The trigger might be anything we connect with our children, perhaps a favorite television show, or a television show with an unwanted connotation.
Rita: “The autopsy shows where they focus in on the cadavers, young people with tags on their toes. And sometimes they carry those gruesome scenes through to another level—comedy.”
Phyllis: “I have never and will never watch a hospital-related drama because I see my daughter there in the hospital.”
Barbara E.: “But I’m different. I love it. I can relate to those shows that portray tragedy. If there’s a child who died, then it wasn’t only my child who died. I also found myself glued to the television for Mets baseball games. Brian loved the Mets; I watched and cheered.”
The types of shows or movies we do devour are those that tell of families shrouded in grief over the death of a child. We sit entranced; we are seeing ourselves on screen and know we are not alone. People who are not bereaved will caution us not to go to see a certain movie because it tells of an aggrieved family. But we are drawn; we cannot stay away. In the end, we often find they do not really capture the level of pain that we know. They fall short.
It could be a certain sport, a stuffed animal, or going into our child’s
bedroom that ignites our emotions. Something as seemingly innocuous as a child’s favorite candy treat, perhaps those little marshmallow chicks that appear each year around Easter, can send us reeling.
While a couple of us redefined our existence by moving out of the house that contained that bedroom and all the memories of when our families were intact, others of us believe you cannot escape the memories. They move right along with you wherever you go and continue to dwell under your same roof, no matter where it may be.
Barbara G.: “The ‘shadow grief’ moved with us when we moved out of state. We didn’t even have to unpack it. But the distance has made it harder to go to the cemetery, and that is difficult to bear.”
Each bereaved family has to find it’s own way.
Ariella: “Bob and I now live on a boat. We have found a sense of peace and tranquility on the water. It soothes our souls.”
Songs are particularly difficult.
Phyllis: “Only recently have I been able to move from listening to talk radio to listening to music. At first I drove blind when I heard music.”
As they did in the early days of our grief, a song’s lyrics seem to speak to us about our dead children. Some songs seem to carry a secret or encoded message from our children; other songs seem to describe them. Even with the passage of time, when we hear one of their favorites, we cannot help but cry. No matter where we are, we cry. If it has particular relevance, such as our child’s wedding song, we cry. Talk radio saved us in the first year of our grief, and it continues to comfort us. Some of us fall asleep with it droning on in our ears. It blocks out the thoughts that would keep us lying awake all night.
Who would imagine that there are such things as bereavement songs? But, in our universe, the one where bereaved parents exist apart from the rest of the world, there are a number of songwriters and singers, authors, poets and speakers who, like us, have lost a child and who dedicate much of their craft to such works.
Maddy: “Bereavement songs are the only songs I can bear to listen to.”
And of course there are the personal triggers brought on by the particular circumstances of our child’s death. Rita and Phyllis shudder
when they come upon an accident on the road. They cannot bear to stop. Lorenza cringes at the mention of the sea. Maddy cannot go to Atlantic City. Ariella cannot go into a hospital. These “no-man’s land” barricades we have set for ourselves will likely haunt us throughout our lives; they are too much a part of us to ever dissipate.
Audrey: “I cannot bear the sight of a jet ski. If I see an ambulance or some emergency medical personnel I get sick.”
Barbara E.: “I hold the whole state of Pennsylvania responsible for Brian’s death. It’s ironic though because the treatment he received there, at the hospital in Lehigh, was very compassionate. It’s just that he was in Pennsylvania when he got sick.”
Barbara G.: “We don’t know for sure, but it’s thought that Howie died in a fall. To this day, I cannot scale a ladder or climb to any height. It is impossible for me to look out from the window of a high story.”
The trigger might be an occasion involving a friend of our dead child. Because all of our children were older teens or young adults when they died, within a short time their friends were graduating from college, marrying, and having children of their own. We learned to steel ourselves for such events. Their friends often invited us to be at a wedding or a christening, in a quandary themselves as to whether it was kinder to omit us or include us.
Phyllis: “Mel and I went to our friend’s daughter’s wedding. The mother and daughter danced. It was so emotional for me. Even though we try to avoid such triggers, at that moment I was glued to the floor and leaving the room became impossible.”
In the early years, such events were almost impossible for us to attend, but as time passed we were able to gather the strength and to even appreciate the invitation.
Barbara G.: “We know better than anyone the meaning of the word ‘bittersweet. ’ It is when you stand at a wedding or a birth and know that a key member of your family is not there to be part of it.”
There are coping methods for dealing with such occasions. We discuss them in detail in the next chapter.
The new people that we have become often decry advances in technology.
Those of us whose children died in car accidents have great difficulty, for instance, with the invention of the air bag or the collapsible steering wheel, devices that might have saved our children’s lives.
Similarly, we rail not only against the medical profession that could not save our children, but against medical breakthroughs that came too late. We become horribly distressed to learn of a medical advance of today or tomorrow that might have saved our child who died of an illness, had he or she only lived long enough.
Barbara E.: “I used to be in awe of doctors and think they were all gods, no matter who they were or where they trained. My husband is a doctor. I don’t put all my trust in doctors anymore. Brian went through ten horrible months of chemotherapy and radiation. I don’t know what I would do if today they developed something that would have cured his rare form of leukemia.”
