A mess can be beautiful.
That’s the message of a recently published children’s book by Shelley Smith Adams, a longtime parish resident.
“Coley Bear’s Blue-Tastic Day” is the first in a series that Adams dedicated to her son, Cole, who has Down syndrome. The book is based on a true experience – the day that Cole decided to paint himself in blue paint. Instead of seeing the mess, Adams saw the joy and pride on Cole’s face.
“A mess can be a beautiful expression of fun, and the love and understanding of family are what truly matters,” Adams writes in the book’s description. “Cole sees the world in a wonderfully unique way, inspiring others just by being himself.”
Adams said she hopes the book helps parents of kids with Down syndrome realize their child will have experiences that many other kids do.
“For new parents that get a diagnosis, they can maybe see this book and be like, ‘oh, my kids going to get into these kinds of messes, and he’s going to do these kinds of things that all these kids do,” Adams said. “This isn’t going to be a death sentence. This isn’t going to be a horrible thing.”
Adams said she wished she was given that perspective when doctors first told her that Cole, her second child, had Trisomy 21. Cole, who was born premature and with a complex hole in his heart, was in the NICU. Adams had finally gone home after days spent by his bedside when she got the call from her doctor with the results of her son’s genetic test. “I’m very sorry,” the doctor told her.
“I was in a very dark place for a few days,” Adams said. “What the doctor was saying sounded very negative.”
Adams’ perspective began to shift, however, when she told her older son, who was 12 years old at the time of Cole’s birth, about his little brother’s diagnosis. He asked her: would this kill him? Will he still play ball with me one day?
Adams told her son that his baby brother would be okay.
Cole finally went home after 99 days in the NICU and an open-heart surgery. He returned months later for another open-heart surgery, and he has since had 11 other surgeries, including a spinal fusion in 2018.
“He is our little miracle baby,” Adams said. “He was destined to be here and be with us.”
Cole is now 13 years old. He plays baseball, he takes hip hop dance classes, he loves to socialize, and he enjoys school.
“The boy is a hoot,” Adams said. “He just really does some funny stuff. He knows everybody. If he doesn’t know you, he’s going to act like he does.”
Adams, an accountant, said she always wanted to write a book. The idea of her first book was sparked by the photo of Cole covered in blue paint.
“I thought it would be a really cute book idea,” Adams said. “It’s not a how-to and it’s not a Down syndrome book. The main character just happens to be a kid with Down syndrome.”
Cole loves that he is in the book, which is now available for purchase on Amazon, Barnes and Noble and other retailers. Adams has already sold over 200 books.
“People want Cole to sign their books,” Adams said. “He thinks he’s a superstar.”
Each year, Adams and her family organize a kickball tournament at West Bank Bridge Park to raise money for the nonprofit Upside Downs, which supports kids with Down syndrome and their families. Last April, the tournament raised over $20,000, and about 500 people attended the event.
“It’s really amazing the amount of support we get from the parish,” Adams said. “I can go to the grocery, and people are telling Cole hi, and I don’t even know who they are, but everybody seems to know him.”
Adams said Upside Downs delivers baskets to new parents of children with Down syndrome. The baskets have baby items, resources, books, and contact information for other parents of children with Down syndrome. The group also educates health care staff on how important the delivery of a Down syndrome diagnosis is to parents.
Adams said she hopes one day her book is included in that basket for new parents.
“I hope that instead of that dark place, not knowing what this means for their child, they can see that we’re all more alike than different,” she said.
