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


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 [email protected] 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.

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Striking Photos Prove This Life-Threatening Disease Is Not a 'Childhood Thing'


Ian Pettigrew knows cystic fibrosis isn’t a “childhood thing.” He’s 46 and living with the life-threatening genetic disease. In the 1950s, children with CF were not expected to live long enough to attend elementary school, according to the Cystic Fibrosis Foundation. Today, nearly half of the CF population is age 18 or older, and adults are living into their 40s.

Around a year ago, Pettigrew, a portrait and fashion photographer from Hamilton, Ontario, set out to photograph fellow adults with CF. Six thousand miles, 25 cities and 92 subjects later, he published “Just Breathe,” now offered in clinics and doctors offices all over North America. Pettigrew, who experiences less severe symptoms and was not diagnosed until age 38, wanted to give hope to kids and teens with CF who face scary expectancy statistics.

“One of the goals of this project was for younger people with CF to see the portraits and know there is future for them,” Pettigrew told The Mighty in an email. “Yes, there are varying degrees and not all CFers are alike. But with the advances in treatment, proper nutrition and exercise, it is a far brighter future than even just 10-15 years ago.”

young woman smiling at camera
Ian Pettigrew Photography
young man smiling at camera
Ian Pettigrew Photography

Pettigrew told The Mighty the response to the book has been almost overwhelming.

“People message me and say the book has changed their lives,” he said. “It’s been humbling.”

He hopes, for those unfamiliar with CF, the portraits will raise awareness about a chronic disease that affects about 30,000 people in the U.S. and 70,000 people worldwide. People with CF inherit a gene that causes thick mucus in the lungs, pancreas and other organs and often results in symptoms like persistent lung infections, shortness of breath, coughing and salty-tasting skin.

“People still have to realize this is a fatal, life-shortening disease,” Pettigrew told The Mighty. “[CF] is brutal and heartbreaking. But there’s a sense of hope and optimism as well.”

man smiling at camera
Ian Pettigrew Photography
woman smiling at camera
Ian Pettigrew Photography
older man smiling at camera
Ian Pettigrew Photography
man smiling at camera
Ian Pettigrew Photography
man smiling at camera
Ian Pettigrew Photography
woman smiling at camera
Ian Pettigrew Photography
man smiling at camera
Ian Pettigrew Photography
man looking at camera
Ian Pettigrew Photography

Pettigrew is now focused on his second book, “Salty Girls,” which will feature adult women with CF. So far, he’s photographed 56 subjects. The project came to life after Pettigrew saw two models — one with Crohn’s disease in a bikini and displaying her colostomy bag and another with vitiligo, a skin condition, being interviewed by Tyra Banks. “I just thought, well, it’s time for a model with CF!” Pettigrew wrote on his website. “[The second project is] dedicated to showing how beautiful those fighting CF truly are… These women are inspirational and fearless, and we want to show hope for those younger CFers.”

woman with scars on her stomach staring at camera
Ian Pettigrew Photography
woman with scars and bandages smiling at camera
Ian Pettigrew Photography
woman looking at camera
Ian Pettigrew Photography
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Ian Pettigrew Photography
emily
Ian Pettigrew Photography
kristen
Ian Pettigrew Photography

To view more from “Salty Girls,” head here. If you’d like to contribute to Salty Girls’ Kickstarter campaign, head here. To purchase “Just Breathe,” head here.

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The 3 Words I Want Every Single Hospital Employee to Hear


A Letter to My Daughter’s Healthcare Team:

Dear Doctor,

To you, Addie is a patient. But she is my baby. You don’t know this, but she has spent the last nine years enduring medical procedures, appointments and hospitalizations. When she sees you, all of those memories come with her. Your white coat is a symbol of blood draws, x-rays, pokes and prods. Please don’t take it personally if she gives you the stink-eye. I’m sure without the white coat, she’d love you.

Dear Nurse,

When I ask question after question about a medication or procedure, it is not because I’m a pain-in-the-butt mom, it is because I’m exhausted and if I don’t write everything down, in 10 minutes that knowledge will have slipped into the black hole of pharmaceutical names, insurance info and commercial jingles from the 1980s. Please be patient with me. I don’t want to mess this up. A little life is at stake.

author's daughter showing IV injections on arms

Dear Phlebotomist,

The reason Addie’s screaming and holding onto me before her blood draw is not because she’s a bratty 9-year-old who can’t handle a little pain.

