Do You Know Grampa?
September 27, 2013
by Mark Dunning
You know Grampa didn’t want to be Grampa. Grampas were old and he wasn’t old. He tried out a lot of names before accepting his fate. He said no to Granpappy and absolutely not to Gramps. He didn’t want something traditional like Pops or Poppa. So he took to the internet for alternatives.
Most were too cute like Bebop and Hee Haw and Huggy. Doody reminded him too much of the diapers he dreaded. There were trendy names like Ace or Bubba but they didn’t fit his staid personality. He tried out Fossil and Fogey and Geezer. He kind of liked Coot.
He hadn’t counted on his first grandchild being deaf. Why would he? He figured he wasn’t going to be Grampa or Coot or anything else. His granddaughter was deaf. She was never going to speak his name.
You know Grampa. He’s an engineer and he likes to learn. He’ll sit down and read a 900 page manual on SQL server but he won’t pick up a novel. He doesn’t like fiction. He’ll watch documentaries but he doesn’t like TV shows. He doesn’t like to watch fictional people live fictional lives. He wants to learn something, something he can apply to life.
What was sign language but something else to learn? So Grampa became a sign name, five fingers outstretched, thumb pulling away from the forehead. It wasn’t the name he would have chosen, but he liked it better than Grampa.
And the cochlear implant? Well, that was perfect for an electrical engineer. Grampa always believed in the power of technology. He rattled on about it over Saturday night dinner, peppering his son and daughter-in-law with questions. He believed in technology, believed in the power of medicine. Grampa trusts people and what are doctors but people just like him?
But you know Grampa. Behind it all he was scared. He was afraid of the surgery, afraid of the impact on his granddaughter. She was not yet two years old. Six hours of surgery. And so close to the brain.
Grampa wouldn’t show it, of course, but in many ways it was worse for him. He was an engineer. He fixed things. But now he could only sit by and watch. He had always made the hard decisions for the family, but now it was his son and his daughter-in-law making choices more difficult than he ever expected. He used to only have to worry about his children, but now he was worrying about his son AND his granddaughter. Worse, he was powerless. He was a bystander. He was left to watch. Grampa hates to watch. He wants to do.
It took a long time. After the surgery came the wait to turn on the implant, then months and months of speech therapy and babbling and words that didn’t sound like words. By the time she began to speak, Grampa was Grampa to everyone but his granddaughter. Her speech was delayed and she didn’t pronounce Grampa that way at all. He was Boompa or Bumpy, which was better than Grampa but not much better than Coot.
When the diagnosis came his granddaughter was doing so well. The sign language never really took with him. It was harder than he expected. But now he was Grampa. Clear as a bell. He wasn’t Bumpy any longer. He could talk with his granddaughter and she could laugh at him as he had always hoped. He marveled at her speech and the wonder of technology and beamed with her successes.
I mean, you know Grampa. He sees the positive in everything. He can always find the silver lining. But Usher syndrome? He tried to deny it, but it explained so much. And yet the idea that there was no treatment didn’t make sense. There is always something that can be done. There is always good that can come from anything. Isn’t there?
For a long time Grampa grasped for sunshine, only to feel it slip through his fingers. His smile wasn’t quite as bright. The apprehension leaked out in conversation. He wanted to learn, but all the information was so dreary, so damning.
Now you know Grampa. He’s frugal. He doesn’t like to spend money on frills. Grampa had paid off his house. His kids were out of college. He was still working. He wasn’t rich but he had disposable income. He wasn’t going to spoil his granddaughter, but he wasn’t going to deny her anything.
Grampa wasn’t old, but he was getting older. Usher syndrome, vision loss, it all whispered of mortality. The present was suddenly very important. The future was too frightening. So Grampa took his grandkids to the beach. And he took them to baseball games. His son would never ask for money, but all the doctor visits and specialists and technology had to be difficult. So Grampa quietly helped to pay for trips to Iowa and Philadelphia to see specialists. He covered the cost of spare parts for the cochlear implants. He put away money for college.
And when his son and others founded the Coalition for Usher Syndrome Research, he funded it. Not huge sums because Grampa doesn’t have huge sums. But he put in $1000 here, $2000 there. It was a trickle, he would say, nothing of note, but without it, the Coalition would not exist today and Grampa needed the Coalition. The Coalition was the good that would come from this.
The Coalition appeals to the engineer in him because it is built on technology. Families and researchers from around the world are building a community using e-mail and the Internet, seeking hope in the same way he sought better names than Grampa. An online registry houses families from 23 different countries. And it was all built on a shoestring budget, the frugality near and dear to his heart.
Most importantly, it allowed him to get involved while giving him hope for his granddaughter. He now has access to information from all the leading Usher researchers in the world and it is exciting to learn about all that is being done. His view of the universe in which knowledge and effort can resolve any problem has been rewarded. There will be a treatment in the future. He’s too much of an optimist not to see it. His granddaughter will be OK.
You know Grampa. He always expects to recover quickly. It doesn’t matter that he had cancer or that the surgery exposed heart issues that required a pacemaker. The doctors said weeks or months. He only heard weeks. It’s been months.
So when his granddaughter visits for the afternoon to cook with Grammy and Auntie Jodi, Grampa is as sour as the pickles they are making. His granddaughter laughs and calls him Grumpa. Her diction is a clear as crystal. Her happiness is infectious. As the three generations of women in his life chatter and clatter about the kitchen, Grampa sits grumbling at the table, a twinkle in his eyes.
Because you know Grampa. Inside he’s all smiles.