Painting My Daughter in Color

by Jul 9, 2020Advocacy0 comments

Painting my daughter in color. This is a priority for guest blogger Laura Spiegel who wants people to see all the colors of her delightful daughter’s personality rather than the black and white of the condition she’s had since birth.

Every day, my six-year-old daughter surprises me. 

She wants to be a worm doctor when she grows up. You know the people who rescue crusty worms from the sidewalk after the rain? It’s apparently a thing.

She has named both her feet. Winston and Abby carry her everywhere, and they are feisty when their names are mixed up.

She talks to the flowers and dresses like a witch. A witch in a swimsuit who jumps through the sprinkler with her hat perched atop her head, to be more specific.

She invites the neighborhood pests to “ant parties” on our front sidewalk. The invitations are simple. Hamburger buns soaked in water and smashed onto the pavement. Never tried it? Give it ten minutes, and the critters will come.

“Close the door! You’re letting in flies!” I complain. “I like flies,” she deadpans as she marches down the sidewalk, gray wig in hand.

“This is my favorite book,” she declares. “I’ve never read it, but I like how [the author] decorates the cover and uses proper words and puts page numbers everywhere.” 

When she grows up, she wants to “change the world, like Martha King Jr.” She will start by “making it illegal to be mean.”

Each holiday, she packs a bag of stuffed animals and treasures from her room and gifts it to her mom, her dad, or her big brother. Not just the ratty old stuff. The good stuff too. 

She makes homemade books with stories, discussion questions, and a concluding word search. Her favorite involves the sun and the moon battling over who gets to be in the sky. Spoiler alert: they learn to share. 

She is slowly completing her mastery of bad words courtesy her obsession with The Sandlot. She just learned what’s funny about the planet Uranus. I’m sure it will make its way into a story soon.

She is the only person I know who follows up “I want to make God’s heart full today” with “By the way, Jesus hit me last Tuesday.”

Some days, it takes an act of God to get her to do her respiratory therapy for her cystic fibrosis. Other days, she’s done her therapy and run five laps around the yard for good measure – all before I wake up.

She likes to listen in on my board meetings with the Cystic Fibrosis Lifestyle Foundation. She quietly asks whether the other members do mask and vest like she does. The more people who do it, the better.

She names her medicines by taste. This makes medication reconciliation with the pharmacist a real treat.  

She pumps herself up before taking the “yucky, disgusting one” or taking on the monkey bars. “You can do this,” she’ll whisper. “You can do hard things.”

My daughter’s cystic fibrosis is an important part of her, but it doesn’t define her any more than her witch hat or her left foot Abby. To define her by her health alone would be to paint her life – her world – in black and white. 

My daughter is a warrior, a dreamer, and a lover and protector of all things big and small. She also lives with cystic fibrosis. 

And me? Like so many other parents of children with special medical, developmental, or behavioral health care needs, I’m painting my daughter in color.

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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 laura@paintherincolor.com, 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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