so loved. And I’m so lucky to be your mom.
