A Pain Unlike Any Other

I am 57 years old and no stranger to loss. My first experience was when I was five years old. My father, Austin, abandoned my mother and me for reasons that are still unclear to me; I never saw my father again.  When I was fourteen, my mother discovered that he had died when I was eleven years old. On March 11,1994, my mother Sadie, died of a massive bacterial infection.

The death of my last surviving parent was extremely painful not only because my mother was a huge influence in my life, but also because I felt orphaned. In 1998, my supervisor and mentor, Don, died of cancer.  These three losses affected me greatly but I was able to survive them. The love of my mother more than compensated for the loss of my father. I was able to address the deaths of my mother and mentor based on traditional societal expectations that revolved around grief being time-limited, and the further expectation of life returning to “normal” after the grieving was done.

Of course, my life has had many joyful moments as well. I have been happily married since 1982, and been blessed with three wonderful children, two sons and one daughter. I have also been employed as an addiction professional for the past 26 years and am an adjunct professor in psychology and psychology child-life at Utica College. I have been blessed with great friends and family.  I also expected that my life would progress in a predictable and orderly fashion. When I died, I figured my children would mourn my death and have hopefully some fond remembrances of our relationship in the years to come. Of course, I also expected they would marry and in the process give me a few grandchildren to spoil rotten.

On May 26,2002, my world, as I knew it and assumed it would always be, changed forever. On that day, my 18-year-old daughter Jeannine was seen by our local oncologist who suspected that she had a rare type of cancer called alveolar rhabdomyosarcoma. The diagnosis was confirmed on June 2, 2002 at the Dana Farber Cancer Institute in Boston. Massachusetts. Jeannine learned that her cancer was Stage 4 with distant metastasis and bone marrow and lymph node involvement.  She was also informed that her cancer was incurable, and that her only chance for survival would be aggressive chemotherapy designed to put her cancer in remission until a cure could be found. The five-year survival rate for her type of cancer at that time was 10%, so our family knew it was going to be an uphill battle, and that the outcome was not likely to be a good one.

Jeannine’s diagnosis was confirmed exactly one month to the day after her daughter and my only grandchild Brianna Leigh was born. Jeannine had injured her right foot early in her pregnancy and it became progressively swollen. Her injury did not respond to traditional interventions, so an MRI was done shortly after Brianna was born. An undefined eight centimeter mass was discovered on the bottom of her foot.  The results of a subsequent biopsy were highly suggestive of cancer and triggered a referral to an oncologist.

Following her diagnosis, Jeannine, her significant other, and Brianna moved in with me, my wife Cheri and Jeannine’s two brothers, Dan and Matt.  Jeannine underwent six aggressive rounds of chemotherapy between June and October of 2002, which only put her cancer in 80% remission. The cancer eventually spread again throughout her body and Jeannine died on March 1, 2003 at home, at the age of 18. Hospice was involved with her care during the last several days of her life. Jeannine’s significant other and Brianna lived with us for four years after Jeannine’s death. They are both still a part of our lives today.

Sorrow makes us all children again – destroys all differences of intellect. The wisest know nothing.”

Ralph Waldo Emerson

The pain that I experienced after Jeannine died was unlike any other pain that I had experienced in my life.  During my early grief, which for me lasted about two and a half years, the daily pain I experienced was identical to the pain that occurs when one violently rips a scab off of an arm. I was also faced with the unenviable task of learning to negotiate a world that was terrifying and uncertain to me.  All of the assumptions that I had about life and death were shattered. Children are not supposed to die before their parents.

I was told by a therapist I know that it is normal to take inventory of our lives in our 40’s and determine how we wish to live the remainder of our years.  At 47 it wasn’t about taking inventory, it was about starting life at this new beginning.

I am now in the tenth year of my journey as a bereaved parent. I have progressed from the raw, debilitating pain of grief to the point where I have found joy and meaning as a result of the struggle with Jeannine’s death. My world will never be the same without my daughter’s physical presence; my journey will be lifelong. I have however learned to live with both joy and sadness in my life.   In the process, I have also discovered the power of love, faith and the enduring power of relationships.

