Beyond Tears: Living After Losing a Child (5 page)

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Authors: Ellen Mitchell

BOOK: Beyond Tears: Living After Losing a Child
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While the pain is the same for every bereaved parent, the issues one must deal with can be quite dissimilar. Suicide, for instance, presents a very different set of concerns and realities than does death in a car accident. The list of varied death scenarios is long, too long.
Meetings may focus on specific topics. Sometimes there will be a speaker, or those in attendance may simply talk among themselves. Sometimes it’s just sitting quietly and listening to others that helps.
Barbara E.: “I felt I had to go to meet other parents and find out if it was true that I had done something to anger God, as a nagging inner voice kept telling me. After spending a lot of time with the other parents, I learned they were wonderful and loving people. I’ve come to believe that good and bad things happen
by chance to anybody. What happened to my family could have happened to any family.”
Topics discussed by the whole group might include anger or guilt, or dealing with holidays or an upcoming family event. The conversation might be very practical, such as a discussion on recommendations for selecting a headstone or how to respond when asked how many children we have. Just as there are too many bereaved parents, there are too many sad topics to discuss.
Barbara G.: “When my oldest son became engaged, I said I couldn’t make a party. How could we celebrate with one child missing? The support group encouraged me to dig deep within myself for strength and give an engagement party. It’s the group effort that sees you through these different stages because life goes on for your other children. It’s painful for you, but necessary for them.”
Barbara E.: “If someone has something really bothering them, like an anniversary coming up, they need to talk.”
Carol: “Sometimes the talk is negative; people share negative things like the fact that, despite the passage of time, we still feel pain. But people want to hear even those negatives; it validates their own feelings.”
Rita: “Every time you say something, you’re getting a little more of the poison out of your system by verbalizing that horrendous thought.”
Barbara G.: “At the first meeting we attended, I remember another mother who had not said a word the entire evening, but she came over to hug me when it was over. I needed that hug more than I needed words just then, and she knew it.”
Even in our misfortune, the nine of us are fortunate that we reside in the New York metropolitan area where there are numerous support groups. While there are bereavement groups located throughout the nation and around the world, there are undoubtedly areas that are underserved. We suggest that any parents who do not have ready access to a bereavement group, or who are experiencing a sense of isolation, avail themselves of their local library. Books can be a wonderful source of guidance and comfort. Although we are bolstered by our group meetings, to this day, each of us reads anything and everything we can find on the subject of parental bereavement and life after death.
We have formed our own book club and, as time has passed, some of
us have found that to be more to our liking than regular bereavement meetings.
While none of us knew a great deal about computers when we were initiated into bereavement, the Internet has become a virtual international support network. There are grief Web sites. We have Internet pen pals. We can go into chat rooms and share our thoughts and concerns with mothers and fathers around the globe. We tell each other how we cope, we post photographs of our children, and we discuss their deaths. There are no language barriers when the topic is grief.
After meeting through the larger support group, the nine of us quickly formed a special bond, probably because we are of similar circumstances and ages, and all of us lost children in their teen or young adult years.
Carol: “I would get depressed and my husband would suggest I call somebody from the Compassionate Friends. Just a brief conversation could get me through a bad day.”
Barbara G.: “Sometimes you just need to call and say, ‘If you don’t meet me for lunch, I’m going to be committed. You can’t call any of your other friends because they want to make small talk, and we want to talk about our children and our pain.”
Rita: “It’s like draining a wound.”
We learned from each other, watching carefully to see how the person who was bereaved the year or two before us reacted under certain conditions or circumstances. It was a bizarre road map of sorts that showed where we might be in the future.
Lorenza: “At one of the early meetings I went to, I saw Maddy and she was wearing red nail polish and jewelry and I asked her how she did that. She told me it had been the way she always dressed, and her son would know her that way. That’s when I started putting lipstick on again.”
Maddy: “But I didn’t start caring about my appearance right away either. I used to go to the meetings like a zombie, but then I went to a meeting and I met this well-groomed woman who lost two children at different times. And I said to myself, if this woman can get out of bed every day and get dressed, then I’m going to do it, too.”
