As with all things, time softens the edges, removes the sharp pangs and gives some surcease from pain. Even the anniversary of a death no longer tears into us with the same fury.
Phyllis: “In fact, on the tenth anniversary of Andrea’s death, Mel and I were able to travel to the Virgin Islands to attend the wedding of a close friend’s son.”
Rita: “To my disbelief ten years have passed, and with much prayer and support from family and friends, we have survived. On the tenth anniversary, several of Michael’s closest friends set up a memorial service at his high school. There was a mass and one of the Catholic brothers, who had been one of Michael’s closest friends in their school years, cooked lasagne for everybody. I spoke at the service. And then they traded stories of Michael all night, some I’d never heard before.”
“Gratitude has entered my life now. I am thankful for having had Michael and always will be the mother of two wonderful sons. Our son is no longer with me physically, but he is always within me. The other son, bless him, is my tomorrow. There is a future.”
Michael was our whole world. He was our only child, a gift born to us on a cold February morning in 1975 after six frustrating, anxious years of fertility tests. Never was a baby welcomed more heartily into this world.
But, within weeks, something was terribly wrong. Michael developed flulike symptoms. The doctors found that his blood count was alarmingly low, and our precious infant had to undergo a spinal tap and a blood transfusion. He rallied at first, but within weeks he needed yet another hospitalization, another blood transfusion. The doctors told us they suspected our baby suffered from aplastic anemia, a condition in which the bone marrow does not function properly. Michael’s immune system was compromised. They said the beautiful baby we had waited so long for could die. Bob and I were in shock. The doctors said Michael should undergo blood tests every few weeks.
We got lucky. Michael grew into a handsome, bright, active preschooler, and we stopped going for frequent blood tests. His annual blood counts taken during routine checkups were always low normal, but he seemed healthy. We thought we had beaten the odds.
The years flew by. Michael was an all-around kid. If it had wheels, he loved it. He had every Matchbox car ever created and as a result could name every car on the road. As an only child, he learned to amuse himself. He would spend hours lining up his tiny cars and moving them about the little village he built for them.
Our son loved sports; his travels with the soccer team as a young child became a way of life for all of us. He mastered tennis and learned to ski like a pro. In 1984, he was thrilled to go with us on a ski vacation in Austria. The image of my exquisite nine-year-old son gliding down the mountain remains engraved on my heart forever.
By the age of sixteen, Michael was 5’10” and 175 pounds. He was handsome and sporty looking with curly brown hair, a gorgeous smile and an aversion to high school. He wanted out of the classroom and found a way to double up on courses in his junior year so as to graduate
a year ahead of his friends. He completed his English requirements in night school with thoughts of eventually pursuing a career in journalism.
Michael was always very comfortable around adults, probably again due to his being an only child. He loved being with us and we with him. During high school, he had chosen to work at a nursing home as a community service. It pointed to his unique capacity for combining the sweetness of youth with the wisdom of age. He was kind and compassionate and touched by the difficulties the elderly faced. We used to say that he would bring home both stray people and stray animals.
Our serenity was not meant to last. In 1991, still at age sixteen, Michael developed an extreme fatigue. More blood tests, more bad news. We were told that he was again in danger of dying and would ultimately need a bone-marrow transplant. We opted once again to wait and see what would happen.
Michael rallied, and the following summer was his best ever. He worked at a country club tennis court, he met Lauren, his first—and only—love; he had a car. The world was his.
Michael had just begun college, and he had reached a point in his life where he was confident and happy with himself. He was full of dreams and aspirations; he aspired to become a broker and earn millions of dollars. Lauren shared his dreams.
He still played his beloved sports; he enjoyed the beach, the movies, cars, pizza, travel and wristwatches. Yet when he wanted any of these things, it was important to him that he earn them for himself. He never wanted us to give him anything, preferring to work part-time jobs to pay his own way.
We considered ourselves a typical family with typical worries. We fretted over finances, Michael’s education, his driving, his future. At the age of almost twenty, Michael was someone we could count on. What we never counted on was losing him.
On November 7, 1994, Michael was sick with what again appeared to be the flu. He went to the doctor and was sent immediately to the hospital for a blood transfusion. Things went from bad to worse. This time our strapping son was diagnosed with Fanconi’s anemia, a rare and
usually fatal blood disorder. Our typical family was facing a death sentence.