Here are some of the lessons that I have learned… so far:

  • Keep moving, something will come up: This thought was inspired by Neil Peart who wrote a book called “Ghost Rider: Travels on the Healing Road”.  Peart is the lyricist and drummer for the Canadian rock 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 a 55,000 mile, fourteen-month journey on his motorcycle across Canada, the United States and Mexico.  Peart embarked on this journey because, among other things, he was hoping that something would come up to give him a reason to go on living. Ghost Rider describes his travels, and the intense emotional pain associated with constantly reliving his losses. At the beginning of the journey, Peart observed two wedge-shaped rocks sticking out of a lake, and thought 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 hope and the promise of a new world can come from the most unusual places, if we are open to it and embrace it when it happens.
  • Working through my pain with the help of others allowed me to make the decision to celebrate Jeannine’s life, and in the process find a renewed sense of purpose.
  • The power of ritual: Jeannine and I shared a love of music during her life on earth. On her eighth angelversary date in 2011, I lit a candle and listened to music that we both enjoyed, for an hour. A sense of peace came over me and in the process I felt her presence. Developing ritual has allowed me to maintain an ongoing connection to Jeannine.
  • Pieces of Jeannine are now pieces of me.  Being able to incorporate or embody the best qualities of Jeannine into my personality has allowed me to become a redefined person, and has enabled her to become my partner in the service work that I do with others.  Our relationship is different, but as strong now as it ever was, and purer.

“She was no longer wrestling with the grief, but could sit down with it as a lasting companion
and make it a sharer in her thoughts.”
George Eliot

David J. Roberts became a bereaved parent after his daughter Jeannine died of cancer at the age of 18.  You can read more of his work here.

Photo credit.

24 Comments:

  1. gill said on August 14, 2012 at 3:16 pm ... #

    sos sorry for your loss thankyou for sharing Regards Gillfrom England

  2. marsha rickles said on August 14, 2012 at 5:08 pm ... #

    I lost my son 24 years ago this past Aug. 4th. Jonathon was only seven when he was hit by a car while riding a bicycle in town. He sustained brain trauma and died after a week in a coma. He was survived by his older brother who was his best friend, my husband, and me, along with aunts, uncles, and grandparents. Soon after he died, I initiated a campaign for bicycle safety and the use of helmets, which prompted the passing of a mandatory helmet law in the state of NJ. I miss my son every day but am somewhat comforted by the fact that because of his tragedy, many other children can live and many other parents will not have to grieve the way I did.
    When you lose a child, you have two choices-to crawl under the covers and hide from the world or to go on living and make the best of your life and to honor the life of your child. Life is never the same, but it can be good again.
    I was blessed with other children after I lost JOnathon and now, my oldest son has two little boys of his own. MY grandchildren are the joys of my life and I know they would have loved their Uncle Jonathon.
    Coincidentally, or meant to be, my dad just passed away on Aug. 4th. He was sick for awhile and had no quality of life. I believe that Jonathon called him to be at peace.

  3. Anonymous said on August 14, 2012 at 7:56 pm ... #

    Thanks for sharing your story. I was struck by how precisely you recounted the events that led to your daughter’s death. I am also grateful for the lessons you shared and the quotes. They will help me on my own grief journey. I am further strengthened by your acknowledgement that despite your loss, you can still find joy. How lucky that Jeannine left you with the gift of Brianna. And, knowing that your relationship can live beyond her death, and that the love continues. Be well.

  4. Dave Roberts said on August 14, 2012 at 10:26 pm ... #

    @ Gill. Thank you for acknowledging Jeannine’s death and it was my pleasure to share.

  5. Dave Roberts said on August 14, 2012 at 10:33 pm ... #

    @ Marsha. Please accept my condolences for the death of your beloved son Jonathon. You are right we can either crawl under the covers and hide from the world or make the best of your life by honoring the life of your child. Like you I chose, the latter and my life has been fulfilling and rewarding in a world that doesn’t have Jeannine physically present. But her legacy lives on in me and drives the work that I do. I am glad that your efforts to get a mandatory helmet law in New Jersey was successful. In that way Jonathon’s legacy lives on.

  6. Dave Roberts said on August 14, 2012 at 10:39 pm ... #

    @Anonymous. One of the things that I did was keep a journal during Jeannine’s illness and two years or so after her death, that helped me recall those dates. I am glad the quotes and lessons that I shared will be helpful to you in your grief journey. I never thought early in my journey that I would ever find joy again. But eventually I did amidst the sadness of her physical absence . Also the discovery that death does not end a relationship was and still is a comfort to me.

    Wishing you peace

  7. hkoskey@hotmail.com said on August 18, 2012 at 11:24 am ... #

    Thanks so much for sharing your story. I am 33 and lost my Dad when I was 8 and my angel soul mate Mother when I was 28. I resonate with a lot of what you said. I found and posted the same quote from Emerson just this week, lol. Its been 5 years since my Mom passed and I am still struggling daily and can identify with the sense of being orphaned. I love what you posted about the drummer from rush’s journey and finding something to get excited about or like again. Funny how grief can make the whole world seem to go dark. I will have to get that book. Its really inspiring to hear your story and other survivors of the most profound pain. Thanks for sharing this.

