‘Raising a Daughter with Down Syndrome Helped Me Navigate the World’

Every mama has a hiccup…

Bright blue-eyed Canadian mum Stephanie is the type of woman you meet at a BBQ and instantly know she makes the best potato salad. As the eldest of six, she is warm, yet assertive – like your favourite elementary teacher who taught you about the word “respect”. Stephanie (or Steph as I soon feel inclined to call her – because of her easy going and huggable demeanour), is a mum of three. And her middle child happens to have Down syndrome.

Many are familiar with Emily Perl Kingsley’s essay written in 1987, “Welcome to Holland”, a viral parent poem that compares the experience of someone finding out their child has a disability to having their preconceived trip to Italy rerouted to Holland. A different place indeed, not better or worse, just different, and Steph navigates her ‘Holland’ with the best GPS, and a backpack filled with lots of strong will.

She is a published writer, internationally acclaimed photographer, and founder of Nektar, where she helps many find the sweet spot in life. With an Emirates NBD panel discussion (where she discussed the issue of education expenses) and a selected hub dot speaker under her belt, she is a true storyteller in the most visceral form. Living in Dubai she has fought the ultimate fight that mamas applaud her for when trying to get her daughter Ruby into mainstream schooling. Comments from schools like “We’ve never had one of those,” put her on a clear path to pushing the edge of norm.

“Parents were and still are coming to me with the same stories. People are spreading the word, ‘Go talk to Steph – she got Ruby into school’.”

People connect with visuals to tell the story. She is clearly a visual person with edgy asymmetrical hair and a fierce look in her eyes. “Everyone is a reflection of you in some way, so I took this photo of her (Ruby),” she shows me a blurred picture of an obvious look… “The prompt from a photography course I was taking was ‘rise’ and here was this girl looking at me asking me to do that. She was daring me, willing me to get these stories out.”

“The room was silent when I delivered Ruby, they were silent, very quiet serene, peaceful – they said the baby has Down syndrome but probably a mild case of it.” In reality you either have it or you don’t. Instead of trying to run away she focuses on positives and look at people’s individual gifts and what makes them unique. She seeks out and showcases people who do most extraordinary things with their lives, such as Karen Gaffney, the first woman with Down syndrome to swim the English Channel and other heroic stories.

“I am ME” (ME stands for most extraordinary) is Steph’s project aiming to change, not only the process, language and education, but to change the image of the whole situation, one picture and one story at a time. She interviews and writes stories on Facebook and asks the questions no one seems to ask, to shed light on people with a disability. She goes into people’s homes to talk to them, “Like real face-to-face time” to reframe them as so much more than society (so far) frames them.

When she got 1000 Likes in 24 hours, her fanbase and visibility positively exploded.

She has major projects to create a medical training program to educate medical staff on how to break the news of a diagnosis with dignity, grace, and the best resources and support. Contact Steph for more details.

She talks with drive, purpose and focus, turning her advice into value on so many levels. With a fear of inadequacy, it’s no wonder. As a fellow mama, I always take away so much from these interviews, from the obvious to the not-so obvious. From Steph, I leave feeling invigorated with what now, why not, just get on with it. Dubai is so happily focused on the physical. She sees Ruby as “light and beautiful” so, “Why focus on the fact that she can’t do arithmetic? That child gives a different richness to so many kids – teaching compassion, leadership and acceptance.”

Ruby wears no mask. Her obvious mask is Down syndrome but it’s also not at all. She doesn’t care and as simple as it sounds she wants others to loosen up, not be so serious, and to enjoy life. I can’t help but laugh at her description of loosened up Ruby wiping ketchup on a designer bag. With no inhibition as her biggest challenge, the gift comes with everyone around her being willing to push and test boundaries.

“Society builds you up like you’re amazing and you’re supposed to have answers and be positive. ALL. THE. TIME. But that wouldn’t be normal, now would it?” Well, she isn’t normal… She is wonderfully something. Most exceptional.

Steph has been there for a while, caught her breath, looked around and is now telling others, “Holland has tulips. Holland even has Rembrandts.”

She is taking pictures and sharing stories because “There is beauty in difference, and it is my dream that we can start to see those differences as gifts.”