We fell into the routine of going to a diner after the regular Friday night meetings. It was a way of continuing the stream of thought and the relief. We took less of a burden home with us that way.
Then, too, much as there is the fear of saying certain things in public, so too there is the fear of laughter. Oh, how our lives have changed, that we are reluctant to laugh out loud in the wrong company!
Only with other bereaved parents do we feel free to laugh. We fear that the civilian world would not understand, and that fear is far from groundless. Outsiders truly do not understand. We experience enormous guilt should civilians see us seeming to enjoy ourselves. We feel they must be asking themselves, “How could that be? They lost a child. How can they be laughing?” Being with people like ourselves gives us permission to laugh and to be less concerned about the effect we may be having on the outside world.
Eventually, we found the courage to attend social gatherings, but only within our secure little circle at first.
Barbara G. : “In the spring after Howard’s death, my husband and I made our initial foray into a gathering at the home of a Compassionate Friends member. At first I thought to turn down the invitation. Then I felt I’d just put in an appearance and leave. Then I realized that I was thinking about what I was going to wear for the first time in a very long time.”
One of our first attempts to reconnect with normalcy, so to speak, was to travel together to Carol’s vacation home in Massachusetts. We were testing the waters, but we were not yet strong enough to wade in too deeply. Just as people who have suffered an enormous physical wound must do, we had to go through a rehabilitation process, step-by-excruciatingly-slow-step. We were terrified that we might falter at the beginning.
On that first overnight trip, we walked and shopped, we laughed and we ate. Food becomes a focal point … . When do we eat? Where do we eat? It was winter and the snow on the mountains and the serene landscape gave us a feeling of well-being. We were secure in each other’s company. A stranger asked, “What kind of group are you?” Almost as one, we responded, “You don’t want to know.”
Lorenza: “During that trip, there was much unspoken communication between us. We knew how we felt. We knew it was a temporary distraction, but we were determined to live this new life of ours. We are stronger together.”
As we ventured farther into the world at large, we took comfort in each other.
Maddy: “Cliff and I ran into Audrey and Irv at the theater. I said to Cliff, ‘That means we’re not the only ones like us here.’ And that gave us a certain strength and comfort. I had a better time.”
Some of the support groups with a national base hold conferences and conventions for bereaved parents. Some of us go, some of us purposely stay away. Like everything else about being bereaved, there are the universal feelings and then there are the differences. No one is right or wrong … . It’s a matter of finding your own way, of getting through the day, the week, the month, the years.
Maddy: “The convention is a hotel transformed into a cocoon for fragile people. I feel like I’m going to a safe place and I never want to go home. I feel like if I’m a leper, I want to live in a leper colony. There’s something about just knowing that everybody there is the same and you don’t have to explain yourself or be afraid to laugh. They know what’s behind the laughter. I stay in touch with people I’ve met at conventions from all over the world.”
Barbara E.: “They had groups … parents whose children died a sudden death, parents whose children had been handicapped, spirituality, many kinds of groups.”
But, again, not all of us found calm there.
Rita: “I found conventions overwhelming. They ask you to send in something memorializing your child … maybe something like a butterfly with their name on it … even if you don’t plan to attend. Once I walked into a room and they had trees set up with butterflies all over them. Each one signified a dead child. It was a forest of the dead. It was painful. I couldn’t believe that room.”
Lorenza: “There are walls filled with stories, with pictures.”
Rita: “People walk around with badges of how many children they’ve lost. One had four kids lost at different times. It was horrible.”
Audrey: “I went once and I couldn’t go back. They have entertainment. I felt like people were partying. I couldn’t handle it.”
We have come to a place in our lives now where we no longer feel an overpowering need to attend support group meetings. But we go—if not for ourselves, we go for others. Some of us have gone on to hold meetings in our own homes. We are always there for each other to mark a birthday, an anniversary, or any occasion that another bereaved parent would remember. We like to say, “When the world forgets, we will remember.”
