A Father’s Journey With His Disabled Son
ISBN: 978-0-9868624-0-3 (paperback)
Published in Prince Edward Island, Canada, 2012
by John Holton
His mother was the first to notice that everything was not quite right. After several weeks of difficulties with breastfeeding, she detected a minor flaw which the experts passed off as a paranoid mother’s imagination working overtime. After all, he looked normal. There was no indication of the monster lurking within, but it was there, that little something, a weakness on the right side.
“Cerebral Palsy, right side hemiplegia, a classic case”. A sentence I had never heard before, but now it was our son’s life – our lives. He later manifested temporal lobe epilepsy and began to seizure regularly – as if CP wasn’t enough!
The following excerpts highlight some of the many ups and downs we all experienced on our journey…
Intro: We had come to terms with Johnny’s cerebral palsy, after all, he looked, for all the world, like any other child. Maybe they were wrong and it wasn’t as bad as we were told. Denial turned to terror on a bleak November evening when a new word entered our vocabulary. Epilepsy.
Sandra’s scream began what was to become a night of horror. She had been sitting in a rocker trying to nurse Johnny and comfort him and in an effort to cool him he was naked except for a diaper, his skin mottled with fever. What she held now was not our son, but this caricature of pain. His eyes rolled wildly, he jerked and gurgled and his lips began to turn blue. Surely, he was going to die. This was all I could think as she passed him to me and fumbled for the phone. I paced in a trance, holding this little thing dying in my arms while I did nothing. What could I do? I had never seen a seizure; happily most people never do. As abruptly as it started it stopped. Johnny sagged in my arms, limp as a rag, but breathing deeply. Beyond all of my hopes, he was alive. I can truly say that those few minutes were the longest and most terrifying of my life, at least up until that point.
Johnny started school at the normal age at the Crippled Children’s Center. This was like taking the weight of the world off our shoulders at least for a few hours anyway. He was a handful at school because he was so active and so mobile compared to a lot of the kids, but his good nature and general congeniality made him popular with the teachers. He was still young enough to be handled relatively easily by female staff members.
We entered a period of relative calm; at least it seemed calm given what we were to face later. I suppose we should have known that it was too good to last. The doctors had talked about plateaus of development and also plateaus of temperament. Well, we left one plateau and reached another. Mr. Congeniality began to show another side. He became increasingly difficult to handle for no apparent reason. Certain situations would set him off and he became angry at the drop of a hat. We tried to discern patterns, but were at a loss as to the causes of his rage. It was about this time that the first murmurings came to us about “spoiling the child,” or “giving in too easily,” you know, all the neat little phrases that make you feel that it’s your fault as a lousy parent.
Life became a tightrope act. We tip toed along trying to keep from going over the edge, but no matter what we did, Johnny would flip out and had to be restrained. It’s not that he was maliciously violent or deliberately hurtful, but he just became downright uncivil at the slightest whim, no matter where we were. He would stamp his feet and scream and then bite his hand in rage. He developed a tough patch on his left hand from these biting tantrums. He was still young enough that I was able to pick him up and get away from uncomfortable situations fairly quickly, but we began to pick and choose what we did as a family. Accordingly, we became even more restricted in our scope of activities.
Johnny’s violent outbursts could be frightening to other children and even adults but most of the time he was just this nice, friendly little kid. But, people tend to see the worst, which was sometimes frustrating. There was one time when all the neighbourhood kids were playing together in the street. A little girl fell from her tricycle and began to howl. Of course, all the others scattered for the hills to avoid any blame, except Johnny. He rushed to her side to comfort her and just then the little tot’s mother came screaming to save her little darling from the monster child. She roughly pushed Johnny away as he tried to explain his concern. She would have none of it and stomped away in a huff. I’d watched the whole thing. He was innocent. He just picked up her trike and thoughtfully pushed it over to her yard, totally unaware of the woman’s disdain. I felt like shaking her, but what was the use.
This new behaviour soon resulted in Johnny having to switch schools because he became too much to handle. The problem was that he required constant watching. He never seemed to fit the mold. Too smart for this setting, too mobile for that one…too this, too that. We danced trying to find some place where he belonged. This was the theme for us over the next number of years. It seemed that Johnny was a ‘special case’.
Intro: Over the years Johnny had spent many weeks in hospital for various and sundry reasons and I had always felt the need to be there during his waking hours. As a result, I had used up all of my vacation time from work on him. My wife Sandra and our other son, James, hardly knew what a family holiday was.
