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The Phrase We Should Say Instead of ‘As Long as It’s Healthy’

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When I was pregnant, we — as in parents, friends, strangers in line at the grocery store — unanimously agreed that the gender didn’t matter, “As long as the baby is healthy.”

Older ladies would stop me in the street while I walking my dog and say, “You’re carrying high. It’s a boy, but who cares as long as it’s healthy.”

It’s something you hear like a pregnancy mantra, “It doesn’t matter if it’s a boy or a girl, if you have a vaginal birth or C-section, deliver naturally or get an epidural, as long as the baby is healthy.”

On September 8, 2005, I delivered a healthy baby girl. She was perfect and scored a 9 on the Apgar scale. The doc said she would have gotten a perfect 10, but doctors are discouraged in doling out perfect 10’s. I get it. You come out a 10 and what could you possibly have to look forward to? Who would even learn to crawl or graduate nursery school if you’re already a 10 on day one?

It was a vaginal birth delivered by a midwife without an epidural. But the only thing that mattered was I had  a healthy baby in my possession. This was the goal we’d all talked about.

I did everything my doctor told me to do. I nursed and stayed at home, I co-slept and read seven books on breastfeeding. I kid you not, seven books. My child took right to my nipple like she’d been nursing her entire life. Those seven books were a total waste of time. I could have read all the works of Dostoevsky in the time it took me to school myself in getting the perfect latch-on.

My beautiful baby, Adelaide, was perfect at her two-month checkup, gaining weight and hitting all her marks. I thought, “I got this. Motherhood ain’t so tough.”

Around three months, Addie started looking pale. She spit up — projectile, across the room spit-ups — after every meal. We took her to a specialist. They checked for pyloric stenosis, where the little valve between the stomach and small intestine never fully closes. She was fine.

But she was eating non-stop. When I called the nurse at our pediatrician’s office, she laughed me off and said all babies eat constantly. I said, “No, I mean, she eats all day long.” I was nursing my child all day long, and she pooped 12 times a day. The doc said, “All babies are different.”

I explained I had been a nanny for years and this wasn’t my first rodeo. I knew what normal was and this was not normal. But they brushed off my first-time mom fears and talked to me like I was the child.

By her fourth month, a good friend of mine called and said, “Addie doesn’t look right.” It was like being punched in the gut, confirming what I had felt, what I knew and what our doctor had ignored.

We left our pediatrician and met with a team of doctors dedicated to finding out what was behind our baby’s failure-to-thrive. Blood tests, sweat tests and stool tests confirmed it: Adelaide had cystic fibrosis (CF) — a genetic, chronic and life-threatening disease. The “median predicted age of survival for people with CF is in the early 40s,” according to the Cystic Fibrosis Foundation.

The night after she was diagnosed, I got online and read about lung transplants, liver transplants, pancreatic insufficiency, therapies and hospitalizations. What kind of life could she have? I sobbed in the shower.  When I nursed or held my girl, I looked at her face like it was the last time. I tried so hard to enjoy every moment. But each moment was excruciating.

As long as she’s healthy.

It’s what we all want. I didn’t begrudge anyone for saying it. But it’s one of those comments that hits home right in the gut. Because what happens if your child isn’t healthy? Have you let everyone down?

But “as long as” didn’t happen. We had a girl — a healthy baby girl — and then she got sick. She was always sick really, but we just didn’t know it. We did everything right, prenatal vitamins, the Bradley method. I ate healthy —albeit with some mac ‘n cheese and Ben and Jerry’s — but it didn’t matter.

“As long as they’re healthy” makes it seem like we can’t celebrate those kiddos who have an extra hurdle or two in their lives.

I wish we could change that expression to, “As long as they’re awesome.” Because my daughter is. She’s smart and funny and brings joy into the lives of everyone we know.

Her life matters, not because of her gender or Apgar rating or genetic predisposition or life expectancy, but because she’s Addie.

She makes me laugh every day. Her comedic timing is right up there with Lucille Ball. I have never met a child who waited and paused for a punchline in total deadpan. Everything she does is hard and fast — riding bikes, scooters, swimming, surfing. She is full-speed ahead. Not a second is wasted. She never thinks, “As long as.”

When I was pregnant, I prayed my baby would be healthy and took all the steps humanly possible to ensure it. But we were given a big surprise and a life beyond just choosing pink or blue for the nursery.

And even now, as hard as I fight to keep my child alive, I know that we can’t predict, in utero or in life, what we’ll get. A boy, a girl, healthy or sick. But each day is a lifetime. And we must choose to either give up or say, “I’m going to get on a bike or hike this mountain or swim this ocean because it’s here, and I am, too.”

And when it comes down to it, labels are just labels. And “as long as” is totally up to you.

author with daughter hiking

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 16, 2015
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