Finding Your CF Community

For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.  

| 6 min read
Amanda Walker Headshot
Amanda Walker
Amanda-Walker-Kids-Featured-Rectangle

When our newborn son, Emmett, was diagnosed with cystic fibrosis in August 2016, it felt like an isolating time. I was Googling anything and everything that had to do with CF, desperately trying to find answers to the questions reeling in my mind. After having two healthy girls, our son was born and needed emergency surgery for meconium ileus; it was quite. the shock. While he was recovering in the neonatal intensive care unit (NICU), I would look around at the babies and parents and think to myself, “These babies have issues, but this will not be a lifelong journey for them like it will be for Emmett.” Sure, other parents that my husband and I knew had babies that had been in the NICU, but the situation just wasn't the same.

Amanda-Walker-Son-Emmett-Rectangle
My son Emmett

 

One day, my good friend Rebecca came to visit Emmett and me in the NICU, and she mentioned her friend Natalie Church had a daughter with CF. Natalie reached out to me, and it took me a couple months to get back to her because Emmett needed another surgery to clear a liver obstruction (thanks CF!) when he was 2 months old.

When Emmett was 3 months old, I got to have my first lunch with Natalie. It was incredible just. to sit down face-to-face with someone who truly had been in my shoes and was walking the same path. Her daughter, who was elementary age at the time, was (and still is) absolutely thriving. That lunch with Natalie meant the world to me (and all the others after that -- more on that later).

She calmed my fears, and she talked through every question I brought up. I left that day feeling this sense of ... “Maybe everything will really be all right.” I was thankful for her wisdom and her patience.

I also feel God provided us an earlier glimpse at CF life, before Emmett was even born. Years ago when my husband was a youth minister, he had a boy in his youth group who had CF. We had no idea until he was older, and he told us (on his wedding day of all days) why he wasn't feeling well. I had never even heard of CF until he told us that he had it. Fast forward to Emmett being diagnosed and I relive that moment of him telling us he had CF. I feel God gave us that moment to give us hope for the future. During our first Cystic Fibrosis Foundation Great Strides walk the year after Emmett was born, that boy's mom came up to me and gave the biggest hug, which made me cry. She told me everything was going to be OK.

Amanda-Walker-Natalie-And-Her-Daughter-Rectangle
Natalie and her daughter

Moms raising children with CF have a job like no one else. There are relentless treatments, medicine schedules, clinic appointments, etc. But more than that, it's the anxiety and worry of always wanting to make sure you are doing what is best for your child. I found so much comfort in having other friends who had children with CF. It was Natalie who invited me to CF Foundation lunches with other parents and introduced me to a bunch of amazing parent rock stars.

My last lunch with Natalie was in March, right before COVID-19 hit and shut everything down. We were there with one of the directors of the Tennessee CF Chapter. We were so  excited about a new donation match and what that meant for fundraising. If I would have only known that was my last lunch with her, I would have stayed all day and gleaned every last drop of parenting knowledge from her.

Remember when I said my time with Natalie meant the world? Devastatingly, in May, Natalie suddenly passed away from a pulmonary embolism and went to be with God.

My heart, as well as the hearts of all who knew her, was absolutely crushed. The hole her loss has made in her family and in our community will never be filled. She was a pillar in our local CF community. She was an incredible wife and mom.

I never thought March would be our last time together. I will forever be thankful for the way she took me under her wing these last four years, showing me how to be strong and how to advocate for Emmett. She taught me that moms who have children with CF need each other. Not many others can relate to the up-and-down roller coaster that CF is, but Natalie did. All parents in the CF community need each other. If you are struggling on this journey, I do hope you will reach out and find another parent to support you.

To honor her life going forward I know I will try my best to help any mom in the CF community just like she mentored me. To do so is to keep her memory and legacy alive. Even if you aren't struggling, just having another person who can closely relate to what you are dealing with and going through can help you.

Recently, I was afforded the opportunity to talk with a mom of a newborn with CF. It made me think of Natalie and the way she helped me process things as a new parent in the CF world a few years go. What an honor it was to know Natalie for the short time I did. I hope I can be there for other parents just like she was for me. Reach out to those fellow parents of children with CF! We all need those connections. You never know the profound impact you are having on someone. Let's lean on each other in our CF community. Together, we are stronger.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Amanda Walker Headshot

Amanda and her husband have three kids: Presley, 9, Audrey, 6, and Emmett, 4, who has CF. Amanda grew up in Central California but has lived in Nashville for 12 years. She enjoys baking with her kids, entertaining friends and family, writing for CF-related blogs, advocating for her son, and fundraising for the CF Foundation's Tennessee Chapter. You can follow along with Emmett's journey on her Instagram.

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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.