Sudden unexpected death in epilepsy.
SUDEP killed Disney Channel star Cameron Boyce and brought “the unspoken” into my home.
We were at the beach staying at a property for families with “medically fragile” children. Yet, ironically, I thought we had checked reality at the door.
We were lying on a bed together resting, my daughter and I. Breaking the silence she said, “Is it true Carlos is dead?”
“Carlos who?” I asked.
“From Descendants,” she answered.
I took a deep breath, realizing she wasn’t talking about the character.
“Yes,” I answered, “he had a seizure.”
And the question I knew would follow, did. Yet, somehow, I wasn’t prepared.
“Like mine?” she asked.
“Yes,” I answered. Not because it gave the clarity she deserved, but because it was all I could muster.
We sat in silence again.
“Is that what happens to me, mama? When my head gets fuzzy?” her question finally came.
“Yes,” I answered again, at a loss for words.
“Did he take his medicine?” she asked.
“I’m sure,” I replied.
“Then, why’d he die?”
“I don’t know, baby,” was the best I could say.
Then she said it. The words that took all mine away.
“Will I die, too?”
I sat up and put my arms around her.
“I hope not, baby,” I said. And I explained all the things we do to keep her safe. And reminded her that’s why she’s never left alone and that’s why we’re awaiting her service dog so anxiously.
The truth is tomorrow isn’t promised, and I couldn’t tell her it was. She cried and I did, too. Because for the first time, we both sat with the notion that she could die.
And nothing prepares you for that.
For Gracie, seizures are the result of an acquired brain injury. After several strep infections, her body attacked her brain and irreparable damage was done before a diagnosis was made. I have seen her fight death before and overcome it. So maybe I always assumed she would again. But she was so sick through that experience she never knew. And suddenly “seizures”—the only diagnosis she understood—was a threat to her life.
We talked and talked that afternoon. More about living than dying.
She told me she wanted to ride horses, learn to walk again, and see Carrie Underwood. I learned she believed in both Heaven and reincarnation, and she had once written a will. She shared the things that mattered most to her and I assured her she was heard.
Nobody wants to talk about death with a 12-year-old.
But we did it.
And I’m thankful we had the chance.
My heart breaks for the family of Cameron Boyce, or “Carlos” as Gracie knew him, because they are living every parent’s worst nightmare. But the narrative they shared with such vulnerability gave me a gift I will hold onto forever—it gave Gracie the opportunity to say “I’m scared.”
You may also like: