The next day I woke up and immediately checked on B. He was still here, and of course in classic B fashion his bladder was full, which meant his kidneys were working again. B had stabilized so well overnight that they attempted to give him his medications, and he didn’t reject them. He did a complete 180. Of course he did. That was B’s way. Even though his body appeared to be back to normal, his dystonia was out of control. Missing his medications for 24 hours didn’t help him at all. He laid on the bed, arms up by his head, back arched and his head was constantly wrenched to the side. He looked so uncomfortable. Dystonia would be our major concern for the next few months. Constantly trying to get it under control, to try and get him relief. He was on so much morphine and midazolam. Dosages going up every few days as he grew a tolerance to the medications. He would stay awake for 72 hours at a time. I would lay beside him trying to calm him down with my even breathing, just like I used to at home. I would run my fingers through his hair trying to soothe him. I played the song “I’m yours” by Jason Mraz, as it always calmed him down as a baby. Sometimes tactics worked. Other times the dystonia would not yield. It was so hard to watch him lay there knowing how uncomfortable he was.

The Rotary Flames House was so amazing to B, and to our whole family. We stayed in a suite attached to B’s room. It had a sitting area with a TV, a kitchenette, our own bathroom and then a bedroom attached to the sitting room. From my side of the bed I could see B’s bed. They had a cook downstairs, and he made amazing lunches and dinners. We would eat at the house most of the time, but once a week we would go out to eat, to get me out of the house for a break. They had laundry that we could use. Music Therapists came to visit B once a week. The one therapist going above and beyond, learning “I’m yours” by Jason Mraz, knowing it was B’s calm down song. They would include Eric in the music when he was visiting. We were able to celebrate B’s 7th birthday in the house. The nurses decorated B’s room and made a giant card they all wrote on. We had a party for him, complete with the most amazing Ice Age Christmas birthday cake that the social worker had arranged. Nurses that were not even on that night came to his party. The social worker also arranged for the Magic of Christmas Charity to come to see B, a month before Christmas. They sent Santa and his Elves to deliver presents to our family, and we got so much more than presents. When Santa walked in and B heard the jingle bells, he woke up from being asleep for a few days straight. He started smiling and laughing. We hadn’t seen any emotion from B since before we went into the hospital in the end of September, and now on November 20 he was laughing. I will always be grateful to the magic of Christmas for giving us the gift of Brady’s last smile, and his last laugh. The Rotary Flames House took such good care of us. They always included Eric in any of the activities going on when he was there. Eric was always excited to play with the “Red Shirts”. He was referring to the volunteers who wore red vests. I think the highlight for Eric was when a couple of the Calgary Flames came to visit, and even though B slept through it all, I like to think it was a highlight for him too.

The doctors came in 2 times a day, once in the morning and once around 4 or 5 to see how B was doing. They always asked me what I thought. They valued my opinion, because I knew B. I knew the slightest sign if something was off. They never treated me like I had no clue. They were so supportive. And the nurses, I cannot say enough about the nurses. I looked forward to seeing who was going to be B’s nurse for the day, and of course which aide would be helping. It made it so much easier seeing how they treated B. They treated him like he was their own child. One aide called B her “little monkey” and another nurse always said he was her boy. Even one the house keeping staff always had to come and check in on B. They all remembered the B that was full of hugs and kisses, and so much love. They all had a soft spot for B. The nurses were very good at making me get out of the house too. When Eric had hockey or his play school Christmas concert, they would always reassure me that everything would be ok, and they would call if there were any changes at all. It was always hard to leave, but Eric needed me too. It was important that I made an effort to make Eric’s life as normal as I could. I was always being pulled in 2 directions.

