Jimmy Kimmel, you got it right. As you told the story earlier this week of your son’s birth and the discovery that he has a heart defect, my mind flashed back to my daughter Annie’s birth. It’s a terrifying thing when the room fills up with doctors and nurses and equipment starts wheeling in.

Just like you, our family assumed it’d be nothing. Assumed she’d be normal. Assumed it’d be fine. But her heart… well, it wasn’t.

The day the white-coated specialist announced, “I’m sorry. Something’s wrong with your baby’s heart. She probably won’t live to be born,” was the scariest day of my life. He gave us a choice in that office, one that he said would be easy. He felt that her life would not be worth living. It wouldn’t be worth the sacrifice we would have to make.

We disagreed.

I didn’t feel brave that day, covered in cold ultrasound goop, snotty-nosed and sobbing that half of my unborn daughter’s heart was missing. But I learned that brave is doing the right thing when it doesn’t feel like it’s worth doing.

When our heartbroken baby was born four months later, the blue-gloved audience waited. She’s too purple, they said. Her blood isn’t getting enough oxygen, we heard.

So we let the med flight team tangle her up, cart her off, and fly her to Children’s Hospital in Philadelphia (CHOP) where her 5-day-old body endured a four-hour open heart surgery.

We brought her home 10 days later.

Then at 8 weeks old Annie’s heart failed. Real life screeched to a halt. We stuffed a duffle bag full of travel shampoo and clean underwear to carry on a medical jet so that we could live 31 days in the Philadelphia Ronald McDonald House.

That’s when my heart failed. I knew that I was praying to a God who could heal, but after all of my prayers, Annie was bedridden and kept alive by an IV drip of heart failure meds. That wasn’t exactly what I was praying for.

We got to come home for three short weeks, where we fought for Annie’s life with oral medicines, oxygen cannulas, and frequent checkups. Finally we made the 1,300-mile journey to Philadelphia again, complete with a midnight call to CHOP’s cardiology emergency number from our Virginia hotel room. One of us held a blue-faced, vomiting baby and the other begged for answers from a doctor still 500 miles away. We made it to CHOP and handed 3-month-old Annie over for her second open-heart surgery, a surgery we were told she had a 60 percent chance of surviving. The odds were in her favor!

She came home five days later to swim and swing and snuggle with her big sister. And to remind us that we aren’t promised tomorrow, so we live up today with gratitude and courage.

I hate it, but we’re here again. Praying her 3-year-old heart is healthy enough to face a third open heart surgery this summer. Clearly our life with Annie hasn’t been easy. It hasn’t been cheap. It hasn’t been normal. It hasn’t been neat and tidy. And of course, saving Annie’s life hasn’t been all that convenient.
But it’s been worth it. Every single second of every single heartbeat has proclaimed to a watching world that there’s something more than convenient. There’s something more than logical. There’s something more than easy.

And so Jimmy, you’re exactly right. Every day I echo your sentiment when I say to my husband, “I’m so glad we had this baby together.”

Though we would never have chosen it, my husband and I are the kind of parents who believe again every day that life is always worth it.
Jimmy, it’s an honor to be walking these halls with you.

-A Fellow Heart Parent

To follow Annie’s journey, check out Tracy’s blog Heart for Annie.

Copyright © 2017 by Tracy Lane. All rights reserved.