Life with a Rare Disease in 20 Enchanting Moments

by Mar 16, 2021Special Needs Parenting0 comments

Too often we dwell on the challenges of life with a rare disease. Laura Spiegel challenges us to dwell on enchanted moments instead.

Life with a rare disease is often portrayed as a series of challenges. But these 20 word pictures from guest blogger Laura Spiegel show the enchanting life of a little girl who happens to have cystic fibrosis. 

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 enchanting moments of her seven-year-old life with a rare disease.

  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 with a rare disease. 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 with a rare disease in a way that is entirely her own.

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By Laura Spiegel

Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at, and on Facebook and Twitter.


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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.



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