Sharing Care: teaching children with CF the "cuff cough"

Maria and Nick share valuable insight about cystic fibrosis and the book they wrote together "The Adventures of Miss Messy Suzie McGoo and The Cuff Cough Crew" to help children with the disease.

Transcript

00:00

[LIGHT MUSIC] CF is like a poker hand, OK? You can make a winning hand out of what you have.

00:09

[LIGHT MUSIC]

00:18

I got diagnosed with cystic fibrosis when I was three months old. The things that impressed me about Nick and his cystic fibrosis journey is Nick is relentless.

00:27

And no matter what comes at Nick, he is relentlessly passionate about every breath he takes in life.

00:33

I have never-- let me stress-- I have never in my entire life met someone who cares for everyone the way

00:43

this woman does. She gives everything she has to the human experience.

00:49

It's infectious. You can make it one of the characters look like Shell in the next one. Like--

00:55

The book is called "Miss Messy Suzie McGoo and the Cuff Cough Crew." And the cuff cough is a very, very difficult therapy

01:03

for young kids to learn. You breathe in, you hold, you blow. [BLOWS AND WHEEZES] And then you hear that wheeze.

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That's the idea of starting to force those lungs to really work harder and move some of that mucus.

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You want to make habits at younger ages so you don't get noncompliant adults. It's the "now what" factor. This is the hand that you were given.

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This is how you feel. Now, what do we do now? There's a large concept that we really try to focus on to help children cope with CF.

01:32

And that is you have cystic fibrosis and cystic fibrosis doesn't have you. So we take the power away from disease

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and give it back to the child. It's not this black cloud that is kind of following you along.

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Easily, it can fall into that category. And the way we see life is kind of the way we live it.

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And for parents, it's do not-- do not limit your child. Man, that's a good answer.

01:59

I don't even know if I want to follow that. My goodness. So I'm going to add my two cents, because she said-- she took the other eight cents I had.

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So for me, the advice I would give is understand that it is your job as a parent

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to bear the responsibility and shoulder the burden of their disease.

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You know, one of the greatest things my parents did is I never knew I was sick. I never-- I had open heart surgery, I never knew.

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I remember nothing but happiness. I didn't find out till later, my parents were screening people at the door that they had to smile when they got in my room.

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They got to cry in the hallway, but I never saw it. If you let your child know they're sick, they're going to feel sick.

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But if you bear that shoulder, like, hey, you're OK, then they will believe they're and feel they're OK. The mentality is the one thing about this disease

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you can control. You may not be able to control your progression, your lung function, your liver, whatever it

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is, because CF affects it all. You may not control that. But the one thing you can control is how you view this disease and how you choose to attack it.