This episode is close to my heart as it explores a story that is very personal to our family: the birth of my niece Evelyn Joy.
You may have enjoyed Episode 11 where I introduce my brother Scott Hurren as he shares his views on seeing the universe’s challenges as opportunities to thrive. Well, he’s back! And today, we’re celebrating World Down Syndrome Day with a very special episode all about our sweet and determined Evelyn.
Scott is honest and forthcoming about what it was like in those first few moments after discovery, specifically all of the questions and emotions that flooded the heart and filled the room.
Will she be able to work?
How will our families react to this news?
What did we do wrong?
Is this our fault?
What does this mean medically?
There was never resentment, but these questions are still being answered and are ever-evolving as the years go by. Scott and Rebecca are champions in their children’s lives and advocates for change and acceptance. Their story is inspiring and insightful and sheds light on what it might be like to have your entire plan tossed out the window, only to discover that a new plan is waiting just around the corner.
Scott reads from this poem during our episode:
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan.
They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.
But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
c1987 by Emily Perl Kingsley. All rights reserved.
Scott has also graciously offered to help answer any questions you, or someone you know, might have about raising a child with Down Syndrome. Both he and his wife, Rebecca, are community leaders and devote so much energy into creating the best and most supportive environments for these children to thrive. You can reach him by email: firstname.lastname@example.org
Episode 27 – Finding Joy In Life’s Biggest Curveball: A Special Episode with Scott Hurren to Celebrate World Down Syndrome Day
After a textbook pregnancy that ended with a dramatic rush to the hospital just in time for the delivery, Evelyn Joy entered the world and joined our family. The rush of adrenaline and excitement would quickly turn to quiet, as this became the moment that Scott and Rebecca Hurren would discover that their beautiful daughter was showing signs of Down Syndrome.
Looking back to that day in 2012 we now know it was the beginning of an entirely different path, one that couldn’t be planned, envisioned, or controlled. On the day of this episode’s release, we are celebrating World Down Syndrome Day, and I could think of no better opportunity for my brother, Scott Hurren, to share their story that started with discovery and continues today with gratitude and eternal optimism.
Call it a curveball, or call it an opportunity for a greater love — either way Scott and Rebecca were handpicked for this life, and they’re seizing every single moment along the way.