Matthew rolls himself forward in his wheelchair and unlocks the gate to the playground. He sees friends he knows and doesn’t know yet, and smiles at them both. A group of children stop playing in the sand box and run up to him, curious about his chair. They ask if there is something wrong with his legs. Instead of feeling defensive or intimidated at being singled out, Matthew happily responds “I have Spina Bifida!”
Matthew’s larger-than-life confidence is only a fraction of what makes him so special. It’s as if there is a light inside of him and it burns brighter than anything that happens to him. Everyone is attracted to that light, and no one is immune to his charm. “He had such a confidence,” Matthew’s mom Susan told us, “He never came home and cried about anything.” In fact, Matthew never had time to feel sorry for himself. He was always on the move, playing adaptive basketball, flipping the coin toss at the local football games. He went golfing and even tried skiing, and swam as often as he could. When they would go into town to run errands, Matthew would have to stop every five minutes and say hello to people he knew, introducing them to his mom. When they checked out at the supermarket, Matthew knew the names of every cashier. “He met a lot of people,” Susan remembers, “he touched a lot of hearts.”
Then, tragedy struck.
At birth, Matthew needed to have a programmable VP shunt put in. A shunt is a device that diverts cerebrospinal fluid from the ventricles of the brain to another body region where it can be stored. For 7 years, it worked fine. Then, Matthew suffered a brain inflammation so doctors removed his top vertebrae. A month later, Matthew began complaining of neck pain. Quicker than anyone could have anticipated, Matthew’s shunt malfunctioned and the increase in pressure caused his brain stem to herniate, which led to a stroke. After The Event, Matthew never spoke again. Because his brain continued to swell, doctors had to conduct emergency surgery to remove half his cerebellum. The cerebellum controls all of the body’s coordination and movement. Since the stroke, Matthew can’t smile, he can’t blink, he can’t squeeze his Mommy’s hand. All of his abilities were taken from him without warning.
Doctors prepared Matthew’s parents for the very real possibility that he would not survive. They kept using words like catastrophic and devastating, but Susan and Tom were only half-listening. They knew Matthew had it in him to fight. For the first 48 hours, they held their breath. When Matthew made it through that hurdle, they set their sights on the next milestone. And after 8 days, he opened his eyes.
We cannot control what happened to Matthew, nor can we ask why such bad things happen to good people. But Susan said it best: “Children who are robbed out of their childhood by a terminal illness or disease deserve only the best out of life.” We wholeheartedly agree. Matthew absolutely deserves the best out of life, and that’s where we come in.