Blog #159~Down Syndrome Sibling Stories
October is Down Syndrome Awareness Month. Beauty Exposed, is a brand new book just published, featuring candid stories of life with siblings who have Down syndrome.
Chloe Goulding is the 17 year old author that put this book together in hopes of sharing honest stories to encourage families to be encouraged and to expose the true beauty. She wanted to tell the stories about her own siblings, Charity and Neko, who both have Down syndrome. In Chloe’s words, “Rather than seeing their disabilities, I see their possibilities and wish that everyone could see what I see. The beauty is there, waiting to be exposed.”
I first approached Chloe a couple of years ago, when she was seeking stories by other siblings for her book. My son, Nick is 22 years old and has Down syndrome and autism. In Beauty Exposed, there are stories from school age, high school/college and adult siblings. My older son, Hank’s story is included in this book.
Hank and Nick…..
The stories are candid and personal, sometimes making you laugh and others bring tears to your eyes. The lessons these siblings learned are woven throughout the book. Chloe learned to see the possibilities, enjoy the small things, not to give up (as people with Down syndrome have to work 10x harder to walk, ride a bike or talk).
In Beauty Exposed, you get a glimpse into what it’s really like to be a sibling of an individual with Down syndrome. It can be challenging and yes, sometimes embarrassing. I couldn’t help but laugh at some of the similar stories that reminding me of my son, Nick. He’s not the only one that is sneaky, clever and charming. One sister wrote about her brother getting into her room and breaking multitudes of perfume bottles, time and again. “The little cutie can do damage like a tornado.” Another brother writes, “He makes our family laugh all the time. He’s got some great dance moves, and he can sing aloud. He’s also the king of funny faces, and KNOWS how to charm an audience.
One of my favorite stories was about Frankie. His brother writes about his own birthday, as it is time to blow out his candles. “And before I can take a breath, half of my birthday candles are blown out. For the 14th year in a row. But it’s okay, because his smile is better than any wish I could ever make.”
While many stories are familiar with my own son, each contributor brings their own unique perspective. They have struggled and defended their siblings with Down syndrome. Yet, at the same time have they’ve experience empathy and learned what love is in a deeper sense. These stories show that without their sibling with Down syndrome, they would be a very different person.
Reading these stories, I got a sense of just that. Each sibling learned valuable lessons much earlier in life having been touched by Down syndrome. Just some of the lessons included that of acceptance, not taking things for granted, perseverance, forgiveness, compassion, patience and most of all, love. One story written by an Archbishop speaks to this, “Giving and receiving are intertwined. We never do one exclusively. In the case of my brother, it is not a cliché to say I have received much more than I have given.” That is the common thread in Beauty Exposed, and having the extraordinary opportunity to know someone with Down syndrome.
Thank you Chloe Goulding, for exposing the beauty that is Down syndrome. For more visit http://www.BeautyExposedtheBook.com. The book is available for purchase on Amazon, I’m going to give it 5 stars! I hope that we can all continue to advocate for those individuals having Down syndrome not only in October, but all year-long. That’s what is in my noggin this week.
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