  8. Dave Roberts said on August 21, 2012 at 10:59 pm ... #

    @ hkoskey. Thank you for taking the time to read my post. Please accept my heartfelt condolences for the death of your parents. And the pain never truly goes away ; I have discovered that it is softer now and more manageable. In the beginning of grief, it does appear that we are swimming in darkness, but I have discovered that if we look hard enough, we can eventually discover a ray of light amidst that darkness. I am glad Neil Peart’s teachings resonated with you. His book is an open and honest read. I hope that you benefit from reading it.

    Wishing you peace.

  9. chelle said on August 24, 2012 at 3:03 pm ... #

    I lost my daughter in a car accident on August 1st, just 24 days ago. I love the idea of the ritual! I will do the same on her angelversary! I love that term! Thanks for your help. This is one club we never wanted to join! However, I am comforted that I am not alone! God bless you!

  10. Dave Roberts said on August 25, 2012 at 10:53 am ... #

    @Chelle. Please accept my condolences for the death of your precious daughter. I will keep you in my thoughts and prayers. I am glad that you found my article to be helpful. I have incorporated ritual and ceremony in my journey and that has helped me honor our relationship while developing some clarity along the way.

    You are right about this being a club that none of us ever wanted to join and I am glad that you feel comforted in knowing that you are not alone.

    Wishing you peace.

  11. Amanda said on August 25, 2012 at 5:22 pm ... #

    Dear Dave,

    First and formost; I am very sorry to hear of the loss of your daughter. You are right, children should never outlive their parents.

    Thank you for sharing your story. I lost my mom to cancer 1 year and 5 months ago and then lost my dad 7 months and 12 days later also to cancer. The years leading up to their passing were full of bone marrow transplats, chemo and doctor appointments. I resignated with your statement that you felt orphaned. I very much feel this way as well. I am 35 years old, single and did not have any siblings. When you loose those who are closest to you, it is so very sad, lonely and isolating. Let all the difficult decision with what to do with possesions when they are gone.

    The book you mentioned by Pert is exactly what I am looking for ‘Peart embarked on this journey because, among other things, he was hoping that something would come up to give him a reason to go on living.’ I couldn’t have said it better myself. I quit my job, moving and doing some traveling to find my reason.

    Thanks again for sharing.

  12. Dave Roberts said on August 27, 2012 at 3:45 pm ... #

    @Amanda. thank you for your validating comments. please accept my heartfelt condolences for the death of your parents. As an only child myself, the death of my parents coupled by the lack of siblings to share with accentuated my feelings of isolation. The amount of pain we experience when soomeone we are close too dies, is commensurate with the amount of love we have for them. There is no time frame to decide what to do with your parents possessions, you will no when the time is right….. No matter how long it takes.

    You will be in my thoughts and prayers.
    Take care

  13. Regina G. said on August 29, 2012 at 3:45 am ... #

    Thank you for sharing your story. My little boy drown on June 23rd. I really want to do something in his honor about swimming. I just do not want anymore families to have to go through what me, my husband and my 16 year old son is dealing with. I really appreciate your story God Bless you. Please take care.

  14. Cate Daniels said on August 31, 2012 at 3:48 am ... #

    Dear Dave,

    Thank you for sharing your story. Confirming how much your life changes after a world shattering event was comforting. I enjoyed “lessons that I have learned”…. Keep moving helps me a lot. A few days ago I took a 4 hour drive up in the mountains. I remembered a retreat I went on over 20 years ago and I felt a glimmer of happiness. My daughter died suddenly March 2011 and some days it feels like it was only yesterday. On Mother’s Day this year I had intense waves of grief. I’m told the second year sometimes can be worse because reality has settled in. You also reminded me of the power of ritual. I have been planting beautiful flowers at her grave site and it has helped me. I can’t get over the feeling that I still want to do something for her.

    Bless you and take care.

    -Cate D.

  15. Dave Roberts said on September 1, 2012 at 3:22 pm ... #

    Hi Regina:
    Thank you for taking the time to read my article. please accept my condolences for the death of your son. I am glad that you want to do something to honor your son. There is another parent that I am familiar with through Facebook named Derek Frechette ,who is doing a lot of meaningful work. He had a son who died in a drowning accident. You may want to check his Facebook page or google him if you don’t have Facebook.
    Take care Regina .

