Sunday, August 21, 2016

Loss of an Adopted Child

Loss of an adopted child is just as heartbreaking as it would be if the person had given birth herself, according to Peggi Johnson, bereaved mother of 19 year old Jordan, who in 2009 died by suicide. She says she has no idea what happened to trigger his death.

When Peggi realized she couldn’t have children, they went another route: not an agency but a private adoption through a lawyer. She retired from her corporate career and devoted herself to motherhood full time.

Peggi knew who the birth mother was and kept in contact with her for a long time sending pictures and letters about Jordan’s progress as he grew up. But, according to Peggi, the birth mother was erratic in picking up the annual letters and Peggi stopped sending them until the birth mother contacted an attorney and  Peggi updated her again, putting together a package for her. When Jordan died, Peggi and the attorney were unable to contact her for two years but she eventually found out and was very angry. “I wrote a letter of explanation and the attorney handled it.”

Peggi adopted both of her children, a boy and a girl, Jordan and Claire, who is now almost 25. Only approximately two percent of children are adopted. According to Peggi, there are those parents who adopt and also have their own children, for whatever reason they choose. She emphasized there is no difference in how you feel about those who are placed with you and those children who are your own. They are loved equally, she believes.

Growing up Jordan was a quiet boy but smart. He had a lot of close friends who were crazy about him, according to Peggi. “He did not have an impulsive bone in his body. I loved him beyond measure and miss him beyond measure as well every minute of every hour of every day.”

Some of the things he loved were castles, wolves, beanie babies, dinosaurs and Harry Potter. He was an avid reader who adored David Eddings, Robert Jordan JR Tolkien, J.K. Rowling, Gorge R.R. Martin, and Ursula LeGuin. He was devoted to his sister, his dog Cassie, his neighbors, his cousins and his youth group. His life was enriched by teachers. He took a PB&J sandwich to school every day through 12th grade!

Peggi and her husband, Jeff, didn’t try to “imprint” and she believe most parents are like this. In other words, she said, “We want to know how they turn out on their own. If my husband and I loved football, we wouldn’t try to force it on Jordan. Children need to make their own decisions about what they want to do with their life. My son was introverted; I tried to be his advocate and let him do and be what he wanted on his own terms.”

Her other child, Claire, always wanted to find her real parents, particularly after Jordan died. “I was supportive about her finding as much family as possible,” said Peggi. Claire now knows her birth mother and has met with her several times. They will be visiting soon again and Claire will meet, for the first time, other close relatives. She is very excited about this, but, as Peggi says, “It doesn’t take away from how she and Claire feel about each other.

“The most important part of being a parent is unconditional love,” she says. “And I did give both my children unconditional love.”

Complications arise when the child dies, because you feel responsible that you were entrusted with this child and you couldn’t keep the child alive. “I don’t think I have healed,” says Peggi. “I think I have a limb that has been permanently amputated, and I try to do the best I can with it. I try to make my life meaningful, productive and helpful to others. That’s the best I’ve got. I endure it as well as I can. I don’t mope around.”

Peggi is a hospice volunteer, writes articles for TCF and presents workshops at the national conferences. She has talked about adopted children at three previous conferences. She and her husband are both active in their local TCF chapter in Virginia, enjoy being with other bereaved parents and do everything they can to honor Jordan.

Sunday, August 14, 2016

Sudden or Violent Death

Sudden or violent death of a child - workshop

The Sudden Death of a child is very close to my heart. It is the way my daughter died at age 27, and I always want to hear and read more about the topic.

Parents become paralyzed when their child died suddenly. They are in a state of shock, and it can take a long time to comprehend. There is no opportunity to prepare, resolve misunderstandings or, or most important, to say good-bye. My daughter and I had a wonderful relationship and when she was suddenly killed in a horrific car accident four months after her marriage, I couldn’t believe it. Neither can most parents. Our lives are changed forever.

