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To the Substitute School Nurse Who 'Got' My Daughter’s Diagnosis

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maddie with fake glasses on

My morning routine is pretty much the same as any mom’s. Sometimes I feel like I mostly stand at the front door, car keys in hand, yelling “Shoes! Teeth! Homework! Now!” But because my youngest child has pulmonary hypertension, there are a few extra steps to get us out the door: I have to be sure Maddie has taken all her morning medications and we have to pack the meds she will take to school.

I know how fortunate we are. Maddie’s older sister had pulmonary hypertension and she never came home from the hospital. PH is a rare disease, more rare in children, and even more rare when doctors can’t determine a cause. “Ideopathic” is the medical term for “Uh… yeah, we have no clue.” PH is a diagnosis only given after the nurses move you from the waiting room to the conference room with the white board and the very serious specialists.

I hold in my heart that everything Maddie does is something we were told she might not. When she first weaned off the ECMO machine that had been supporting her for her first week of life and we dared think she might survive, a resident told us, “This is probably just a ‘honeymoon period.’” Thanks, Doctor.

Will she walk? Feed herself? Speak? Read? Check, Check, Check and Check. Take that, Dr. Honeymoon.

Looking at her now, in her T-Ball uniform, or playing video games with her brother, or riding the bike she insisted no longer needed training wheels, it is possible to forget — just for a moment — that she is not well. That she has a progressive disease. That we are in a race with time. That the meds she takes every few hours, every single day, buy her more time.. .but will they buy her enough? Because she looks “healthy.”

I don’t want people to think Maddie is sick… but at the same time, I just want people to acknowledge that she may not be perfectly well. Doesn’t that sound bizarre?

“No,” I will tell people, when they ask. “Pulmonary hypertension isn’t ‘just like asthma.’”

They will look confused.

“No,” I will tell people. “We don’t expect her ‘grow out of it.’”

They will look panicked. The panic usually makes me rush in to minimize, “But, it’s well controlled with meds and researchers are looking for a cure…”

They will look relieved. Like I said, she’s not “sick,” but she not well either.

My mother used to have a refrigerator magnet that said, “Be like a duck: calm on the surface but paddling like crazy under the water.” I often think Maddie is just like that duck. She looks awesome, but underneath, her heart and her lungs are paddling to keep up. To do what most kids do without breaking a sweat.

Maddie takes an inhaled medicine called Tyvaso every four hours while she’s awake. We get a 28-day supply of liquid ampules metered out in single-day doses and a laptop-sized bag of supplies that have to be mixed every day. Since she needs the medication during the day, she has to take the bag to school so she can take her breaths before lunch.

Because of school rules about kids and medications, I have to bring the bag in every day and give it to the nurse. Just before school lets out each day, I go back to the nurse and pick up the bag. I used to work in the city; but now I work from home. I am always “on call.” Our family life is a lot like my mother’s duck magnet.

Which brings me to you, Substitute School Nurse.

When I saw you were subbing for Nurse Kristina this morning and I didn’t recognize you as a regular sub, I started in on my little speech/device set up, “My daughter has pulmonary hypertension, and…”

I stopped cold. Behind the standard concern in your eyes I saw a flash of raw emotion.

I kept going, my voice shifting back and forth between minimizing, and pay-attention-because-this-is-important-izing: “It’s well controlled, she just needs to do three breaths from the machine before lunch… l’ll set it up for you, it’s easy to do, but if you have any problems, please call immediately and I’ll come down.”

As I started to leave, you said, “My best friend in high school died from pulmonary hypertension. I didn’t know there were treatments like this…” You trailed off.

“Oh,” I said. “I’m so sorry. This is a new treatment.” Even though I don’t think it’s really true, I said, “It helps a lot.”

We stood there for a minute, just kind of looking at each other. You knew. You understood. Maddie isn’t sick. But she isn’t well either.

And just like that, the moment passed. Two second-graders walked in looking for Band-Aids. I remembered my car was double-parked. But thank you for making me feel understood. You could see me paddling under the water.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 18, 2016
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