In the course of writing our upcoming book, "Saying Goodbye: How Families Can Find Renewal through Loss," Dr. Barbara Okun and I benefited greatly from the personal stories of many individuals who have experienced the process associated with a loved one being diagnosed with a terminal illness. Those stories led us to devise a kind of "psychological road map" describing that process. It has been our hope that this road map will be helpful to others who find themselves faced with the crisis of terminal illness.
Debbie, who is now 60, lost her daughter Rose to leukemia when Rose was just six years old. Rose had been Debbie's first child. She and her husband Tom had three other children after Rose died, and Debbie believes they had them in part because they believed that having several children might help to compensate for the loss of Rose. "I know that may sound crazy," Debbie explained. "Tom and I never actually discussed it in those terms. But looking back on it I think that on some level we believed that, or at least I did."
"Losing Rose was the most painful experience of my life. For years afterward I worried that my other children would feel like they lived with a ghost, because she died before they were born. When people would ask me how many children I had I would respond by saying 'I had four, but only three are living.' I would say this even when my other children were present. Yet I resisted talking to them about Rose or her illness. I think that only mothers who have lost children could possibly understand this kind of loss."
Debbie discussed how due to her being a physician and her husband having a degree in biomedical engineering, they felt that they would somehow be able to help their daughter more than parents who did not have such backgrounds. "What fools we were! How absurd to think that we could save Rose ourselves! For some reason our education and credentials actually made it worse. Knowing that I could not save Rose, but that I could go to work and help other children was excruciating at times. It was the most helpless feeling on earth: to be able to help another mother's child yet not be able to help my own."
Debbie said that losing Rose initially made her and Tom scared to have another child and they hesitated for several years. Then, after they did take that step they found themselves being very worried any time a child became ill, had a stomachache, or even said they felt tired. "It got to the point where the kids would have to insist that they were okay!" Debbie said with a laugh.
Debbie experienced a tremendous amount of guilt and self-hatred over her inability to cure her daughter or even to help her sometimes when she was in pain. "It was so hard to talk to her about her illness and what its repercussions might be. This was my child, she was my responsibility, but I could do nothing to save her. Tom and I ended up just telling her that she was very ill and that everyone was doing as much as they could to make her better. I believe that on some level Rose understood that she was dying, but she and I never actually had that conversation. I don't know if it would have made a difference."
While Debbie remains somewhat cynical about her ability to help her own children with greater ease due to her medical background, she does believe that having a familiarity with the disease and what its treatment would entail was a benefit as Rose's illness progressed. "As awful as it was, I suppose it would have been worse to not know what was coming." She now routinely recommends that parents educate themselves about any serious illness--terminal or not--that their children might have, and she directs them to resources for doing this. She is also a firm believer that parents who are facing the terminal illness of a child seek support immediately.
"There really were no support groups available back then. Because we were both in such pain it made it that much more difficult for Tom and I to talk. So we each grieved alone. That was the loneliest time of my life. Tom and I could hardly take care of ourselves, let alone one another. It's amazing that we even stayed together after Rose died."
Shortly after Debbie and Tom's second child--also a daughter, Rachel--turned seven, she came over to Debbie, sat down on her lap, and said that she wanted to know about Rose. "For a moment I was breathless," Debbie said. "Then Rachel simply explained, in that calm, clear voice she's always had, that she often gazed at one of the few photos of Rose that we kept in the house. 'She was so pretty,' Rachel said. 'I want to know about her. Like what she liked to do, whether she liked to draw like I do, and when was her birthday.' "
"I told Rachel that Rose's birthday was only a month away, and that she'd been six when she died from an illness called leukemia. Rachel said she'd heard of leukemia, and she even knew a girl who'd been treated for it. I had no idea she would know such a person."
The next day Rachel approached her parents as they were sitting on the deck. She told them that she and her siblings had had a meeting. "We want to have a party to celebrate Rose's birthday," Rachel said.
Tom and Debbie had grieved their daughter's loss, of course. They had even tried to replace her--three times over. But the one thing they had never done was to celebrate her life. When talking about Rachel's desire to celebrate her dead sister's life, Debbie thought it was important for parents to understand that while the pain they feel over their loss may never fully dissipate, the experience of celebrating a child's life, however short it may have been, can go a long way to balance their grief.
Together Debbie and Rachel came up with a simple tradition that the family then celebrated every year on Rose's birthday. The tradition was simple but poignant. Each year Rachel would go with Debbie and order a birthday cake--decorated, of course, with roses. The family would share the cake, and Tom and Debbie would tell a couple of stories about Rose. One year Tom told a story about taking Rose sledding when she was five and how the two of them had gone so fast that their sled toppled, sending them rolling across the snow-covered slope. Everyone laughed.
After the cake was eaten and the stories were told, each child would get a small gift--from Rose.
Grieving never totally ends, it merely ebbs and flows. What touched us most about Debbie's story, and the message she wanted to share with others is this: "Thanks to Rachel I came to understand that while I could not leave Rose behind, together with her our family could move forward."
I invite you to share your own story of celebrating a life lost.