Shock is our first response to news of a sudden death. We can’t believe what has happened, nor can any relatives or friends. It can take days, weeks and in some cases, months, to comprehend emotionally what has happened. You may have a fear of going crazy: what could you have done, should have done. This can lead to anxiety in your chest, lack of sleep, and an inability to function normally. We are angry at the injustice of it all; we anguish that the loss is forever, we yearn to be with the child; we might also focus our anger on those responsible. In my case, the man who smashed into them was never caught.

Bereaved parents also want to reach out for a “sign” from their child, and can be highly susceptible to the power of suggestion.

We ask ourselves “if only” and “What if.” We have guilt about what might have saved our child. Our job is to protect our child and not blame ourselves for what happened. Four important points to keep in mind are (1) talk out your feelings with the family, (2) talk with those who have been there, (3) keep a journal where you can address unfinished issues and say things left unsaid, and (4) the need to blame oneself will move from a main focus of grief to a level of acceptance since many tragedies in life are not preventable or foreseeable.

My biggest focus was on Anger towards those responsible for my daughter’s death. There are often yearnings to die in place of your child. It is suggested you surround yourself with like-minded people, create special ways to remember, talk about your child, keep a special memory album, hold special memorial gatherings to remember and honor the child, hold blood drives, donate toys, become a spokesperson for a cause, have a birthday party every year and do a memorial tattoo on your body. A good site to set up a memorial website for your child is

Many families say that one of the most difficult things is to see the world go on when the child is gone. But there are many ways to remember. Include your child’s name in a conversation. Even if friends are shocked at first, they will get used to it and perhaps feel better about their own memories of your child. Tell stories, make a special memory album others can look at. Honor the child in any way possible. Give back by helping a newly bereaved person.

We learn to accept the death. It can take a very long time because each person’s grief is different. Complete recovery is a myth. We never get over it. The family unit is changed forever and they need both short and long term support when the death comes suddenly. You will find your pain slowly changing from intense to warmer memories and a commitment to lead our lives in honor of our child and in a way that would make that child proud.

These ideas and thoughts are all constructive, representing some good that can come from a tragedy. Reinvest in love, work and living.

Sunday, August 7, 2016

Grieving With a Spouse Who Did Not Raise the Child Who Died

Grieving with a spouse who did not raise the child who died - workshop

When you are grieving the death of a child and your spouse is not the mother or father, it is difficult for you to talk to them because they feel you don’t understand. They did not raise your child, they did not go through life’s experiences with the child, so how can he/she share this journey into the past with you, you might think.

Trying to grieve with a spouse who did not raise your child adds an element of loneliness to an already isolating loss. How do you keep this reality from wedging a deep crevase between the bereaved parent and the current spouse? It is true that some couples do okay coping, but at this workshop, parents shared some thoughts about how they deal with this problem.

One husband puts a shield up and doesn’t share his anger and deep grief with his wife. The wife says she suffers for him and tries to imagine what he’s going through. The wife was told by the moderator of the workshop that she shouldn’t expect to understand; that it’s inconceivable to relate to the one who is isolating himself.

Another man who had four children and told his wife to be, "If we marry, we're in this together, She chose to be his children's mother after the death of one of the children. Their marriage is strong because of patience, understanding and good communications.

Whether it’s the mother or father who is suffering, they will never be the same person. We have to recreate a new life to stay together in a different world. It takes a long time to realize you’re a different person and to actually function again. But eventually you do realize that.

Another spouse said her family broke completely and were never the same after the death. They found it impossible to talk to one another and share feelings. They divorced when it became impossible for both to communicate.

One mother said she sat down and wrote a letter explaining her feelings after her child’s death, saying this will all take time, that you are fighting this grief and want the relationship to continue, but it will take time. Let the spouse read it and understand that she, too, was suffering in her own way. She realized things would never be the same but didn’t want the relationship to falter, that there was hope for them. Sometimes a written form of communication can open channels to understanding.

