This week, I'm writing about something that I rarely talk about. That's because I've learned wonderful and welcoming news about an event in my life that seemed to have only a downside. Alas, it's one of the select upsides to the exponential growth of Internet sharing in our everyday lives that I'm learning how much has changed.
When I'd just turned 20 years old, I'd already welcomed a baby girl into my young married life. She was (and is) smart, lovely, and talented in many ways. A year or so later, I gave birth to a baby boy who was less than four pounds at birth and came with what was, back in the 60s, a tragic diagnosis – he was a Down syndrome baby. My then-husband was baffled and zero help in dealing with the challenges that accompanied the baby's low birth weight and limited future. He was mine to deal with – alone, with no social support. I did research. Read everything I could and knew that I'd be able to handle this unexpected gift. But the little guy died at six months of age due (the hospital told me) to a severe heart murmur on board at birth.
My world stopped for a while. I questioned everything. Life, God, love, and death. But healing started when I was again in the hospital with baby number three – a healthy, beautiful girl child. It was then and there that a window of opportunity cracked open. A young couple had just welcomed a Down syndrome baby boy into the world – and the nurses asked if I'd talk with them. When I sat with the new mom and dad, I found I'd had a deep well of feelings and positive advice to offer – knowing that people born with this ancient human anomaly are often capable of much more than is expected from them – and a healthy future for the family was possible.
This experience and personal awareness sent me in directions that led to working with folks who'd been discarded or underrated – elders, people with physical and mental disabilities. The work took me through college and onto life adventures, so many jobs I am still counting them (I'm up to about 50), and a few husbands I need both hands to count. (Current husband was the keeper).
And recently, while pursuing research to write for you, I ran across an uplifting story about a young woman who recently graduated from college, earning a B.A. degree in a typical mainstream curriculum despite having Down syndrome. I started scrolling and learning – feeling uplifted by positive stories of people born with three copies of chromosome 21, instead of two. That's the delicate difference between us – and still a mystery, although it's been found in human DNA since humanity's earliest days.
Today, there's fabulous and myth-busting news about many people who rose far above expectations to accomplish grand things despite that extra C-21. Outstanding among the thousands of stories about such people thriving despite Down syndrome is that of Tim Harris, – a Gold Medal winner of the annual Special Olympics and, BTW, the former owner of a successful restaurant. A few years ago, he sold his restaurant to move to another state and be with his girlfriend. Harris talked about his adventures with CNN. "My favorite part of the work day is giving out the Free Tim Hugs. They are on my menu, and most people order at least one. So far, I've given out nearly 40,000 hugs. I even have a counter on the wall to keep track of the total. I guess you can say I'm a lean, mean, hugging machine."
And there's Amie Brewer, who won many awards for her professional acting ability and then took on the state of Texas by insisting that the language used in official references to Down syndrome (which she has) be changed. Amie insisted that "Retarded," be replaced with "Intellectual Developmental Disability."
Zack Gottsagen is an established, recognized mainstream actor with accolades and awards. Now honored and admired, he started life with a diagnosis from experts who predicted he would never talk or walk due to Down syndrome. Thanks to his mom, who believed in Zack's abilities, he soared and mainstreamed in school. Zack is an actor who also teaches theatre and made history by being chosen to present a prestigious Academy Award.
There are countless stories of folks living with Down syndrome logging outstanding achievements and making news. Not so visible are the others whose lives weren't on track for fame but nonetheless experience victories and live good lives in the community at large.
I remember 50-some years ago when the condition implied a short life span of only 25 years. Today, it's 60-plus years. Sixty years that defy the belief that an extra chromosome is a hopeless diagnosis of severe intellectual and social limits. A portend of a grim future. Ignorance ran so deep that many people born with Down syndrome were institutionalized – the era in which my poor little guy came into the world.
Today, in the U.S. alone, about 400,000 people live with this evolutionary human condition. They are as varied as our mainstream population - some require family care, and many others transition into productive and independent lives. But, no matter, everyone has something to give if we are open to accepting the gifts of human diversity.
Thanks for spending time with me once again and for your feedback. This memory was a challenge to write down and send out to the world. A personal first.
Please share my blog with someone you think might enjoy it. And here’s a LINK to read more and learn about Down syndrome.
You can check out my highly-rated mystery novel HERE. See comments from readers about The Song of Jackass Creek. And, send me your thoughts - darby@darbypatterson.com .
From Recent Reviews: “A fast and fun read without all the violence” /“Great characters, I feel like I know them” / “Please tell me it’s the start of a series” / “Please, Ms.Darby, write me another” / I hope this is the first of many more to come by this talented author.
As always, thank you for the insightful and inspiring read. In the 1960s I was blessed to grow up with one of the most loving, generous and charming young neighborhood boys named Jackie. At 18, Jackie was asked by his older brother, Dennis, to serve his best man. (Jackie was a champion for all of the “little kids” in our neighborhood, for the bullied, the injured, the shy.) Jackie stole
/saved the day when he headed down the aisle to take the hand of the five year old ring bearer who needed some help overcoming his stage fright. Jackie worked in a Sheltered Workshop until he was 41 years old. He “retired” and spent the next eight years spending time with his nieces and nephews and continuing to comfort, encourage, and delight those of blessed by this amazing human!