20 Moments in a Life of Rarity

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Laura Spiegel

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. Here are 20 moments in my seven-year-old’s life of rarity.

  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 delivers flower petals and small notes to our neighbors. Not the kids, but the adults. Doesn’t matter if she just met you. You’re getting a doorstep delivery.
  4. She wrote a book about a boy named Smyth. Everything in Smyth’s life came up roses…until he was snatched from his room by a blob.
  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’s developed a newfound love of plant maintenance. Watering is her jam. Lest we forget, a sign reminds the rest of us to “keep out.” P.S. She “means it.”
  7. She wants to sell the lawnmower. Moving forward, she will be plucking the grass by hand.
  8. Her favorite outfit is a red Minnie Mouse shirt, magenta pants, and orange knee socks adorned with spiders. Beware the socks. They bite.
  9. Last Christmas, she gave me the best gift I’ve ever received. It was a book by Lisa Wingate. She found it on Amazon by searching for “chapter books for moms.”
  10. She has requested a twin sister named Ellie. The sole purpose is for playing tricks on others.
  11. She makes Unicorn Squad videos on the regular. Most feature hulahooping or other amazing feats. One was a 45-minute tutorial on how to dust a barstool.
  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. She spent all her money on a globe, then made a list of places she wants to travel. First up: Alashankou, China.
  14. 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 pop quizzed on what I can remember. (I have yet to pass).
  15. She runs a cafe in our kitchen called Cookies. Cookies does not serve dessert; just honey sandwiches with a healthy dose of red pepper seasoning. The fare is surprising…spicy.
  16. Her favorite show is The Bachelor. It’s not so age-appropriate, but she’s committed to seeing if her top pick will win.
  17. 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.
  18. 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 isn’t local…
  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.

 

Help Others Live STRONGER and LONGER-

                                                                                            

 

 

 

Laura Spiegel lives in Indianapolis with her husband and two children, one of whom has cystic fibrosis. She loves a good book, a great glass of wine, and connecting with others who nurture the blessings alongside the battles. Laura is the Founder and President of Paint Her in Color, a web site that offers emotional support to parents of children with special health care needs. She can be reached at https://www.paintherincolor.com, laura@paintherincolor.com, https://www.facebook.com/paintherincolor, or https://twitter.com/her_color.

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

 

***Please speak with your physician before making any changes to your CF management***

 

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