I would like to tell a very personal story today about my son who died. Friends have told me: you should write about this. But until now I have had had a hard time writing about it. It is a sad story, and I was not quite sure how to express my sorrow and my grief without making it seem maudlin or morose. But this week some of my writing friends have urged me to try to write about it and about him, so that others can hear the story of my sorrow. Here is my attempt to do so. Thank you for reading it and for being with me through this passage of remembering him.
Here is a little about my son: he was born in 1983, he grew up an artist – drawing all the time – and his college degree was in fine art: a B.F.A. in painting. His senior thesis work was multimedia portraits using cast-off clothing and white latex paint to make collage-like portraits of men and women, and even groups of people. (I’ll try to post a photo of one of his pieces later on.)
He supported himself and his family as a free-lance web designer through the early 2000s. He had a daughter who was born in 2011; she was two when he was diagnosed with lymphoma, three when he died. He also did a “horse-whisperer” sort of horse training – based on behavioral modification and communication – and he coached young snowboarders for several years at the nearby ski area. He liked to play music on a ukelele, he went mountain biking, camping, and he was a runner.
The first thing I would like to share is a poem that I ran across shortly after his death, a poem that really struck me as something I would like to say to him, if I could.
by Daniel Ignatow
We’re not going to die.
We’ll find a way.
We’ll breathe deeply
and eat carefully.
We’ll think always on life.
There’ll be no fading for you or for me.
We’ll be the first
and we’ll not laugh at ourselves ever
and your children will be my grandchildren.
Nothing will have changed
except by addition.
There’ll never be another as you
and never another as I.
No one ever will confuse you
nor confuse me with another.
We will not be forgotten and passed over
and buried under the births and deaths to come.
Here is what I wrote a few days ago about my son and his death:
She had a son who died. She had a son who died and was a kind kind soul. She had a son who died and was a kind kind soul and who loved her very much. She had a son who died and was a kind kind soul and who knew what it was like to have a mom like her. She was the kind of mom who made chocolate chip cookies and yellow cupcakes, who wrote science fiction and went skiing with him. She was the kind of mom who celebrated the poem of his life and who brainstormed with him about the possible world. She was the kind of mom who built Legos with him. He wrote his own stories because she did.
She was the kind of mom who did four loads of laundry for him – washed, dried and folded – the night his daughter was born. She was the kind of mom who drove him to chemotherapy appointments and stayed with him in the eerie infusion room for the most-of-the-day treatments. She was the kind of mom who sat with him in the hospital room for six hours while he took a blood transfusion when his own blood became too weak from treatment. She was the kind of mom who went with him to the appointment when he had to talk about the blood-thinning medication to counter the thickness in his blood that cancer brought.
why did he have to die why did he have to die why did he have to die
All I wanted was to spend time with him even if it meant having to see him grow sicker and more frightened. He thought he could win. We all thought he could win. Just do what they tell you, take the therapy and medication they give you, and in the end you will beat this thing. Toward the end his fingers were numb and weak from neuropathy. Toward the end he shaved his beautiful thick curly hair in a “Daniel Craig” look that he hated. Toward the end his body betrayed him, weeping layers and layers of skin like blisters, plunging him into excruciating pain in an auto-immune reaction to the cancer. The pain meds made him a stranger, causing him to tear out catheters and IVs, insisting he needed to leave. “Mom, you have to help me go home.” I wept because I could not.
Improbably, he triumphed over the peeling skin. He triumphed over a weekend episode of extreme acidification of his blood, when they expected him not to survive. His body fought to live. In the last week of his life he was finally better, waiting for his blood counts to come back so they could try the next step – a bone marrow transplant. He had many promising matches with donor bone marrow, and the idea was that the donor’s bone marrow would not only replace his cancer-ridden bone marrow, but also it would provide a different immune system to try to beat the cancer. He had a long way to go – first rehab and then the transplant – and he was still very ill, but every day he did physical therapy and still strove to make the best of it.
Yet too soon it was over. They said afterward the cancer must have been all through his body at the end. Sudden, it was so sudden, at the end. Thirty-six hours of sudden descent into unconsciousness, his body overwhelmed by the acidification of blood from the cancer.
In the several months after his death, I had some dreams about him, dreams that gave me hope for remembering him, and hope for us who are still here. I will probably write about those dreams soon.
They say that a person only truly dies on the day that their name is said for the last time. My family still remembers my son and his special presence. And now you have been a part of that memory of him, of my son Leslie (1983-2014).
Thank you for hearing my story.