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Redefined by the Death of a Child

by David Roberts

Jeannine’s Story
In May of 2002, life seemed good……… and predictable. On May 2, 2002, my granddaughter Brianna was born. My daughter Jeannine, Brianna’s mother, was at 18, content with the way her life was going. She had recently become certified as a nurse’s aid and was working with her mother Cheri, at a local nursing home. Jeannine was in love with her significant other; who, at 19, was mature beyond his years. He treated Jeannine well and loved her unconditionally; as a father that is all that I wanted for my only daughter. I had two wonderful sons, who were thriving well in college and high school respectively. I had been happily married for 20 years and was firmly entrenched in my job as an addiction counselor for the state of New York. I completed my requirements for my masters in social work and was officially awarded my degree on May 19, 2002.

On May 26, 2002, everything went horribly wrong. Jeannine was diagnosed with alveolar rhabdomyosarcoma, a rare and aggressive connective muscle tissue cancer.

Prior to Jeannine’s diagnosis, she had injured her right foot. Her foot became progressively swollen during her pregnancy and was not responding to traditional treatments (i.e. walking boot, rest). I thought that her swollen foot was simply a predictable complication of her pregnancy. Of course, I was so preoccupied with completing the requirements for my master’s degree that I was oblivious to what was actually going on physically with Jeannine. Looking back now, it really didn’t make a difference how oblivious I was; a cancer diagnosis was never a possibility I even remotely entertained. In April of 2002, Jeannine’s podiatrist suggested that she get an MRI of her foot. However, Jeannine opted to wait until after her pregnancy, because she did not want to jeopardize the health of her unborn child. The MRI was performed after Brianna was born and revealed an undefined 8-centimeter mass at the bottom of her right foot. Our local oncologist confirmed her cancer diagnosis.

On June 2, 2002, Jeannine was evaluated at Dana Farber Hospital in Boston, Massachusetts. Dana Farber is known to be one of the best hospitals in the country for the treatment of pediatric sarcomas as well as for sarcoma research. We (my wife and I, Jeannine and her significant other) drove five hours to receive a 10-minute consultation with Jeannine’s assigned oncologist. What we were told is that Jeannine had a Stage IV sarcoma with distant metastasis and both bone marrow and lymph node involvement. We were also informed that Jeannine’s cancer was incurable and that our only hope was aggressive chemotherapy designed to put her cancer in total remission until a cure was discovered. I left Dana Farber with the stark realization that Jeannine was going to die a gruesome death. The only thing I remember about the ride home was the excruciating physical pain that Jeannine was experiencing.

When we got home, Jeannine informed me that she was not going down without a fight; I expected nothing less from the girl with the warrior’s heart. Jeannine underwent six rounds of chemotherapy at home between June and October of 2002, but her cancer was only deemed to be in 80% remission following the treatment. Eventually, her cancer metastasized again to all parts of her body. On February 19, 2003, Jeannine consented to Hospice Services; on March 1, 2003, she died at home.

As an aside, shortly after Jeannine was diagnosed, she, her significant other, and Brianna all moved into our house. Jeannine’s significant other and Brianna lived with us for four years after her death. They remain a part of our lives today.

All of my education and training as an addiction counselor did nothing to prepare me for the death of my child. Children are not supposed to die before their parents or their siblings. The world as I knew it, no longer existed. The life I had before Jeannine’s death was now foreign to me. At the age of 47, my assumptions about life and death were shattered into a million pieces. I had to face the unenviable and terrifying task of trying to rebuild my uncertain world without the physical presence of my daughter.

My Journey………So Far
I want to share the evolution of my grief journey and the lessons that I have learned as a result. I also acknowledge that some of you who are reading this may be in so much emotional pain that you can’t even begin to conceptualize gains made or lessons learned as a result of the struggle with the death of your children. Even if you can’t identify today, you may down the road. Our journeys are marathons and not sprints. The pain of losing our children never truly goes away. Our grief journeys are circular, life long, and don’t progress in predictable, linear stages.

One of the most important things that facilitated my grief journey was an activity that helped me stay connected to Jeannine. Jeannine and I shared a love of music; some of the best memories that I have of her are because of our shared passion for music. It made sense that I began to confront the pain of her death by: 1) listening to music that we both enjoyed and 2) using lyrics from performing artists such as the Counting Crows, Jackson Browne and The Wallflowers to connect with my thoughts and feelings during my early, middle and later grief. The time that it took for me to navigate from the raw pain of Jeannine’s death in early grief to learning to live with her death during later grief was unique to me. For others, it will take as long as it takes.

This passage from Neil Peart, from his book “Traveling Music”, expresses the overall significance that music has had for me throughout my journey.

“In the swift whirl of time, music is a constant, reminding us of what we were and that toward which we aspire. Art thou troubled? Music will not only calm, it will ennoble thee.”