It’s because during the last draw, the nurse couldn’t find the vein and after both arms, three veins and being held down by aides, this is what she remembers as you come at her with a needle.

You are just an accumulation. Please don’t take it personally.

Your eye rolls and sighs, I understand. I do. I would feel the same way if I didn’t live it, if this were just another screaming kid of hundreds. Please try to put yourself in her little shoes. They are size 4 and a half. It may be a tight squeeze.

Dear Pediatrician on-call,

When I phone on a Friday at 5:01 p.m. it is not because I waited until the last minute; it is because my kiddo’s fever only spikes at closing time. She was born on a full moon when all hospital beds were full and almost delivered in the hallway. It’s just how we roll. I apologize. I would have loved the birthing suite and some pain meds.

Dear Pharmacist,

When we call in a prescription for a medication we’ve already run out of, it is not because I want to create an emergency for you. It is because this medication is one of 20, from four different specialized pharmacies and sometimes I cannot keep it all together. And if I am crabby and panicked, it is not because I’m unappreciative of your hard work; it is because I am mad at myself for not being the mom I would like to be. Please forgive me.

Dear Pulmonologist, Endocrinologist and Respiratory Therapist,

When we receive bad news from a blood test or culture, I realize you have already given this news to 10 other people before 9 a.m. But it means our life changes from this point on. We have come this far, learned this much and you are giving us new information. You are saying, here is another chapter in this lengthy book. Please study, memorize and perfect this. Sometimes it feels like too much. Yes they’re only lab results, but to us, they’re life results.

little girl with hospital mask on

Dear Staff,

If I could tell you one thing, to newbies and old hats and everyone in between, it is this:

Please just listen.

You have the answers, but sometimes they are given before you know the question.

Just listen. 

I am not challenging you. But I know my kid. We live this life, we wake up to it and go to bed with it. This disease is like another child in our family. It’s ours. We birthed it, we feed it, we care for it.

I have not endured 12 years of medical school and residencies, but I have paid attention to every breath and heartbeat, to each slight fluctuation—knowing like a sixth sense that warm breeze before the storm. Like memorizing the rhythm of a song, you don’t need to be a composer to know when the melody is off-key.

Dear Hospital,

After a year of chronic stomach pain, and no relief, I called you for the hundredth time. A Gastroenterologist new to the hospital returned my call. I was exhausted from medications not helping and begged for answers. Her response left me speechless.

“You know your daughter. Tell me what to do.”

At first, I was terrified. What do you mean, tell you what to do? Aren’t you the doctor? I don’t want this power. Here, take it back!

This doctor explained she was also a mother. She asked me what I felt in my gut. I ignored my impulse to make a pun (GI, gut, ha!), mustered up my courage and said, “I want her admitted today. And I don’t want to go home until she’s better.”

And that’s what we did. Two days letter, she was better. And we went home.

This doctor not only listened, but she trusted me. She knew about the course not taught in med school or learned in residency. It is the quiet pause of a song, a flutter of a heartbeat, a mother’s intuition. Just listen and you can hear it. Let’s listen together.

With love,
Elise Free (mama to the amazing Adelaide)

author's daughter close up

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

When an 8-Year-Old at the Hospital Reminded Me I'm Not Alone


I was hospitalized not that long ago for another one of my famous chest infections. I was super down about everything because this was right before my final exams, and I had papers up to my eyes.

One day I took a walk around the hospital. I thought nothing too interesting was going to happen. But then, a little boy in cafeteria asked what the thing in my neck was. (I don’t breath in my sleep, so I have a tracheostomy to assist with that issue.) I heard this and went over and asked him if he wanted to know, and he said yes. I gave him the quick and easy version of what’s wrong with me.

At first glance I thought he had cancer. But he had cystic fibrosis. He was only 8 years old and had a chest infection hitting him as hard as mine was hitting me. We hit it off immediately. I still firmly believe he was just impressed that he met someone else whose lungs were not behaving properly. We talked a lot about things that only people who have been sick their whole lives would understand. Hospitals, IV lines, doctors and the Children’s Wish Foundation.

