The words are unimaginable for any parent.
Almost impossible to comprehend.
But they’re what doctors kept telling Kaley and Ron King almost nine years ago when they examined their 10-month-old son, Toby.
Because he had a rare birth defect called Fibular hemimelia, every opinion the two got about their baby boy said the same thing: His right leg — below the knee — would need to be amputated.
“Pretty much every doctor said he wouldn’t have a normal childhood,” Kaley said. “He’d be in a wheelchair. He wouldn’t be able to walk. So we did the amputation for a better lifestyle. … He walked on his first prosthesis when he was 13 months (old).”
Just because every doctor told them it was the right choice doesn’t mean it was an easy one.
How could it possibly be?
“It was like mourning a loss,” Kaley said. “We had his foot cremated and it’s in a little baby urn in my bedroom. We also got a gold mold of his foot before the amputation. It was like going through a grieving process.”
There have been many obstacles overcome since, and there are still plenty more to go. Which is why that moment last month was so special as Toby, with his prosthetic leg, earned his black belt at Killearn Lakes Taekwondo.
Black belts are hard to get for anyone. They are a lot of work.
For kids, even ones without physical hardships, the path can just be too daunting. Too hard. Too much commitment.
Imagine then the sheer willpower it takes for a 9-year-old, with a sometimes painful prosthetic, to pass a black belt test.
“I remember one time, as he was growing, his prosthetic wasn’t fitting right,” said Ray Marky, one of the owners of Killearn Lakes Taekwondo. “It was to the point where it hurt him just to walk. It didn’t fit quite right. He still came in even when it hurt.
“Because to get a black belt you have to come to classes two or three times a week. Every single week. For a couple of years. That’s quite a commitment.”
It’s the kind of determination that can make a mom cry tears of joy. Instead of tears of grief.
“It was really moving,” Kaley said. “We from Day 1 have treated him so normal. We don’t let him be lazy or get out of things or complain. But for every 14 good days there is a really bad day. He’ll have blisters and he’ll bleed and he can’t walk. And I’m carrying a 9-year-old and we have to get a wheelchair. So we have bad days.
“But for the most part we have so many good days.”
“He’s going to be a saxophonist,” Kaley said. “He’s saving up money to buy his own saxophone – he will do what he wants to do, for sure. He was actually inspired by Kenny G, believe it or not. Isn’t that crazy?”
In most ways, Toby is an absolutely normal 9-year-old boy. Except for the black belt and Kenny G.
And, of course, the prosthetic leg.
Kaley said Toby is on his 13th one since the amputation (he gets fitted for a new one every 10 months or so).
The hard stuff isn’t over for her first-born son either.
Toby still has some mountains to climb, figuratively and literally most likely, in the coming years.
Fibular hemimelia occurs in about 1 in every 40,000 births. It’s a disorder where part or all of the fibular bone is missing, as well as associated limb length discrepancy, foot deformities, and knee deformities.
“It’s a lifelong issue,” Kaley said. “A challenge we have to live with forever. There will be surgeries in the future. Whether we have to stunt the growth in his left leg, so that it stops growing so fast and he can stay more even-keeled, because his knees are already off line … we’re not done, unfortunately.
“I wish it was.”
The future for Toby King isn’t known for sure.
But the past is.
As a 7-year-old he told his mom and dad he wanted to be a black belt. Two years later he’s exactly that.
“We never treated him any different, until the awards ceremony,” Marky said. “I said, ‘We were always told to not treat him any differently. And we didn’t. But this is a little more than just a regular kid working hard for two years.’”
Two years from now he might be winning talent shows by playing Kenny G cover songs. Who knows?
Toby understands he’s not quite like the other kids in his class.
He just doesn’t let it stop him.
There’s a lesson in that.
“He’s happy that he’s persevered,” Kaley said. “He played soccer when he was little. He did gymnastics for a year and a half. He does everything. We go skating. We play football. He’s very active.
“And yeah, there are some days when I say to myself, ‘Wow. I can’t believe he does what he does.’”