Why I Celebrate My Son’s CF Milestones

You may be surprised to learn that this year, my husband and I celebrated the two-year anniversary of our son's CF diagnosis. How is it possible to celebrate a day that brings me so much pain to remember, you might ask? Because it's a milestone.

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Erin Taylor
Erin-Taylor-Levi-Balloons

I will never forget the day my son Levi was diagnosed with cystic fibrosis. After spending two weeks sick with fear after his newborn screening came back with elevated immunoreactive trypsinogent (IRT) levels, the direction that my life would take came down to a phone call.

We had stopped off at the store to get Band-Aids® for Levi's tiny, 3-week-old arms, which had blistered after his sweat test that morning. We had just walked in the door when the phone rang.

“Is this Levi's mom?” the doctor asked as I punched in the code to our alarm.

“Yes,” I said and held my breath.

“I'm calling to let you know that we got the results from Levi's sweat test and it came back … ”

“Negative,” I willed her to say. “The test came back negative.” I would hang up the phone, cry tears of relief and move on with being a new mom. This had to be a blip in our lives; something we would always look back on and thank God that it hadn't happened to us. This couldn't really happen to us.

But as you already know, she didn't tell me the test was negative.

What happened next was a five-hour blur that included heading back to Vanderbilt Children's Hospital to learn about cystic fibrosis and how our lives would change from there on out.

We brought Levi home along with a manual about CF and a small “thumper,” with orders to begin chest physical therapy (CPT) and to come back next week. 

That was March 11, 2014, and one of the worst days of my life.

You may be surprised to learn that this year, my husband, Ron, and I celebrated the two-year anniversary of Levi's diagnosis. How is it possible to celebrate a day that brings me so much pain to remember, you might ask? Because it's a milestone.

Erin-Taylor-Levi-Balloons
We are big believers in celebration.

 

On March 11, 2016, we celebrated two years of being “admission-free;” two years of not coming close to a hospital stay; two years of having a kid who's -- honestly -- been healthier than your average toddler. Since the day of his diagnosis, I can count the number of colds he has had on one hand. He is a happy, healthy, very active little boy who loves music, the park and Peppa Pig, and we are stronger, wiser parents than we were the day of that phone call. 

Having a child with cystic fibrosis has forced me to be an optimist -- something that's not natural for my hypochondriac, obsessive self, but something that's been vital for our family's happiness.

And so we choose to celebrate the milestones, not only in our lives, but also in the CF community.

When Orkambi® was approved by the Food and Drug Administration (FDA), we bought a bottle of champagne.

When we received positive news after a particularly stressful CF clinic, we took Levi to lunch and went shopping for a new toy.

When we raised more than $8,000 for our Great Strides team last year, I had the word “breathe” tattooed on my wrist. 

When Levi received his airway clearance vest a few months ago, we posted pictures and videos like the proud parents that we are and celebrated with ice cream.

Erin-Taylor-Levi-Vest-Measurement
A proud moment for our family was when Levi measured big enough for his vest.

 

When we hit the two-year anniversary of Levi's diagnosis, we cried, we hugged and we allowed ourselves to be proud of the fight we have fought for the last 24 months.

I definitely have my moments and my setbacks. CF is scary and overwhelming, but it doesn't do me any good to dwell on the things I can't control. Instead, I choose to be positive and look forward to the future rather than fear it. I choose to be happy.

We still have a lot of milestones to achieve for the CF community, and when we do, I'll be on hand with the champagne and ice cream.

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Originally from Nebraska, Erin lives in Nashville, Tenn., where she enjoys staying active and busy with her son Levi, daughter Carolina, and husband Ron. Erin works full-time in corporate communications in addition to writing on a freelance basis. She is passionate about CF advocacy and awareness, participating in year-round fundraising for the CF Foundation, and is a member of Community Voice. In their free time, Erin and her family love traveling, sporting events, and spending time outdoors, all while fitting in her children's daily CF treatments.

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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.