Aaron’s story: Saying goodbye

Heather Cooke is Aaron’s mother. She lives in Kingston, Ontario and has had a diverse and interesting career at Queen’s University in several faculties for 40 years. Heather’s relationship with her son was always her passion. Aaron was not only her child; he became her best friend. Her life was full of her work; her grandchildren; travel with her husband; and much joy; until Aaron was diagnosed with stage IV colon cancer February 28th, 2019. In putting to paper the powerful and very personal story of Aaron’s end of life, Heather is longing to bring the fear of untimely death and the grieving process more fully into the light. 

Part III

Sleep did not come to me that night. Although Cynthia knew I was there and waiting to be called upon, she and Aaron spent the very long, painful night together. Aaron had several weakening moments; pain; and unconsciousness. When he could, they began to plan the process of Aaron needing to let go.

At 5:30 a.m., after very little sleep, I got up and headed into the shower. It was quiet upstairs and I trusted that was a good sign. In the kitchen, I looked for coffee to brew and waited. Avery, our early riser, was up first; and we discussed what a Grandma breakfast might look like this morning. Shortly thereafter, Oliver joined us and we busied with breakfast. Both boys were enjoying their food at the counter when Cynthia came downstairs. She looked exhausted.

Cynthia hugged the boys and then told us that “daddy” had a very difficult night and although finally sleeping, was not doing well. She explained that Aaron might not make it through the day, and that she and daddy probably would call the medical team today. The boys pushed their breakfasts away and bravely but sorrowfully absorbed the news. For the past many months, Aaron and Cynthia had been preparing Oliver and Avery for the inevitable. The conversations were open and honest. Aaron and Cynthia believed it most important that the boys know daddy was going to have to leave them because the cancer had spread too far. Aaron and Cynthia had also spent many hours preparing the boys to understand that the choice Aaron had made in accepting the assisted dying support meant that he would be able to stay at home with them, and that they would be able to say goodbye to their father on his terms. The family of four had shared this reality and had woven it into the fabric of their last few months together. How difficult these months had been and yet how close a family they became as they approached the inevitable. Amazingly, the family continued to embrace humour during those months and often joked together. The love in the home even as Aaron weakened and suffered during the late summer was contagious. His anger at the pain and uncontrollable injustice of his situation would cause him to lose his temper often, and yet the boys and Cynthia mostly were able to understand the anger was not directed at them, but rather at the helplessness of Aaron’s deteriorating health. In the last few weeks Bill and I spent individual time with Oliver and Avery, as they were encouraged to visit our place more frequently. The boys honoured us with their trust during those visits and we had several heartbreaking conversations with them. We all knew today was coming and yet we had longed for some miracle. So, on this Sunday morning, Oliver and Avery were prepared as best children can be. The boys expressed their sorrow, and then thankfully they were able to distract themselves with their computer games.

Aaron had managed to finally get some sleep and the day began quietly. It was raining outside. For weeks, we had experienced beautiful late summer weather, but today, Aaron’s last day with us, dark clouds filled the sky and the rain soaked the earth.

Bill arrived with coffee in hand, and one especially for Aaron. Closten and Nancy were not far behind him. Everyone was briefed on Aaron’s difficult night and the fear that he might not make it through until Monday. By this time, Cynthia was dressed and Aaron was awake insisting he was coming downstairs to join us. Cynthia’s terms were that he must be able to shower and dress firstly. With her help, Aaron did just that.

When Aaron came down the stairs to join us, he filled the room. He wanted a McDonald’s coffee, and so Bill informed him that he had one waiting for him and it just needed to be warmed up. Aaron made it clear that today of all days he did not want a microwaved coffee. On cue, Bill headed out the door to get Aaron a fresh McDonald’s double/double. It was during this time that Aaron settled onto the couch in the sunroom with just his father and me. He had his iPad in hand, and he proceeded to open a Star Wars game app that he played religiously each morning. I sat beside him and his father across the room. After a few moments, Aaron looked up from his app and quietly shared with us that he had no idea dying would be this painful. It was the only time throughout the day that Aaron mentioned the severity of his pain to me. The morning passed quickly with the boys in and out of the room; Aaron enjoying his fresh coffee and our familial conversation. As we approached late morning, Aaron asked me if I had remembered to bring his childhood photo albums, as he wanted to view them with us. I immediately owned I had forgotten, but that Bill and I would head home, retrieve them, and pick up some takeout lunch for everyone. I had no sense that this would be the last time I would see Aaron downstairs among us this way.

The rain had intensified throughout the morning and as we drove to our home across the city, I could not comprehend why people were out and about on this sorrowful day! We quickly gathered the albums and photo boxes and then made a quick stop to pick up lunch.

