Hauling myself out of bed, I am met with the roaring sounds of the frigid North winds blowing in. I was dreading going out in that. Almost 5am. I had to get going. We had an appointment at the hospital and had to leave by 845am. Jason’s left eye had a swelling again. Jason had been home from the Neuro-ICU for 11 days.  For the first week back home, swellings, low blood pressure, low oxygen output (anemia), and seizures made for a very stressful week. Thankfully Jason began to do better allowing Jason’s 32 staples to be removed. These staples were in much longer than intended due to the recovery complications. As a result, the staples were not easy to remove. The neuroscience nurse had never met a patient quite like Jason. She remarked that anyone else would have been screaming from the pain. Jason remained quiet and focused. Once again the word ‘STOIC’ was in the room. Over the following days we went to Jason’s favourite computer and music stores so all was looking good, until yesterday…a persistent swelling around his left eye again. Dr.B. said to bring him in.

Fifteen horses were waiting. I was physically exhausted.  Yesterday it had snowed 20cms of wet heavy snow. My body was sore from trudging through it, and from repeated bouts of shovelling trying to keep the snow away from the barns. It was the kind of snow that when you swing your shovel to dump the snow elsewhere, it sticks, doesn’t leave the shovel, and the weight of it almost rips your arm out of your arm pit. I had already done a number on my back over the past few days by lifting soggy wet horse blankets, each one weighing a ton.

Stepping out of the house, the shock of cold air bites my face. I hear the convoy of salt trucks and snow ploughs on the road. The temperature had plummeted overnight to -30C with an added vicious NW wind-chill. Indentations in the snow from horse and human were now frozen solid, making the walking treacherous. Hips, knees, and back insisted on having a bossy conversation with me, not wanting to co-operate on heaving me back up into the tractor cab. I was feeling beaten, completely defeated, wondering how I was going to get through the work that had to be done. Fortunately, I always somehow managed to get it done. Knowing that there was no option; we depended and needed my income, I had to get back into the house before Jason woke up… were the sure catalysts.

By the afternoon we were back home from the hospital. Jason was on a new course of steroids. Weary and tired, we were all relieved to plonk down in the living room. There was no talking, no TV, no music, just the faint humming noise of the fridge and Jason’s steady breathing as he slept on the couch-his inhale and exhale evenly spaced, rhythmic, causing my eyelids to feel heavy. An odd rustle of newspaper came from the other couch as my Mum turned the pages. A quick intake of air from my Mum grabs my attention. A headline had jumped out at her, halting her breath. This day, February 8, was the 25th anniversary of one of the worst train disasters in Canadian history. Twenty-three people were killed in a collision between a freight train and a passenger train near Hinton, Alberta on February 8, 1986. Conor, my Mum’s only son, my only sibling, Jason’s only Uncle, was one of the 23 people killed. Here in the paper was a descriptive article with disturbing pictures and testimonials of the horror that happened in the passenger car that Conor was in. Conor’s train was hit head on at full speed by CN’s westbound train.  On Feb.8, 1986 our lives were traumatically altered and forever changed. The death of my brother is a constant thread that weaves through my life. The shock and devastation is easily accessed from my mind. Walking on the train tracks…coming upon the sight of complete disarray and destruction, the sounds, the smells, forever engraved in my mind. Conor, age 23, was robbed of his life, his bright future of getting his degree, getting married, having children…. My Mum was subjected to the worst shock and trauma imaginable. Now, here is my Mum lying adjacent to her grandson, having flown over from England to be here for his surgery and recovery.

As a distraction, I glance through the window meeting the empty white fields. The unforgiving wind is whipping across, forming a hard icy crust on top of the snow. A desolate feeling washes over me. Gazing back over to Jason, getting lost in his angelic face poking out from under his blankets, his half-shaven head revealing evidence of intrusive entries, I felt powerless. I look over to my Mum lying down on her couch. Newspaper now on the floor. Again powerless. In that moment, I felt like the three of us, in this small lone farmhouse, were fighting all elements. The fierce winds gusting around us, the house creaking from winter’s grip combined with the illness, worry, and grief that was present inside this room, at this moment ,covered me with waves of oppression. Having to live watching your child fight for his right to live is unacceptable. Living life with the horrible images and sadness of my brother dying is unacceptable. Living life seeing my Mum struggle with the overwhelming grief of the loss of her son is unacceptable. Each and every day my task is to master the skill and learn to accept the unacceptable.

Jason wakes up-his face lights up with a smile …”is it ready?” The comforting smell of rice pudding in the slow cooker was wafting in. This was Jason’s favourite-I could never make enough of this for him. Watching Jason enjoy the rice pudding with a keen appetite, and then ask for a second one, gave me great satisfaction knowing he was getting the much needed calories. This feeling brought me back to the present. My other feelings went underground. While chatting and joking with Jason about ‘Nurse Rhodes’ being back on duty, I handed Jason his various pills followed by cleaning his incision, checking for any swelling or redness, checking his temperature and checking his blood pressure. Jason’s wit was in good form as he chatted back to me.

