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Authors: Rita Volpe

Beyond Tears: Living After Losing a Child (11 page)

BOOK: Beyond Tears: Living After Losing a Child
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There can be no comparison of who has the worst pain, be they the parents of a young child who died or the parents of an older child who died. Both are hideous events that devastate those who survive. But we who lost our children in their early adulthood at least knew something of what types of adults our sons and daughters would have become in later years.
Ariella: “We got a good glimpse of who they were becoming. If you lost a toddler, you would have no idea what they would have grown to be like. I can pretty much imagine where Michael was heading and how he was developing.”
But, then again, there is the terrible emptiness that is left when one has had the company and the love of a child for fifteen or twenty years or more.
Barbara E.: “Regardless of whether the child was young or older when he or she died, the pain is the pain and both are tragic.”
Lorenza: “Young parents who lost a small child will carry that grief for a
longer time. I was in my fifties when Marc died and I will carry that grief through the rest of my life. But, parents who lose a child when they are in their twenties or thirties will grieve that much longer.”
In our group of nine, only one of us can empathize from personal experience with young parents who lose a baby. More than twenty-five years ago, when Carol Barkin already had three children, she gave birth to a baby following an extremely problematic pregnancy. The child was born at full term but with impaired lungs; she lived only a few hours. At that time, doctors opted not to attempt to save the infant and refused to allow Carol to see her.
Carol: “They never let me see her, which was a terrible thing. I was devastated. The baby had been born in October and for years when October came I would feel very sad, but at that time, you just did not verbalize such things. I mourned the loss of the baby and the life she never had. I had carried her for nine months but I never raised her. I never knew her or experienced the relationship we have with our other children. I did not feel the loss of that baby that I never took home or cared for anywhere near as much as I felt the loss of Lisa.”
We now understand the fragility of life all too well. We value our surviving children, and we want to hold on to them with fiercely protective arms. If we could only find a way to guarantee their safety in this all too dangerous world … . That has become our main concern.
For nearly ten of her short twenty-eight years on this earth, Lisa was afflicted with scleroderma. It is a relentless disease that sought to destroy almost every part of her body, and at times left her on kidney dialysis and on a respirator and subject to frequent hospitalizations. The disease robbed her of her strength, and affected her vision, her mobility, her breathing and her ability to swallow. It subjected her to persistent infection and made her skin and the tissue beneath it so taut that she could barely bend her knees or flex her fingers. Her fingers became gangrenous. Lisa’s death came as a result of the complications of anesthesia following an amputation of several of her toes.
The only thing that scleroderma did not take away from Lisa was her indomitable spirit. Throughout her terrible ordeal, she managed to attend and graduate college, do volunteer work at a children’s hospital, obtain a master’s degree in special education and endear herself to the children with disabilities whom she helped. Despite her illness, she married and never let her sickness interfere with her love or her love of life. As the husband she left behind said after Lisa died, illness was never her identity.
Lisa was the second girl in a family of three girls, the link between her sisters Shari and Wendy. As a baby, she slept until 10 A.M. and never cried. And, while she made life easy for us, it seemed that nothing ever came easily to her. She could not compete academically with her older sister, and she was never a “social butterfly.” She worked hard at everything she did. In her teenage years, she struggled with weight gain. Her self-esteem suffered.
Lisa was her own worst critic. She probably never realized that with time she grew to be a beautiful young woman both inside and out, a dynamic presence whose zest for life left a lasting impression on all who were fortunate enough to know her. We were so lucky to have had her. We miss her more than words can say.
Lisa was the kind of kid that everybody knew. She was completely open and told everybody everything … including family matters we would have preferred not to make public.
As a young girl, she played piano. She enjoyed tennis and Little League baseball; she loved horseback riding. In later years, the disease robbed her of all those favorite things; she even lost her ability to hold a tennis racket.
As a little girl, she once told me that if it wasn’t for her and her two sisters I would have nothing to do. How I wish I still had “nothing to do” for all three of my daughters.
Lisa was always the one to stay by my side in the kitchen when we prepared for guests. As I cooked, she would hang out there and try her hand at baking. She would read to me. The advice columns were among her favorite selections. Even today, I cannot prepare a meal for guests or family without envisioning Lisa sitting there reading me “Dear Abby” letters at Passover as we prepared the charoses for the seder table.
Lisa adored children, including her sister’s children whom she loved tremendously.
While still in high school, she did an internship with “special” children and saw the beauty in each of them. She’d come home and say, “That kid is so adorable.” When I met the children I was shocked; I hadn’t realized they were autistic. Her ability to help those kids led her to major in special education at Syracuse University.
