Getting By With a Little Help From My Friends

I depend on the medical expertise of my cystic fibrosis care team to keep my child healthy. I depend on the complementary expertise of other moms of kids with CF to help me stay emotionally healthy.

| 5 min read
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Angela Spencer
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It's due time that I give credit to the other moms of kids with cystic fibrosis that have been such an amazing resource to me in so many ways. I'd like to take a moment to share some of the countless benefits this network of women has offered me and encourage others to join.

The moms got me through the initial shock.

It was the other mothers that contacted me and were able to relate to my feelings of shock immediately after my daughter's diagnosis. I recall a fellow mom texting me early on, “I know that this is overwhelming and that you feel like crawling into a closet, curling up in a ball and crying.” She had hit the nail on the head. That was exactly how I was feeling. I felt so alone, yet, this simple text comforted me, letting me know that I wasn't the only one who felt this way, that feeling those emotions were perfectly normal, and that life would get better.

The moms have the experience.

Sure, the doctors know the medical reasons why CF affects our children, and they occasionally can give you a tip from another mom, but they don't know what it's like to live this life every day. This is where the moms come in. They have the years of hands-on experience. They know everyday life with CF. They have traveled this road longer than I have. Therefore, they are wonderful about saying, “This worked for me. Try this.” Talk to your doctor about this.” So, it's like having a behind-the-scenes pass to aspects of raising a child with CF that no doctor or book mentioned. The doctors taught me the “why,” but the moms taught me the “how.”

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The moms can relate.

Only another CF mom can truly understand how being a mother of a child with cystic fibrosis feels. It's only the other moms that understand the difficulties this life entails because, let's be honest, raising a child with CF is not an easy task. It's not easy going through the treatments, the medications, the hospital stays, the constant feeling of failure, the sleepless nights quietly crying over the likelihood that you will outlive your child. This is a tough road and only those who walk it can truly understand it. The other veteran moms have been there before and can give suggestions and advice about how to emotionally deal with the challenges we face. The moms offer me a safe haven to vent all of my feelings and for me to receive the much-needed encouragement to get me through the tough times.

The moms bring the laughter and the smiles.

The truth is that -- in the midst of all the stress, tears, frustrations, and fear -- we need to laugh occasionally. Other CF moms helped me find the small joys that are very difficult to find along this CF journey. The other CF moms are wonderful about sharing memes and inside jokes that only a CF mom would get. We share the poop stories, laugh at the strange looks we get in a restaurant when we load our toddler's fries with salt, and post adorable pictures of our CFers doing treatments. We share in the joy of our children going up in weight, learning to swallow enzymes whole, and receiving new medications. Unexpectedly, I've gained rewarding relationships that have become friendships beyond CF.

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Reach out to your local Cystic Fibrosis Foundation chapter. The chapter staff were the ones that originally put me in contact with other local moms. It's reassuring to have a fellow mom that is close by and they will help find one for you. I found social media options to be very informative and helpful. You'll be surprised at how differently CF issues are treated in other parts of the world. I certainly was. It opens an avenue to obtain a plethora of alternative tips and options on CF care to take into consideration.

To the veteran moms, a million thank-yous for being the strongest, most incredible support system to me and so many others. You've gotten me through the ups and the downs. You are my most valuable asset. You are priceless. You are my Cysterhood of Moms.

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Angela is mother to her daughter, Raelyn, who was diagnosed with cystic fibrosis at 2 weeks old. With a bachelor's degree in elementary education and passion for photography, Angela now devotes her time and efforts to volunteering for her local Cystic Fibrosis Foundation chapter. She is a member of the Northshore Great Strides committee, an advocate, fundraiser, photographer, and speaker for her local chapter. Her family serves as an ambassador family for the CF Foundation. Angela lives in Slidell, La., with Raelyn, her husband, Paul, and their dog, Delta. 

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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.