This is also true for siblings left behind, who think parents favored the one who died and react accordingly. They cry around their friends and say they are not loved. This is simply not true, but sometimes a mother or father doesn’t have the capacity to let go of his/her grief for a very long time. If they sat down and explained this to the sibling, matters might improve significantly until things become closer to creating a new normal.

An exercise suggested by the moderator to help calm you down to talk is as follows: sit relaxed on a chair or on a sofa, breathe in through your nose slowly and hold it for a minute. Exhale through your mouth slowly. Do this three times during the day for as many days as needed. It is a form of Yoga. If you can do this in a quiet place, it is a great way to quiet the mind.

Sunday, July 31, 2016

Medical Error Death

When Your Child Dies Due To a Medical Error (workshop)

Improving patient safety is now the goal of Tanya Lord after her 4-year-old child, Noah, died due to a medical error during a routine tonsillectomy in 1999.

Parents may be tormented by unanswered questions and a new distrust of the medical profession. The guilt and grief fills these parents and makes them ask, “What could we have done differently?” They have a desire and passion to help change the system that has hurt them. “How can we cope with the reality of losing someone to a medical error?” she asks.

Statistics show that 98,000-144,000 people die from medical errors each year. It is the third leading cause of death right after heart disease and cancer. Most of these deaths are communication errors, according to Tanya.

The unanswered questions include: What happened? Who is to blame? What did I do wrong? Why did this happen? What were they thinking? And did they know what they were doing?

To find answers you need to access medical records, meet with medical staff and contact patient advocates. Sometimes there are no answers and no one to blame. “The whole system may be broken,"  said Tanya.

“Since my son died, I am always uncomfortable; I avoid going to doctors and hospitals,” she said. “I no longer think that they know more than I do. I worry and question a lot more.”

“Then there is the guilt,” she added. “What could I have done differently; I let my son down; I should have protected him better; I should have known better.”

Even if you do everything “right” it may happen again. There is a need to trust. And what do you do when you know they are wrong? You can try to sue them, but you may not get very far.“For your own peace of mind, try to forgive,” said Tanya.

What’s not known is that they’re trying to fix things. Many hospitals have started a patient/family advisory council. Tanya is on that council. She has the opportunity to change things now after going back to school and getting her doctorate.

“A lot of good is happening; volunteers are forcing changes in the system.” Although it may not be your hospital, your voice could help others,” she added.

Tanya was a special education teacher when Noah died as a result of medical error. Determined to better understand and work towards improving health care, she went back to school and got her master’s degree in public health and a Phd in clinical and population health research. She is currently the director of Patient Family Engagement for the state of New Hampshire and consults with local and national healthcare systems to improve communication, patient safety and patient engagement.

Sunday, July 24, 2016

Red Means Stop

Note: I begin this Sunday discussing some of the workshops in depth that I attended and/or the people I interviewed attending the conference that belong to a special interest group.

Red Means Stop is an Arizona organization of victims and safety advocates comprised of mothers, fathers and children whose goal is to save lives and prevent crashes that injure and kill drivers, passengers and pedestrians and to honor victims and their families. The group meets once a month in Scottsdale at Driving MBA. The executive director, Barbara Hoffman sat next to me in the bookstore and told me all about this organization. 

In January 1999, three families whose children died from red light runners founded The Red Means Stop Coalition. Barbara's son Michael Allanson,14,  was hit by an 82-year-old red light runner in August of 2004, while crossing the street in a crosswalk.

When formed, the Red Means Stop Coalition was the only known grassroots organization of its kind in the United States. There are many traffic advocates around the country who have similar programs now. Their long-term goal is to have the message about the dangers and consequences of red light running spread throughout the country until red light running is significantly reduced everywhere.

In Arizona, car crashes are the number one killer of teens and young adults age 15-24. An average of four people are killed in Arizona every month due to red light/stop sign running crashes.

