My Daughter Has Autoimmune Encephalitis, And Here's My Regret

I Wish I Had Savored My Daughter’s Last ‘Good Day’

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My daughter was born a firecracker. Seven pounds of sugar and spice, with these big, beautiful eyes through which we’d both take in the world. She was brave. Or maybe just innocent. But nothing scared her. And the two sets of stitches she had by her first birthday was proof of that. She loved without bounds, and in return everyone loved her.

She was my first. And I celebrated her firsts.

Her first word, her first tooth and her first steps. Her first birthday, her first gymnastics class and her first school day. Her first awards ceremony, t-ball game and cheer competition. And so, the list goes on.

These firsts were characterized by cheers, often celebrated by many and marked by pictures. Pictures of the moments already frozen in my mind.

These are the firsts a parent looks forward to. The firsts I thought we’d share a lifetime of. The firsts that, unfortunately, chronic illness robbed me of.

As vividly as I remember these “firsts,” I remember a last too.

Her last “good day.”

And I wish with everything I have I’d stopped to enjoy it more. Or, at all.

It had been a long day. And she had taken an extra-long bath, and “forgotten” homework until the last minute, and then chose the longest bedtime story. And we were tired. Or, I was tired. And I rushed through the story. Never looking up at her taking it in. Expecting many more. And I skipped words, and even pages where I thought she wouldn’t notice. And every day since I’ve wished for those words back. Because she awoke in a different world.

The world of autoimmune encephalitis.

Courtesy of Cara Wells

A world where her body attacked her brain. Where antibodies meant to fight infection instead attacked her nervous system. A world where her brain was described by doctors as “on fire.” And in this world, she was paralyzed. A girl, my girl, who had been throwing back handsprings the day before now couldn’t move. Gymnastics and softball were replaced by hospital stays and physical therapy and her carefree laughter by shrieks of pain and terror. The fight for homework to be completed or for her to “just go to bed” that had made me bonkers only hours before paled in comparison to this fight – one for her life.

Literally, overnight our world changed.

And again, there were firsts.

Her first seizure, her first hallucination and her first ambulance ride.
Her first EEG, hospital stay, and infusion.
Her first PICC line, feeding tube and port.
Her first wheelchair and walker.

Courtesy of Cara Wells

These firsts are also frozen in my mind. They lacked fanfare, for obvious reasons. But the silence that accompanied them meant they lacked support. Support for me, necessary to support her.

And these firsts, cruel though they were, had a purpose. They prepared me for other firsts – like the first time I prayed she’d make it to the hospital or reckoned with the idea from there she may never go home.

And those firsts are the most isolating part of illness.
The part nobody shares.
Because they’re huge. And etched in your mind. But not celebratory.

Courtesy of Cara Wells

Gracie is a fighter. I’m quick to say that.
She has good and bad days, and I can voice that.
But, whether I’m protecting her or me; the depth of the bad days has stayed a quieter battle.

Things have stabilized for my girl. She had her first round of chemo. And is now home from the hospital more days than not.

And again, we’re experiencing new firsts.

Her first IEP. Her first partial day of school. And her first time on an “all inclusive” sports league. And I celebrated these moments. Because they were big. They were moments I didn’t know would ever come. But I celebrated them alone – because they aren’t the kind of firsts you can explain.

And the hard part in writing this is I know if they knew I needed them, and if they knew how, my friends would have been by my side. But illness isn’t like that. Nor is “special needs” parenting. There’s no “what to expect when you’re expecting” sort of guide. Because it isn’t what anyone is expecting.

Courtesy of Cara Wells

There were firsts I never thought of.
And would never want another mama to.
But if I see one experiencing a medical crisis now, I do speak up.
Even if it’s just to say, I’m here,
Because I know illness is scary.
And never meant to be navigated alone.

Courtesy of Cara Wells

Parenthood, even under normal circumstances takes a village.
A village on the good days – and the bad.
But parenthood with illness REALLY calls for a village.
A village of support, shared resources and shoulders to cry on.

And to the mamas who need a village, reach out.
Because other mamas do too.
I promise.

We’re here… waiting.