Our joy at seeing our beautiful daughter off to college was short-lived.
One weekend when we visited her, Lisa told us that her knuckles seemed to be “popping out of her hands.” One doctor examined her and found no serious problem. Another doctor suggested she stay away from coffee. But shortly thereafter her fingers were turning blue. This time we went to a specialist and were given the diagnosis … scleroderma.
“It’s not a death sentence,” the rheumatologist told us. He was mistaken.
The doctors recommended Lisa leave Syracuse University and go to a warmer climate. She chose Florida State University and transferred there in her junior year. Despite continuous bouts with her disease, Lisa managed to be active in her sorority and developed many friendships.
She thoroughly enjoyed those years. Today there is a scholarship fund at Florida State established in Lisa’s memory by her father, Don, and me and her husband, Craig.
Following her college graduation, Lisa went on to achieve a master’s degree in special education. She was the only one of our daughters to obtain an advanced degree.
Throughout those academic years, however, she suffered through so much pain. There were repeated hospitalizations and procedures. At one point when she was given incorrect medication, she had to be placed on a respirator and her kidneys ceased functioning. We were told to “say good-bye” by doctors who did not believe she would survive that crisis.
Another time she could not digest any food and spent an entire summer in the hospital, where doctors thought she might have to be kept permanently on intravenous feeding. For a while, her father and I fed her through a tube in her chest. I remember one occasion when Don literally carried her into a doctor’s office and laid her on the floor because she was so ill.
We tried everything to help her, including meditation and hypnosis. Lisa never believed in that, but she tried it just to humor me. She would conceal her pain so as not to worry us. She never wanted us to deny ourselves an evening out or a planned getaway on her account. Of course, we would never go. How could we?
One year, Lisa underwent surgery to repair a burst bile duct. She was given general anesthesia and her lungs filled with fluid. She spent two months in intensive care and again doctors held out little hope for her survival. Again she rallied.
Lisa was all of five foot two inches tall, and your heart could break for all the physical and mental indignities her tiny body endured. She was cut up by so many surgeries and clumsy attempts to find her difficult veins. She was in and out of teaching hospitals, where staff thought nothing of discussing the various facets of her case in front of her as if she were invisible and incapable of comprehending what they said.
Still, she went on to do volunteer work at a children’s hospital while she obtained her master’s degree. It was there that she became reacquainted
with Craig, someone who had lived just blocks away during her early childhood. He was studying to be a child psychotherapist.
They dated, they fell in love and they became engaged. In 1993 at the age of twenty-six, Lisa married Craig Gootman. Her green eyes sparkled, her long silky brunette hair fell round her shoulders, and she was never so exquisite as she was on her wedding day. Sadly, she was ill for nearly the entire two years of married life that she and Craig shared before her death.
There came a time when several of Lisa’s toes had to be amputated because they had become gangrenous. The doctors suggested general anesthesia. Don and I recalled her near-fatal reaction to general anesthesia some years earlier and begged her to have the surgery under local anesthesia instead.
But Lisa and Craig were married adults and they didn’t need our approval for whatever decision they made. They elected to have her surgery done under general anesthesia. Again her lungs filled with fluid and she was close to death. Don and I recalled she had cheated death three times before, and we clung to the hope that she would pull out of the crisis again. This time we were wrong.
Lisa and I spent a lifetime of time together in the short time we had her. We were like sisters. People thought she was my only child. That’s the way it is when you have a sick child.
Carol Barkin
How We Cope
I
n the fourth year after Michael’s death, Ariella suddenly found herself listening to music. Some time after Lisa’s death, Carol started volunteering as an advocate for foster children. Rita found new meaning in her life by nurturing her students. Audrey is sustained by giving of her time and love to two boys from impoverished circumstances. Barbara Goldstein sold her home and moved closer to her two surviving sons. We went on vacations, we colored our hair, we began to let light back into our shadow existence.
We never envisioned a future without our children, but with the passage of time we have been able to come to grips with that future.
Lorenza: “I am learning to cope with my new life. I am amazed at the resilience of the human spirit. How do I still function with such a broken heart? Where do I find the will to go on? Yet I do know that I do not want to die.”
It has taken us years to reach this place, to be able to say we do not want to die. At first we thought we wanted nothing more than to curl into a fetal position and be no more. Life held no further meaning or need for us. Our sons and daughters, who were our reasons for being, were gone, and we wanted nothing more than to join them. We were mothers of lost children and we too were lost.
