My Nicky

My Nicky


         Where do you begin, when you want to express your thoughts, memories, triumphs and heartbreaks. My first son, Nicholas, Born with such tremendous challenges. We had some forewarning that there would be problems with him physically, tests several weeks before he was brought into the world showed some fluid on the brain. Ok, so we'd have some hurdles to overcome, he would have to be delivered by c-section to lessen the chances of increased pressure on his head that a normal delivery would cause. But we were not, in any way prepared for the realities.

         I remember being in the operating room when they preformed the c-section. Suddenly things went from routine to controlled chaos as the doctors realized his entire lower spine was malformed, and exposed to the outside air. He was wrapped in sterile cellophane from neck on down and rushed away. We didn't know what was going on at that point, or if we'd ever see him again. We had a vague awareness of what Spina Bifida and Hydrocephalus were, though at the time we had no real name for what was going on. It was some time later when we were informed of his diagnosis and told he would need some major reconstructive surgery right away to close his back and drain the fluid from his head.

         Time becomes meaningless at this point, I'd later come to know this feeling of numb dread well over the years. But this was my first real taste of absolute fear. Here I was 23 years old, my first son has been born, My wife was in recovery from the c-section and I couldn't see her yet. this is supposed to be the happiest moment of my life, and here I am on the verge of a mental breakdown with worry for my son, my wife, myself, and I was alone. What future did we all have? Who can take this kind of absolute terror of the unknown and carry on? Somehow I kept it all together, hovering for hours waiting for word on my son. I'll never forget when they finally brought him into the neonatal intensive care unit. I had been so strong up till then, holding my fears inside. I looked into the bassinet, and there he was, my little Nicky, pink and healthy looking, half his head shaved with a toque covering the bandage on his head from the surgery to put a drainage tube in, and bandages covering him from the chest down mostly covered in a recieving blanket. He looked so normal so small yet Not even a day old and already having had more surgury in his short time than most have in a lifetime. His eyes would open but not really focus, in that new baby way, his cry sounded normal as any I'd heard, and then I broke. I had never cried so hard in my life. Part relief, part fear for the future, part self pity, part who knows, it was all just to much and the damn of emotions I'd held in check let go. I've always been a very strong man, heck, I was a military medic, and here I was, a puddle of emotional goo. The next memory I have is being in a room with a social worker, I assume I was helped from the room, its all hazy at that point. After regaining a semblance of composure And assuring the staff that I wasn't going to make a mess on their floors anymore, I was able to go back in.

         I phoned my parents, finally got to go in and see my wife and make sure she was alright. I let her know what I knew,,which was dang little, but I faked it well, back to being a rock in an emotional ocean to all outward appearances. But inside I'd never be the same person again. I cant really explain the internal changes, Depression played a part in my life for a long time, perhaps even to this day, not perhaps the overwhelming depression some get, where life doesn't seem worth living, I'd never thought once about leaving, or ending things or any of that crap. But I think under the surface there was an ever present low grade depression, like a slight fever that just wouldn't go away. I often buried myself in books, and board games, eventually computer games, they became my safety valve of sorts, a place to slip away. Sometimes I think I slipped away to much, hindsight being 20/20, I'd have done that less, though I by no means ignored him or his needs, I now wish I'd spent more time doing things with him than I did.

         There were so many things to learn, so many special needs to attend to. Catheterization being just one of the new things we would have to learn and do, several times a day, because he couldnt empty his bladder on his own. Numerous drugs that he had to take, I was always so worried about giving the wrong medications at the wrong times, or missing doses, giving too much or too little, but none of that ever happened,I guess we were too paranoid about it to let it happen. Add braces, standing frames, and other assorted paraphernalia and it becomes overwhelming at times, but we always seems to manage it I suppose.

         He was developmentally delayed to some extent, but at 2 years old he started attending the CHEO treatment center school. He loved it, and was a bright light there, everyone loved him, he was a ham and had all the ladies working there adoring him. I remember him getting his first wheelchair and struggling to use it, Still a little to small for work it fully, but doing his level best. It wasn't long before he was zipping along, and the upper arm strength he developed was amazing. He still battled many health problems, chief among them were bladder infections. I can remember times when I'd be sleeping on the cool floor with him in the living room to help bring down his fevers. We had our second child right around this time, Chris, strong and perfect in every way. As they grew together Nicky became something of the boss/evil influence on his little brother, who would do pretty much whatever Nick wanted, like raiding the fridge for blocks of cheese (his favorite thing in the world) ok not really evil, but definitely the leader of their little criminal fridge raiding organization.