Phyllis: “I wanted to start a chapter. I had to travel some distance to the nearest meeting and I wanted a chapter closer to home. I started one and I ran it for twelve years. Truthfully, I might have been giving to the group, but I got a lot more back than I could possibly give.”
Maddy: “A lot of us feel we have to give back to others now. If I miss two meetings in a row, when I go back I see ten new couples. I don’t feel the need to go to a regular meeting anymore, but sometimes I feel it’s important to be a body in the room for these new people. They see that I survived.”
Rita: “I run a group now. It’s like the nurturing part of me that died with my son needed an outlet. It’s for those who have been bereaved for more than three years. We deal with quality of life issues that arise later in bereavement.”
Then, too, there are all the permanent tributes we have made to our children through our connection with the Compassionate Friends. We plant trees and gardens and place plaques in memory of our children. Typical are the benches we placed along the boardwalk at one of our nearby beachfront communities. They bear our children’s names inscribed on plaques and words such as “only a breeze away.”
Will there come a time when we will no longer go to support group meetings? Definitely. We find we are more and more able and willing to deal with the here and now. There are other issues and there is a future. For some of us, there are now grandchildren.
Will there come a time when we will no longer need each other? Never.
Ariella: “We are each other’s consolation prize. We lost our beautiful children, we have gained each other. We’ve become family.”
Brian was my only son and he was my paradox. He liked to give the impression that he was tough, but his soft and sensitive side showed through. He played hard with the guys, but some of his closest friends were girls. Athletic and competitive, he loved all sports, but he was just as content and just as proficient at chess. The paradox continued when he entered college and reveled in being a championship wrestler, but at the same time enjoyed being a Big Brother to a nine-year-old, taking him places and helping him with his homework.
Brian was cocky, determined and strong-willed, and he loved to aggravate people, especially his parents. From the time he was a baby and climbed out of his crib fifteen times in one night, his father Mike and I knew he was the kind of kid who would always push things to the limit.
The first time we went to visit him at college, we spotted him immediately; he was the only one wearing a dress shirt and tie. When asked why, he said, “Because no one else dresses this way and it catches the babes’ eyes.” Even though many of his friends smoked, drank or experimented with drugs, he didn’t feel the need to follow along. His friends always counted on him to be the “designated driver.”
Although academics weren’t his priority in grade school and high school, Brian blossomed at college and made the dean’s list in his first two semesters. When we asked how he managed to do so well, he attributed his success to the fact that he had “paced himself” in high school and was rested up for college.
While in high school, Brian took up weightlifting and bodybuilding. He was quite impressed with the results and had trouble passing his reflection in a mirror without admiring himself. Oh, to see that reflection again.
From his early childhood on, Brian had a motto, “Never give up.” And he never did until some terrible force, far greater than anything he could control, took hold of his life.
In 1995, the year Brian was twenty-one, things seemed to be fairly settled in our family. Brian was doing remarkably well at school, and his
sister Sandy, twenty-three, was off in Israel studying. Mike and I had gotten beyond a number of family illnesses and tragedies … . Life was wonderful … right up until a 7 A.M. phone call on a Sunday morning. It was Brian calling from Lehigh University.
Remember this was a kid who was a champion wrestler; he’d wrestled in a tournament with a dislocated shoulder, and had not complained about an ache or a pain. And here he was calling to tell us he had a sore throat and felt weak. We were half asleep and we talked briefly. But once we shook off our sleep, his father, Mike, an anesthesiologist, called Brian back and told him to go the emergency room.
Again, the phone rang. This time it was the hospital emergency department telling us that Brian’s blood counts were dangerously low, but he was gone—he’d left the hospital against medical advice. They were sending the police out to bring him back.
We rushed down to Lehigh. Mike tried to reassure me that Brian would be fine, but I saw a different look in his eyes. I kept picturing Brian … the healthiest, fastest, strongest young man you could envision. How could he be sick?