I sometimes have to wonder. What was it all about? This drive to be there all the time and the need to handle him alone seems to have been an attempt again to prove that there was nothing wrong with us as parents. This wasn’t a conscious thing. Logistically, being there for Johnny around the clock was a necessity. He needed constant watching and let’s face it, busy nurses can’t and shouldn’t have to do this. Someone simply had to be there all the time and that meant us and more to the point, me. But, besides the obvious reasons for being there, there was always that complex that I had about proving that I was OK. That somehow this mess was not my fault. See, I’m sane, I’m a good person. You don’t have to do my job. No way, I can handle this just fine. Plus, I was almost out of my mind with boredom, but I never let it show. Every time I entered a hospital I was losing something of myself and I didn’t know it. I didn’t know who I was anymore. I just did what I thought I had to do, one day at a time, like some kind of a machine.
Looking back I can see it. Thankfully, I couldn’t then. Ignorance is bliss and it kept me going. It would be nice to say that I did it for Johnny, for Sandra, for James, but I think I did it out of sheer stubbornness, but it’s not that simple. Who we are and what we do comes from a lot of things, most of which we never take the time to think about. Whatever the reason, I stuck it out and I’m glad.
Intro: When Johnny was 20, we received funding from the government to hire care workers to give us respite during the day. This gave us some relief, but Johnny had a way of upsetting the plans of mere mortals.
This system worked for a little over a year. During that time he was in and out of the psych ward at least once a month and I think he was beginning to wear out his welcome. They tried to make a safe room in the local hospital where he could stay periodically rather than sending him to Charlottetown so much. I remember the day they were showing us this new addition. Sandra and I were there with Johnny and he had insisted that we check it out. The room was at the end of a corridor as far away from the nurse’s station as possible…nice and quiet they said…hmm. A doctor and a couple of nurses pointed out the merits of this setup and proudly showed us the security measures that would guarantee Johnny’s safety and security: bars on the window and over the radiator, minimal furniture bolted down, cage over the light fixture, double heavy door and lock. I carefully examined the bars on the window and calculated that they would hold Johnny for less than a minute if he felt the call of the wild. I wasn’t impressed, but I hesitated to say anything for fear we would lose their cooperation. I stood there looking out the window over the farm fields behind the hospital, imagining Johnny hightailing it in a cloud of dust. Then I heard it…a solid click…you know the sound…when, say a solid, double heavy security door is closed.
Well, I didn’t have to worry about explaining that this room didn’t even come close to securing someone like our little Houdini. He stood outside the door with this angelic smile on his face and then he was gone as the doctor and nurses pounded and yelled for help. This was when the isolated bit came in…nice call on that. It was just a fluke that someone noticed Johnny as he headed for parts unknown otherwise we could have been stuck there yet. After that, no one brought up the safe room idea again and in some sort of twisted way I was proud of Johnny. You had to admire his panache and his unerring ability to make monkeys out of “normal” people. I suppose it justified our frustration and gave others a small insight into our sick little world.
Intro: Johnny’s surgery in Montreal was only weeks away and we were home for the holidays, a time for reflection.
We now had this bright hope in our minds and also the fear of the unknown. Any surgery is daunting, never mind brain surgery. It’s not too surprising that Johnny had a rough few weeks before the time to return to Montreal. He must have felt our concern and I’m sure he had plenty of his own. Whatever the case, he ended up in the psych ward twice over that time and every day was a trial. His usual hair trigger was even more sensitive to any blip in his routine.
Every explosion of temper was accentuated in our minds given the circumstances. Would this finally be over or was that too much to hope for? After 23 years could this really be happening, or were we just setting ourselves up for another letdown of monumental proportions this time? So many questions, so many worries, so many doubts, but underlying all of this was that shred of hope…the whole team was in agreement… “We think that we can fix him.”
Once during that few weeks when I was holding him down for the umpteenth time, rolling on the kitchen floor waiting for the ambulance, I got this glimpse of him I had experienced before, but this time it really hit me, maybe because I had let some anger take hold of me just then. I was holding his face away from me so he couldn’t spit or bite and it was as if I was seeing his whole life, not this life, but what it could have been. There was this twenty something man, my son, who should have been so much more than this writhing caricature of a person and I pitied him for everything he had lost. Those hopes and dreams we all take for granted had been denied him and I hated myself for any anger I felt. How could I blame others for not understanding him, for misjudging our attempts to control him, for second-guessing his actions?
I had had such glimpses before, usually when he was being quiet and I was watching him do some little task concentrating really hard and his left hand would shake as he tried to do whatever it was and I would notice his right hand clench and unclench as it mirrored the actions of the left. Or when I would notice his rapt attention to something on TV and I would watch how his eyes sparkled and I could see the goodness in him. This time he was anything but quiet, so maybe it was the intensity of the emotions at that moment, or the anticipation of what was to come, but it really got to me. What he could have been should have been. My tears went unnoticed in the melee.
To purchase the book ABCDEEG – A Father’s Journey With His Disabled Son, Click Here
|Select one of the following:|
OR, purchase directly from me, the author, John Holton,