SURREY — Just a few feet from the Christmas tree in the living room of their rural Delta home, Stephanie Beharrell snuggles on the carpet with her son Owen.
All around them are signs of the season – ornaments, decorations, neatly wrapped gifts, and of course, Christmas cards.
Lots of Christmas cards. Tons of Christmas cards. So many Christmas cards, in fact, that if cards were coffee cups, there’s a darn good chance you’d be sitting in the middle of a Starbucks convention.
And there’s just one reason. Owen.
Stephanie and husband Peter had no inkling what lay before them as they anticipated the birth of their first child four years ago. The pregnancy was standard stuff. The birth was standard stuff. But little Owen, as they named him, was anything but.
It’s called “Kabuki syndrome,” a congenital disorder that manifests itself in a wide variety of acute physical and intellectual disabilities. And Owen’s symptoms began almost immediately.
At first there was respiratory distress. As the weeks turned to months, Owen and his family endured an almost inconceivable barrage of ailments. Breathing issues, eating and drinking issues, urology issues, hip dysplasia, narrowing of the nasal passages, a partial cleft palate, seizures, low muscle tone, stunted intellectual development, restricted head and foot growth, and more.
Today, at nearly five years old, Owen functions cognitively at the level of a six-month old infant. He’s already in the third full-body cast of his young life, and apart from arm and head movements, he essentially remains immobile.
He cannot properly absorb food or liquid, instead taking in the nutrients and calories he so desperately needs through a gastronomy tube attached directly to his stomach. And he communicates with sounds rather than words.
“He speaks only when he feels pain,” says Stephanie, “when he’ll say “dadada” or mamama.”
“I convinced myself it was postpartum depression,” says Stephanie of the first few months, when convincing doctors of Owen’s condition was their second-hardest job. She speaks of the frustration, the lengthy multiple hospital stays, and, in a whisper, how “we nearly lost him one night.”
Incredibly, she doesn’t belabor the non-stop wallop to family finances.
“Peter runs a 300-cow dairy operation just down the road,” she says, “and we do the best we can.”
But it doesn’t take much imagination to understand how the constant medical and associated bills have taken a toll on the family of four (Owen’s brother Oliver is two).
And that brings us to Christmas. It’s always been a difficult time, she says, because Owen is unable to appreciate or operate the gifts they so very much want to give him.
“Owen can’t use over-the-counter toys. Look at almost any toy, and he doesn’t understand it.”
But that’s not all.
“Most four-year-olds, they can jump, they can grab things, they can lift things. But with Owen’s underdeveloped muscle tone, he’s not even lifting at a six-month age group. If something’s rolling away, he can’t stop it. If something’s falling, he can’t stop it from hitting him.”
Stephanie has, however, noticed over time that Owen appears to appreciate simple sheets of paper. He can grab them, he can shake them, he can in effect play with them without risk. And, she says, “he likes the way paper feels.”
So it was with some interest that Stephanie listened to a friend’s suggestion just a few weeks ago.
“A dear friend suggested that we go to Owen’s Facebook group, which was 250 people at the time, and ask if anyone wants to send him a Christmas card. I thought that was a pretty good idea seeing how much he enjoys paper.
“So that’s what we did. And before we knew it, it was being shared and shared and shared again. Then Vancity (Vancity Buzz media outlet) left a message that they’d like to share his story. I was shocked that they even knew about it. It’s now gone way beyond what we ever thought possible.”
And soon, the cards started coming. A trickle at first, then a river, then an ocean.
These days, Owen is receiving Christmas cards to the tune of 150-plus each and every day. The cumulative total to Monday morning? A whopping 2,261.
As we sat on the living room floor at the foot of the Christmas tree, I was struck not just by the sheer volume, but by the variety.
There were big cards, small cards, battery-powered musical cards, and elaborate pop-up cards. There were packages with dozens of cards inside, and others that were clearly drawn and handmade by pre-schoolers.
And the postmarks weren’t restricted to the Lower Mainland, either.
“We’ve received mail from Japan, Ireland, Hong Kong, England, Germany, New Zealand, Holland and Norway,” says Stephanie.
“West Point Grey (Academy) sent us nearly 200 cards. Surrey Christian School dropped off 60 cards. Every sports team in Vancouver has sent him cards...the Canucks, the Whitecaps, the Lions, the Canadians. Even shopping malls are sending cards.”
Some well-wishers go beyond cards altogether. The big packages sometimes contain storybooks. Others are directed to mom and dad, like the BCAA and Starbucks gift certificates that arrived the other day. And lots of folks, it seems, can’t stop themselves for sending straight-up gifts.
“We have 70 of them under the tree so far,” says Stephanie, adding that “people have just been incredible.”
I get to open a few cards myself as Owen and Stephanie adopt their usual afternoon “card time” postures – he propped up in his body cast on several pillows and she right beside him. And sure enough, as I hand the cards to mom and she in turn pours over them with her son, there’s a burst of liveliness in those eyes. He sees them, he touches them, he smiles, and he vocalizes.
Perhaps the best reaction of the day came when a certain reporter couldn’t for the life of him open a plastic courier-style envelope.
I looked over between pulling and tearing at the dang thing and of course mom was busting a gut, which prompted Owen to smile and laugh as well.
Later, Stephanie assured me the cards would have a life even after Christmas.
“In case people were wondering, we plan to take a clipping out of each card and paste them together to create a “Hope for Owen” collage on his bedroom wall.”
A half hour later, my day with mom and son was done. As I walked to my car, I wondered if this was a Christmas miracle and decided that indeed it was. A mom who’s cried so many tears on this long and difficult journey on this day shed tears of joy. A son who rarely ventures outside his own personal walls had on this day shown himself as the vital – and playful – young boy he is.
It doesn’t get much better than that.