What I Learned from a Weekend with CF Moms

My child doesn’t have Cystic Fibrosis (CF). He had a similar but different “sister” disease to CF. My son’s running diagnosis comes with a lot of unknowns. There isn’t much research, advice, or support. With a lot of convincing, a fellow CF mom invited me to a CF moms retreat one weekend recently. The Cysters Retreat is a lux weekend held in Atlanta every year focusing on connecting fellow CF moms, self-care, support, and sisterhood. And boy I felt like I didn’t belong. But what I learned was it couldn’t have been further from the truth.

When I arrived at the hotel lobby on Friday, I nervously walked up to a group of girls and basically asked them if their kids had CF. Talk about awkward. But within two seconds all three of them gave me huge hugs and we instantly became a group of four. That scene continues to play out over and over until fifteen of us stood together, like long lost sorority sisters instead of strangers.

After 72 hours with this amazing group of strong women, here’s what I learned about them, and also myself.

It’s okay not to be okay. With limited support resources and lacking those who really “get it,” it’s been hard for me on my personal journey of acceptance and healing. Being the mom of a chronically ill child changes you, no matter the diagnosis. I have amazing friends in my world who would give us anything without thinking twice. And I would have been lost long ago without them. But a hug from these women or a quick head nod was an instant connection. We laughed, we cried, we prayed. And it all was okay.

Find a balance between quality of health and quality of life. This phrase stuck with me like no other, and it came from an amazing mama to a gorgeous 25-year-old with CF. They both opened their hearts and lives to us about their struggles and triumphs with CF and to see them both standing on the right side of where we all were was so inspiring and emotional.  Ayme is a beautiful soul inside and out. She blogs here  about life with CF, but most importantly, about life. Please check her out.

I am worthy of care and friendship. Personally, I had a really hard time being with these women with my child not having CF. I felt like a fake. Even though about 80% of our symptoms and treatments overlap, it felt super awkward to me. It took everything I had to walk in that hotel on Friday and act like I “belonged.” But I walked out not only feeling connected, validated, and refreshed but with a better understanding of how our children’s diseases impact but do not define our lives. How I can be a wife, woman, friend, and mother all at once and do it with grace.

The Cysters Retreat opened my eyes to an amazing group of women. If you are a CF mom or know someone who is, please do yourself a favor and get connected to this event. Their Instagram is @cystersretreat and the event is held the last weekend of July every year. You can also follow me on Instagram if you need more info.

Find your tribe. No matter what.