Return to trevor archives
My brother and I have had our moments, moments that have left my father shaking his head wondering how we aged into adulthood without growing up, but my brother Matt, and his wife Stacy, are two of my heroes. My nephew, Samuel, has severe special needs. He has autistic characteristics and was born hydrocephalus, with fluids putting pressure on his brain. He has been in the hospital more times than I would care to guess and his medical records resemble a phone book. When you have a special needs child, you don’t get the big victories most parents take for granted. You don’t get the excitement of the first day of school. You don’t get the big home run. No handing the car keys to them and having that warm fear as the taillights disappear around the corner. No standing on the graduation stage, diploma in hand, proudly looking at the sea of mothers and fathers. No introductions to that special someone. No roses. No white lace and dresses in the future. No first jobs and ultrasounds of grandchildren on the way. Worst of all, no hearing “I love you” or “thank you, mom and dad” when you need it the most.
Life is just a constant meat grinder. Trips to the hospital. Seizures. Embarrassing moments where other parents look at you in stores and wonder why you cannot control your child. Doctor appointments. Therapist appointments. A never-ending list of school meetings. Medications. Screaming. Temper tantrums that cannot be reasoned with. Accidents. Dentist trips and haircuts that can become open warfare. The defeat of having to say “not today,” and hoping maybe next week he will be better. The pain of each year watching the gulf continue to grow between what your child can do and other kids born at the same time. The physical tugs of war. Simple things are mountains that others will never understand. The tears. Exhaustion. The never spoken of fear in the back of your mind, maybe this week, it is all over. The hard reality that the perfect family that everybody else has, is just not in the cards, never will be, but you would never want another kid. The times, and they happen too often, where no matter how hard you try to hide it, your days they are deeply written in your face and body.
Because you don’t get the big things, little thing, little victories, things most people hardly notice, make the sun rising and setting seem like afterthoughts. So, it is little wonder that a fourth grade school track meet means the world to my family. It is the kind of school event that most parents do not even go to, or is just a few seconds of idle chatter around the dinner table, the type of event that most parents and children have long ago forgotten about. It was just another normal day in a normal kid’s childhood.
Sam is not normal. He is broken and perfect at the same time. Handsome, I wish I was half as good looking as that kid, the scars from some of the brain surgeries can still be seen through his haircut. The tube running down his neck under the skin to his stomach can be seen if one looks for it. Scars from the dozens of hospital stays, (25 surgeries over 9 months), dot his skin. One of his hands slightly crippled from a stroke when he was little. He lives in his own world most of the time, dancing to a spirit most of us cannot understand. Wearing black shorts and a red t-shirt, his gaze is far off, his vocabulary limited. A generation ago he would have been sent off to an institution, or hidden away from prying eyes. That day he was with the other children as they ran around and talked, like normal youngsters do. Teachers were hustling around, trying to keep some semblance of order. His dad and mom were there. My dad was there in the stands to watch his grandchild. And I am sure the fears were there. Will this be a good day?
When your child hurts, as a parent it is worse for you, the kind of pain you cannot imagine until you have one of your own. They don’t tell you that when that newborn baby is put into your arms. My Dad, Stacy’s parents, friends, in the stands, the kind of love and pride that no writer has the words to express. It would be a good day if Sam just wandered around the field or maybe sat near the goalposts listening to music. Today he was going to race.
A little boy named Michael, about half of Sam’s size was going to take his hand and guide (basically pull and lead) him, around the track. One hundred meters, just 328 feet, a quarter around the track, not very far, but a marathon for someone like Sam. They must have looked like Mutt and Jeff, this blonde boy in a yellow t-shirt, and Sam, as the other kids got into their stances waiting for the gun to go off. Ready to provide help and encouragement were the elementary school principal, Mrs. Hartzler, and a teacher, Mr. Textor. Nobody knew what was going to happen. Sam could decide he was bored and just decide to wander off the track. Maybe, just maybe, he could make it around the track. Bang.
I’m sure the kid that won the race that day barely remembers it, if at all. The kids who finished second and third, probably not. Sam finished last. Most of the kids were probably taking off their shoes and enjoying a juice box before my nephew crossed the finish line. Little Michael, pulling and shouting encouragement to him. My dad remembers that day. My brother and his wife do too. It was a very good day.
Parents were standing and yelling encouragement. Other kids from the school stood next to the track cheering him on. They rounded the curve and headed down the straightaway, Sam, his head back and his free arm raised, the two adults and that little boy. When my dad talks about that day he still gets choked up a little, because, maybe, suddenly Sam understood what was going on. Maybe it was the cheers or the energy in the crowd. Sam gave a big smile as he stumbled towards the end. Sam, one unsure step after another, was going to do what many would have thought impossible. He was going to finish his race. There were tears and lumps in the throat. No matter where Sam finished, he won his race.
I am sure greater things happened that day, events that probably changed the world. There were probably even better 100 meters dashes run. For my family, that was one of the best days of our lives. My brother keeps a photo of that day. It is his favorite picture of Sam. Such a little, little thing, but it meant all the difference in the world.
Many of us are like Sam. The scars are just inside, the brokenness hidden from the world. One step, two. We all could learn a lot from Sam’s race. Three steps, four. Friendships and gentleness. Five steps, six. It is not where you finish, seven step, eight, or how good the effort looks. Nine steps, ten. It is just if you try. Eleven unsure steps, twelve. It is just if you try. Thirteen steps, fourteen. You are almost there. Fifteen steps, sixteen. We all need heroes. Seventeen, eighteen. Thank you, Sam.