Re-entering Aaron and Cynthia’s home, we knew something had changed. Closten and Nancy were in the living room looking very shaken and Cynthia and Aaron were not present. Aaron had taken a turn for the worse while we were out and had asked to go back upstairs. His legs were failing him and although he made it to the top of his stairs, he collapsed in the hallway just outside his bedroom. Cynthia managed to catch him as he collapsed into a seated position with head in lap.

Aaron was unconscious for a brief period and during those moments, Cynthia was not certain he was still with us as she could not get positioned under him to get a pulse. When Aaron regained consciousness, he joked with her that he had not quite made it either to his bed or beyond. Cynthia asked if she could get Aaron’s dad to help him back into bed, but he soundly rejected the offer and instead when he realized he could no longer walk, he “bummed” it across the bedroom floor and with only Cynthia’s support, managed to get into his bed. Cynthia got him settled with necessary adjustment as they suspected Aaron was not leaving his bed again that day. Aaron did not.

When Cynthia rejoined us in the living room, I asked if I could go up to Aaron’s room. Upon entering the room and seeing my son, I knew we were going to be saying goodbye. I asked permission to climb onto the king size bed with him and, grinning, he agreed. For about an hour, Aaron and I were alone together. Aaron’s voice was strong; nothing in the way we had always connected changed that afternoon.

He explained to me what had transpired while we were out of the house and how when he collapsed outside the bedroom, he had been dreaming. The smile on Aaron’s face when he shared assured me that the dream had been profoundly peaceful. I never asked him about the content. One can only imagine what conversation might unfold between a mother and son who have shared so much understanding, trust, friendship, and intense love as Aaron and I had in his 42 years. Not surprisingly, Aaron confirmed what we both knew that in the lead up to this day, he and I had shared everything we needed to. How true that statement was. As my tears overflowed, I shared from my heart how much he meant to me as he too began to quietly cry and we sat close in his bed holding the moment. Aaron then confirmed that the assisted dying team was on standby and the call would be made this afternoon.

Knowing that neither of us wanted to waste these last hours sobbing, I asked Aaron to share the highlights of his life with me. He grinned and said, “I know you think it would be the birth of Oliver and Avery, and those were precious moments, Mom. But in actual fact, I have two highlights that outweigh those moments.” Being a father had never been Aaron’s dream job, yet being a father completely changed Aaron and all that he became was influenced by fatherhood. However, the two moments in his life that he shared with me were the four-month trip he took with his best friend Luke to Europe; then Egypt (where he met his father and me for a two-week vacation) and then on to South Africa to rejoin Luke and his family. And the day he met Cynthia and, in his words, “he knew she was the one, the love of his life.”

In that precious hour, we also talked about a tattoo I hope to receive and what that might look like. A heart with his name and birthdate imprinted, and he gave me advice as to who should do the artwork and where best to imprint the tattoo. He talked to me about the anger and hurt he was still carrying over work-related matters just prior to his cancer diagnosis and throughout his illness. Aaron shared anger toward a close childhood friend and the breakdown and sorrow over not having time to heal the situation. And he talked about his close friendships and how important they were to him. How each friend had provided him with love and had supported him in their own unique way. And we talked about who he might like to reach out to this afternoon to say goodbye. Ultimately, later in the afternoon with Cynthia’s help, Aaron was able to say goodbye to his friend Luke. During our moments together, Aaron never expressed fear at the inevitable outcome to the day. Sorrow absolutely; love completely; a need to express anger at situations left unsettled; but never fear.

When Cynthia joined us and asked how we were doing, Aaron shared with her much of our conversation highlighting his two most precious moments and joking with her as to how only his mom would be asking such questions today. He also assured her that I had successfully managed to bring him to tears. I left them, and the boys joined their mom and dad for their time.

At approximately 3:30 p.m., we rejoined the family in the bedroom and were informed that Aaron was ready for Cynthia to make a call to the “team.” Aaron asked for the photo albums and childhood pictures to be shared. Cynthia came back into the room and informed Aaron the team would arrive for 7:00 p.m. Aaron smiled and said something to the affect of “that soon?” However, when questioned by Cynthia, he agreed he was okay with the timing.

We all participated in the photo album exchange with the boys and Cynthia on the bed with Aaron and the four parents passing pictures and albums around the room sharing many delightful memories of Aaron’s childhood and early adult life. Eventually the boys began to tire and wander off, and ultimately, so did Cynthia and Bill and Nancy. Closten and I had a brief time with Aaron alone and he shared with us that he had been preparing for this day for 18 months. His father asked him what he had expected of the day, and Aaron quietly owned the day was unfolding as he had planned.

As the afternoon began to slip away, the rain let up and the sun broke through the clouds. The boys were beginning to grasp the reality of how little time we had left with Aaron. Bill and Nancy persuaded them to go out for a walk to help them. It was during this late afternoon that Closten, Aaron and I shared our final precious moments with our son. Our conversation was full of memories and highlights of Aaron’s childhood. We relived so many precious moments together falling comfortably back to a time where we three had been family.

