How Cystic Fibrosis Is Like Fifth Grade Math
If I could go back to the day my daughter was diagnosed with Cystic Fibrosis and give myself advice, it would be this:
Do you remember in fourth grade when your class was combined with the fifth grade, and you sat paralyzed with fear as the teacher wrote formulas resembling Egyptian hieroglyphics on the chalkboard? Nothing made sense and you were sure that, even in a year, the foreign symbols of fifth grade math would never be a language you’d understand.
Fifth grade math is Cystic Fibrosis.
Math will never be easy. Cystic Fibrosis will never be easy. But you’ll learn the language, and how to ask for help.
There will be days when you think you cannot handle one more thing, when it seems like it isn’t humanly possible to be a single parent of a kiddo with CF. You will go to bed so exhausted you cannot imagine waking up and doing it all over again. But you will wake up and do it all over again. You will advocate and double check every prescription and talk on the phone to insurance reps who don’t care about your child, and you will have to make them care about your child so lifesaving medications are approved. You will learn the language of PFT’s and FEV 1’s and pancreatic insufficiency, and you will hear your child use this language with doctors and discuss medical procedures no 9-year-old should know about.
Those are just some days.
Most days will be filled with gratitude as you watch your daughter swim, play soccer, surf and hike mountains. You will watch this little person made wise right before your eyes as she manages treatments, meds and doctor appointments with Girl Scout meetings and playdates. You’ll read every Ramona Quimby book together, snorkel in Hawaii and ride hundreds of miles on Iowa bike trails. Every day you will laugh at something she says. You will be blown away by her wittiness, strength and intelligence. CF will become a part of your life but not your entire life. The shock of diagnosis will become less with each year — the hieroglyphics on the wall, easier to understand.
Some days you will not be up for the challenge. Forgive yourself. You’re not always going to get an A. This diagnosis didn’t come with a handbook. You will have to write your own. And with the help of family and friends and a supportive CF community, you will.
CF was not what you chose. If you could take this diagnosis away, you would choose fourth grade math any day. We all would.
But this is the test you’ve been studying for your whole life — how to love. And that’s as easy as 1, 2, 3.
For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
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