We have moved beyond that. Surely there are days when our hearts seem still to break in half, when we want to go off someplace and scream or hide in a closet and not come out to face another day. But in between those times there is the warm hand of a tiny grandchild, the unexpected arrival of a sweet bouquet of flowers from someone who is thinking of us for no particular reason, there is an unexpected trip to Italy when the weather is warm and the sun beats down on us as we drive through the countryside. We have chosen to survive.
Rita: “I am living a second life now. My life as I knew it ended. In order to go on, I would have to create a new life and in many ways a new me. Getting better is not returning to who you once were. You can never return.”
As we said previously, we are in agreement that none of us could have made it through the darkest times of our grief without the support of other bereaved parents. To speak of coping is first and foremost to speak of those friends and partners in grief who have ultimately become our lifeline. We are forever indebted to one another for being there and acting as our safety net. We were there for each other at the beginning of our individual nightmares, and we remain there for each other today as we climb back toward some degree of normalcy.
While most of us still attend bereavement group meetings and keep in touch with members at large, Phyllis has made the bereavement group her own special way of facing life. She copes by helping others to cope.
Phyllis: “I was looking for answers. I was exhausted, crying constantly and living in a fog. Rage, anger and denial had become my emotions, and everything I did was but a temporary distraction. Finally, I was disgusted with feeling that way. There came a turning point, I cannot say exactly when it was, but I decided to take back control of my life. The nearest Compassionate Friends chapter was
some distance from my home, and so I started the Compassionate Friends group in my area. It was the best thing I ever did. Every one of us does something in the way of helping others to help themselves heal.”
Barbara G.: “I found just talking to people in the neighborhood or friends who lost a child or a spouse was a help for them and for me.”
Getting involved with some group or activity that has true worth and gives support to others has been key to most of us in our road to recovery. What began as distractions, ways to forget ourselves for a while, in most cases have grown to be integral parts of who we are today.
Much of what we now do to assist others we do as a tribute to our dead children. We may not have realized it at the time, but it was the search for a way to properly memorialize them that guided us in finding ways to contribute to our world.
Our legacies to our children include various types of funds, blood drives, food collections for the homeless, support of impoverished families and many more projects that live in perpetuity in our children’s names. In some cases, we have given needy children items that were part of our own children’s young lives, such as toys and stuffed animals that had been stowed away in closets and attics. A great many of our causes seem to focus directly on the well-being of young people.
As a group, we donated several trees to a school for the hearing impaired and we placed a plaque there inscribed with appropriate writing. We keep in contact with the school, which has informed us that our trees continue to grow as a beautiful tribute to our children.
Our community has a program called Adopt A Park, in which small pocket parks are offered up for “adoption.” The group or person who chooses to adopt is responsible for its upkeep and beautification. Such a project can include a plaque placed on a park bench or elsewhere within the park as a memorial to a dead child.
Your community may be willing—and only too happy—to permit a similar program on pockets of land which would be otherwise neglected and vacant.
Audrey: “Irv and I ‘adopted’ two boys from an economically and culturally
disadvantaged home. When we first met them they were ages five and eleven. Now they are teenagers. We tutor them, attend their school functions, visit their teachers, take them on vacations, spend much leisure time with them and include them in family activities. People often comment on how fortunate they are to have us … . I reply that we are fortunate to have them.”
“Jessica’s death and the remembrance of her life are what has inspired me to reach out to others. Doing something meaningful in her name has helped me to redefine my life. On the way to the cemetery there is a sign that reads, ‘We never stand so tall as when we stoop to help a child.’ It is an anonymous quote, and people tell me that the sign has stood there for many years. But I like to believe that Jess put it there because I never noticed it before when I was visiting the graves of other relatives.”
Maddy: “Because Neill’s years at Rensselaer Polytechnic Institute were the best of his life, we established the Neill S. Perri Memorial Scholarship there. We asked friends and relatives for contributions in lieu of flowers for his funeral. The fund has more than tripled and people continue to donate in Neill’s memory. Every year an engineering student at RPI receives the Neill Perri Memorial Scholarship.”
Phyllis: “We have a fund at Schneider Children’s Hospital in Andrea’s name and it perpetuates itself. And now our children are getting involved in raising funds from their generation.”
Lorenza: “My husband and I feel compelled to live out Marc’s dream of cleaner waters and the preservation of ocean life. We sponsor a marine ecology trip for underprivileged children in the hope of fostering their love for marine life.”