Carol: “If my Lisa is not here to benefit from it, I do not want it.”
Rationally, we understand that our views are colored by the fact that our children died.
Ariella: “I look at the whole medical system differently now. Having seen what Michael went through, if I had a terminal illness, I wouldn’t want to know about it or deal with it.”
We don’t want to hear about scientific discoveries such as the process for saving sperm for future use. Our children did not live long enough to have that luxury. We will not be able to have and hold the grandchildren that might have been.
Rita: “Loss begets loss; you lose a child you lose their children as well.”
Our physical appearances changed rather drastically in our redefined selves … so much so that we hardly recognize ourselves in current photos we must take, such as those required at the motor vehicle bureau. Indeed, we shy away from photo-taking. We do not wish to see old photos from when we were an intact family, and we do not wish to see new photos that reflect the grief in our eyes. We can immediately tell by looking at ourselves in any photo if it was taken before or after our heartbreak. We realize the years since our children’s deaths have taken a far greater toll on our appearances than they would have if things were otherwise.
Lorenza: “I could not look at pictures. They seemed unreal, as if I lived another life a long time ago. Looking at Marc’s smile in one of the photographs taken on his wedding day was like a dagger going through me. His wedding album arrived in October … one month after his death.”
Barbara E.: “I was able to look at the photos I already had on display before Brian got sick, but I was panic stricken when I came across a picture of him that I hadn’t looked at for years.”
We lacked the strength and energy to care about appearances. We wanted to be transparent, to disappear off the face of the earth if at all possible. If we cared at all, we did not want our children to look down from heaven and see us being overly concerned about something so irrelevant as our clothing, our makeup or a hairstyle. We did not want other people to look at us and wonder how we could bother to comb our hair when our child had recently died.
Maddy: “I stopped coloring my hair. Most people, including my husband, hate the way it looks now. But to me, the gray hair and the uncomfortable feeling it causes in others is my badge of pain. Maybe some day I won’t need it anymore, but for now I still do.”
Barbara G.: “I used to dress somewhat flamboyantly. My hair was frosted. After Howard’s death, I became a gray-haired lady; no use in disguising the outside when I felt such hurt on the inside. I did not want to be noticed. I wanted to fade into the woodwork.”
Lorenza: “I had difficulty even washing my face. As the water hit my face, I pictured my son struggling in the water. I could not wear high heel shoes because they made me feel dressed up.”
Our clothing color of choice became black. Even years later, while some color has reappeared in our dress, we still prefer darker tones.
Our newly defined beings have new vocabularies. Lorenza had never before known or used the term “bereaved”; now it defines her. She can no longer say the word “drowned.” Rita cannot utter the words “guard rail,” because that’s where her son’s car became impaled in his accident.
Our new selves come with new friends. Each of us has discarded those acquaintances and former good friends who could not or would
not deal with the deaths of our children. We have all cultivated new friendships, whether through bereavement groups or among new acquaintances or through the advances of modern technology. We are far more selective than ever before.
Ariella: “In the middle of the night, with thoughts of my son’s suffering going round and round in my head, I would get up and go on the Internet. I poured out my feelings of pain, regret and hopelessness into the computer. I connected with Ann, a bereaved mother from Africa whose seventeen-year-old son Stephan died after a long illness. We share everything and have become the best of friends.”
Maddy: “My good friends, the ones who pay attention and have learned from my tragedy, are different now with their own families, especially their children. They cherish them so much more.”
Carol: “My friends from the Compassionate Friends group mean everything to me. I feel because of these friendships I have gone back to being somewhat of a normal person again.”
We have all become totally intolerant of matters of little consequence. In a situation such as ours, we learn to set priorities. The little things we used to think were so important—we call them the “gotta dos”—are no longer necessities.
Rita: “I became more short-tempered. In the big picture, many things were no longer important. My threshold level easily reached its max. Day to day, I would blow a fuse over an insignificant event, and things that were so important in the past no longer mattered.”
For that reason, we cannot bear to hear parents whine about their children being an annoyance or regretting that they will soon be home from summer camp. Would that our children were coming home from camp.
Just where one’s children were in their lives when they died is also a factor for bereaved parents as they redefine their existence. There are differences in daily routine for those parents who had a child living full-time at home as opposed to those whose child was already away at college, or married or living on his or her own. When your child is young,
he or she is home all the time, and to a great extent the household revolves around the needs of the growing child.
Audrey: “You’re still doing everything for them when they are home … even if they don’t want you to. They are your everything at that point.”
Lorenza: “It was easier for me that Marc was an adult and married. A lot of his things were already moved out of his closet.”
Barbara E.: “When your child is away at school or out of the house, you’ve already started that separation, it’s true. But you can fool yourself into thinking they are still there since they weren’t in your life every single day. You can pretend they are still alive. I even continued making plans for his life. I thought about him getting married after graduation, and I thought about what type of wedding he would have. How many children would he have? It was the only way I could deal with the situation.”
Maddy: “In the beginning, I felt so grateful that he had lived at his college for five years. I had that break from him.”
Rita: “Michael was still living at home. I had to pass his ball field, his school. I imagined I could hear his knees hitting the wall at night when he turned over in his sleep. I heard phantom sounds.”