We were told that the time had come for Michael to undergo a bone-marrow transplant. He was placed on the bone-marrow registry in hopes of finding a match, and meanwhile there were transfusions, blood tests, more transfusions, more tests. Michael’s veins were difficult to access, so these procedures brought him nightmares and pain.
As sick as he was, at Christmas Michael’s passion for caring about everything and everyone did not forsake him. He ordered gifts for all his loved ones by using the phone at his hospital bedside and his own credit card. That was his way.
On Super Bowl Sunday, January 15, 1995, Michael was placed in the hospital’s bone-marrow unit in preparation for a transplant slated for February 7, his twentieth birthday. The chemotherapy and radiation he was given to wipe out his immune system prior to the procedure made him terribly sick.
He called me one night from the hospital and shared his fears.
“Mom, they don’t know what they are doing,” he said. “They are going to kill me. Please take me home.”
I wish I had.
Another time, I overheard him in conversation with my cousin. He never knew I heard him say, “I don’t know what will happen to my parents if something happens to me.”
Finally, the bone-marrow transplant was done and Michael improved for a time. We were full of hope. His blood count rose, he looked and felt better. He was trying to deal with the whole situation as best he could. I recall the mother of one of his friends referring to him as “a silent warrior.”
And then on March 3, our hopes were crushed. Michael was having trouble breathing. The doctors insisted they must try to remove fluid from his lungs. Michael resisted.
That day he said no to further tests. I begged him to allow the doctors to do as they said they must. Finally, he said, “Okay, Mom, you win.”
Those were the last words my beautiful son ever said to me, and I have relived the heartache of that conversation ever since.
Michael was placed on a ventilator. We saw the fear in his eyes until he was given morphine and tranquilizers. Following the procedure, our son’s condition worsened, he slipped into a coma and died alone in the hospital just after midnight on March 17.
He had escaped the pain and horror of his bone-marrow transplant experience. Death was better than suffering.
I do not know the words to adequately describe the depths to which we miss Michael. He was so alive. It is still almost impossible all these years later to believe he is gone.
Ariella Long
Love, Laughter, and Gratitude
W
e originally titled this chapter Love and Laughter, but as we thought through what we wanted to say in it, we realized we had to add the word “gratitude.” We are forever indebted to those who have stood by us when we needed not only someone to lean upon, but someone to pick us up when we so often stumbled and fell.
Were it not for these extraordinary people, we might never again have experienced laughter. They are, of course, first and foremost, family members.
Carol: “After Lisa died, I lost my desire to live. The constant calls from my sister, brother and my friends who cared about me helped to rekindle my spirit. They looked for books for me to read, drove me because I couldn’t drive, took me out to eat, made dinner for us and did many other things. The warmth and concern from my daughters, sons-in-law and grandchildren was also very important
to me. Most of all, it was my husband, who although he loved Lisa as much as I do, still wanted to live life. He dragged me along with him even at a time when he was dealing with his own pain.”
Barbara G.: “If I were left alone, I would likely spend my life not responding to anything. But I have two other children. When I am with my sons and their wives, and now my grandson, I am very different.”
“This year, for the first time in many years, we did not go away for our wedding anniversary. We stayed in our new home and invited our children to be with us. It was a wonderful evening. It could have been perfect if only Howie were with us. Always things are bittersweet.”
To a great extent the extraordinary people who have restored us to love and laughter are our similarly bereaved friends. They understood precisely what it was that we were feeling and continue to feel to this day.
Ariella: “Our life now is centered on the love, understanding and support of our Compassionate Friends. But after five years, we began to socialize with non-bereaved friends as well. Still, we are very selective. We need to be around people who are spiritual and understanding and do not demand anything of us. Life is precarious; those we socialize with must understand that.”
Sometimes the people to whom we owe a debt of gratitude are people we barely knew, or at least did not know well; people who simply stepped forward and knew instinctively how to lessen our burden.
Sometimes they were coworkers who listened attentively as we went on and on about our children, coworkers who offered us something as simple as a glass of water when we seemed parched and at our wit’s end, and who sometimes gave a heartfelt hug for no reason other than they felt we needed it just then.
