A special thanks to guest blogger, Lauren Gibbs.
Waiting anxiously for a call back from the nurse. Boiling nebulizers late at night. Starting the day early so breathing treatments are finished before rushing out the door. Tossing and turning because you know tomorrow is clinic – a nearly four hour ordeal not including the three hour round-trip drive. These are just some of the struggles moms face when their child has Cystic Fibrosis. These are some of my struggles.
Dr. Google
I won’t lie – I had no idea what Cystic Fibrosis was two years ago. I vaguely remember hearing about it when my biology teacher explained Punnett Squares, but that was over 15 years ago. It wasn’t until my daughter’s Ohio Newborn Screening Panel results were official that Cystic Fibrosis entered my life and my computer search engine. And what Dr. Google told me was scary as hell.
– The median predicted age of survival is 40 years old.
– It causes lung damage and eventually respiratory failure
– Digestion is difficult due to the mucus built up in the pancreas (think pizza grease in a diaper)
– There is no cure
Cystic Fibrosis Awareness Month
Yes, all of the above statistics are true. And yes, they are very scary. [quote]But what Dr. Google didn’t tell me was that everything was going to be okay. It didn’t tell me that family and friends would support my husband and me through the unknown.[/quote] It didn’t tell me that even though clinic visits are long and stressful, the CF team we have chosen for our child would teach us, listen to us, and determine the best course of action for our child. And most importantly (and probably what I needed to hear the most), it didn’t tell me that we would still be raising a typical fun-loving, energetic little girl who gives the best hugs I have ever received.
May is Cystic Fibrosis Awareness Month. The Cystic Fibrosis Foundation is on its way to changing the course for people with Cystic Fibrosis. Through research and development of new drug therapies, the CF community has renewed hope that one day CF will stand for Cure Found. However, none of that is possible without donations and awareness.
Payton’s Powerhouse
Sunday, May 17th at Island Park my family and I will participate in the Great Strides Walk – a walk to honor those with CF and to raise money and awareness. Not only are we walking for our two-year-old daughter, Payton, but also for her new little brother, Liam. That’s right. Eleven days after giving birth to Liam in February of this year, my husband and I received the news; Liam’s newborn screen detected the same two Cystic Fibrosis markers as his sister. We allowed ourselves a day to grieve, and then life moved on. Life moved on because we knew we would be raising another beautiful soul who just so happens to have CF. Join us in walking and honoring those living with this disease. If you’re unable to walk, please consider donating by visiting Payton’s Powerhouse. Breathe Easy.
Have questions? Does your kiddo have CF? Let’s chat! And… thanks for reading and helping spread awareness!
Thank you so much for sharing Lauren! Your children are adorable and certainly lucky to have you as a mama!
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