Every parent wants to give their child the world. When Matt Johnson’s son was born with Cerebral Palsy, he was told his child’s world was going to be very limited.
“Kaleb will always face challenges. He will always need help. Little things like dressing himself or even transitioning out of his own chair, he’ll always need assistance. You don’t realize how much you take for granted until you’re complaining about some small inconvenience and you realize how many people don’t have the things you take for granted.”
Matt has learned not to take anything for granted, from the incredible team he built around his son, to the pain of running just beyond your body’s limits.
“There’s always this point in any long run where you hit a wall. When I hit it, I thought I was done for a minute. My legs were cramping and just on fire. Then I thought about Kaleb. I thought about saying this out loud to him and I just kept going.”
Matt needed a team that understood the importance of understanding limits and knowing exactly when and how to push them.
He chose Tiffiny Clifton, owner of Gotta Be Me Inc, a non-profit focused on creating an inclusive life for children and adults with disabilities.
He chose Marne and Hans Iwand, owners of Mobility Equipment Restoration. They custom build and restore adaptability equipment from wheelchairs to strollers, creating unique pieces that respect each person’s journey through ability.
He chose Steve Filips of Team Triumph, his own athletic ride-along program teaming veterans and civilians with disabilities with an “angel” to push them through marathons, triathlons, and other athletic events they have historically been excluded from.
“We provide the equipment, a runner, and the encouragement to take part in athletic events that help them really accomplish these feats.”
His team included a dozen area change-makers, but there was one new member of the family who couldn’t be left out.
“Tony is Kaleb’s big brother. He’s just an incredible guy. He’s a lot higher functioning than Kaleb, but he understands the challenges and frustrations in ways we don’t. He’s been amazing!”
Tony Nguyening doesn’t see his part in Kaleb’s life as any huge contribution.
“Four years ago, I was just this paltry 86 pounds. I wanted to be healthy. That was my only goal. I started working out at Genesis and lifting weights. I’m up to 125, 130 now. I’m jacked!”
“So now I have new goals. I’m going to walk. Not tomorrow, but before my last breath on this earth. And my older brother Tommy, he’s a really great guy, and he’s always there telling me I can do it. He’s always cheering for me. My first race, when I finally got to the finish line, everyone was gone. It took me a really long time to finish, the signs were gone, the crowd was gone. But Tommy was there.”
Tony felt the drive to be someone’s Tommy.
“I had this really great year. I’m going to school at UNO, and I’m working full time. I’m healthy, I’m strong. Working out really saved my life and I thought… I’m not doing enough with what I’ve got. So I joined Big Brothers Big Sisters and asked them if I could be paired with someone who had special needs. I would have loved to have had someone who really understood what I was going through when I was 11 and 12. When things really set in and you know you’re different. They said it could be a long time before I was placed, but within a month, they’d matched me with Kaleb! We became brothers on Mother’s Day.”
So now Kaleb has his devoted, loving parents, well-versed in his exact restrictions and limits, and he has Tony, the guy who knows that limits are set to be pushed.
This year was Team Inclusion’s first Market to Market. Their team consisted of 4 “captains” who live with varying degrees of mobility, all riding their chairs, and 12 “angels” pushing them the entire way.
“It was cold, and there were some obstacles we didn’t foresee, but Pink Gorilla has done this before. They had it all organized really well, gave us a lot of tips about making it as smooth as possible. We learned a little along the way, too. This year was great, but next year will be better!”
But Kaleb doesn’t have to wait a whole year to know his team is still showing up for him.
“We wanted to do the Good Life Halfsy, too… but Kaleb has to travel for fusion the day after, so we won’t be in town. Instead, Tony is taking Kaleb’s chair and is crossing the finish line in his honor!”
Matt knows his son will never walk out the door and experience the whole world. That’s why he found people, organizations, and causes that can bring the whole world to Kaleb.