How Autoimmune Encephalitis Changed My Daughter

Two years ago I tucked my little girl into bed. It was a night like any other, really. She argued. She stalled. She brushed her teeth at least twice as long as I thought she needed to. She remembered homework at the last minute that had to be done. And for a bed time story she chose Madeline, the longest book she could think of.

I wish I could say reading it together we shared a tender moment. But we didn’t. I rushed through it. My mind was already ahead to dishes that needed to be done, the piles of toys that needed to be picked up, and a TV show that I really wanted to watch. Alone. Without kids pulling on me.

I skipped words reading to her that night, and even pages when I thought she wouldn’t notice. My mama energy was tapped. I remember reasoning to myself that it wouldn’t be the last time I read that book to her, anyway. I hurriedly kissed her good night and turned out the light. In truth, I don’t remember if I even said “I love you.” I wish more than anything I had.

Gracie woke up a different child. Seemingly overnight, an illness that would later be diagnosed as “autoimmune encephalitis” took my girl. It took her sweet disposition, her memory, her mobility, and her speech. Literally in the blink of an eye, my girl, as I knew her, was gone.

In many ways, I’m glad I never saw it coming. Naturally, I look back and wish I’d looked in her eyes longer, and kissed her cheek over and over, but I can’t imagine tucking her in — knowing I may never see that light in her eyes again.

But that nights haunts me. Because I love her so fiercely. And love like that — the love of motherhood — is paradoxical. It’s exhausting. But tireless. When I tucked my girl in, I had no more to give. But what I wouldn’t give today to have the words I missed and the pages I skipped back.

Stay in the moment, Mama. Leave the dishes. Step over the toys. Hug your babies. Watch your show. Take care of you and take care of them. The rest will take care of itself. And if it doesn’t, it won’t be what you remember.

Hold on to the moments. Because you’ll never get them back.