Different does not equal scary. The family of a young Tooele boy would love to shout this message from the rooftops.
Xander Johnson was born 15 weeks too soon. Weighing less than two pounds, he had to be rushed away by helicopter in the slightest hope that his life could be saved. Doctors told his parents, Kim and Trent Johnson, to say their goodbyes.
But Xander had his own plans. After being given a 3 percent chance of survival, he made it through that night. And the next. He kept right on making it through the hits that just kept coming.
One week after he was born, Kim said, Xander suffered grade four—meaning devastating—brain bleeds. His delicate blood vessels were just too fragile. This bleeding caused a significant brain injury that brought lifelong consequences.
Xander has cerebral palsy.
Today Xander is 5 years old. He uses a walker and a wheelchair to get around, drinks formula instead of eating solid food and deals with balance and coordination issues along with countless other challenges.
He also scoots around his house with the speed of any child. He reads, he swims, he dances, and oh, how he talks. He has a smile that lights up the room. His mother says he’s the happiest person she knows.
Xander has had to work hard to get where he is. A neonatologist once told Kim and Trent that Xander would probably be a vegetable, unable to move or have any quality of life. But over 6,000 hours of therapy later, he has surpassed all expectations.
Kim homeschools Xander so they can keep up with his rigorous schedule of therapy and doctor appointments. He goes to therapy in Tooele five days a week and visits Primary Children’s Hospital several times a month. He has had five surgeries in his short life and will need two or three more before he turns 10, Kim said.
Kim’s full-time job now is to be Xander’s caretaker and teacher.
“His needs are extensive,” she said. “He requires multiple medications multiple times a day.”
Balancing these demands with the regular running of a household filled with three other children can be daunting.
Kim and Trent have had to become experts at time management, research, advocacy and “medical speak.” And amid all these struggles, Kim said, one of the biggest is keeping Xander challenged.
“His intellect is not at all affected,” she said. He is extremely curious and hungry for knowledge. He’s currently learning first-grade material and advancing quickly.
Whether Xander is learning a new academic concept or tackling a difficult milestone, Kim said, “he’ll rise to the challenge every time. Every single time.”
Along with Xander’s hunger for knowledge is a desire to be social and have friends. Kim said that because he has had teams of doctors and experts constantly examining him his whole life, he has no “personal bubble.” No awareness of “stranger danger.” Xander wants to be friends with everyone.
Unfortunately, the feeling is not always mutual.
“We have had parents not allow their children to play with ours, because they are scared their kids could ‘catch’ what Xander has,” Kim said. She is amazed at how misunderstood cerebral palsy is, considering it is the most common disability in childhood.
When the family is out in public with Xander, “95 percent of people just stare,” said Kim.
“Or they will ask, ‘What’s wrong with him?’” added Trent. The family’s answer is an emphatic “Nothing. He’s great the way he is.”
If people took the time to get to know Xander, they would see a smart little boy who loves to learn how things work. He’s a brother who cuddles with his siblings and his cat. A child who has spent his birthday personally delivering donated items to the Neonatal Intensive Care Unit. A child who dreams of becoming a pediatric neurologist so he can help other kids like himself.
If the Johnson family could say anything to the people who stare at and have fears about Xander, it would be this: Don’t judge him before you get to know him. Don’t be afraid of perceived differences. He just wants to be loved and to be a kid.
Kim added, “Please don’t teach your children to be afraid of Xander.” Children, being naturally curious, have approached Xander and asked questions, only to be snatched away by a parent and told not to bother him.
“If you have questions, please ask,” Kim said. “Don’t be afraid to let your children ask. We have answers. Cerebral palsy is not contagious. You’re not going to ‘get’ anything except a cool new friend.”
To be sure, the last five years have been filled with many difficult and scary times. But, Kim said, “Everything Xander’s been through has made him who he is.” And the family wouldn’t want to change a thing about him.
Everything they’ve been through has also made Xander’s family who they are today. Kim said she has been forced to become more patient and creative. She has gained more compassion for others and spends time mentoring other parents with premature babies, helping them through their questions and struggles.
Trent said he has become “more flexible in [his] expectations of life in general.” He is now more tolerant of not having all the answers all the time.
And Xander’s three older siblings? “They’re compassionate,” said Kim. “They see someone in a wheelchair and don’t hesitate to talk to them.”
Looking back on her experience so far parenting a child with a disability, Kim said, “You find strength you didn’t know you had. You didn’t need it before, but you dig deep and it’s there. You face every fear you ever had by having this child, and yet you’re still grateful for it all.”
Kim said that Xander was once asked, “What’s it like to have a disability?” He just shrugged and responded, “What’s it like to not have one?”
This is a child who is not sad about his life. It’s the only life he knows, and those who are lucky enough to know him are just happy they get to be a part of it.