Notes from the Grillo Pad (by Jerry Grillo)
Nine years ago, after my son Joe had been disregarded and disrespected yet again by people who should have known better, I got really upset. I channeled my anger into the 21st century’s favored vehicle of bloodless vengeance: the blog. Somehow, the editor of Atlanta magazine stumbled across it and asked if he could run it as an article in the print edition. So much has changed since that story ran in November 2016. Joe is no longer a fresh-faced teen and his cat, who appeared in the magazine photos with him, gave up her ninth life long ago. Joe’s challenges and needs (and the world around him) have undergone profound changes. So, here is a sequel:
• Joe is a constant loop in my thought-track. He is a 23-year-old man whose boy-sized body seems too small to contain his gigantic, mighty heart. And he is the toughest man I know.
• My son may not look so tough, sitting there in his wheelchair, his skinny body sometimes squirming in discomfort, sometimes jolting with excitement, sometimes passive, sometimes a pained expression on his handsome face, sometimes a joyful smile. So, he may not look so tough in the conventional sense. But you’d be wise to consider what they say about books and their covers.
• My son has biceps that you wish you had. It’s because he flexes his muscles. All of them. All the time. The part of his brain that initiates movement through electrical signals doesn’t work properly. Say that you need 12 volts to initiate a specific movement. Joe’s brain sends 1,000 unregulated volts instead. So, his body is tight much of the time and he basically assumes the shape of a surfboard. It’s a condition called hypertonia — increased muscle tension, resistance to movement. You can imagine the pain. Medicine helps.
• My son doesn’t smile as much as he used to, but he smiles enough to illuminate a room.
• My son can’t stand up on his own, but he always stands out in a crowd.
• My son is a minority within a minority, but he doesn’t have many performance activists or virtue signalers crying out for his civil and human rights.
• My son and his parents live life on the brink, and the brink is consistently being redefined or moved.
• My son has an evening routine that we’ve followed for years: I carry him down the hall to his bedroom, tuck him in, and put on a CD, so he hears music when he falls asleep. I like to think it colors his dreams.
• My son is nonverbal, and communication of any kind is a challenge. So, we haven’t really discussed the colors of his dreams.
• Society would heedlessly surge on, leaving my son behind as existential dust if not for a few tax-supported government services, which often are under attack, forcing us to scramble and fight to keep them. So, whenever Medicaid is threatened by massive cuts, we take notice, roll up our sleeves, and ball up our proverbial fists. We are tired of fighting.
• My son won’t be left behind as existential dust while I’m alive.
• My son can be depressing, exhausting, infuriating; and he can be inspiring, funny, and energizing — he’s a work in progress, like your son.
• My son is a teacher.
• My son is quiet but he is wonderful company, and his company is a gift that I can’t get enough of.
• My son doesn’t give his parents any days off, like other sons.
• My son is a constant loop in my thought track, and I’m good with that.
Jerry Grillo is the editor/publisher of the White County News.