19 December 2014

Take these wings and fly...

For the most part, being home those first couple weeks from Canuck Place were manageable. We spent most of our time indoors as Keian rested, but we did get out every now and then to visit places Keian loved. Given the time of year, many of our visits included shopping for Christmas ornaments and looking for Christmas lights. We made our annual Santa picture appear oddly normal; both boys all bundled up in their beautiful Christmas sweaters, the sweet sound of pitter patter from the feet of my two boys as they excitedly climbed to Santa's lap. Keian always believed in the magic of Christmas and this year, I was trying so hard to live in that magic.

I wish now that I could see, really see, what was happening right in front of me. I think looking back, that I was blinded by hope; having said that, I am thankful for that. I spent my moments speaking of the future, and believing my own words. There were moments where I would notice the changes in my little boy, but my hope built a wall. A wall of protection, perhaps.

As time moved throughout December, our time spent at Canuck Place began to increase. I felt desperate to alleviate his pain. By mid December, his breathing became increasingly difficult. He spent most of his waking hours, though he was rarely awake by this point, sitting in a recliner next to us in the small living room. There were times that he would ask to go to his bed. I never allowed it, but I did everything possible to keep him comfortable. Though I always held hope, part of me felt that if he wasn't beside me every moment, that he would slip away. I had to protect him. When I wasn't up heating his magic bags, I was measuring his next dose of Hydromorphone or Fentanyl. Many times, he would wake screaming in pain, absolutely petrified. At times, as quick as it began to work, he would require more. Once the pain began to take hold, he went from 1mg every 4 hours, to 4 mg every hour. This only increased as the holiday season crept upon us.

I would lay there night after night listening to Keian breath beside me. Each night, I would hear gasping and coughing, as he tried to catch his breath. By this time, he required help to get up from his chair. His bath time, once so very much enjoyed, was few and far between. I can remember one evening when he asked me to bath him. I slowly lowered him in the tub, but almost as quick as he was down, he was screaming in pain. My once free spirited, active little boy was now unable to dress himself, unable to walk and was now in extreme pain, in order to even breathe. We made our very best attempt to keep our normal facade; our Christmas traditions of baking cookies, pajamas opened on Christmas Eve and milk and cookies for Santa. Christmas morning snuck upon us, but that once excited little boy was living inside a hollow shell. His heart was ready to burst with joy, but his frail little body could not exude this. Like every year, I sat across from his as I snapped picture after picture with one hand and took video with the other; I can remember that I didn't feel like myself. It was as if I sat hidden behind what felt like a window. A window where I was watching another family; a family suffering. I never did finish that video like I did in previous years. It was during that time I saw what was staring me in the face all along. My boy was slowly being taken from me. A dull shine was now emanating out of what used to be a bright and shining star. He was being taken; ripped from us. His once beautifully glowing brown eyes were now glazed. His skin was covered with a distinctive grey hue and his once soft, kissable lips had seemed to sink further and further away.

For the few days between Christmas and New Year's Eve, Keian would wake for now only seconds. He would make small attempts to flutter his eyes, as his brother listened to Christmas specials and screeched with delight. On December 31st, we didn't leave his side for more than a few minutes. As the day progressed, his breathing became increasingly laboured. That night, as we tucked him in, things felt different. He was struggling; not only to breathe, but to stay with us. I laid beside him that entire night, almost waiting with baited breath. I was terrified. There is often talk of a Mother's knowing, but this was the first time I truly felt this. I remember asking him every few minutes if he was ok. I woke Ryan up at 4 am to tell him something was wrong. We needed help. Throughout Keian's treatment, he was never given the option of choice. Cancer invaded his little body and this body was getting so tired of keeping the fight. His heart had fought so very hard for the last 18 months and he was never prepared to give up. It was this never give up attitude that gave us strength when we most needed it. He asked us to keep him out of the hospital for Christmas; this was one promise I would have laid down my life to keep. I kept my promise.