Our attempts at being normal were obvious. I’m a second-year university student who’s unable to move out of her parents’ house. I have more medical equipment than clothing. He’s only 8, so there’s a good chance that he doesn’t even know his life isn’t normal.

At one point he asked me if I was on pediatric floor like he was, and I told him no. When I told him I was on the sixth floor, his eyes got ridiculously large. He said, in all seriousness, “Is it scary up there?” I was laughing so hard. I had to pull myself together and say, “No, it’s just grandpas up there.”

Sometimes being lifted up comes in the strangest forms and in the most unlikely places. To someone who is different, being reminded they’re aren’t alone is everything. That one similarity, that one thing the two of you have experienced that no one else has, can bring you closer then you ever thought possible. That was the case, at least, for a 20 year old with congenital central hypoventilation syndrome (CCHS) and an 8-year-old with cystic fibrosis.

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Why This Woman Couldn't Keep Her Cystic Fibrosis a Secret Any Longer.


After watching one too many videos of people in need of lung transplants, 23-year-old Christina Davidson called her mom with an idea.

It was 3:30 in the morning, but Christina’s mother came over right away and helped her daughter create the powerful video below. In it, Christina shares her own story with the world through handwritten signs.

“I have cystic fibrosis,” one of the first signs reads. “My parents and I kept it a secret for most of my life. I wanted to feel ‘normal.’”

Before Davidson, who lives in Nashville, posted the video on her Facebook page, few people knew about her disorder, The Tennessean reported.

“I’m trying to raise awareness because one day, Facebook friends, it’s going to come down to you saving my life,” Davidson wrote in her Facebook post. “Let’s share this with everyone we know.”

Since Davidson first shared the video on December 19, it’s gotten more than 11,500,000 views. The viral response has prompted her to start the Christina Davidson Foundation, her own nonprofit.

Watch the moving video here.

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How Cystic Fibrosis Is Like Fifth Grade Math


If I could go back to the day my daughter was diagnosed with Cystic Fibrosis and give myself advice, it would be this:

Do you remember in fourth grade when your class was combined with the fifth grade, and you sat paralyzed with fear as the teacher wrote formulas resembling Egyptian hieroglyphics on the chalkboard? Nothing made sense and you were sure that, even in a year, the foreign symbols of fifth grade math would never be a language you’d understand.

Fifth grade math is Cystic Fibrosis.

Math will never be easy. Cystic Fibrosis will never be easy. But you’ll learn the language, and how to ask for help.

There will be days when you think you cannot handle one more thing, when it seems like it isn’t humanly possible to be a single parent of a kiddo with CF. You will go to bed so exhausted you cannot imagine waking up and doing it all over again. But you will wake up and do it all over again. You will advocate and double check every prescription and talk on the phone to insurance reps who don’t care about your child, and you will have to make them care about your child so lifesaving medications are approved. You will learn the language of PFT’s and FEV 1’s and pancreatic insufficiency, and you will hear your child use this language with doctors and discuss medical procedures no 9-year-old should know about.

Those are just some days.

Most days will be filled with gratitude as you watch your daughter swim, play soccer, surf and hike mountains. You will watch this little person made wise right before your eyes as she manages treatments, meds and doctor appointments with Girl Scout meetings and playdates. You’ll read every Ramona Quimby book together, snorkel in Hawaii and ride hundreds of miles on Iowa bike trails. Every day you will laugh at something she says. You will be blown away by her wittiness, strength and intelligence. CF will become a part of your life but not your entire life. The shock of diagnosis will become less with each year — the hieroglyphics on the wall, easier to understand.

Some days you will not be up for the challenge. Forgive yourself. You’re not always going to get an A. This diagnosis didn’t come with a handbook. You will have to write your own. And with the help of family and friends and a supportive CF community, you will.

CF was not what you chose. If you could take this diagnosis away, you would choose fourth grade math any day. We all would.

But this is the test you’ve been studying for your whole life — how to love. And that’s as easy as 1, 2, 3.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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