         The military posted me to Victoria, and BC had an integration policy for special needs children, whereas Ontario had a more segregated schooling stance, at least in the earlier school years. But before long Nick had settled right in without to many problems, we were so worried about how he would fit in, how all the other children at the school would accept him. It really helped that he had a dedicated teachers aid with him full time. And within a short amount of time again he became embedded in the hearts of the teachers and students. Not so much because he elicited their pity, but because he was so emotionally outgoing, friendly and overtly brave in the face of his challenges. We at home got to see the more frightened, sometimes angry side he had at times, but frustration and fear can do that, especially with someone so young, who doesn't always understand why he's different from the other kids, and cant always do the things the others are doing. At school he was always stoic in the face of everything that came his way, with a sense of humor that belied his handicaps and fears.

         There had been talk of straightening his spine for years, the spina bifida had left him with a weaker lower back and slowly over time it was bending, putting pressure on his lungs and other organs. Finally the time had come to get it done, according to the doctors. I wish I had said no to it now, but at the time it made sense.

         So off we went to Vancouver to have the surgery done. We were there for 2 weeks. He came out of the surgery 3 inch's taller, with metal rods, pins and wires throughout his back. He had to wear a body brace during the day while his back healed and he was primarily only allowed to lay on either on side of the other, sitting was only allowed for short periods at a time. Not being able to do much of anything even the least bit strenuous was very hard on Nicky. Before the surgery he had been as active as possible. Getting into every sport he could, and playing with his schoolmates. Now he was unable to do anything but watch. He now required help with every little thing, where as before he was encouraged to be as independent as his physical abilities allowed. I firmly believe he started to give up, we did what we could, but he wasn't able to do much and as time went on it got harder and harder on him.

         We finally got the ok for him to sit in his regular wheelchair for more of the day, though he still wasn't able to wheel himself around. and even sitting, which he wasn't used to anymore, tired him out easily. All that arm strength he'd built up over the years would need to be rebuilt again once he was again able to do anything physical.

         The second last day of the school year, was as normal as they get. Both our sons were looking forward to the day, there were end of the school year parties in all the classes that day. Nicky had picked out several big bags of chips to bring for his classmates and teachers. He was in great spirits and all through breakfast he was animated about the day ahead. I walked the boys to school that morning, Dropping each off at their respective classrooms, I gave them each bye hugs and kisses and walked back home.

         At around 11 am we got word that Nicky was being rushed to the hospital. He had apparently had a major seizure and stopped breathing. By the time my wife and I arrived at the school, the paramedics were just loading him into the ambulance. CPR had brought him back, but he was still unconscious and unable to breath on his own. There was to much equipment being used for either of us to ride with him, so we got a ride from a teacher to the hospital, following the ambulance.

         Nicky never regained consciousness, he stayed in a deep coma for 2 days. There was always someone at his side throughout this time. Family and friends came from across Canada to support Nicky. I don't think my wife or I slept at all during this time, and we rarely left his side. My other son, Chris, being only 8 really didn't understand all that was going on, My mother looked after him while we were at the hospital. He pretty much kept his feelings inside, the way kids will when they have no idea how to express what they feel.

         Tests showed that Nicky had little or no remaining brain function. The shunt in his head had apparently blocked, causing massive swelling and trauma. The usual signs and symptoms are generally readily apparent, he'd had a shunt failure before, and it was easily noticeable and rapidly fixed with no lasting effects, but in this instance there were no obvious signs of anything wrong prior to the collapse at school. Other tests confirmed the worst, his lungs and other vital organs were beginning to fail, his brain unable to keep these basic functions working.

         On the evening of the second day after his collapse despite the heroic measures taken by the doctors and staff of the hospital, Nicky left this world for the next. I hope to never feel the way I felt at that time again. I know its a cliche, but if I could have traded places with him, I would have in a heartbeat. A very large part of our lives was gone. And a very large hole seemed to run straight through the middle of me.

         I blamed myself for his death for a very long time. Here I was a trained medic, and I noticed nothing wrong, but I had to have missed something. I cant relate how many times I've gone over that last morning in my head. Trying to recall anything that maybe gave a sign that I should have caught. But there is nothing, and still to this day there is a part of me that blames myself for missing something.

         His memorial came a couple of days later, and as much as I knew Nicky was loved by people, it was overwhelming to see so many attend. The chapel was overfilled, with many standing at the back for lack of seating. The Padre told me that in all his years doing services here, he had seen few that brought so many people to a memorial service.

         Its been about 4 years since Nicky left us, the hole in me remains, but the edges are less raw and painful. When we talk about Nicky its a little easier to avoid the tears and remember with smiles. Almost every day I talk to him, in my mind. And I doubt there will ever be a day that I wont think about him. Time does heal wounds of the heart, nothing will ever fill the space he left, but time has eased the pain of that space. Nicky was the bravest and one of the kindest souls I ever had the privilege of knowing. I loved him with all my heart, and will miss him until the day I die. My friend, my son, my hero, my Nicky.