On caregivers, faith, family, and writing…

I first published this post three years ago, but I have revised and updated it in honor of Kyle’s achievement.

Kyles graduationKyle Robinson graduated from high school a couple of weeks ago. Achieving that milestone is remarkable under the best of circumstances, but Kyle has not faced the best of circumstances in his life.

Kyle is my grand nephew, the grandson of my brother Jim. He was born on September 24, 1996 – a beautiful baby boy with big expressive eyes – and then the seizures began. For the next several years, the doctors examined and tested, trying to discover what synapses were misfiring or what signals were getting crossed in that little head. They finally agreed that Kyle had cerebral palsy and would spend his life trapped inside a body that refused to respond to his commands.

Kyle’s family was determined that he would not be isolated, though, and they learned how to communicate with him. Kyle was Grandpa’s boy from the beginning. When Kyle was two years old, I spent Christmas in Arkansas with the Robinsons. One evening we were playing dominoes, and Kyle was sitting in Grandpa’s lap. With a mischievous glint in his eyes, he stared at Jim until he got his attention.

“What do you want, Kyle?” Jim said.

Kyle grinned and cut his eyes over to the glass bowl on the end table by the couch. Jim followed his gaze and returned the grin.

“You don’t want a piece of candy, do you?”

Of course he did, and he got it. Every child knows what an easy touch Grandpa is.

Through the years, Jim spent as much time with Kyle as possible. There were times when circumstances separated them by miles, but there was always a heart connection. Jim was never put off by the messiness of loving Kyle. He dressed him, bathed him, moved him from car to wheelchair to bed, and fed him – always with gentleness and caring, but also with a good deal of teasing.

“Hey, Kyle, are you keeping up back there?” he would ask when Kyle was riding in the backseat of his van.

“You don’t want any of Mimi’s chocolate cake, do you?” The answer was always a roll of the eyes and a definite nod. There’s always room for dessert.

“You’re such a nerd!” During one of my visits, Jim elaborated a little bit about the “nerd” thing.

“I asked him if I should stop calling him that, and he said No. Nobody can call you that but me, though,” Jim said, shifting his attention to Kyle. “You’re Grandpa’s Nerd, aren’t you?”

The sparkle in Kyle’s eyes and the loving look toward Grandpa were all the answer that was needed.

Increases in technology have helped Kyle communicate even more effectively. He now has an eye-activated computer that “speaks” and frees him from some of the constraints of his disability. It’s slower than speech, and he sometimes gets left behind in conversations, but when he has something to say, he knows how to make himself heard.

Kyles prom

All dressed up for the prom!

In school, Kyle had an aide who took him from class to class and took care of his needs during the day. He did well, and this was his senior year. He was so excited about it that he began sending notes to his Facebook friends in September inviting them to his graduation.

David and I didn’t make it to the graduation, but on Memorial weekend, we made a quick trip to Conway for a party his Grandpa and Mimi hosted for him. He enjoyed being the center of attention, and he worked the room like a politician. He has a motorized wheel chair that he operates with his head, and he scoots around at will. I managed to get his attention for a few minutes.

“So, what’s next, Kyle?” I asked. “Are you going on to college?”

“I’m try,” he replied. His grammar isn’t always perfect when he’s in a hurry.

I don’t know what’s ahead for Kyle. His summer schedule includes physical and other types of therapy to help his body keep up with his mind. After that, he may choose to continue his education, or he may opt to go in a different direction. Whatever he decides to do, his family will be right there, cheering him on, and I’m betting Grandpa will be the head cheerleader.

Blessings,

Linda

winding road Cover 25 percentA LONG AND WINDING ROAD: A Caregiver’s Tale of Life, Love, and Chaos

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Comments on: "A very special graduate – and Grandpa’s nerd | by Linda Brendle" (1)

  1. mimijolynn said:

    I’ve been chatting with Kyle today across the miles. With his computer ability, Facebook, and email, he’s working on graduation thank you notes. They may be a little slow in coming, but with us working together, they’re coming!

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