I Won't Let My Daughter's Rare Illness Hold Her Back

My daughter came into this world a spitfire. From day one she was sweet, but fierce. Looking into her eyes, and hearing her “battle cry,” I knew she was destined to do great things.

At two, I told her “no” to a dress she asked for in a store. She went to my parents and came home with not just the dress, but the coordinating bows, sweater and shoes. Like it was yesterday, I remember thinking “Oh my, we have a negotiator on our hands.” That year she also made the local paper for sharing her Easter eggs with children who found less. “You must be so proud,” people cooed. “Perhaps she’ll be a philanthropist,” I thought.

At 4, on her first day of preschool, she asked to be line leader. The teacher explained that role had already been filled. Without missing a beat, she struck up a conversation with the teacher and headed off to class, at the front of the line. “This kid knows how to a play the system,” I thought and I shook my head.

Later that year I was called in for a parent-teacher conference. Gracie had been instructed to follow along a line in the hallway that ran parallel to others. She was not following the correct line. And as I remember the story, the teacher reminded her, “She had been asked to walk on a line.” And triumphantly Gracie said, “Am I walking? Is THIS a line?” before adding, “What’s the problem?”

And while the attitude wasn’t acceptable, I had to chuckle. “Your hands must be the full,” the teacher laughed. “We love Gracie,” she added. My kid, that girl destined for greatness — she was going to be a lawyer.

As the years passed, her charisma and wit stayed constant. But her heart only grew. She showed interest in history and women’s rights, and always stood up for the underdog. At 9, she was a straight A student, adored by her classmates and teachers alike.

At a parent teacher-conference that year, I got to read her “Letter To The President,” advocating for kindness first. Before I left, her teacher said, “If I could have 22 of her, my job would be a dream.” She had it all. Brains, beauty and a desire to lead. “Maybe there’s a place on the Supreme Court for this girl one day,” I thought. Again, I just knew she was here to change to the world.

Then, in the fall of 2016, it was our world that changed. Gracie’s passion for life started to fizzle. The light in her that had always shined so bright, dimmed. She didn’t want to be around people, she couldn’t focus on anything and she became fixated on drawers being cracked open and doors being closed. My once “happy go lucky,” fearless girl had become afraid of her own shadow. Shortly thereafter, her short-term memory was gone, and she began suffering from seizures and hallucinations.

In the months to follow, she’d be afflicted with paralysis that would take her mobility — and at times a cruel inability to speak, eat or swallow. “This must be so hard to watch,” people would say. All promising me, “She’ll make a comeback,” before quickly looking away.

We chased answers for two years, tirelessly. We trekked across the state, and then the country. That time is a blur. I remember some of the highs and lows, but few specifics. With unfortunate detail I remember the rising feeling of hope that accompanied each new idea, and the despair that followed when it didn’t pan out. People came and went from our lives. Theirs continued but ours stood still. No longer did people comment on our girl, but on my husband’s and my strength. The thing is, though — what they didn’t know is it wasn’t strength carrying us forward. It was necessity.

Last week, Gracie had her fifth feeding tube placed. And I broke down. It was by no means the biggest setback she’s faced, but in that moment, it felt monumental. My girl, a child once so outspoken, again couldn’t swallow her own food. And that made me sad. And as I sat in the surgical waiting room, a place I had stoically sat so many times before, I sobbed.

I wasn’t crying for the tube, though, or even its placement. Not because repetition makes it easier to watch your child sedated, but because the unfortunate truth is you find a place of normalcy with it. You come to know and trust those caring for your child and know they know how to meet her needs. The tears that came pouring out were for all the times I’d been strong.

The ambulance rides. The seizures. Perhaps, scariest of all, the hallucinations. The times I’d looked into the eyes of a terrified child, who in that moment wasn’t my girl. A child who was afraid of me, because through the lens of illness, she couldn’t see me as her mama. I was a woodpecker determined to attack her. I was a troll pulling her under my bridge. The times I’d been incorporated into those hallucinations, while she was still just a child who still needed my hand.

And freely the grief just flowed.

And I remembered the last IEP meeting I’d attended. Where the school told me her goal for next year was to learn 22 of 26 letters. And my grief turned to anger. “This can’t be as good as it gets,” I thought.

And then the weight fell.

“Maybe it is,” I thought.

And I called her doctor. A wonderful lady who’s walked this journey by my side and I asked her, “Is this it? Is THIS as good as it gets? Is today the day we need to stop pursuing answers, and become more attentive to her quality of life?” And I held my breath. Because saying that felt like giving up. And there was relief when she said, “We’re not there, yet.”

But fear followed when I realized without someone else to say it, I would never know. I thanked her for her honesty and hung up. And silently contemplated if my own ignorance was a blessing.

My thoughts were interrupted as the nurse spoke my daughter’s name. She was awake, and ready for her mama. I was disheveled and red-eyed. But she didn’t mind. I kissed her forehead, and she reached for my hand. “She’s a champ,” the nurse shared, and all I could do was nod my head.

Sometimes I wish my expectations weren’t there. And though I’m thankful for the memories that accompany them, I wish I didn’t have nine years’ worth of dreams for my girl. But I do. And though she’s still here — something I celebrate every day — I mourn the loss of those dreams. And though it’s with shame I say it, I loathe that I will never know what could have been.

In my lamenting, it struck me. Though the doctor said “We aren’t there, yet” somewhere in two years’ time something changed. It wasn’t a conscious thing, but I stopped believing my Gracie Girl would do great things. I stopped seeing her future, and started seeing the limitations of her disease, autoimmune encephalitis. And it’s not fair, and I’m not proud of it – but it happened.

Gracie came home with me that day. And she was all smiles. The thing about her smile is no matter the kind of day you’re having, when she smiles, you’ll smile too. And that joy — HER joy — is this amazing gift. She’s lost so much, but it’s still there. Her laugh. A full belly laugh that makes you laugh.

It doesn’t make the pain go away. And sometimes it’s not even enough to touch it. But when she laughs, you know her illness doesn’t define her. And that IS a big thing.

Autoimmune encephalitis is an illness that causes the body to attack the brain. It’s taken her words, mobility and coordination, but not her spirit.

This isn’t what I planned. And whether it’s okay or not, I grieve all the “normal things” she may never do. But that is my own shortcoming. My girl was always destined for great things. And redefining the face of illness was her first.