Our Keepsake Journal is Here! 🎉

Two years ago, my daughter got sick. Very sick. Her body began attacking her brain. As we watched her slip away from us doctors described her condition, autoimmune encephalitis, as “her brain on fire”. She seized, she hallucinated, and she lost the ability to walk, talk and swallow.

It was gut-wrenching. Brutal. And a humbling lesson in powerlessness.

Because, as a mama, I had one job: to keep her safe. And I failed. I failed miserably. But it wasn’t for lack of trying. I tried. Man, did I try. Before illness, she ate a mostly organic diet, free of dyes, never missed a “well child” check and participated in sports and academic enrichment activities. On weekends she visited museums, attended cultural festivals and volunteered around the community. She was never left unattended and was always in bed by 9. Except for when she had sleepovers. THEN she’d stay up all night giggling. In a safe location, of course. But none of it was enough. Illness was lurking. And I couldn’t out-parent it.

When she got sick, I was certain she could beat it. I threw myself into research. I read medical journals upon medical journals, called clinics, e-mailed doctors, and even sent letters to their homes. I advocated like a beast, leaving no stone unturned. I also threw more than a few tantrums. And in the end, though it took nearly two years of suffering she had a “dream team” of physicians, a solid therapy regiment and insurance authorization for the numerous prescriptions, chemotherapy and antibody infusions she desperately needed. Life became centered around keeping her well.

Then one evening, despite everything, she had a seizure and stopped breathing. It probably wasn’t for a long time, but it felt like an eternity. And thankfully, I thought to clear her airway. And had the training to know-how.

But etched in my mind is the panic I saw in her eyes and the feeling that I had just watched my girl take her last breath.

And that fear changed me. It reminded me how precious life was. And how much it had been missing for her. In a fight for her life, I had robbed her of the experience of living. And it wasn’t until she stared death down that day that it struck me that her last memory, whenever it may be, shouldn’t be one of a life in captivity.

For most parents this is intuitive. In fact, to keep a healthy child away from the world would be considered cruel. But, in her case, my decision to put her “out there” wasn’t so easy. Because to let her live, meant risking her life. And that fought against my only desire as a mama: to keep her safe.

But that’s the crux of parenting a medically fragile child. You make hard decisions daily. But the easiest ones, like letting your child go to school, or catch a movie with friends become excruciating. Not because you don’t crave that normalcy for them, but because you’re so scared it could expose their compromised immune system to germs or seizure triggers with the potential to kill them.

And there’s no “how-to guide” to navigate through this, because nobody talks about it.

Your heart says, “Safety first,” but what about your child?

My girl says, “Let me live.”

Because, though sick, she’s ALIVE. And she’s a kid. And she wants to do what kids do.
And that’s to live life to her fullest, outside of a bubble.

And finally, I’m learning to let her.

It’s not been seamless. Life didn’t become a free-for-all overnight. But I’ve said “yes” more than “no” because a near-death experience reminded me life doesn’t happen in her room at home, or in the hospital. And if she’s not living, she’ll never know what there is to LIVE for. And as much as she goes through, she needs that.

I want her to have forever ahead, and I’ll never stop fighting for that. But I want her to have today, too.

That will never happen if I am focused on the “what ifs” tomorrow holds.

This disease has taken a lot from her, and I can’t say it won’t take her life, but today I can say it won’t get her childhood.

And today I’m thankful we’re on this side of the lesson that taught me that.

You may also like:

To the Mama Sending Her Special Needs Child to School

You Become the Advocate They Need When Raising a Child With Special Needs

I’m Not a Saint, I’m Just a Special Needs Mom

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.

Dear Graduate, I Love You Forever

In: Kids, Living, Motherhood
Kindergarten grad

I never imagined these days of preparing for graduation, senior prom, senior photos, and you actually moving out would come. A few weeks into your life, friends gifted you a 6-month sleeper. I remember the cuddly white footie pajamas well. But I swore you’d never get big enough to wear it. How could this 8-pound human grow to fit into 6-month clothes? Impossible. And then somehow they did fit, and then they didn’t anymore. Just like that. Everyone says the days are long but the years are short. Everyone, that is, who has had a lot of years. When I...

Keep Reading

Always Choose Adventure

In: Kids, Living, Motherhood
Two children looking at aquarium exhibit, color photo

Here’s the thing about traveling with little kids. Is it hard? Sometimes. Sometimes it looks like a whole carry-on dedicated solely to snacks, activities, and emergency treats. Sometimes it looks like buying a drink for the passenger next to you as a way of saying sorry and thank you all at the same time for the airplane kid chaos they endured. Sometimes it looks like altering your picture-perfect itinerary that you meticulously planned on account of missed naps finally catching up. Sometimes it looks like washing a car seat off in a hotel shower because your toddler got carsick, then...

