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How My Daughter's Diagnosis of Cystic Fibrosis Is Like a Ticking Clock

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One month; 30 days; 720 hours.

Imagine you had to spend one month a year — two hours a day — strapped to machines and inhalation devices to keep yourself healthy and cleaning and maintaining those devices so they are ready for the next time, all so you can breathe.


Most of us take it for granted, without even thinking about it, it comes so easily to us.

I never really gave it a second thought.

When my husband and I were daydreaming about our second child — our little spitfire, Madelynn, I thought our biggest problems were going to be balancing the challenges of caring for a newborn along with keeping her sweet, older brother happy. I pictured laundry overflowing, peanut butter smeared everywhere, resigned to the fact that for a few years, everything in the house was just going to be sticky, but doggone it, we would be so happy!

But on the day we got the call — when she was a mere 7 days old — that her newborn screen was flagged for possible cystic fibrosis (CF), something was set in motion that became so much more.

As her mother, I feel as if cystic fibrosis steals time.

Not just that it is a terminal, life-shortening disease — we do our best not even to think about that… 
but every day it steals those two hours and more.

Time for several doctor visits.

Lots of tests.

Quality time that could be spent at a playground is spent holding a screaming newborn baby during blood draws and sweat tests, trying to show her what bravery looks like while a little piece of you dies inside.

Time that you would love to have to yourself is spent meeting new doctors; specialists who poke and prod, examine and swab her throat to see what fun new culture she’ll grow.

Lots of time was spent on trial and error to figure out how to get her to take her pancreatic enzymes before every feed. While she swallows them like a champ now, since age 1, I remember asking the doctor how long she would need to be taking these enzymes, “a week? a few months?” And his answer was, “Well, forever.”

Soon, we added nebulizers, and this sci-fi straight jacket device that shakes her 14 times a second to loosen up her mucus and clear her airways so she can breathe easier.

Sounds like a great concept but go ahead and explain it to a 1-year-old!

We did our best to get it done, if we could get it done at all, giving up well over an hour or more twice a day (three to four times a day when she’s sick) for something that now takes “only” 40 minutes.

Tick tock…
 the calendar keeps on flippin.

Then there’s the cleaning of everything. It all must be cleaned and sterilized. Everything. After every use. Bacteria is present everywhere.
 Most of it isn’t harmful to you and me, but it is to someone with CF. These bacteria can be found in water, such as lakes and hot tubs, water fountains and dirt.

Dirt! It’s everywhere!

The fear of our daughter contracting these bacteria, which can then live inside her lungs with all of that extra mucus and thrive and make her sicker and struggling to breathe… that fear in my heart is a never-ending, a gut-wrenching burn.

But how do you not let your little child enjoy life because it could harm them? If you force them to live in a bubble, how is that a life?

So you just have to adjust, and this is our struggle, every day.

You miss the birthday party, because she needs to get that treatment done.

You decline the evening out with friends, because how do you expect a babysitter to be a part-time respiratory therapist?

Before you make any plans, you as a family, make sure that she won’t miss her airway clearance.

So you do your best, and you pray for all the people who go to work every day, working toward another breakthrough that will open doors towards new treatments.

I invite you to imagine someone that you love and care for — the kid next door, a niece or nephew, younger sibling, your son or daughter, someone that you would do just about anything for — imagine them losing out on all that precious time every year, and how angry and frustrated that would make you, because I don’t mind telling you it really pisses me off.

So thank you to each and every one of our people who fundraise and spread awareness. We are truly blessed to have all of you on board in this effort to raise money for research toward a cure. Toward longer lives for these patients. Toward getting that lost month per year back.

Follow this journey at Jaunty, With a Side of Doubt.

Getty image by amoklv

Originally published: July 4, 2018
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