The 3 Words I Want Every Single Hospital Employee to Hear

As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.

| 5 min read
Elise Free

A Letter to My Daughter's Health Care 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 13 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.

Dear Phlebotomist,

The reason Addie's screaming and holding onto me before her blood draw is not because she's a bratty preteen who can't handle a little pain.

It's because during the last draw, the nurse couldn't find the vein and being pricked in both arms, three veins, and held down by aides 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 a size 7. It may be a tight squeeze.

Dear On-Call Pediatrician,

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.

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 medical 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)

Previously published on The Mighty. Join the conversation on Facebook.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Elise is a contributor on What the Flicka?, Scary Mommy, The Mighty and Mamalode, and has had essays featured in Los Angeles Parent Magazine, Literary Mama Magazine, and on KPFK's radio program, Motherhood Unplugged. She currently lives in Iowa with her teenage daughter, Adelaide, who's thriving and living life to its fullest and funniest, despite having cystic fibrosis.

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