Finding My CF Mom Tribe

After my son was diagnosed with cystic fibrosis, I knew that I wanted to connect with other CF families. Fortunately, I've been able to find a group of moms who understand what my life is like and help me cope.

| 4 min read
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Rachael Havey
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When our son, Dean, was diagnosed with cystic fibrosis shortly after he was born, my husband and I wanted to connect with other CF families. Our care center encouraged us to reach out to our local CF Foundation chapter. The chapter put us in touch with a couple who, at that time, had a 5-year-old with CF and were expecting their second child. It felt so good to talk to people we could relate to -- who understood the disease, who had a child like our Dean, and who were living and not just surviving. 

Don't get me wrong -- we have an extremely supportive family and network of friends we can count on for anything at any time. I would be lost without this network; yet, I knew that I needed to connect with people who lived CF every day and really knew what it was like to be a CF parent. I needed people who lived my life and understood. 

I am happy to say that I have gotten that and so much more.

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When I think back on the last seven-ish years, I am overwhelmed by the stories I have heard, the people I have met, and the love we have received from our CF community. It began when the couple we met through our local chapter invited us to a fundraiser, which led to many more events and many more introductions. Ultimately, it led to more people I can count on and turn to when I need it most.

These people -- or my CF mom tribe as I like to call them -- have done a lot of things in our area to make sure our moms and families stay connected. We attend our clinic's family days and parent nights. We go to information sessions and meet-and-greets hosted by our local chapter, as well as family-hosted events. We check in with each other. We leave our husbands at home and attend events together or send out an open call for a “Moms' Night Out.” 

I have had the privilege of attending a wedding of one of my treasured mom's children with CF. Each spring, I host a fashion show fundraiser where I have between five and 10 moms who show up and strut their stuff to help me raise money for CF

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I have CF mom friends who have tiny ones, toddlers, kids in elementary school, teenagers, and adult children with CF. Some of these children have been super healthy, and some have had frequent hospitalizations. We share our stories. We offer support. We listen. We console. We show up at the hospital with wine. We understand. And, we don't just talk about CF. We talk about life and family and accomplishments and failures. 

Any of these moms I could count on for love, help, and support at any time. However, I find myself lucky enough to have two CF moms whom I would be lost without. The three of us have a text thread that never ends. We literally “talk” daily -- again, not just about CF, but about life. We share too much probably, but they are my people. I know that if something comes up with Dean, I can call or text them at any time of day and I will get a response, and I would do the same for them.

The CF moms in my life help me cope. They allow me to feel the bad days and encourage me to savor the good.
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Reaching out to our local chapter after our son's diagnosis was one of the best decisions we have made when it comes to dealing with CF. I don't know what I would do without my “CF Mamas” and the CF family we have built. They are part of who we are now, and I am beyond thankful we have them.

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Rachael is the mother of her daughter, Renley, and her son, Dean, who was born with cystic fibrosis. A graduate of Indiana University and University of Indianapolis, she now works for AdvancED - Measured Progress, a non-profit education organization where she provides support and professional learning to school and system leaders. Rachael and her husband, Matt, are very involved with the Indiana chapter of the CF Foundation. Matt is a member of the Indiana chapter's board, while Rachael volunteers at events and has been the chair of Indiana's Cycle for Life since the first ride in 2013. Rachael is also a member of the Foundation's Community Voice Editorial Board, Research Voice, and participates in a variety of advocacy efforts. Rachael and her family live in Indianapolis. You can contact her at rachael.havey@gmail.com or @RachaelHavey on Twitter.

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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.