Through the Eyes of a Child
I was born in Czechoslovakia, and when I was nine years old in April of 1986, Chernobyl exploded.
Reports of an accident had surfaced, but the government covered it up so as not to instill fear in the public or embarrassment towards the west. When it exploded, my father was on a hiking expedition in the mountains to the north, where unbeknownst to many, a radioactive cloud from the damaged reactors had passed. He returned from that trip with a strange sunburn that caked his face.
We didn’t think much of it at the time. I mean, who would assume that he had been radiated on a mountaintop hundreds of miles away from the incident? It would be almost a year later that my dad was diagnosed with leukemia.
I knew nothing of his illness. My mother’s instinct was to shelter and protect us from my father’s condition. So she said nothing, and we knew nothing. For two whole years after his original diagnosis, we were in the dark, oblivious to his deterioration.
The Christmas of 1988 was different from years past. I remember Dad watching us open our gifts with a sad smile on his face that quickly turned to into deep introspection. That Christmas Eve would be the last night that he spent in our apartment. He left for the hospital the following day.
On a cold January morning in 1989, Mom told me to go to the hospital. It was just across the street, so my trip was short. I walked down a seemingly endless maze of white, uninviting halls towards room number 18. Entering the room, I saw a shadow of the man that my father once was, pale and grossly underweight, virtually enveloped by his bed. I stared at him. He looked back with deeply sunken eyes. How can this be my father? This couldn’t be the man who watched me open presents just a few weeks ago. I didn’t know what to think. I tried to talk to him, but I couldn’t. He died two days later.
Memories of that day have stuck with me for the last twenty five years. I will never forget the combination of anger and confusion that I felt.
People wanted to help, but weren’t sure how. They would try to start conversations with me, and I could tell that they wanted me to express my grief; but to be honest, that’s one of the most difficult things for me to do. I never cried. I had a hard time expressing myself, so I became isolated. I had difficulty focusing at school. I was stuck.
There were no resources available, no internet to research how to deal with grief, no on-line communities that could offer help. As much as I hurt inside, I never had the opportunity or emotional support that would allow me to grieve appropriately. I’ve haven’t laid that time of my life to rest, and I’ve never had a chance to reflect on it until my own children’s recent experience mimicked my own.
Through the Eyes of a Mother
It would be twenty-five years later when my father-in-law Efrem, the man who became my second “father,” was diagnosed with adenocarcinoma in February of 2013. He died February 5th, 2014. The year in between was filled with hospital visits, doctor consultations, chemotherapy treatments, and occasional hope at times when he seemed to get better. Eventually, the visits to the doctors became so numerous, the inevitable truth of his disease became too hard to ignore. The one year we got following his diagnosis felt like a gift, but the last few months were agonizing. It was painful to see him suffer, but at least I had a year with him. I only had five weeks with my own father by the time I learned of his illness, and by then, there was absolutely nothing we could do to help. This was a second chance to try and make a difference in the life of a dying man that I loved.
Realizing the end was coming closer, I feared more for my children than for myself. I could process death better as an adult, but Aidan and Ava were just 10 and 8. Aidan especially, lived for his grandfather. My husband and I started preparing for how to help our children go through this loss a few months preceeding Efrem’s death. It was painful, but necessary.
We visited the cancer support center searching for any information that could be helpful. However, little was available aside from a few photocopied pamphlets and a social worker who gave some vague common-sense advice. “Talk to your children in matter of fact terms, don’t say that Grandpa died in his sleep, grief is a process, encourage questions, etc”. But that proved inadequate. There is no pamphlet that can prepare you for their heart wrenching screams, their panic-stricken trips to the emergency room, or their sudden fears of death and spiders.
For weeks after Efrem passed, Aidan wasn’t himself. He complained of stomach pains every morning, and couldn’t sleep through the night for months on end. He experienced anxiety attacks and would have to excuse himself from class, unable to breathe. He visited his guidance counselor three times a week. Some days he’d visit her twice in one day. The visits would calm him down briefly. The counselor had him keep a journal of memories of his grandpa. She tried all of her other available resources, but there was nothing more she could do for him, and after a while, she had to turn him away. I remember her shaking her head saying, “ I am sorry I can’t be more help to you. If only you and your husband were getting divorced. Then I could be offering you so much more.”
I decided to visit a local children’s bereavement support group, but I was told I couldn’t be helped. They only accepted children who lost their parents or a sibling. We were referred to a social worker and scheduled an appointment. But Aidan didn’t want to go. He said, “I don’t want to talk about grandpa anymore.”
For all the changes and medical advancement of the past 25 years, little has changed in the area of grief support. A grieving child still finds himself feeling just as alone and lost as I did all those years ago.
Turning Loss into Promise of a New Beginning
A few months went by, and Aidan’s struggles continued. Then his Aunt Judy, Efrem’s sister and former music industry executive, gave Aidan an electric guitar. We enrolled him in the “School of Rock,” and he began a two-week music camp. He took lessons in earnest and regularly practiced at home. He learned about the history of rock, about rock bands, and famous musicians.
As I watched my son bob his head in unison with the beat of the raucous drummer on the grassy stage behind the School of Rock’s brick facade, I realized this is what he needed. Not a journal, not talking about the loss. He needed the power of music. He needed the focus and passion that music can deliver. Aidan became totally engrossed in it. He finally had something else to think about other than death.
Lesson by lesson, I watched my son heal. He grew more confident and happy. He smiled a bit more and said grace at the dinner table once again, giving thanks for his family. We heard from teachers that his focus has improved. His grades improved too. He even became his student council president. He felt normal again amongst his peers, and now he had something to be proud of. “I’m playing for Grandpa,” he said. We had no idea that an activity like playing guitar could lift his spirits as much as it did.
My 8-year-old daughter Ava also struggled with her grief. Ava is a passionate, strong-willed child, known and loved for her unique style and charisma. She is like me in that she won’t discuss her feelings much. Instead of sharing her thoughts, she would abruptly start crying with no warning, saying she missed Grandpa. I realized that, like her brother, Ava also needed a focus, and something that addressed her needs as an introvert. Something that challenged her mentally and physically while still encouraging her sense of self-reliance.
Within three months of Efrem’s passing, she began taking horseback riding lessons. Seeing my 40 pound daughter atop an 1100 pound beast is quite a sight. Recently she began to canter. Watching her balance on her noble steed, I cried. Her smile and her inner strength shined. Her trainers were taken with her courage after just a couple of lessons. I know that the more she rides and the more she learns to love, care for and control her horse; the stronger and more resilient she’ll be when facing any challenge in life.
And this is the story of how the Efrem Foundation was conceived, and how it has evolved in such a short period of time. Our children have been our involuntary focus group and our inspiration. The idea of providing children with creative outlets seems like a unique way of looking at the problem of supporting a grieving child, one that doesn’t follow traditional paths or therapies. What started as an attempt to help our own kids heal has grown into a mission to provide resources to not only affected children and their families, but also to school counselors, teachers and health care professionals that currently have too little at their disposal to effectively guide families.