Me and my little men

How excited we were on the day of my wife’s ultrasound appointment during her second pregnancy.

By the time Sheryl arrived back home, however, our family doctor had called and asked us to come in – to discuss some “irregularities.”

The afternoon turned tearful. Sheryl needed to talk and called her mom. I took two-year-old Caleb for a long wagon ride.

We had heard about spina bifida but had no idea what it meant or how it would change our future.

We had no idea of the magnitude of the journey ahead of us.

But we have come to know the road to B.C. Children’s Hospital very well.

Benjamin John was born in February 1999 with 14 people in the delivery room. Two surgeries immediately closed the lesion in his lower back and the hydrocephalus in his head. By the time Ben was four-and-a-half months old, he had had 44 casts on his legs because of severe club feet.

Caleb’s post-operation scar.

Ben’s older brother Caleb was also born with a physical disability, which showed itself when he was four.

The prominent curve in Caleb’s back, scoliosis, was the symptom of a much larger issue, syringomyelia, where the back part of the brain was sliding down his spinal column. A first surgery, in which doctors removed a portion of his cerebellum in hopes of regulating his spinal fluid, was not successful, but the second one was.

With a lot of prayer and a back brace Caleb will wear until mid-adolescence, the 51-degree curve is gradually getting smaller. Aside from some balance issues, Caleb is a healthy boy with a love of sports. (I’m involved in coaching Caleb’s soccer and softball teams and, like most dads, find it a challenge not to show even a hint of favouritism on the team!)

And Ben? Ben is now seven and in grade one. He has no sensation in his legs below the knees and gets around in a wheelchair.

Do I wish Ben could run around the soccer field like his brother? Of course. Does he wish he could play basketball like his peers? You bet.

But life isn’t all that bad for the Hagkulls. What started off as a parent’s worst nightmare has turned into a world of opportunity for our family.

Brad and Sheryl Hagkull with Ben and Caleb.

My great model

I don’t consider myself an overly fantastic father. I’m not as patient as I’d like to be. I know I could be a better encourager. I think I’m doing an okay job, but often feel like a dachshund trying to run in deep snow. I think if we’re honest, all dads feel this way to some degree.

But, I’m fortunate to have solid role models – my own dad being the best of them. He was my soccer coach. He taught me to cast a fishing rod and was there when I caught my first trout. He let me stir the pancake batter and taught me an array of flapjack shapes. (Basketballs were my specialty.)

Dad sat me down to tell me the facts of life in grade seven and helped me immensely when I gave the valedictorian speech at my high school graduation. In a nutshell, he was there.

His father (my grandfather) gave him some solid advice as a boy. He said, “Always leave the woodpile a little higher than you found it.” In other words, do more than the minimum and recognize that building into others is never a waste of time.

That’s the servant attitude my dad has consistently modelled. So, faced with medical challenges for both of my sons, I knew I had a father I could lean on. And I had faith in my heavenly Father to bring me through the most difficult times.

The work of God

When Jesus and his disciples encountered a man with a physical disability (John 9), someone asked, “Teacher, who sinned, this man or his parents, that he was born this way?”

“Neither,” Jesus replied. “This happened so the work of God might be displayed in his life.”

God has shown this to be very true for the Hagkulls.

About three years ago, our family watched an inspirational DVD that featured a father and his handicapped son doing the Hawaiian Ironman Triathlon together. An Ironman is a competition for elite athletes and involves three phases: a four-kilometre open-ocean swim, a 195-kilometre bike ride and then a full marathon (42 kilometres).

“Daddy,” Ben announced, as we watched the pair cross the finish line, “I want to do that.”

We laughed.

Then we realized he was serious, and the triathlon training began. If we were going to do this, it would have to be this year or no other because kids grow!

For the swim segment, I pulled Ben in an inflatable raft with a harness system I developed. For the cycling segment, Ben had a “Trail-A-Long” bike with specially adapted pedals. For the run, I pushed him in a borrowed jogging stroller.

By the time Ben hit kindergarten he had two events (albeit much smaller than the Ironman) under his belt.

Ben quickly outgrew the stroller. We were given a retired racing wheelchair we adapted by welding a handle to the back of it. (The narrowest handle we could find was on a 1977 Black and Decker electric lawn mower. I’m happy to report it works just fine.)

We are gearing up for several triathlons in the Lower Mainland this summer and, in August, our family is hosting “The Hope River Classic,” a fun eight-kilometre run/walk/wheel fundraiser for spina bifida.

Washing the “wheels” with Ben before their first athletic event together.

The finish line

We have adopted the motto “Where finishing is winning” and downplay the competitive aspect of our sport. We feel everyone deserves to experience the thrill of going over a finish line.

Caleb has proven to be our loudest cheerleader on race day. He knows Ben can’t do most of the physical stuff he can and is psyched that his little brother has found a way to be involved in athletics.

I remember a conversation Sheryl and I had early in her pregnancy with Ben. “God must really love us to be the parents of these children,” she said.

There is no doubt in our minds that God loves us a lot. We try not to think too far into the future because that can be a discouraging spiral.

Thankfully, our good days outnumber the bad ones. We realize “disability” is just a word.

And, we have the power to create memories for our kids. By God’s grace, we’re trying to ensure that both our little men have great experiences and positive family times to look back on.

Brad Hagkull and his son Benjamin competing in a triathlon event. Top left, Brad pushes Ben in a jogging wheelchair; right, Ben’s favourite part of the event, pedalling behind his dad in a Trail-A-Bike with adapted pedals; bottom, Brad swims, pulling Ben in an inflatable boat.

Brad Hagkull is associate pastor of student ministries at Broadway Church, Chilliwack, B.C. He has been in youth ministry at Broadway for more than 15 years. You can follow at Team Hagkull.