Life on Hold-The Weight of Death

For the past few days I’ve been walking around feeling like there’s a big weight hanging over me ready to fall at any moment. Getting things done has been a chore. Making plans beyond the next day has taken all of my willpower. It feels as though my life is on hold and that I’m just waiting. Read more

Valerie Sobel - Andre Sobel River of Life Foundation

Valerie Sobel is founder and president of the Andre Sobel River of Life Foundation that bears the name of her beloved teenage son who died of an inoperable brain tumor. She believes that the life she now has was born with the death of her son.

Her prior careers are eclipsed by the passion and the power of the current work of the Foundation. The mission of ASRLF is to help those single caregivers that are experiencing the devastation of the life-threatening disease of their child and are without the emotional and financial privileges that she had during Andre’s illness. Through compassion for those whose plight is so crushing, she created a way to help this underserved population that is virtually invisible to the community.

Social workers from the five major Southern California pediatric institutions affiliated with ASRL identify the families in need, and when all other resources have been exhausted or unavailable, they receive assistance within 24 hours. Since its inception 4 years ago, over a million dollars in direct assistance has been provided to buy groceries, assist with transportation, pay rent, and keep utilities turned on, and often to allow parents to bury their child with dignity.

The Foundation is currently implementing a national partnership initiative to bring its program to several East Coast Hospitals, and is exploring the public policy arena for greater funding. At present Valerie is collaborating on a book with Harvard pediatrician Elizabeth Rider M.D., titled Caring for the Caregiver: a Formula for Survival.

Valerie is member of the Academy of Motion picture Arts and Sciences, The American Society of Interior Designers (keepsakes from prior careers). She is a trained Court Appointed Special Advocate (guardian ad litem), a Charter member of Women of Washington/Los Angeles, Women’s leadership Council L.A., the Music Center’s Blue Ribbon, founding member of the Donor Circle at the Women’s Foundation of California, and Council of Women World Leaders.

Valerie’s daughter, Simone, is studying at Lynn University. When Valerie is not traveling, she shares her time between Los Angeles and Idyllwild.

Andre Sobel River of Life Foundation

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Dakota Winds: Planting Seeds of Hope

Thank you for the opportunity to share my experience with the IPPC (Initiative for Pediatric Palliative Care) retreat led by Deborah Dokken, your guest on Thursday.

I am the parent of Dakota, an adorable “old soul” who was diagnosed with cancer at two and died one week before he turned five. That was ten years ago. In those ten years, our family has turned our pain into a passion to help others who also find themselves suffering the loss of a loved one.

When Dakota died, my husband wanted to buy our two year old son, Dylan, a gift to remember his older brother. Not sure what he was looking for, Alan came upon a wind chime with a gargoyle. Dakota loved anything ugly. Alan brought it home and explained to Dylan that when the chimes rang it was Dakota talking to us. Dylan could talk to Dakota by ringing the chimes. From that day on, the winds began to blow and the chimes were ringing. We had such strong winds during his memorial service, some folks left thinking we were having a twister. The minister shared an ancient saying, “When a sould dies, the winds will blow. The greater the soul, the greater the winds.” We knew Dakota was a magnificent soul and the winds were just proof of his undying spirit. Since his death, the wind has brought us peace as the chimes remind us that Dakota’s spirit is always present.

Because of the peace and comfort we have found in the chimes, Alan designed our own wind chime in Dakota’s memory. The sunflower design symbolizes the continuation of life as we plant seeds of hope for brighter tomorrows. I designed a Kota Bear from the original bears I made for each family member from Dakota’s clothes. Each bear comes with a pattern, an apron or overalls, so it can be personalized. Each gift comes with a heart engraved with a loved one’s name to remind us that love lives on even after death.

Folks have shared their own stories of the wind since they have received the chimes. If you would like to hear more, please feel free to check out our website or email me for our free newsletter. Or contact me so we can talk, parent to parent, about our children - those on earth and in heaven.

With hope, health, and happiness,

Beth Page
Dakota Winds
www.dakotawinds.org
beth@dakotawinds.org

Death From Cancer: A Poem About My Father

My father died from lung cancer on January third, 2005. After entering a nursing facility for rehab, we soon discovered that he had stage four small-cell lung cancer. He lived for three and one-half weeks after his diagnosis.

While January third never had any signficance before, it now holds signficance for me that I would never have imagined.

The words to the poem describe how one often feels about the anniversary of a person’s death. Read more

Grief Support: The Don’ts

1) Don’t try to make the grieving person feel better. YOU CANNOT. For many grievers it only serves to make them feel guilty or worse. Grievers MUST experience the pain of grief for healing to ultimately occur.

2) Don’t tell the griever to give it time. Time has stopped for the griever. Life proceeds in slow motion. Life is too surreal to be identified with time. Read more

Losing the One You Love

I can’t imagine a more difficult or trying period: coping with the death of a loved one. This is especially true when they are relatively young or not showing a sign of a previous illness or disease. Auto accident victims immediately come to mind because of their proliferation. But there are other ways and means to cut short a life. Yet, does it really matter in the end? The result is that friends, relatives, and other associates remain here on earth to deal with the tragedy. I feel somewhat qualified to write about this because it happened to me twice. Read more

Holes in the Floor of Heaven

I would like to share with you a beautiful song that is comforting to the soul and powerful enough to heal the grief-stricken.

My wife, Bobbie, brought this song to my attention one day in 1998. It was a year before Bobbie was diagnosed with what would later be terminal cancer. Sixteen months later, she passed away. I was torn to pieces.

Since then, this song has meant more to me than any other song I’ve heard. It is very special to my heart and soul, because Bobbie introduced it to me. It reflects all my emotion, when I think of her and the rest of my family and friends who have passed on. Read more

There is Support… and Nourishment for Those Who are Grieving!

In November of 2005, my uncle passed away from non-Hodgkin’s Lymphoma. He was my very favorite uncle and he is greatly missed. He was a resident of Seasons of Life Hospice, here in Parma. The hospice team provided him, my family, and me with such wonderful care and support and we are deeply grateful. We shall never forget their kindness and thoughtfulness. Read more

Terminal Illness- Death and Grief

No one likes to think about illness and death, when we are well, we feel invincible and there is nothing that can prepare us for the shock and devastation of a terminal diagnosis. The knowledge that we can no longer take our lives or the lives we share with our loved ones for granted takes away our ability to plan for the future and removes hope from our lives. When a loved one becomes terminally ill, we grieve in anticipation of their death, we grieve for the loss of them in our lives and we grieve for our own mortality. Read more

Shared Anticipatory Grief: How One Club Faced It and Members Coped Together

I belong to The Study Club, a group founded in 1882 to educate women. The Study Club was an outgrowth of the Chautauqua Assemblies and its motto was “We Study for Light to Bless With Light.” Similar clubs were founded at the time and they have all faded away. Though my club still exists, it is dwindling.

Alice, a nurse and researcher, had belonged to club for many years. Members always looked forward to her papers. This year’s paper was supposed to be on a world leader, but the schedule changed after Alice had a physical exam and learned she had incurable cancer. She sent a touching resignation letter to the club and said she was in palliative care. How could we honor Alice’s life and cope with her impending death? Read more