May 2024
By Richard Fleming

Photo courtesy of Gilberto Parada
My wife and I were awakened by a phone call at 6:03 am on Sunday, April 28. It was Cora, the manager of the care home where my younger brother lived. “I’m sorry to call so early, but Chris is not doing well,” she said. His oxygen level was dropping despite supplemental oxygen. He was not responding to people’s voices. His breathing had become a bit labored and he had been given a small dose of morphine a couple of hours earlier. We had enrolled Chris in hospice in early April because of recurrent aspiration pneumonia, dementia, and Down syndrome. While we knew his time was limited, we were not expecting this particular call at this particular time.
We should not have been surprised, since an omen appeared several hours before the phone rang. My wife’s bedside light turned on spontaneously in the middle of the night. That happened once before, 16 months ago, when another family member experienced a significant health problem. We should have known the light was turning on for Chris.
After the call, my wife and I got out of bed, braced ourselves for whatever may lie ahead, brewed coffee in to-go cups, and drove to the care home. Along the road, I called my sister, who lives in the area, to come as soon as she could.
When we arrived at Chris’ bedside, the sun was an hour above the horizon, the sky was cloudless, and the air was cool. Cora, her face grim, quickly ushered us in to Chris’ room. A hospice nurse sat at his bedside. She gave us a report on his status. He had another lung infection and it was clear his time on earth was drawing to a close. I texted our older brother in Colorado, who quickly responded he would fly out that afternoon.
Chris appeared serene. His eyes were closed and he was breathing slowly. We tried rousing him, but he made no movement. We spoke to him, telling him we were there, letting him know we loved him and that things would be OK. While he did not respond, we hoped our words would breach the barriers to the outside world which were quickly rising in his brain and provide him some sense of solace and security.
His breaths became raspy again and the hospice nurse gave another dose of morphine. His coarse breathing improved and his respirations slowed further, down to six breaths a minute for a while, then to four.
The nurse excused herself, since she had other patients to see that morning. The people left in the room with Chris were our sister, my wife, and myself. We sat surrounding him, hands resting on his shoulders and feet, periodically letting him know we were there. His breathing slowed to three breaths a minute. Then two. Then Chris took one last breath. It was deep and calm. Full but final. We waited. But he had no more breaths to take. After 61 years of a vibrant, challenging, and joyful life, Chris died.
We told him we loved him and to take care, and we asked him to say hello to mom and dad. Did Chris hear our words? Impossible to know, but they issued from our hearts more than from our minds, and had to be spoken aloud.
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A commonly-held notion is that a person does not truly become an adult until both parents die. This concept makes sense. It is only after the protective parent figures in our lives are gone that we are fully on our own.
There is a corollary idea I’m beginning to embrace: a person does not fully enter old age until they lose a sibling. It is then that we truly appreciate what old means and what old feels like. (This corollary applies to people who are at least in their 60’s, since young people can tragically lose a sibling.) I’m in my early 70s, and I know that many people in my age range have lost a sibling. But it is the first time for me. And the impact has been profound.
Losing anyone – a parent, a spouse, a close friend – is incredibly painful. Losing a child is a pain beyond any possible measure.
Losing a sibling is different. It is painful, but in a unique way. The loss of a sibling makes a forceful statement about the brevity of life. When you lose a brother or sister, it transforms you. You had the same parents. You shared countless childhood experiences known only within your family. As you grew up together, you jointly wove a tapestry of life so rich and complex it is impossible to explain fully to anyone else, including your spouse and close friends. When you lose a sibling, you lose someone who played one or more important roles in your life – colleague, comrade-in-arms, crew member, peer, competitor, confidante, friend.
Chris’ death has precipitated much reflection. He was a brother, but having Down syndrome, he was much more than a sibling. It is hard to explain, but he was always present, always there, every day of my life, even though he mostly lived with other people. In the days after Chris died, my two remaining siblings and I, along with my wife, spent hours around the lunch and dinner tables, talking, ruminating, and deconstructing our family’s ups and downs over the six decades of Chris’ life, and even the years before he was born. Many things became clearer, though there is still much to sort out. Chris’ influence on our family was profound. His life largely governed where we lived. His life impacted what we thought and felt about our family and each other. It significantly influenced the way our parents treated us. Though small of stature, his presence in our lives was massive.
Chris’ death has closed the door on some important parts of my family’s evolution. It has impelled me to reconsider parts of my past and my future. I will continue living, hopefully for many more years, but it will be without my younger brother.
I feel more like a senior now than I did before Chris died.
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All of Chris’ belongings are now sitting in our garage, in random sacks and boxes. Someday we will need to sort through them, but not today and not next week. One thing I retrieved was his eyeglasses, which I placed on top of the piano in our entryway. I see his glasses every time I walk by. Sometimes I touch them. They provide a small measure of comfort and remind me of times past, before the door closed, when Chris graced our home and our lives, smiling, and arguing, and joking, and crying, and walking, and breathing, and frequently saying, “I love you” for no apparent reason. Seeing his glasses makes me feel happy and sad. And they make me feel older, but not in a depressing way. It is hard to explain, but they help me feel more at peace with my place on the path as I navigate hesitantly into the future.

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