Barbara E.: “For three years we left the door to Brian’s bedroom shut. It was like a shrine. Then one day a colleague was holding a clothing drive for earthquake victims in South America. I forced myself to clean out most of Brian’s clothes. It was terribly painful, but I was doing it for someone else who was suffering and that made it okay.”
A friend of Lorenza’s urged her to attend a doll-making class to take her mind off Marc’s death. Today, as a result of that class and as a tribute to Marc, Lorenza makes soft, stuffed dolls with outfits and presents them to relatives and to needy and sick children.
During his short life, both on his own and with his fraternity, Howie
worked to provide meals for the homeless and hungry. After his death, friends of Howard Goldstein established The Howie Fund as a memorial to him. Today The Howie Fund is being carried forth by the Goldstein family. They raise monies to be given to charitable causes, particularly those that work to feed hungry children.
At the beginning of our transition days, some of us ran too quickly, trying to get away from something which offered no escape. We were in fast forward and afraid to slow down for fear the pain would overtake us. We had to learn to moderate our lives or we would make ourselves sick. For a while we worked too hard, sometimes even laughed too loudly. We were off-kilter; our raw feelings kept spilling out and we were exhausting ourselves. But, with time, we learned to pace ourselves.
Rita: “I lost myself in my work and, at the beginning, I was exhausted but I just kept going. My students became my focus; that’s all I did. I knew to survive I would have to find new meaning and to me it was these kids. I did shows and fairs with them, started a student business, and my students excelled, won awards and competitions. I was involved in their lives and it mattered. My life found meaning again. Slowly, the nurturing part of me was reinvested in my work … and eventually I learned to stop running in fast forward.”
We found that reading and writing were a catharsis. We created a reading club and a writing group wherein we could share our grief and our recovery. We have wonderful discussions and we bounce ideas off one another. Of course, these are ideas which might seem maudlin to the average reader, but we are our own special type of book club with our own unique needs and desires.
Ariella: “In the beginning, I only wanted to read anything to do with death, afterlife and spirituality.”
Barbara E.: “I needed books in which a child died.”
We find we can often write what we cannot verbalize. Writing can be an outlet for the jumble of feelings and emotions that build up within us and need to be let out. Often we write to our children to provide ourselves with yet another outlet for our jumbled feelings and emotions.
To My Daughter Andrea
I can talk to you, be inspired by you, I can laugh with you, I can walk with you, I can remember you, I can learn from you, I can hear you, I cannot see you, I cannot touch you, I cannot hug you, I cannot kiss you.
Phyllis Levine
A Simple Wish
Sometimes now I like to be alone. I sit quietly and I feel I am with him.
I see his face, I hear his voice, I remember his laughter and recall his
Excitement and his joy of life … I miss him so much.
I don’t cry as much lately, but when I do, I cry for what he has lost.
He loved life. He was sensitive and compassionate.
He was kind and loving. He had so much to live for.
Feelings of deep pain, emptiness, lack of true peace and tranquility are
with me now always.
Oh, how I wish I could see him again. Just one embrace.
Lorenza Colletti
To Howard on His Twenty-Fourth Birthday
I am the keeper of the flame
When others hesitate to …
I say your name.
I am the teller of the tale
Words spoken calmly
While inside I wail.
My tears are a stream in which memories swim
While I have breath
Your light will not dim.
For some it is hard to speak of you
For me it is hard not to.
I am the keeper of the flame
I never hesitate to say your name.
Barbara Goldstein
Sleepwalking
Some nights I feel compelled to sleep in your bed.
Your pajamas are just as you left them, next to your pillows.
I haven’t laundered them;
You had worn them only once before you died.
At first I believed that if I left your pajamas on your bed,
folded neatly,
You would come home and put them on.
Some nights, I could swear that you are home.
I breathlessly approach the doorway to your room,
half expecting, half hoping to find you there.
I am always disappointed.
I lie down on your bed, weeping silently,
filling the cold sheets with the warmth of life,
even as the warmth of life no longer fills you, my son.
Madelaine Perri Kasden
Full Circle
Within my womb you stirred and we were one
One day an empty cradle, the next a miracle it held.
My existence forever changed, a mother I had become
Great joy and love unsurpassed in life
I cared for you and held you close my precious one
The years passed swiftly and I sighed when you finished your teens
A man now, how I burst with pride as I watched from afar … who knew?
But the cradle is empty again and so am I
My son, my son
My heart is ripped apart, my senses scream for you
No where to be found
The darkness is intolerable, the shadows engulf me
My existence forever changed again—full circle we have come
Now again within me you dwell and forever we are one.
Rita Volpe
BOOK: Beyond Tears: Living After Losing a Child
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