Nine years ago today

This is my son, Mike, a kind and wonderful young man. Nine years ago today, I brought him home to die.

Nine years ago today, I brought my son home to die.

In my heart, I feel as though it could have been yesterday.

I remember everything about the day because it’s etched on my heart as the day his impending death became real.

We had coffee in the living room of his apartment after his roommate and best friend, James, left for work. From across the room, Mike looked up at me and said, “I’m ready for this to be over.”

I was not ready. I would never be ready. I’m still not ready to be without him.

We had an appointment for his third chemo infusion, hoping to give him a few more weeks or months.

But he hadn’t gained any weight at the last appointment, and his doctor had said he needed to put on two pounds. I had gone to the Duke Chapel to pray for those two pounds. It didn’t seem like too much to ask. Two pounds.

But it wasn’t to be. We drove from Cary to Durham to the cancer center at Duke University Medical Center. We passed by Mangum Street and he laughed and asked what I though man gum was.

“I can’t help it,” he said. “I think that every time I pass that street.”

We got to the clinic and he stepped on the scale. He had lost another pound.

“I tried!” he said. “I really tried!”

I’ll never forget the look on his face — frustration, disappointment, disbelief.

Dr. Herb Hurwitz came in and told us there was nothing more he could do. His eyes filled with tears as he said, “You’re a good person, Mike. You don’t deserve what’s happening to you.”

I remember thinking it would have been nice if Dr. Patrick Hammen in Savannah had felt that way. Perhaps if he had, Mike and I wouldn’t he hearing these words from Dr. Hurwitz now.

But Hammen had given up on Mike before he even started treatment for his recurrence — which wouldn’t have happened if Hammen had been willing to take payments instead of demanding cash up front for a colonoscopy three and four years earlier.

Hammen had been very matter-of-fact when he told Mike the cancer was back and a cure was unlikely, and he never came back to check on Mike during his nine more days in the hospital.

And here, Dr. Hurwitz was weeping as he told us there was nothing more left to do and that Mike should come home with me and enjoy what time he had left.

As we were leaving the clinic, I was pushing Mike in a wheelchair and he looked up at me.

“How much time do you think I have left?” he asked. “Two weeks?”

“I hope it’s more than that,” I said.

But it was not.

We called James and Janet and they both met us at the apartment. They had packed up a few things they knew Mike would want, including his gaming computer, his game console and games, a few books and all his plaid flannel pajama bottoms and T-shirts, underwear and ostomy supplies. It all fit in the back of my Honda CRV.

At that point, these few things were about all he owned, except for a massive antique desk, which would go to Janet.

James and Janet would come out to Asheville the following day; Mike and I would do the four-hour trip alone, stopping at an outlet store about halfway home so I could get a memory foam pillow for his bony butt. I think it was as much an excuse for him to have a cigarette as any soreness in his backside, but I was willing to indulge him.

He weighed about 102 pounds at this point, but he would lose more since his body had stopped absorbing any food.

For the next two weeks, I would share him with friends and family from as far away as New York and New England, from Savannah and Cary, and from Asheville. All of us tried to soak up as much of his presence, wisdom, humor and love as we could. We knew it would have to last us a lifetime.

Nine years ago today, he came home to die. I would have given my own life to spare his, but it was not to be, and the pain of losing him has not abated. I was so unwilling to imagine life beyond his death that I convinced myself my heart would stop when his did. It didn’t, of course, and all I know to do now is to fight for access to health care for everyone because no one should have to go through what my family has endured.

On the day he died, some 45,000 Americans were dying every year from lack of access to care. Things are somewhat better now because more than 20 million people have access to care than had it then, thanks to the Affordable Care Act.

But the occupant of the White House, the Speaker of the House and other Republican politicians want to go back to that. Perhaps if they had to watch their own children die the way I had to, perhaps if they had to live with the unspeakable pain I do, they would change their minds.

But I wouldn’t wish that on anyone — even on them.

Nine years ago today, I brought my child home to die.

We would have two more weeks with him.

 

 

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