Audrey: “They are the people who helped us to take baby steps when we couldn’t even crawl, people like Jessica’s video production teacher. He devoted an entire summer to putting together a memorial service celebrating Jess’s life. He devoted almost two years to overseeing development of a memorial garden at the high school. He included Irv and I in the development process and engaged the community in fund-raising and planting. He places flowers on her grave on her
birthday. The most beautiful thing is that he is not afraid to mention her name in front of us … as so many people are.”
Rita: “I remember so well a friend who wrote to me and described in great detail the last time she had seen Michael. She wrote of his smile, what he wore. She recalled so much. It was wonderful and it made me feel wonderful.”
And so with time and a great deal of help, we have learned to laugh again … surely not with the degree of abandon, spontaneity and joyousness we once knew, but laugh we do on occasion, particularly when we are in each other’s company.
Phyllis: “I remember that first time we women who had met through the Compassionate Friends took our friendship to another level. It was when we traveled to a friend’s condominium in Massachusetts on a winter weekend. We drove in two cars. We were so busy talking, eating our bagels and drinking our coffee that we lost the lead car and started following another car. It brought us so much laughter. And then we spoke of politics, of money, our families … the things that ‘civilians’ speak about.
“We rekindled feelings of hope, security and love. If you can share your feelings and stories with a friend, you will never be alone. Beyond that, there is an unspoken communication between us.”
For some of us, that was actually the very first time we truly let down our guard and enjoyed ourselves without the accompanying guilt that oftentimes affects us when we laugh in public. Outward expressions of enjoyment by the bereaved can produce some complex emotions both in ourselves and in those who see us laughing aloud … or so it seems, at least to us.
Rita: “At first the newly bereaved person is offended at hearing other bereaved people laugh. But laughing is a good thing. In fact, with time we often laugh too hard … . It’s really just like crying. We can laugh with the same pain in our laughter as we used to let out in our crying.”
Lorenza: “The light moments in my life occur when I am in the company of other bereaved mothers. I seem to be more relaxed with them. We can talk, laugh and cry together. To an outsider it seems we are having fun. They do not realize that we never can completely let go and forget what originally drew us together.”
Carol: “The first time I laughed was when there was a holiday party with other bereaved parents and we came and people were telling jokes. We laughed, and it was like crying.”
Love never left our lives throughout our terrible ordeal. While it was oftentimes difficult to outwardly express love or to verbalize our feelings for our spouses, our surviving children and our grandchildren, love did not disappear from our lives. It was there all the while, hidden beneath our tears and behind our broken hearts, quietly waiting to show itself once we grew strong enough to allow it to emerge once again.
We bereaved feel a strange guilt because our deceased children cannot experience something pleasant that we may experience.
Maddy: “When I am at a restaurant or on a trip or at the movies and I see young people, I think it should be Neill that’s there, not me. So far, I haven’t been able to get over that. I’m trying to get beyond it. I’m trying to set that goal for myself.”
Ariella: “Michael loved going to the movies and having pizza, going on long drives, boating. I do all those simple things that he can’t do.”
Barbara E.: “Sometimes when I do something Brian would have enjoyed, I feel that I am leaving him behind. And when you do anything new, you feel very guilty about doing it and enjoying it.”
Lorenza: “Sometimes when I have a day when I seem to be absorbed in an activity, I pay a price later in guilt. How dare I have a good day when my son is dead?”
There is often an inner voice tearing at us and telling us we oughtn’t to enjoy a beautiful landscape or a new adventure because our child cannot do the same.
Ariella: “When we have a beautiful sunset, I wish Michael were here to see it.”
Each of us experiences that odd guilt. We do not know how to rid ourselves of it, but we do know its presence becomes less overwhelming with time. It doesn’t go away, but it does wane somewhat. Perhaps that is only because we learn to accept it and live with it.
Barbara E.: “Now when I see a beautiful sunset, I sometimes thank Brian for it.”
What it amounts to is whatever occurs in our lives, while it may bring us some degree of happiness, is always muted, it has lost its color and its ability to make us completely forget our loss. We do not possess the same degree of passion for living that we once had.