We brought Brian back to a major teaching hospital in New York City for what would be the beginning of many months of medical horrors. While attempting to take a bone-marrow sample, the hematologist stuck Brian what seemed one hundred times. We pleaded with him to be more gentle and to get assistance. In frustration, he told the two of us—in front of Brian—that our son could die that night if he didn’t get a specimen. He finally called for assistance.
The diagnosis was Burkitt’s leukemia, a rare and aggressive form of blood cancer.
Brian spent most of the next ten months at two different, highly respected teaching hospitals in the New York area. If Brian had survived, we would probably have had a totally different opinion of these hospitals. As it is, our memories are a series of ghastly medical events punctuated by moments of dark humor.
One night, a substitute nurse tried to start a blood transfusion in the dim light. She admitted she was having difficulty connecting the tubing
and turned on the lights. Brian awakened in a shower of blood. His dark sense of humor intact, he said if the cancer wasn’t going to get him, the doctors and nurses surely would.
After that, Mike or I or our daughter, Sandy, stayed with him day and night. Brian slept easier knowing we were there to protect him. His girlfriend took a year off from college to be with him.
Our conversations were never about Brian not surviving. He was the fighter who never gave up; the one who would win. Not until after our “Never Give Up” kid died, did Mike tell me he knew all along that Brian’s chance of recovery was only five percent. It is difficult for me to imagine Mike’s inner suffering as he hid that knowledge from the rest of us and tried to buoy our spirits. Here was a doctor who had saved many lives, and he could not save his own son.
When Brian was a freshman at Lehigh, he had seen the movie
Pretty Woman
and loved it. He vowed to meet Julia Roberts before his graduation. When he became ill, his Aunt Judy phoned, wrote and sent telegrams, trying to reach the movie star. One day the phone rang … it was Julia Roberts calling. She came to the house and brought Brian a long box containing a single yellow rose. She and Brian sat on the sofa talking like old friends for four hours. He was bloated from steroids, but they discussed working out. He felt her muscles and she put her hand on his leg. He froze; he was in seventh heaven. She was in England making a movie when he died. We heard she had tears in her eyes when told of his death.
Brian was in and out of remission, and his only option was a bone-marrow transplant. He decided to continue the fight and have the transplant.
Just before his bone-marrow transplant, Brian said he’d never been to Atlantic City and he wanted to go. He was totally wiped out and in a wheelchair. He could hardly hold his head up. Well, he took care of everything. He got us a free room, free food. We only learned afterward that he was a regular there. They knew him. He had made road trips there quite often with his college friends.
By 3 A.M. he had won $800. The next morning, he spent $100 of it
and I took $700 home. I had it in the house and didn’t know what to do with it. It was the last money he ever held. So, seven $100 bills sat in my drawer for six years until Sandy got married. We spent $300 to frame her katubah, the Hebrew wedding certificate. She was thrilled when we told her it was a gift from her brother. We will spend the remainder on our new granddaughter.
During the bone-marrow transplant, Brian suffered 106-degree fevers. He had terrible pain, which the doctors undertreated. They said they didn’t want to turn him into a drug addict. We called it God’s little joke … to take a strong man like Brian, give him a vicious leukemia, and force his anesthesiologist father to stand by helplessly as his son suffered.
For six weeks following the bone-marrow transplant, Brian was in a plastic bubble to protect him from infection. Even we couldn’t touch him. We did not talk about all the possible complications or the outcome because we wanted to protect him, and he wanted to protect us. But he must have been filled with fear and uncertainty as he lay there isolated from human touch.
After a three-month battle, it appeared that Brian had overcome his disease. We were ecstatic; Brian had beaten the odds. He had fought and won. Our euphoria was to be short-lived. That very night, he started passing blood and he had to return to the hospital. He spent six more weeks there and then he slipped into a coma again.
On the morning of May 3, 1996, everyone seemed to come at once—his grandparents, aunts, college friends. Did they somehow know that his time had run out? At 10 A.M. the doctor came in and said it would only be a few hours. We all just held him and told him we loved him until it was time for him to go.
Barbara Eisenberg

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