With the boys back from their walk, we knew the clock was ticking too quickly. Aaron was tiring and closing his eyes more frequently, taking in the conversation around him. The boys were becoming tearful and, back in bed with their father, he was snuggling with them.

Close to 7:00 p.m. I was sitting beside Aaron’s bedside and realized he had not yet shared the plan, and what if any instructions he needed to give us. When I asked, Aaron replied: “Do you not want to be in the room? I always assumed you did.” My heart filled. He then quietly explained to me that he and Cynthia had prepared the boys to be present to watch daddy say goodbye but that they had also informed the boys that it was their choice. There was no right or wrong and that the boys should decide for themselves. Aaron then asked that if one or both boys had to leave would I be willing to follow them out of the room and comfort them. It was in this moment I realized how fully Aaron had courageously planned all details.

What I recall of the 7:00 p.m. hour was that we were all in the room with Aaron, and he was quietly listening to what was very much “family conversation” when the doorbell rang. Cynthia went to answer the door and when she returned, Aaron said that he wanted some more time with us.

The team came in and did the preparation and then left the room. During this prep, I had a moment with Oliver and Avery and reiterated to them what their parents had been sharing with them for several weeks; that there was no right or wrong in their decision. Both boys were firm in that they needed to stay with Aaron.

We all re-entered the room. Cynthia and the boys climbed back onto the bed with Aaron. I took up my post by his bedside and Closten, Nancy and Bill stood around the bed.

Aaron began to speak. He told us he had a couple of songs he wished for us to hear. The first was “Let It Be” by The Beatles. He asked Alexa to play it for us. The song began, and Aaron asked for the volume to be turned up. For some reason, Alexa did not automatically increase the volume. Aaron asked me to turn up the volume and, through my tears and clumsy fingers, I kept turning the audio system on and off. Sighing deeply, as he so often did when he was amused, he asked Avery to help Grandma to turn up the volume. And “Let It Be” began.

When the song ended, Aaron turned to Bill and Nancy and expressed in his words how grateful he was to have had them in his life, and how much he had grown to love them. Nancy went to Aaron firstly, thanking him and saying goodbye. Bill followed her and the force of the embrace these two men shared was breathtaking. Aaron then turned to Closten and me. He expressed gratitude and love for us and all that we had been to him as parents. I went to my son firstly, reminding him one more time that when the lights of pure love went on for me as Aaron’s “mom” he lit up the world, he was my everything. Then Closten approached his son, asking “Are we okay?” Holding his dad closely in his arms, he reassured his father twice that “We Are Okay!”

Aaron turned to his Oliver and Avery and he told them daddy had put aside a significant amount of money that he wanted them to spend on whatever fun items they could wish for. He reminded them that they had been the best boys ever. Through his tears, Oliver said he would give trillions of dollars to keep daddy with them and Aaron gently affirmed that he too longed for that to be, but it just was not possible. All this time the boys, Cynthia and Aaron were holding each other. We the parents had stepped away from the bed.

Aaron then turned to Cynthia: “One more song, ‘Come Away with Me?’” Cynthia replied, “Our wedding song.” And Nora Jones was played.

It was time and the medical team quietly came back into the room and began administering the drip. Aaron turned toward his family and, as his head began to sink into his pillow, he said “It is working. I love you, I love you.” The courage, the energy, the love filled every corner of that room, radiating from Aaron and back to him from us.

Although I then left the room to follow Avery, Bill shared with me later that Aaron’s last words were “I am okay. It is okay.” Cynthia subsequently shared with me that she was holding Aaron when she felt the energy leave his body.

Avery ran from the room and, as promised, I followed him downstairs. This courageous little boy could not handle any more intense emotion. He and I shared moments of calm with a drink of lemonade and hugs. Then he asked to go back upstairs. In the hallway, the medical team of doctor and nurse were quietly crying together. Oliver emerged from the bedroom and I took both boys into the bathroom to try to comfort them. Oliver’s distress was palpable, and when Cynthia joined us, the boys collapsed into her arms. They needed their mother.

In the hallway, Closten, Nancy and Bill were leaving the room and Closten embraced me sobbing. We held each other and I whispered to him that we had done what Aaron needed and we should be proud.

I knew it was now my time to go and be with Aaron. For the next hour or so, I sat with my son talking to him; crying over him; stroking his arm; kissing his forehead and saying goodbye. At one point Cynthia re-entered the room, took his wedding ring off his finger and placed it on a chain around her neck. She thanked me for staying with Aaron so she could care for the boys.

During that final hour of being with Aaron, my heart was overflowing with the deepest sorrow I have ever experienced. And yet there was such a sense of calm, such a sense of love, such a sense of beauty. His body remained as if he were deeply sleeping; finally released, finally at peace.