We had come to the Rotary Flames House on October 8, 2015, and it was now into December. B had deteriorated so much in those 2 months. The he would go through times where he would barely shut his eyes for a week straight, and then we wouldn’t see his eyes for a week. He was starting to lose weight. I remember watching the nurses reposition B. His legs were so skinny, and lifeless. His color had gone from a healthy pink, to a sickly pale, and now he had a green hue. The skin around his mouth was starting to turn blue. We were living day by day again. Christmas Eve came and B went into shock again. He started throwing up straight bile, I had never seen a color like it. We thought it was Christmas day that he was waiting for. I remember looking at the clock at 9:15 pm as he was struggling and telling him only 3 more hours until Christmas. Then midnight came. He made it to Christmas, and he stopped throwing up. The nurses wheeled a bed in along side his bed so we could sleep beside him. We slept beside him every night for the rest of the week.

That week spent as much time as I could with B, as I had done for the 3 months before. I would listen to music and lay beside him or sit by the bed and hold his hand. When Jordan was done work, we would sit and watch TV beside B and when we went to sleep, I would sleep next to B holding his hand.

New Years Eve came, and I feel so guilty because I was upset. I was upset that I was missing my grandma’s funeral because we were still in the Rotary Flames House. I couldn’t understand why B was still fighting so hard, why he was hanging on. I felt like it was never going to end. He had been sleeping non-stop for the last few days. His breathing was quick and shallow, but he looked like he was sleeping peacefully. We spent the day and evening watching movies beside B. Spending as much time holding his hand as possible. Midnight came, and Jordan had brought in a small bottle of sparkling cider. We found a count down and celebrated at midnight with a kiss and a drink. The nurses came into B’s room, they had sparkling apple juice in fancy plastic cups and new years hats. We all hugged and celebrated together. I can’t remember why, but we were all laughing really hard. It was like an energy came into the room, and we all felt it. We all said Happy New Years to B, the nurses went back out to the nurse’s station and we went to bed beside B again. I said goodnight as I had for the past 3 months, fully expecting to see him in the morning. We went to sleep at 1. I woke up at 2:40, and I remember looking up and B’s eyes were open, and I thought “that’s weird that he woke up now” but my body wouldn’t let me fully wake up. My eyes wouldn’t stay open and I was back asleep. 5 minutes later I woke up again and saw the nurse standing beside B. She said she hadn’t seen him take a breath in a minute and I knew. He was gone. She left the room to give us time. My first thought was “NO! Please NO! come back, you can’t leave” I had been telling him for months that it was ok, that he had to do what was best for him. And now he was gone and all I wanted was to have him back. I would have stayed beside him in the Rotary flames house forever. I would have taken care of him forever. It wasn’t fair. But then I saw him laying there. And he was so calm, he was so peaceful. No more pain, no more suffering. Although I was heartbroken, and inconsolable, I was happy for him. He was free. I have never been prouder of anyone or anything.

The nurses came back in and gave us hugs and expressed their deepest sympathy. The nurses we had just celebrated with 3 hours before were now embracing us in hugs and crying along side us. I had to let Brady’s dad know, which was not an easy call to make. He and his girlfriend were able to get to the city quick, and we all spent the next few hours sitting with B, talking and crying. Telling all the good memories we had. The funeral director came to get B around 8. I will never forget how cold B got in that time. I kept watching him to see the rise and fall of his chest, but it never came. The nurses got him ready to go. The covered him with a beautiful white blanket, and we all said our goodbyes. The funeral director wheeled him out of the room. I couldn’t breathe, I still can’t thinking of that moment. That was the first time I had no clue where my son was. The first moment I was not in control of him or his care. That was the moment I had to let him go.

B was such a gift to this world. He was Perfect. In his 7 years, he had never once been spiteful or mean. He had never been greedy. He loved with his whole heart. He taught me how to live in the moment, how to enjoy life because at any moment it could be gone. He taught me about strength, perseverance and determination. He taught me how to love and be loved. He taught me how to be brave.

I believe we all have a purpose on this earth, and I think B accomplished what he needed to in the 7 years he was here. I am BEYOND honoured that he chose me to help him along the way, and now its my turn to help kids just like him and the families caring for them.