  16. Dave Roberts said on September 1, 2012 at 3:31 pm ... #

    Hi Cate:
    Thank you for your kind words. I am glad that Jeannine’s story and the lessons learned were valuable for you. Please accept my condolences for the death of your daughter. From my experience with Jeannine’s death, the second year was worse for me for the reasons that you stated. Neil Peart has said that music and motion has been the formula for him to deal with transitions in his life. If motion works for you, then do it. I like that you remembered a pleasant memory from 20 years ago to help you deal with your present pain. A friend of mind calls those”happy triggers.” I am glad you are discovering the importance of ritual. ritual and ceremony have been a big part of my adjustment to a world without the physical presence of Jeannine and has helped me honor the relationship that we have. I believe that as you progress in your journey ,you will find more ways to find meaning by honoring your daughter’s life.
    Take care Cate

  17. angie said on September 23, 2012 at 8:47 pm ... #

    Its been almost a year since i delivered my daughter who had died 2 days before.. not a moment goes by where i don’t miss her.. the pain is un bare able

  18. Dave Roberts said on September 25, 2012 at 10:41 pm ... #

    @ Angie. please accept my condolences for the death of your daughter. During my early grief the pain I experienced after my daughter’s death was excruciating . In time, it has become more manageable . I pray that will happen for you over time.

  19. Susan Quinn said on January 14, 2013 at 6:54 pm ... #

    Dear Dave Roberts, I so appreciate your ability and willingness to share with others your loss of your daughter Jeannine. I am glad you are able to have a continued relationship with your granddaughter….it sounds like you and your family were committed to do just that.

    We lost our son, Brian, just a little more than 9 months ago. An athlete, he died suddenly ay home in the early part of the morning. Heard a fall in his room, rushed to him and then my husband and I, unsuccessfully attempted CPR. We failed, we lost our precious son.

    Brian came home to us from Korea at 7 months. He enriched our lives and brought us joy for 21 years, 3 months……what do I do now? I am a childless mother….he is my heart…..he lived such a positive life, filled with great friendships…..he loved and is loved……I am filled with such anguish and sorrow….
    I grieve the lost life we would have continued to have together…….I feel life is just too hard…..take it moment by moment, one day at a time? Just breathe…that’s my mantra…..

  20. Dave Roberts said on January 17, 2013 at 9:52 pm ... #

    Hi Susan:
    Please accept my condolences for the death of your son Brian. He will always be your son. In the words of Morrie Schwartz,”Death Ends a Life, Not a Relationship.” There is also a great organization called Alive Alone for parents who have experienced the death of their only children.
    The pain and the weight of early grief can seem at times insurmountable. You have the right outlook of taking it a day and moments at a time. It is about survival and being gentle with yourself .It is my wish that with continued grief work that you will be able to experience joy and meaning amidst the sadness of Brian’s physical absence .
    Wishing you peace

  21. Susan Quinn said on January 21, 2013 at 3:00 am ... #

    Dear Dave Roberts,
    Thank you so much for your response. Thank you, too, for the reference to Alive Alone….i will seek their counsel…….
    Brian’s friends called him Panda Bear and tell me that they now frequently see pictures or other replicas of pandas and take them as signs from Brian…the most recent one was a picture of a panda with the words “stay calm and panda on”…that may be my new mantra, from my son.

  22. Dave Roberts said on February 24, 2013 at 9:26 pm ... #

    Hi Susan: You are welcome. Brian appears to be a very strong spirit determined to make his presence known to you and those whose lives he touched while on earth. I know that he will continue to be a part of who you are and what you do.

    Take good care

  23. nicola graham said on June 17, 2013 at 11:38 am ... #

    So sorry for all of your losses.
    We lost our little boy to cancer 10 months ago a week after diagnosis. We had been enjoying a family holiday, camping in Devon (UK). Reuben never came home.
    We couldnt donate his organs due to his cancer and also multiple organ failure. I couldnt bear for his life to be in vain. 2 days after we lost him we set up is charity. Reuben’s Retreat. We are busy raising funds to build a home for children with life limiting/threatening illness. its something to concentrate on and to use the power of grief to turn to something positive. It will also serve as a bereavement and counselling centre for families and siblings that lose a child. I want to reach out and help parents like us. Reuben was nearly 2. God Bless our angel children. Something no parent should have to go through xxxx Nicola

  24. Dave Roberts said on June 17, 2013 at 1:11 pm ... #

    Hi Nicola:
    Please accept my condolences for the death of your precious son Reuben. I think that Reuben’s Retreat is a wonderful way to honor and preserve the legacy of your son. Being able to provide counseling for those families affected by loss and a home for those children with life threatening illnesses is crucial. I wish you well in your endeavor.

    Thank you for taking the time to read and comment on my article.

    Wishing you peace

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