As published in the Globe and Mail Friday, June 26, 2009
At a Hospice, My Grandson Died a Peaceful Death
My grandson Ryder had been admitted once again to BC Children’s Hospital with life-threatening complications of Charge syndrome. He was just over 1 1/2 years old and this visit would change his life and mine forever.
Children with Charge syndrome are born with life-threatening birth defects, including complex heart abnormalities, breathing difficulties, impaired swallowing and hearing loss. They spend months in the hospital and undergo many surgeries and other treatments.
My daughter Angela and her husband Gary had made the painful decision to end the struggle to keep Ryder alive. He was to move from clinical treatment at BC Children’s Hospital to end-of-life care at Canuck Place Children’s Hospice in Vancouver.
That day at the hospital, a doctor and counsellor from the hospice held a family meeting to gently outline the care Ryder would receive during his final days at Canuck Place. Ryder would be kept comfortable and pain free and would have round-the-clock care.
I left the meeting with a feeling of deep, impending loss. Though Ryder was still with us, I knew the special times we had together would soon be over. I still cherish the hours I spent with him at the hospital in the early morning, the two of us alone in his room with me reading to him – not simple children’s stories but Moby-Dick and later The Chronicles of Narnia . I read Ryder one chapter a day of Moby-Dick until it was finished, but he didn’t stay with me long enough to get through even half of The Chronicles of Narnia . That book still sits in my home, bookmarked at the place where I was no longer able to read to him.
On some of my visits to Ryder, Angela was with him and I would send her away, ostensibly to give her a break. In reality, with her not there I could speak to Ryder openly and from my heart. I would tell him not to be afraid and that he would soon be in a much better place. He would be free of pain and joyous. I would silently sit beside him and rub his little back until he fell asleep or stopped fussing. Although he was deaf, I knew he “heard” every word I spoke to him, be it from the pages of a book or my own thoughts and feelings.
At Canuck Place, I would no longer see Ryder undergo his many painful injections, nor hear of more invasive tests and surgeries with unpronounceable names. No more ventilator to take over the role of his lungs. No more heartache after ineffective surgeries that vainly took parts of him away to make him whole. There were times Ryder had in and on him so many tubes, wires and monitoring devices, I was not able to hold him. I was helpless to protect him from all the procedures and interventions to keep him alive and my heart cried out, “Enough, let him go”
Ryder was admitted to Canuck Place four times in the last six weeks of his life, yet somehow he always seemed to rally on his own. Inevitably, he had his final relapse and returned for the last time.
Canuck Place is a four-storey heritage building in a quiet residential neighbourhood. It’s surrounded by a beautiful, peaceful garden that reaffirmed the beauty of life and served as a place for reflection and emotional safety each time I visited Ryder.
Walking into the building, I felt transported back in time 50 years. Stained-glass windows, alcoves for quiet reflection and wood wainscoting created a remembrance of quieter and simpler times. It was in this setting that I did my grieving for Ryder and his imminent passing.
As I walked into Ryder’s room to say goodbye to him, I noticed a small table in the corner of the room with a single candle burning in his honour. I waited with his other grandparents and his big brother and sister in a large room as nature took its course with Ryder, freeing his perfect spirit from this imperfect body. Finally, he was living and dying on his own terms.
The doctor and counsellor came into the room several times during his last few hours, making sure he was comfortable and his parents were holding up.
It wasn’t long until Angela said, holding him in her arms, “He has stopped breathing.” There was no need to ring a bell or send someone to find the doctor, no paging, no waiting until staff could free themselves up to come to him. They simply appeared by his side.
The doctor warmed her stethoscope in her hand, placed it on his little chest for a few moments and said he was gone. The counsellor touched Angela’s hand and told her to take as much time as she needed to say goodbye.
We each had a few moments to hold him and say our own silent farewells. Later his mother took him, undressed him, wrapped him in his favourite blanket and laid him out on the bed that had been prepared for him.
Acceptance and peace came over me at the moment of Ryder’s death and stay with me to this day. My time for grieving was over and now I would task myself with honouring him. I had mourned for Ryder while he was alive, yet always took comfort in knowing that this little person lying before me knew of no life or state of being other than what he was in the moment.
As I left, Angela was saying to him, “Ryder, it’s okay for you to go now as Mommy and Daddy can look after themselves. Your work here on Earth is done.”
Dwight Hooper lives in Surrey, B.C. He also participated in the 2014 Adventure Challenge.