My musical journey of grief was the springboard for other important lessons about coping with catastrophic loss and of unconditional love, faith, service and the enduring power of relationships. Here is what I have learned so far:

Keep moving, something will come up. I read a book called “Ghost Rider: Travels on the Healing Road” also by Neil Peart. Peart is the drummer for the Canadian band, Rush. In the span of 10 months in 1997 and 1998, his daughter Selena died at the age of 19 in a car accident and his common law wife, Jackie, succumbed to stomach cancer. One year and ten days after the death of his daughter, he embarked on what turned out to be a 55,000-mile, fourteen-month journey on his motorcycle across Canada, the United States and Mexico. He rode “to try to figure out what kind of person I was going to be and what kind of world I was going to live in”. The book describes his travels and the intense emotional pain associated with his losses. He also rode in the hope that “something would come up” to give him a reason to live. In the beginning of his journey, Peart described that the first possible hint of an upturn was when he looked at two wedge-shaped rocks sticking out of a lake and thinking that he liked them, because they looked like two ducks facing each other. He goes on to further say: “My eyebrows lifted at the realization; I actually liked something: and thus from that pair of rocks, I began to build a new world.” Sometimes the promise of a new world after the death of our children comes from the most unusual places.

Shared Pain is a Gateway to Hope. Working through my pain with the help of others allowed me to celebrate Jeannine’s life, and in the process, find a renewed sense of purpose.

Sadness Can Transcend to Unconditional Love For Others. The profound sadness that I experienced after Jeannine died coupled with the love that I still have for her has allowed me to share my love with my Utica College students and other young adults who have crossed my path. My sadness has also allowed me to experience that unconditional love with others who have experienced death or who have faced other transitions in their lives.

Progress Made is Never Progress Lost. Sometimes the emotional roller coaster of our grief makes us lose sight of this fact. Make it a point each day to celebrate your progress, no matter how big or small. Either verbalize it to yourself or to someone else (including your child) or journal about it, whatever you are comfortable doing.

There is Spirit in Everything and in Everything There is Spirit. I have, in the last 19 months of my journey, embraced the wisdom of Ted Andrews and Jamie Sams, both revered Native American teachers. They have taught me that there are lessons to be learned from all that is a part of nature. I have learned to walk in awareness of all that the world has to teach me. The lessons that I have learned have provided much needed clarity in my journey.

The Power of Ceremony. On her ninth angelversary date in March of this year, I developed a ceremony involving incense, prayer and music. I started my ceremony at about 5:30 AM. If you add the numbers 5, 3 and 0, you come up with 8, which, among other things, is the symbol for infinity or eternal life. I burned Native American incense that is designed to, from my perception, cleanse and purify the mind, body and soul. The music that I chose was a mix of instrumental and lyrical pieces that had the same intent as the incense that I chose. I alternated music with prayer. There were two prayers that I used. One is a Native American prayer emphasizing that our deceased loved ones are still with us in all forms in the universe. The second was a prayer that I wrote specifically for Jeannine using Native American influences. In it, I prayed that Jeannine would continue to develop the wisdom and spiritual growth in her new life to help enlighten others on their life journeys. I had finally in prayer, given her permission to grow in her new life. I also told God that I fully entrusted Jeannine’s soul to His care and guidance. I also thanked God for his unending faith in me, even when I questioned my faith in Him. It felt empowering to give her that permission to grow in her new life and to share her wisdom with others.

Pieces of Jeannine are now Pieces of Me. Embodying the best qualities of Jeannine has allowed me to redefine myself and has enabled her to become my partner in my service work. Our relationship is different, but as strong now as it ever was, and purer.

Our grief journeys are not about closure. They are about adjustment and staying connected. My adjustment to Jeannine’s physical absence has been made easier by the understanding that she continues to guide me in my redefined world. I have also discovered that not everyone will support our continued connections to our children because of their perceptions that grief is a time-limited process. Instead of becoming frustrated, I find individuals and groups who are willing to support my journey.

What I have discovered today is that my grief journey has evolved into this wondrous mix of love, joy, pain, and challenges. Our ability to be totally present in those joyful moments, give and accept love, and learn from the pain and challenges, will determine the quality of our life after loss.

“The world breaks everyone, and afterward, many are stronger at the broken places.”- Ernest Hemingway

About the Author: David J. Roberts, LMSW, CASAC is an addictions professional and an adjunct professor in the psychology and psychology-child life departments at Utica College. He is a contributing writer for the Open to Hope Foundation. He has written articles for other grief and self-help publications, as well. He has presented at national conferences and gatherings for The Compassionate Friends and Bereaved Parents of the USA since 2008.and 2009, respectively. He was the opening keynote speaker at the 2011 national gathering of the Bereaved Parents of the USA. He is also a Compassionate Friends chapter leader. He can be reached at his EMAIL. His website, Bootsy and Angel Books, LLC, provides information, resources and support for grieving individuals.