The princess and I were comfortably seated in chairs with our backs to the huge audience a few minutes before the festivities began. She was just as down-to-earth as all her subjects had promised me she would be, so I felt free to mention that my grandchildren were eager to meet her and to ask if that would be possible. “Of course,” she said, “but why don’t we wait for the photographers so they can have their pictures taken?”
I thought that was a great idea, but somehow, each of my seven grandchildren from ages four through sixteen found he or she had something to say to their grandmother that couldn’t possibly wait until after the ceremony. They all made their way down from their seats in the audience to speak to me, so, quite naturally, I had to introduce them to the princess, who shook hands with each one, asked their names, and greeted them all as cordially as if they had been a friendly diplomatic delegation.
Of course, when the paparazzi lined up to take pictures afterward, my seven grandchildren were right there again to have themselves photographed with their old pal, Her Royal Highness.
Jordan, especially, was thrilled. When the photography session ended, she asked her mother, “Now are we famous?” Samantha assured her she was. She skipped over to me and happily took my hand to walk to the restaurant on the grounds where the reception for all the famous people in attendance was being held.
When we went in, there on the table where guests were being checked in was the same picture of her grandmother that had been on the front page of the newspaper and posted on the stage and in various sites around the city. We started up the stairs and there at the top of the stairs was yet another picture of her grandmother—this one nearly the size of her own front door. She took one look, sighed deeply, and began to shake her head. “Nana. Nana. Nana,” she said.
“Are you tired of Nana, Jordan?” I asked.
“Yessss.”
Enough said.
John and Annie.
Final Gifts
I had thought that this book was finished. I had mailed off revisions to Kate Harrison, the editor, and was gathering pictures to include with the text when I was interrupted by the most extraordinary story of my life.
This story began, as all stories seem to, years before. I noticed one day that my strong, athletic husband was shuffling his feet when he walked. “John,” I said, “pick up your feet. You’re walking like your father did when he was ninety years old.” I was laughing when I said it, but I had no way of knowing what was happening. In time, and after extensive tests, doctors at Dartmouth Hospital concluded that John had a rare neurological disorder called multiple systems atrophy, for which there is no known cure. A small mountain of medications and a variety of therapies, occupational and physical, are prescribed with the hope that something might help, or at least slow down the progress of the disease, but the hard truth of the matter is that nothing can halt it.
John was a fine tennis player, he even won a varsity letter at Swarthmore, a competitive college for tennis as well as academics. But not too long after I had noticed the shuffling walk, he realized that he was no longer up to the speed and particularly the balance that tennis demanded. An even greater blow came when he failed a mandatory driver’s exam and could no longer hop into his car and go wherever he wished. Then he needed a cane, a walker, and finally a wheelchair. “I don’t mind dying,” he said more than once, “but I don’t want to die by inches.” But that was exactly what was happening to every part of his body bit by bit. The man who had spent his life helping others had a very hard time being the one in need of constant care. He had promised on the day he proposed that he would help me, but now he could only think of himself as a burden.
One very bright spot in this increasingly dark scenario was the time we spent doing the abridgment of The Flint Heart together. John had fallen in love with the early twentieth-century book, now long out of print, and Karen Lotz at Candlewick encouraged us to try to make it accessible for twenty-first-century children.
John went through the original chapter by chapter and noted what was essential to telling the story and what would make any modern reader pitch the hefty volume across the room. I would go upstairs and cut and paste and rewrite and bring it back down for him to approve. I knew he needed to keep on being creative, and was delighted that he went on to write a short picture book about a boy who makes a kaleidoscope. He found two persons who would translate the story into French and Spanish, and our friend Kitty Werner found an illustrator and helped John publish his three-language book especially for children learning another language and even adult ESL students. But in another year, the man who once had been tested with an IQ that would have qualified him to join Mensa had great difficulty playing bridge, his favorite card game. He wouldn’t be writing any more books; in fact, as the months wore on, he was no longer able to write his name in one.
After my two-year term as the National Ambassador for Young People’s Literature, I cut back on out of town trips. It was hard to find good caregivers to take over in my absence. At home, there was less and less time or energy for writing.
