within arm's reach

A friend, upon seeing my meticulously manicured garden and the obvious time and attention I give it, said that she didn’t know I had it so easy. Neither did I.

Yesterday, day eleven since Calvin’s last perceived seizure, we took him to the season’s first agricultural fair about an hour’s drive from home. On the way up I fed Calvin, like the little bird he is, pieces of chopped up strawberries, cucumbers and grapes and tiny cubes of gluten-free almond butter sandwich, alternately spooning in mushy raspberries and coconut yogurt. Though Calvin is eleven, none of this he can do by himself except to take each piece that I give him and put it into his mouth, often dropping them onto a crumby, drool-soaked bib. While feeding him I have to shield myself from getting my hair ripped out or being bopped in the face by errant fists which, while small, pack quite a punch. It's times like these that I am keenly aware that my crazy kid isn't getting any smaller.

Once at the fair, we were glad to see that tickets were just five bucks and Calvin got in free. It was hot, but the air had shed most of its humidity and a slight breeze kicked up cooling our skin. We changed Calvin’s diaper in the back of the car before setting off toward the fairgrounds. Almost immediately, Calvin began expressing his desire to stay put. Standing, though still in Michael's arms, he squirmed, laughed hysterically and succeeded in dropping to the ground, all of which seem to be his ways of telling us—since he cannot speak—that he doesn’t want to do what we are asking of him. It happens a lot. It is exasperating. After only a few yards we ended up strapping him into the stroller.

After a time in the stroller, with a little effort and a lot of patience, we managed to get Calvin to walk some and, luckily, he was fairly good-natured, not screaming, not wildly shaking his head. Even so, the kid is exhausting, having always to be within arm’s reach or holding on to our hands because, one, his walking is precarious on flat ground not to mention rough terrain and, two, because even if he could walk well by himself, the fact that he is legally blind and so significantly developmentally impaired means he would likely trip over or run into obstacles often. Besides these hindrances, Calvin is not prone to explore the world on his own. He seems oblivious to the goats and the horses and the pigs and the chickens even when we scoot him right up to them. Even if he could, he wouldn’t excitedly run over to the rides or the petting zoo or the shack serving ice cream and fried dough. The only thing I’d be fairly certain he’d do if he could walk completely independently, would be to make his way to the car—if he could see it from afar—hoping to go home.

As Sundays go, especially during a protracted benzodiazepine withdrawal, Calvin had a decent day, so after about an hour at the fair we dropped in on an annual summer pig roast hosted by our dear restaurateur friends and held at nearby Crystal Springs Farm. Again, if Calvin wasn’t in or at the end of our arms, he was sitting in the stroller at our feet being watched and fed and given medicine by us. All of the other children were scampering around, some of them barefoot, eating hot dogs, drinking sodas and playing tag in the field. For hours, probably, their parents relaxed in the grassy shade of a canvas tent, or meandered carefree amongst friends sipping beers and shooting the shit between tasty bites of heaven served atop white paper plates. A good summer vibe was had by all.

Michael and I managed to chat for a few minutes each with several friends who we don't see nearly enough, tag-teamed on one outrageous hot pork sandwich, took turns drinking beer from a plastic cup then said our goodbyes before heading back to tend to our weary boy's needs.

Once home, we helped Calvin out of the car, into the house and spotted him up the stairs. We gave him a bath, dried him off, dressed him for bed, spotted him down the stairs, strapped him into his high chair, fed him his dinner in fits and starts, gave him his two antiepileptic drugs—one liquid, the other pills—checked them off, brushed his teeth, walked him around some, burped him, put him in the johnny-jump-up for a spell, measured, mixed and spoon-fed him his homemade cannabis oils, changed his diaper one last time, gave him a few sips of water, took off his kerchief, tucked in his shirt, pulled off his slippers and socks, laid him into bed, covered him, dabbed a little lavender oil on his pillow, kissed him goodnight till he giggled, raised his safety panel and latched it, pulled the netted safety canopy over his bed and anchored its ends, put on his music, turned off his light, told him we loved him and were proud of what a good day he had. Then we closed his door behind us, grabbed the dreaded baby monitor and listened intently, full-volume as always, for the remainder of the evening and throughout the night, for any seizures or signs of distress; all these things we'll likely be doing for the rest of our lives spent with Calvin. Good thing we've got it so easy.

at the fair


  1. Ditto to all of the above. Year 21 and the livin' is easy.

    1. snarky of me for saying so, perhaps. i put my foot in my mouth plenty, that's for sure. it was just hard to swallow. xoxo

  2. It's an endless, grinding loop. I don't miss caring for my daughter full time. I am so thankful she lives in a group home now. When I dropped something off for her last week, she had just come back from Fort Edmonton. Her hair was wild and her face was dirty but she was smiling and enjoying herself. I can't really ask for more. She didn't even mind me leaving.

    I did what you do for seventeen years. I couldn't do it anymore. I still feel guilty about it sometimes.

  3. Ditto. 20 years. I sometimes wonder if people just don't know what to say.
    A day at a time.... Hugs to you.

  4. I read what you do just from dinner until bedtime and I had to laugh at the easy comment. Such bullshit for someone to say.