Early morning on January 1st, we dressed Keian for what would be our last drive to Canuck Place. I can remember watching Ryan, as he went to help Keian up from the chair. I can still hear his sweet voice; "I can do it, Daddy". I walked ahead, only to look back to see Keian being carried by his Daddy, as he rested his head on his shoulder.

When we arrived, I pushed Keian in his wheelchair up to the nursing floor. They didn't have to say anything, their sadness was in their eyes. O2 monitors began flashing and Keian's struggle was undeniable. I had hoped that nearly a year later that my memories of this day would fade, but the same time, I want to remember every single heartbreaking moment. It has taken me nearly an entire year to write this and every word that I write brings me back to that day, to that very moment. I still can't fathom how it's possible to hold such significant hope, while having that deep knowing inside your soul. I may not know how it's possible, but I lived it. I felt it. By mid-morning, his oxygen sats had gone down to the low 60's. One of our nurses came in; "this is what happens when they're dying".

I was terrified to leave his side and I refused to drink because I did not want to have to leave to go to the bathroom. My numerous short bathroom breaks over the next couple of hours would be to vomit and run to return back to his side. I laid there with my arms around him, crying into his shoulder. Please don't leave me. No, don't leave. I struggled to hold his oxygen mask up to his mouth, but by this time they said it would not help. It wouldn't help him breathe easier, it wouldn't ease his pain. But yet, I still struggled to keep it there. At one point in the early afternoon, his breathing changed. I can't quite describe the change in words. The nurse happened to be standing beside his bed. "Your breathing changed, I need to get the doctor, this might be it". It?!? What do you mean, "it?!". His pain was no longer being managed; his faced was washed with discomfort and stained with my tears. I lay with him, stroking what was left of his hair. He loved this when he was little, and even more so when he became sick. The nurse explained that his pain would only become worse and asked if they could sedate him even more; they also explained that once he has this sedation he will no longer hear us. We were left scrambling in our thoughts. I told him over and over again how much I loved him; like if I said it just one more time this would not be my reality. It took every ounce of my strength to hold him while I sang his two favourite songs; Twinkle, Twinkle little star and You are my Sunshine. When Ryan heard my struggle, he joined in. Our last time singing to our boy. Our last time.

I remember talking to him that afternoon about Ryan's mom and how she was in heaven. Ryan knew what I was doing, but I didn't realize it at the time. I was telling him it was ok to go and be with her. How could I do that? I couldn't bring myself to say those words, but I thought them. Those words may not have left my lips, but they certainly could have. How can I just give up on my beautiful little boy? I reached under his blanket to make sure he was warm discovered he was soaked. His clothes, the bed, the sheets; everything. But yet, he wasn't warm. He was slipping away.

Ryan and I lay there holding him. I hadn't slept since the night of December 30th. I had one of my arms cradled around his waist and one grasping at his shoulder, while my cheek was pressed gently against his. His breaths were short and shallow, but with each breath, the rattling became louder. I will never forget that sound. As Ryan began to rub Keian's leg, he noticed the colour change. One moment it would turn purple and the next red. The nurse stood vigil. His blood is pooling.

Keian hadn't opened his eyes all afternoon. As the rattled breathing got louder, his chest would rise and his tummy would regress. I frantically began pushing the button to administer his pain meds. I can't see him in pain anymore. I am dying. Please, please end his pain.

Keian took a huge breath in, opened his eyes and reached out into the air with both arms. As we laid them back down beside his little body, I placed my hand upon his chest. His little heart. His heart full of so much love. On January 1st at 9:15 pm his sweet, beautiful heart beat for the last time...

"Close your tired eyes, relax and then Count from 1 to 10 and open them All these heavy thoughts will try to weigh you down But not this time Way up in the air, you're finally free And you can stay up there right next to me All this gravity will try to pull you down But not this time When the sun goes down and the lights burn out Then it's time for you to shine Brighter than a shooting star So shine no matter where you are"

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