Monday, February 29, 2016

Shine In Your Own Way On Rare Disease Day

Today marks Rare Disease Day, an international celebration of rare disease and the patients who live with them every single day.  Kyle and I are joining other INAD families in an effort to raise awareness by using the phrase #beatINAD across all social media platforms today.

As we continue to raise awareness for children with INAD, I got to thinking about my column series this year on lessons from children's books. Last month, I wrote about our love for Pete the Cat, which was an easy place to start.  When Kyle asked me about my second month's pick, I had a little more trouble, with so many great books to pick from.

I settled on two books by Drew Daywalt, including "The Day the Crayons Quit," and "The Day the Crayons Came Home."  If you haven't read either of these two titles with your children, I highly recommend it. We have really enjoyed them.

Grace received "The Day the Crayons Quit" for her birthday one year from Kyle's Aunt Kathy. At the time, we thought it was the perfect book because Grace hated to color, no matter how hard I tried with her.  We figured she probably did wish that her crayons would quit!

As the story begins, Duncan opens his desk to get out his crayons, only instead to find a stack of letters written by the crayons with their grievances to him. Red crayon was mad that he had to work on holidays like Christmas and Valentine's Day. Purple crayon was mad that Duncan colored outside the lines, and yellow and orange crayons were in a fight about which was the true color of the sun. Pink crayon pleaded with Duncan to use him, even though it was a girls's color, and blue and gray crayons both felt they were overused coloring things like oceans and rhinos.

In the end, Duncan decides that he wants all his crayons to be happy, so he uses his creativity and changes the colors that he uses for different things, making a beautiful picture. In his final picture, the whale is orange, the sky is yellow and the ocean is green. It got me thinking about how we all have different talents, and want to be used in our own ways. Maybe we don't always fit the mold of how things are usually done, but we all have something to offer with just a touch of creativity.

Then, at Christmastime, Kyle and I were delighted to find a follow-up book, and put it under the tree for Grace. "The Day the Crayons Came Home" is just as cute, with fun new crayons, like pea green, who changes his name to Esteban the Magnifient because no one likes peas.

At the start of this book, Duncan gets a stack of postcards in the mail from some of his crayons that have been discarded or lost over the years. There's neon red crayon who was used to color a sunburn, and that got left by the pool on vacation. Then there was a light brown crayon, possibly tan or burnt sienna, that had been eaten and puked up by the dog, and now covered in fur. Duncan managed to leave his glow in the dark crayon in the basement after they used it to draw scary pictures for his baby brother. And gold crayon got blunt when Duncan individually colored a pirate's treasure coins.  As a treat, orange and yellow crayon came back, but they were no longer arguing about who was the true color of the sun because they had been left outside, and melted together.

In the end, Duncan was sad to learn about all the crayons he'd lost and forgotten, so he ran around gathering them up. However, by now, they were all so badly damaged and misshapen that they no longer fit in his crayon box. Instead of throwing them away, Duncan built a brand new crayon box where all of the crayons would feel at home, no matter what shape they were.

And that's what got me thinking about Rare Disease Day. We've met so many kids who have different abilities and don't always fit into the normal pictures we paint. But with a little love and compassion, everyone can be included and given an opportunity to shine in his or her own way.

This year on Rare Disease Day, I hope you will take a few moments and help us to raise awareness about INAD, and what a devastating disease it is. But I hope you will also take a few moments and think about ways you can be more empathic and compassionate to those around you, and help them find their own ways to shine in the rainbow of life.


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