SUDEP.

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:

Nothing Makes You Appreciate Life More Than Death

To the Mom Who Just Received Her Child’s Hard Medical Diagnosis

So God Made a Mother book by Leslie Means

If you liked this, you'll love our book, SO GOD MADE A MOTHER available now!

Order Now

Check out our new Keepsake Companion Journal that pairs with our So God Made a Mother book!

Order Now
So God Made a Mother's Story Keepsake Journal

Cara Arnold

I’m a mama to 3 whose learning to balance parenthood and chronic illness at the hands of autoimmune encephalitis. Some days I’m a soccer mom, carpooling like a boss; other days I’m a relentless advocate, taking on doctors and insurance companies alike. But, if you’re looking for consistency every day I’m a hot mess. My life is a puzzle that’s still not together. I used to think pieces were missing. But it's all finally fitting together. It’s not what I envisioned, and some days I mourn that; but it’s mine. And knowing how fast that can change I try to appreciate every moment of it.

I Had to Learn to Say “I’m Sorry” to My Kids

In: Kids, Motherhood, Teen, Tween
Mom hugs tween daughter

My two oldest kiddos are at the front end of their teen years. I remember that time in my own life. I was loud, somewhat dramatic, I let my hormones control me, and I never—ever—apologized. This last part was because no one ever really taught me the value of apology or relationship repair. Now, I could do some parent blaming here but let’s be real, if you were a kid whose formative years were scattered between the late ’80s and early ’90s, did you get apologies from your parents? If so, count that blessing! Most parents were still living with...

Keep Reading

5 Things Your Child’s Kindergarten Teacher Wants You To Know

In: Kids, Motherhood
Child raising hand in kindergarten class

I am a teacher. I have committed my life to teaching children. Of course, before I began this career, I had visions of standing in front of a group of eager-eyed children and elaborating on history, science, and math lessons. I couldn’t wait to see the “lightbulb” moments when students finally understood a reading passage or wrote their first paper. And then I had my first day. Children are not cut out of a textbook (shocking, I know) but as a young 23-year-old, it knocked me right off my feet. I was thrown into the lion’s den, better known as...

Keep Reading

To the Extended Family That Shows Up: We Couldn’t Do This Without You

In: Kids, Living, Motherhood
Family visiting new baby in a hospital room

This picture—my heart all but bursts every time I see it.  It was taken five years ago on the day our daughter was born. In it, my husband is giving her her very first bath while our proud extended family looks on. It was a sweet moment on a hugely special day, but gosh–what was captured in this photo is so much more than that. This photo represents everything I could have ever hoped for my kids: That they would have an extended family who shows up in their lives and loves them so deeply.  That they would have grandparents,...

Keep Reading

You’re Almost Grown, But You’re Always Welcome Back Home

In: Kids, Motherhood
Teen in room studying with computer and smartphone

Dear child, In the days before you could walk or talk, there were times when you would wail—when my rocking and shushing and bouncing were seemingly futile—but it didn’t matter. Each day and night, multiple times, I always picked you up and welcomed you back into my arms. As a toddler and a preschooler, you had some pretty epic meltdowns. There were times when you would thrash and scream, and all I could do was stand by and wait for the storm to blow over. Eventually, you would run to me, and I would welcome you back with a warm embrace....

Keep Reading

No One Warned Me About the Last Baby

In: Baby, Kids, Motherhood
Mother holding newborn baby, black-and-white photo

No one warned me about the last baby. When I had my first, my second, and my third, those first years were blurry from sleep deprivation and chaos from juggling multiple itty-bitties. But the last baby? There’s a desperation in that newborn fog to soak it up because there won’t be another. No one warned me about the last baby. Selling the baby swing and donating old toys because we wouldn’t need them crushed me. I cried selling our double jogger and thought my heart would split in two when I dropped off newborn clothes. Throwing out pacifiers and bottles...

Keep Reading

Parents Are Terrible Salespeople for Parenting

In: Kids, Motherhood
Tired mother with coffee cup on table, child sitting next to her

As the years of fertility start to wane, many of my childless peers are confronted with the question, “Should I have kids?” With hesitation, they turn to us parents who, frankly, seem overwhelmingly unhappy. They ask sheepishly, “Is it worth it?” We lift our heads up, bedraggled, bags under our eyes, covered in boogers and sweat and spit up, we mutter, “Of course! It’s so fulfilling!” It’s like asking a hostage if they like their captor. Sure, it’s great. We love them. But our eyes are begging for liberation. Save me, please. I haven’t slept through the night in years....

Keep Reading

Soak in the Moments because Babies Don’t Keep

In: Kids, Motherhood, Tween
Roller coaster photo, color photo

I love marking the moments, the ones that count—making a note and storing them for memory. But I often miss out on them when it comes to our oldest. ⁣ ⁣The day he wanted to be baptized, I was at home with another kiddo who was sick. He called me from church excitedly, emphasizing he was ready and didn’t want to wait. I couldn’t argue with that, so I watched him go underwater through videos my husband and sweet friends in the congregation took. ⁣ ⁣On the day of his fifth-grade graduation, we found ourselves at the pediatrician’s office. Instead...

Keep Reading

Sometimes a Kid Just Needs a Sick Day

In: Kids, Motherhood
Little boy outside, color photo

My middle son stayed home from school today. He said he was sick. I’m not sure that is the truth. I was lucky enough to have a mom who was an amazing caretaker, especially when you were sick. She pulled out all the stops. A cozy clean space to be, a thermos with ice cold juice by your side, Mrs. Grass’s soup, and Days of Our Lives on the screen while she tidied up the house. It was the best feeling in the world to be home and cozy with my mom when I was sick. It felt cozy and...

Keep Reading

Sometimes We Need Someone to Just Sit With Us in Our Struggle

In: Kids, Motherhood
Sad woman sits on floor, black and white image

Early this morning, I told (yelled is more accurate) my sons to get up with the same furious ferocity I use every morning when I realize they should be ready to go, but are still unconsciously snoozing away. One son lazily said, “I’m up, Mom” (even though he was very much not up). The other son, who typically has no problems getting up, had overslept and immediately freaked out, thinking he would be late to school. He proceeded to have a mini-meltdown from the dark recesses of his bedroom. That overflowed into the hallway where I found him lying face-down,...

Keep Reading

Daughter of Mine, Do Not Let the World Extinguish Your Fire

In: Kids, Motherhood
Mother and young daughter, color photo

Daughter of mine, I see the fire behind your eyes. Do not let it die. Daughter of mine who runs wildly and loves freely and whose anger is always whipping silently just under the surface like a pilot light, ready to ignite with one tiny spark. Do not let it die. RELATED: There is Wild Beauty in This Spirited Child of Mine Daughter of mine, one day you will become a woman, and the world will try to steal you and mold you and tell you who to become. Do not let it. It will try to fit you in...

Keep Reading