We have many supportive friends, but I needed more help. First it was three days a week, then five, then three nights, four nights, until at last it was someone in addition to me twenty-four hours a day. John was losing an alarming amount of weight, nothing tasted good, getting a fork or spoon to his mouth was a challenge, and he was obviously having difficulty swallowing.
On my 2013 fall schedule there were only two events. I went to the first of these, probably my favorite event, the National Book Festival in DC. On Sunday morning I called the weekend caregiver—John had had a rough night but everything was fine now. I spoke briefly to John and he seemed to be as okay as things were at that time. I went on to the mall for the day’s events. However, within forty-five minutes of our phone conversation, the weekend caregiver had called Stephen, our wonderful five-day-a-week caregiver. Zia was worried about John, would Stephen come over and see what he thought?
John was listless and having difficulty breathing. Stephen felt th
at they should take John to the emergency room. By the time Stephen was able to reach me in DC, the three of them were already at the hospital. I asked Stephen if I should cancel my two commitments for the day and try to get a flight as soon as possible. “No,” he said. “We don’t know anything yet. They’re checking him over. I’ll let you know when we know something.”
The next call I got was from the emergency room doctor who said that John had double pneumonia and they would be admitting him to intensive care. While I carried out my duties at the festival, a young Library of Congress staffer got me an earlier flight back to Vermont. I stopped at the hospital on my way back from the airport. John was sleeping peacefully, hooked up to every device available in a well-equipped ICU unit. His color was good and he seemed better than he’d been for a long time. Although John had tried to make me promise over the last couple of years that I wouldn’t ever take him to the hospital again, I was grateful that Stephen had chosen to take him there. I went home and slept well.
When I went back the next morning, the young doctor on duty came in the room to see us both. He spoke in a very caring manner, but he spoke frankly. Perhaps with the massive dose of antibiotics they were giving John, they might be able to cure this bout of pneumonia, he said, but they couldn’t cure the MSA, which would result in continuous bouts of pneumonia, each one more debilitating until he was too weak to recover. You need to think, he said, how you want to spend the rest of your life. By Tuesday afternoon, tests confirmed that 64 percent of what John was swallowing was going to his lungs. Yes, it was possible to insert a feeding tube into the stomach, but those were liable to infections and the doctor really didn’t recommend it. You are in charge, he told John. If you want us to keep treating you, we will, but if you decide you’d rather go home with hospice care, we can promise you that we will keep you comfortable while “nature takes its course.”
The hospital’s palliative care nurse came in frequently. She was equally caring and truthful about John’s options. It occurred to me that these honest, compassionate people were what was being called the “death squad” by persons opposed to the affordable care act.
Now, it is one thing, we learned, as you lose one vital ability after another to say, “Why doesn’t God just take me?” but it is another when the option is presented and it becomes your decision. John thought about it, slept on it, and on Wednesday morning, looked at me as though he were my child and not my husband. “What do you advise?” he asked.
“Oh, sweetie,” I said. “I want you to live as long as you can, but I don’t want you to be miserable.”
“I want to go home,” he said. And then, “I’ll miss you.”
By now I was sobbing. “I’ll miss you too.” Then I remembered a story. The day before Ray died, his pastor and close friend had said to him, “Ray, when you get there, will you promise to prepare a place for me?” And Ray had promised he would. So I reminded John of this story and asked him to prepare a place for me. He smiled and seemed satisfied. The man who always wanted to do things for me (whether I wanted him to or not) had one more gigantic task to do for me.
From that time on, John seemed to be at complete peace with his decision, even telling his favorite nurse that she would be notified about the memorial service in case she could come.
I called the family to tell them that we were going home. David had come on Wednesday, and Lin called and asked if she should come as well. “I don’t know how long it will be,” I said. But she knew better than I. She called the others to assemble in Vermont that weekend.
We went home on Thursday. David had hung a number of John’s glassworks in the window where John would be able to see them best. He and Stephen Casadonte met the medical supply van with the hospital bed, the suction pump, and oxygen machine. Everything went into the living room so there would be a comfortable place for visitors. The hospice nurses came with the medications to keep him comfortable and showed me how to administer them. “You’re a good scout,” he whispered once as I put a few drops of morphine into his mouth.