Keep Reading

Love Beyond Words

In: Kids, Motherhood
Mother hugging daughter

My daughter Lexi lost her words and some of her motor functioning when she was two years old. She was three when the silent intruder of Rett Syndrome made itself known through seizures. But here’s the heart of our story: even without words, Lexi and I have created our own language—a symphony of unspoken love. She may not call me “Mom” in the traditional sense, but her eyes, her laughter, and the unique sounds she makes speak volumes to my heart. Each day with Lexi is a dance—one where the steps aren’t always clear, and the rhythm can change in...

Keep Reading

Daddy, Am I Beautiful?

In: Faith, Kids, Motherhood
Daddy holding preschool-aged daughter, color photo

“Daddy, do I look beautiful?” I heard my daughter ask my husband from the other room. I barely heard what she said as I was in the kitchen washing the dishes, but her words struck a chord in my heart. My sweet girl, all dressed to go out, asked for her Daddy’s assurance that she was beautiful, that she was admired and special. It hit me in that moment: this pure and built-in desire we all have to be loved, admired, and wanted. Just as my sweet girl wanted her Daddy’s approval and assurance of love, I so often cry...

Keep Reading

Sensitive Sons Are Strong Too

In: Kids, Motherhood
Boy pets kitten held by another older boy

My son has always been timid. When he was a baby, he cried when he lost his pacifier in his crib. If I laughed too loudly, he might burst into tears. Once, he was asleep in his bassinet as my husband and I turned on a movie. The MGM lion roared, and he woke in a panic that seemed to take forever to calm. Now, at five years old, my son wrestles, runs, fights, and screams at the television. He pretends to fight bad guys and save me and his twin sister. He thinks he is the king of the...

Keep Reading

Wrestle Like a Girl

In: Kids, Motherhood
Girls wrestling team huddling on the floor

I’m a wrestling mom, but I’m a new breed. I’m the kind with my little girl on the mat. Sure, I support our son out there, and I scream like a wild banshee with the rest of the crazy parents, and I’m in awe of the athletes these boys are. But then steps out our daughter. And it’s different. She decided to join her big bro at practice years ago when word was just starting to spread about the possible emergence of girls’ wrestling. She was only in kindergarten, but I think my husband might have already been thinking college....

Keep Reading

I’ll Hold on To Moments of Childhood with My Preteen as Long as I Can

In: Kids, Motherhood, Tween
Smiling preteen and mother

This Christmas season, my husband took our laser light projector and aimed it at the Australian bottle tree in the front yard. It shone like a thousand red and green fairies dancing through the branches. The first time I saw it, I gasped with glee. Christmas came and went. Much to our 6-year-old’s disappointment, we took down the decorations and boxed them in the attic until next year. I noticed that my husband forgot to put away the light projector though. One Friday night, recovering from a stomach bug, we decided to watch Wonka and fold laundry. We bought into the...

Keep Reading

“Tell Me Another Story, Daddy?”

In: Kids
Man reading to young son

“Tell me another story, Daddy?” I had heard these words since we had finished supper. My 5-year-old son loves hearing stories. He loves to put himself in these stories. He doesn’t just watch Paw Patrol, he’s in Paw Patrol. He is a Kratt brother. And he loves hearing stories about his favorite adventurers with him saving the day alongside his animated heroes. While I absolutely love telling stories to my son, there are many days when I don’t feel like it. When I want to say, “No, Daddy is tired. Why don’t you go play with your toys while daddy...

Keep Reading

Getting Glasses Can be an Adjustment

In: Kids, Motherhood, Teen, Tween
Pre-teen wearing glasses

On their last break from school, my daughter and son happily enjoyed a nice week of catching up with friends and having a relaxed schedule. I was careful to avoid overloading our schedule so we had a nice balance of days out and days being at home. As can often happen on a school break, I used one day as our “appointments day.” We had our routine dental checks and eye exams booked. The morning went smoothly with the dentist, and then it was time to head home for lunch. Next, we popped back out to do the children’s eye...

Keep Reading

To the Fifth Grade Parents: Thank You

In: Child, Kids, Motherhood
Arcade style photo machine, color photo

To the fifth-grade parents in my community: How are we here already? The end of fifth grade. The end of elementary school. It feels like yesterday we saw each other at kindergarten drop off, some of us through the tears of sending our first baby to school, some seasoned pros, and a small group of us with a touch of extra worry in our mama hearts—the special ed mamas. Among the many things I worried about sending my kindergarten son to school was how your children would treat him. Would they laugh at him like they did at his Montessori...

Keep Reading