Phyllis: “We have two bat mitzvahs of our granddaughters coming up in our family. It won’t matter to me whether or not my children invite my friends. At one time, I would have made a fuss over such an issue. Now, I won’t argue. I have lost the luster to get upset over such things.”
Audrey: “You don’t have the usual everyday struggles anymore; the everyday ups and downs of motherhood that made us worry constantly about our child are gone. When your child was your whole existence, there was that constant attachment. I miss that terribly.”
Carol: “That was what being a mother was. Worrying was my job.”
Rita: “But I have found that the passion can return. Where I used to get depressed over an event, many times now I can say, ‘Wow, think what happened today. ’ It’s difficult for us to see ourselves changing in that way. I even have difficulty seeing it in myself, but I look at the others in our group, and I remember the way they looked when they first walked in. There is a tremendous difference.”
Barbara E.: “But, you have to remember, sometimes that’s just the effect of medication … if you’re on medication.”
We all miss our children terribly and feel enormous gratitude that we had them for the years we did.
Rita: “I’m thankful for Michael. I have to try to replace the negative with the positive, and now I’m able to do that.”
Phyllis: “I would not have liked to live my life without knowing Andrea. She gave me energy; she was my mentor and her spirit kept me going. It sustained me when she was alive and now although our relationship has changed, I still feel the same way. Andrea made a difference. She was a blessing in my life and continues to be so.”
Lorenza: “I remember there seemed to be a distinct turning point. All of a sudden, I was able to focus on the positive rather than the negative. I was able to focus on Marc’s smile. At the beginning, I would only focus on Marc’s struggle in the water and his death.”
Ariella: “Anything you focus on grows. So, if you concentrate on the negative and the pain and suffering, you feel more of it. If you focus on what you have and what you are grateful for, that grows. At first I thought there was no future without Michael. But now I’ve sought a more positive approach to my life. I take care of my body, mind and soul, and the more I do, the more whole I feel and better able to deal with life. I can do things. I just take Michael along in my heart.”
Lorenza: “But you have to be ready to let that happen. It can’t be rushed. We all said we wanted to die, that we couldn’t go on, and truly it’s not the life we had before, but it’s not as bad as you think it might be. Whether we used medication or psychics, whatever, the will to survive is strong in us. Each of us has found a way.”
Still, those of us whose children died following a lengthy illness can never erase the nagging thoughts of how they suffered. We believe it is human nature that we question why they had to endure all they did in their young lives, and we ask ourselves would it have been better for them not to have lived at all.
Ariella: “Michael was very sick and suffered a great deal. During that time, we, his parents, felt there was no pain worse for us than watching him suffer. At that time, I would have given up the joy of having him for twenty years so he would not have suffered and we would not have had to watch that suffering. But in time, that has changed. I am now grateful that he was alive. I focus on the good times and the longer times when he wasn’t sick.”
Carol: “I always wished when she suffered that I had never had her. Why have the child? Now, years later, I have gotten over that. The vision of all that pain fades with time. But if I had it to do over again, with the knowledge of what would happen to her, I might not have had her. I don’t know. I’m confused.”
Even those of us whose children died suddenly have wondered why they were taken so abruptly and given so little time on earth. Should we be thankful that we had them for a short time, or would it have been better not to have known them and loved them and lost them?
Audrey: “There were times when the pain of losing Jess was so excruciating.
But now I can think of all the pleasant times. So I am now thankful for all the joy she brought me in those too-short fifteen years.”
Maddy: “It’s our children who should have been asked that question. Neill died with hope. He did so many things, he graduated from the college of his choice, he had a girlfriend. They’re the ones who should be asked if they would have wanted life if they knew it would only be for the short years they had.”
Such thoughts will probably always torment us. We try to put them out of our minds, knowing we will never have answers, at least not during life as we know it.
Meanwhile, we are maintained in the belief that our children would not want to see us carrying their deaths as a millstone around our necks. We would not want to do anything to further hurt our children.
Barbara E.: “Brian fought death so valiantly. When he died, I wanted to die and that made me feel guilty. I contrasted my feelings with his bravery, and I felt guilt.”
Rita: “I always feel my child can see me. I want my son to be proud of me. He was my biggest fan when he was alive. He couldn’t do anything until he knew I was okay, and I couldn’t do that to him now that he is gone. Do you think our children want their memory forever linked with pain?”