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The 3 Words I Want Every Single Hospital Employee to Hear

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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.

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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)

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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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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

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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.

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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

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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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

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New OneRepublic Music Video Captures What It's Like to Live With a Life-Threatening Disease

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This may be the most powerful music video we’ve seen all year.

To illustrate OneRepublic’s new single, “I Lived,” the band enlisted Bryan Warnecke, a 15-year-old from Castle Rock, Colorado, who has cystic fibrosis. The teen’s been in the news before for his hockey success and fundraising efforts. In the video, he shows us the ups and downs of living with CF.

Cystic fibrosis is an inherited disease that most commonly affects the lungs and digestive systems. The average lifespan of someone with the condition is about 37 years old, according to the U.S. National Library of Medicine.

“I want to make the most out of my life and have as much fun as I possibly can,” Bryan says in the music video. “And my biggest fear is not being able to do that.”

Watch above, as Bryan gives an inside look at his life with cystic fibrosis. Powerful may actually be an understatement. 

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Beautiful Portraits Show Cystic Fibrosis Is Not Just a Childhood Disease

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Ian Pettigrew sometimes thinks of himself as an interloper.

The portrait and fashion photographer based in Hamilton, Ontario, is a 45-year-old with cystic fibrosis (CF), a disease with a life expectancy of about 40, according to The CF Foundation Patient Registry. His symptoms are relatively mild, though, and he wasn’t diagnosed until he was 38.

“I follow many people [with CF] on Facebook and any problems I am having really pale in comparison,” Pettigrew told The Mighty in an email. So, as someone with relative health and a talent for photography, he felt an obligation to help raise CF awareness, particularly for adults with the disease.

“The general public regards CF as a ‘childhood’ thing,” Pettigrew told The Mighty. “It is also a disease where you don’t necessarily look ill.”

To change this, Pettigrew began a portrait series called “Just Breathe,” where adults with CF pose and then write about the unique experiences they have with the disease. Pettigrew says he knows a cure won’t come from his project, but he hopes it will inspire someone to sign up to be an organ donor.

“Probably a good 25 percent of the people that have reached out to me wanting to be part of this project are waiting for new lungs,” Pettigrew told The Mighty. “I am really doing this project to give those people more of a voice.”

So far, Pettigrew has only photographed a few subjects, but he has requests from all over the world. He’s focused on raising funds so he can travel to interview and photograph these people and eventually publish a book of the portraits. To follow his work, visit his website.

“CF hasn’t brought anything positive. It’s been shit. But… I think I can make a positive difference to other people’s lives. If maybe one person gets saved because this book influenced someone to sign their donor card that would qualify as uplifting.” — Ian Pettigrew

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“My double-lung transplant has given me a second chance to appreciate all that life has to offer.” — James, age 34

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Jeff, age 52 [Interview pending]

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If you’d like to make a donation to Pettigrew’s project, head here.

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