And so it came to pass that for 6 nights and 7 days following his eye operation, Jonah and his mother and father moved into Grandma’s house.
The story is too long to tell and, by now, amalgamated into one long, blurry, mess of exhaustion, irritation, frustration, worry, and a million rational & irrational emotions spanning the gamut of the human condition. But I can provide some idea of the experience, sans hyperbole.
Each day Jonah attempted to remove his eye shield at least five times and usually 10 or more – and since it was vitally important for him NOT to touch his eye, each attempt required sudden and swift action, whether during day or night, in the car or the bathroom, while he was eating or running about or watching his favorite parts of Willy Wonka and the Chocolate Factory.
And each swift action provoked Jonah, usually sending him into a rage whereby injury was inevitable and often severe. These injuries occurred most often to Andy, since he was the only one with the strength to hold Jonah down while I cleaned the eye shield and re-taped it all across his face, attempting to close off any possible entry points for Boo to slide his finger beneath the tape and itch his eye. Not to mention there were two different eye drops we had to give him, one twice a day and one four times a day. Andy had borne a hole in the middle of the shield so that we could sometimes manage to insert the drops without having to undo all the tape and re-apply it again.
We quickly discerned that any of us was unsafe sitting in the backseat of the car with Jonah, after he bit my mother’s arm 3 or 4 times, drawing blood, and, on a separate occasion, attempted (partially successfully) to rip out two handfuls of my hair while somehow simultaneously shoving his foot in my face. Why not give up the car rides altogether, you ask? Because the car rides were among the only time-eaters, one of the only ways to give Jonah any semblance of peace. A thousand times a day, at least, he begged for car ride? car ride? car ride? wanna go see train? train? car ride? wanna see train? car ride? wanna go car ride? wanna see train? car ride?
I promised no hyperbole: a thousand times a day. By Friday I decided to count, and got up to 87 in the first 15 minutes of the day (our days began whenever Jonah awoke, usually around 6:15am) before giving up. It was maddening, the requests. At times we temporarily lost the ability to feel any sympathy at all for Jonah in the midst of his incredible ability to spew forth repetitive phrases ad infinitum. Oompa oompa? he’d ask if he wanted Willie Wonka, which was our favorite request, for it meant we could sit or lie down with him while he watched. He has no interest in the movie whatsoever until Augustus Gloop falls into the river of chocolate, but he adores the Oompa Loompas and most especially the end of the movie, where Willie Wonka yells at Grandpa Joe: “You STOLE fizzy lifting drinks! You BUMPED into the ceiling, which now has to be WASHED and STERILIZED, so you get NOTHING! You LOSE!”
Unfortunately it was also his least requested thing. In a vague order of repetitiveness, I’d say his requests were most often: car ride? wanna go see train? breakfast san-wich? take band aid off? black donut? lemm-a-made? grandma? all done? (when he was being held for aggressing), and a variety of other things, usually uttered in rapid-fire desperation, for what he really wanted, I am sure, is to have that damned eye shield gone and his routine re-established.
On each car ride Andy played FLY 92.3 on the radio, which Jonah loves. Music? he asked if it was not on, or loud enough. This meant we were treated to the same 15 songs or so played over and over and over- YAY! More mindless repetition. I got a particular kick out of Taylor Swift’s song about the nostalgia of feeling 22. I mean, isn’t that how old she is now? Once I slipped Guster’s Easy Wonderful in the CD player – but within 4 songs Jonah was asking for radio. I’ve lost the ability to guide my child’s taste in music – but then, what parent doesn’t?
We were at the train tracks in Voorheesville so often that we met all manner of railfanners.
These individuals come from all walks of life and sometimes far away locales to watch (and often tape) the trains passing by. They explained to us the pattern of the four lights, two on each side of the tracks, and what they meant. Four reds was bad business and usually meant no train was coming. We learned quickly not to say “four red lights” or anything even close to it within earshot of Jonah. He often began begging for green light the moment we got in the car for a ride to the train.
One day I snapped a picture of him actually smiling a little after we were lucky enough to see two trains!

Note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye
God forbid we had to detour from the exact route Jonah was used to while driving to the train. One time the local convenience store (Handy Andy’s) was in the process of burning down, smoke reaching with fat, grey, angry fingers at the sky. We had to go the wrong way, and there was hell to pay. That way! That way! Jonah screamed, oblivious to the burning building and emergency vehicles everywhere. To him it mattered not that flames were literally blocking our path; the only thing of consequence was that his route had been inexplicably disturbed.
One day he “eloped” (ran away), bursting out my mother’s front door, sprinting halfway down the street before Andy could even get out the door after him. Andy had to drive his car halfway down the street and jump out in order to catch Boo, track-star of the year. During the initial drive home from the surgery we had to pull over to replace the eye shield for the first time, and some passerby must have called 911 because soon a cop arrived to ask what the situation was. Hmmmmmm…where to begin?
Sleep was elusive and usually impossible, especially for the first two nights. My mother, bless her, slept on a blow up mattress downstairs so that Andy and I could sleep in her bed, each of us on either side of Boo, taking turns watching over him – parent-hawks protecting him from hemorrhaging, from the complete loss of the eye itself. When there was sleep it came in quick REM lucid dream time, frightening images and nonsensical mazes which were difficult to shake off once awoken.
Lest I get any further caught up in the excruciating minutiae of every incident (and believe me I could write on and on), suffice it to say that by Monday (the day of Jonah’s follow up doctor appointment), there were four individuals on the edge of something frighteningly close to insanity and nearly at one another’s throats.
One final, comedic coincidence occurred just before we left to drive Jonah to the doctor; my right eye was bothering me all morning and when I looked into the mirror, its pupil was fully dilated while my left eye’s pupil was dilated normally. So after Jonah’s check up, the doc took a quick look at my eye as well and, after an appointment with my own eye doc later in the day, it was determined that I’d gotten some of Jonah’s drops into my eye, causing the uneven dilation. I’ve had quite enough of eye problems, thank you very much.
I’m bleary eyed (no pun intended) and ended up telling far more of the story than I thought I’d even remember.
The best part of the whole week was snuggling in bed next to my sweet sleeping son, watching him breathe deep, stroking his hair, his warmth and innocence — enjoying the mama moments I no longer can have. That alone was nearly worth all the exasperation of the week.
When next I write it will be to tell a far different tale – a vastly better tale of redemption, miracles, and dreams come true. For, as Guster promises us, “there’s a twilight, a night-time and a dawn” — and my own dawn has finally come.
Sigh…I sit here, after I read this blog and I cry. Not pity, but mercy and admiration and understanding and respect…and yes, that ever-gnawing feeling of “WHY!!” A question, I fear I have learned, has NO answer….so I will shut up again. I love you! I wish to hug you! SOON!
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HUGS right back at you, Anne!
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Amy, I’ve been thinking about you and Jonah since I read this last night. I do hope every day gets at least a tiny bit easier for you both, and the operation has the outcome you hope for. Love, Allison
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Jonah asked for you – Allison? Allison? he cried. He remembers you, perhaps because you have kept him so closely inside your heart. Thank you.
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