I’m Scared She’ll Live

The year we expected Annie to arrive,  medical journals reported that someone with hypoplastic left heart syndrome had a 70% chance of making it to their first birthday . The diagnosis also gave someone roughly a 30% chance of making it to their fifth birthday.

Last Sunday, Annie sat at the kitchen table mindlessly eating her sausage biscuit. When Matt handed her the spoon of morning meds hidden in a glob of garlic hummus, she broke into tears.

Morning meds are nothing new. Scoops of hummus are nothing new. And we’ve even had plenty of tears shed over four innocent little tablets.

That day was different though. For the first time her tears didn’t bear defiance. Instead the tears were sad, broken-hearted drops.

I sat on the stool next to hers and put my arm around her back. “What’s wrong?” I asked. No answer. She continued to cry and pull away.

I pressed again. “What’s the matter? This is how you always take your medi.”

Scared

“But this time I’m scared,” she finally admitted. “I’m just scared!”

“That it will hurt your tummy?”  the most common unpleasantry associated with her dosage. She shook her head again and again.

She leaned in toward me. Tears still falling. “I’m just scared, okay? Scared!”

Her warmth against my side plus her brave admission of fear made my tears come. I wanted to say: I’m scared too. That they’ll upset your stomach. That you’ll have to take them for your whole entire life. That they won’t work. That they’ll bring other complications we don’t want to deal with.

I sat holding her for a while. “I know,” is all I could whisper. We both had wet cheeks and scared hearts. There was still medicine to take…but we had each other.

Then I realized that exactly what we were afraid of was something to celebrate. We were afraid that she’ll have to take her medicine for her whole entire life. That’s not scary if it’s simply one more dose.

That’s only scary if it’s foreseeable years and decades that we anticipate a medically managed life. It’s only hard to fathom when the end of taking medicine is not even in sight. It’s only frightening to picture Annie living on her own someday, hoping that she remembers to swallow the pills before her 8am class.

It’s scary because we think that she’ll LIVE!

Celebrating Fear

Saturday we celebrated her fifth birthday with 12 friends squished around a Chick-fil-A party table. Annie told me that she couldn’t eat her nuggets because the table was too crowded with people who love her.

She decided instead to make another lap around the play place: up the steps, through the tunnel, down the slide in a train of five-year-old giggling girls. Never panting. Never breathless. Smiling through every single one of the hundreds of rounds of play.

Annie continues to outlive every prognosis she’s ever received. We moved to Philly thinking she’d be sick. Thinking she’d need more regular care. Thinking her days might become more numbered.

Instead she’s living up life crowded tightly by people who love her. Scared that her regular days are so numerous ahead that doesn’t want to be bothered by the annoying routine of morning medicine.

Keep living, my girl. Keep fighting, dear one. Keep facing your fears and counting your days ahead! I’ll be right here beside you afraid of and fighting for each one.

Happy 5th Birthday, Annie.

And to our friends whose lives felt much too short, we remember: Oliver, Jenna Jean, Tahlia, Alayna, Boston, Hayden, Stephen. And many more. We’ll always remember.

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