20 Moments in A Child’s Life of Rarity

Sometimes, I think my daughter’s cystic fibrosis is the least rare thing about her. She dazzles brighter than a thousand suns and lives with a gusto entirely her own. Exhibits A-T: these 20 moments.

1. She parades down the street in heart glasses and a ladybug umbrella, but only when the sun is shining.

2. Her Dairy Queen order is unfailingly consistent. A rainbow popsicle with a unicorn on top. To date, DQ has yet to stock this delicacy.

3. She wants to sell the lawnmower. Moving forward, she will be plucking the grass by hand.

4. Her favorite outfit is a red Minnie Mouse shirt, magenta pants, and orange knee socks adorned with spiders. Beware the socks. They bite.

5. She recently told me that her brain hid under the covers at night with a flashlight and a scary story. That’s how bad dreams are made.

6. She makes Unicorn Squad videos on the regular. Most feature hulahooping or other feats. One was a 45-minute tutorial on how to dust a bar stool.

7. She likes to transcribe my phone calls on the driveway in chalk. “Mommy is talking to the doctor.” “Mommy is mad at So-and-So.” Let’s hope So-and-So is not a neighbor.

8. She runs a cafe in our kitchen called Cookies. As the name implies, Cookies serves honey sandwiches with red pepper.

9. She is curiously protective of her plant watering chore. A sign on every pot reminds the rest of us to “keep out.”

10. She delivers flower petals to all our neighbors. Doesn’t matter if you haven’t met. You’re getting a doorstep delivery.

11. She wrote a book about a boy named Smyth. Everything in Smyth’s life came up roses…until he was snatched by a blob.

12. She went wild with the temporary hair color while I was out. It’s not so temporary, but she sports her blue patch with pride.

13. Last Christmas, she gave me the best gift ever. She found it on Amazon by searching for “chapter books for moms.”

14. She has requested a twin sister named Ellie. The sole purpose is for tricking others.

15. She spent all her money on a globe, then made a list of places she wants to travel. First up: Alashankou, China.

16. Six months ago, she wrote a song about a mermaid and a big, bad bee. It had several verses and matching moves. I am routinely quizzed on what I can remember.

17. Her favorite show is The Bachelor. It’s not so age-appropriate, but she’s committed to seeing if her top pick will win.

18. She sleeps with a lamb perched atop her head at night. It protects her from nightmares, presumably by selecting the stories her brain gets to read.

19. She takes 213 pills each week to help her manage her cystic fibrosis (CF). The bigger the fistful, the better, in her eyes. Choking hazards be damned.

20. To avoid respiratory therapy the other day, she told us that she “didn’t have CF anymore.” Mad points for creativity.

Cystic fibrosis is a big part of my daughter’s life, but it does not define her. Sure, there are days where treatments get in the way of what she’d rather be doing. Where we have to turn down an invitation because the germs aren’t worth the risk. But seven years in, my daughter’s life bursts with a vibrancy that soars well beyond a diagnosis code.

Like all of our children who live with special medical, developmental, or behavioral health care needs, she deserves to be celebrated for her hopes. For her dreams. For all the colors of her personality.

And like all of our children, she leads a life of rarity that is entirely her own.