The gift of humour from down the line of Irish and British generations is a godsend. We are all able to have a good laugh at exaggerated scenarios which seem to lighten the scenario we are actually in, even at the most difficult times. It has been our saviour. For me, it has been that, along with a glass of wine at the end of the day. The day I read that ‘a glass of red wine a day is good for the heart’, I was in. Of course, I missed the part where it said a 6oz glass. Most nights I enjoy a glass of wine or maybe two. I look forward to it, the full-bodied taste and the elegance of sipping the wine. My one luxury. I have noticed though,that over the years, my wine glasses have got slightly larger !!!!! A funny thing happened the other night. My Mum came into the kitchen and asked me for a straw which I assumed was for Jason…he likes to drink his Ensure drinks with a straw. I gave her a blue bendable straw that J likes and my Mum picked up the open wine bottle off the kitchen table, stuck the straw in, and drew back. Brilliant!! It was a much needed light moment in amongst all of the turmoil. We had a great laugh over that.

I was searching for Dr.B’s face amongst the flurry of activity and energy on the other side of the doors. Identically dressed humans, blue scrubs, caps, and masks, just various heights giving them an individual identity, all walking with a seemingly urgent purpose. Shock waves ran through my body realising that all of this was to do with Jason. I remembered Dr.B. saying that it was best to book Jason’s surgery after the holidays. The A-team will be all refreshed after Christmas vacation and will be at the top of their game. This recollection brought me some comfort. Jason had the best possible chance for a good outcome.

Jason and I waited on the other side of the doors. My eyes dreading the movement of the clock’s minute hand as it got closer to 8am getting Jason closer to entering the OR. Jason lying quietly, IV monitors calmly beeping, his aura bright, his whole being focused on what was ahead. Holding his hand, reassuring him, telling him that everything will be ok, I prayed myself that it will be so. My mind, fighting to win over the insistent urge to vomit, the body to faint, the tears to burst, was applying everything within my power not to show any signs of worry in my face. Stay light. Keep it together.

I knew from my talks with Dr.B. that anything could happen…a bleed out, a stroke, paralysis, permanent damage to speech, vision. The plan was to sneak into the brain and tease the tumours out without the brain knowing, to find the right path sneaking around without triggering alarms. The acoustic neuroma tumour compressing Jason’s brain stem, pressing on the 7th and 8th cranial nerve, was a formidable adversary and fighting it was always a battle.

People sent messages that they would be praying for Jason…all positive vibes and thoughts coming through the channels to Jason. Jason always liked to hear about that and he was genuinely thankful and he felt the support. Over the past few months Jason had started praying, whether in the house or when we were in the truck. He was praying for nothing to happen to his eye. It would stir my heart watching the way he would put his hands together. Carefully, with deep concentration, Jason would line up his hands in a prayer position placing his thumbs up against his chest. Palms were firmly and evenly pressed together, the fingers together straight up with fingertips perfectly level.

Jason had a very keen interest in spiritual meanings and rituals of different cultures ever since he was little. Jason was particularly intrigued about Ancient Egyptian and Native Indian ways. This was now passing onto Catholic religion.

The doors swung open, ‘We are ready for Jason now’. It was like time had stood still and that moment was all there was. I felt like I had dropped through the floor. It was the lead anesthesiologist that we had spoken with earlier that had now returned for Jason, accompanied this time with a couple of OR nurses. He was really nice and gentle with Jason. He had previously explained to me about Jason’s set up, the intra-arterial line in the wrist artery for continuous blood pressure monitoring during the surgery, and a deep IV line “central line” for more detailed monitoring of the cardiovascular system.  I gave Jason a hug and kiss telling him I would see him soon and the rest of the family are waiting downstairs and we will see him when he wakes up.

The double doors were propped open and Jason gave me a final wave as he was wheeled around the corner. Standing there numb with no desire to move, my eyes through the blur recognized a movement in blue. I sensed a familiar stature coming towards me. It is Jason’s vital team member, the man he is depending on, Dr.B.

I walk up to him and firstly exchange in silent language. I then asked him did he have his run this morning. Yes, he had. That’s good said I. I knew this was difficult-could it be that the next time we meet like this, would be to tell me bad news about Jason. I told him that Jason was in the best hands and whatever happens, risks were there for anything to happen/go wrong, that I knew this,and I was ok and aware. I wanted Dr.B. to go in without any ensuing guilt of responsibility if the unexpected happened. I could see the concern in his eyes but he oozed confidence and he was our man. Acknowledging that yes I was carrying my cell phone, I wished him a successful surgery… the doors began to close. Surgery was scheduled from 8am until 3.30pm. Pacing was about to commence.