The following are the areas the group is involved in.

Driver’s Education:

The group actively participates and plans events to educate drivers. Their education programming includes:
·         Speaking about the dangers and consequences of red light running at Traffic Safety Survival and Defensive Driving School classes
·         Speaking to students at high schools, about the consequences of red light running and making poor decisions on the road
·         Speaking to middle school and elementary school students about traffic safety
·         Speaking at fairs, conferences, and other events to raise awareness about red light running, distracted driving, and the importance of drivers education.
·         Speaking to parent groups about preparing their children to become safe and responsible young drivers
They also educates drivers by providing driver training awards to underprivileged teens in Arizona. Red Means Stop has partnered with DrivingMBA, a driving school in Arizona offering high level simulation training labs that are completely integrated with classroom and on-road instruction. These driver training programs teach a better understanding of the mental skills required to be safe, responsible drivers
In Arizona, over 200 car crashes a year are the number one killer of teens and young adults age 15-24. It is estimated that four people are killed in Arizona every month just from red light/stop sign running crashes.

Victim Outreach

If you, a family member or friend has been the victim of a red light running crash and would like to talk to other victims or need information about red light running laws in Arizona, use the contact information below. They are happy to talk, console and/or advise you.

If a recent victim and your case is still in the investigation stage or is working its way through the courts, confirm with the investigating officer or the prosecutor that the defendant is at the very least charged under Arizona Revised Statutes 28-672.  There may be other charges if drugs, alcohol or speed was involved. If an advocate is needed to write a letter to the judge or to appear in court with you,

This group can help. Email them at or call their office at 480-305-7900 and leave a message.

Community Outreach
Outreach and education is a key component of Red Means Stop’s programming. The board members and volunteers outreach to the community by holding events, public and private and in schools.
The board collaborated with victims of red light running and their families to compile their impactful stories into an educational book, Carelessness Is No Accident. Their goal is to get these books into the hands of teens and adults to raise awareness about the dangers and consequences of red light running.
Volunteer Opportunities

Volunteers are needed for Red Means Stop Traffic Safety Alliance. To volunteer email:

Sunday, July 17, 2016

39th TCF Conference in Scottsdale

I recently attended the 39th annual Compassionate Friends Conference in Scottsdale, AZ, with over 1,200 people participating, and I’m coming away with meeting many interesting people, speakers and attending many workshops. This year, many new special programs were added in addition to the 100 or so workshops.

For the next few weeks I will be telling you about some of the workshops and some of the interesting people I met at them. But this week I’d like to highlight some of the special programs and events that were held.

A special performance by Olivia Newton-John, Beth Nielsen Chapman and Amy Sky and a meet and greet with a photographer were on hand afterwards to take pictures with these lovely women, who sang songs from their new CD about working your way through the maze of grief and loss.

A trip to the Butterfly Wonderland to discover the amazing life of the butterfly from caterpillar to chrysalis to the moment it spreads its wings for the first time and takes flight into the world was viewed. It is the largest indoor rain forest atrium in the U.S. More than 3,000 butterflies from around the world are among lush tropical plants and flowers. It is one of the most amazing butterfly conservatories in the world.

For the first time, a Spanish workshop was designed to include the grief and bereavement process after the loss of a child, cultural aspects, diversity with the Latino community, how these bereaved parents feel when they are not surrounded by their families at the moment of their loss, the importance of the surviving siblings and their bereavement process, couples’ grief, the importance of communication and understanding of their individual grieving process. The atmosphere was filled with songs, poems and imagery.

A discussion about finding meaning and hope in synchronistic events in “whispers and dream visits” involving our children, siblings and loved ones who have died was held. Carla Blowey and Mitch Carmody believe that synchronicity (a meaningful coincidence) in whispers and dreams serve as a message of healing for the individual and the community. Participants were invited to share how synchronicity has inspired them to live a more conscious and hopeful life.

There was a “paint night”, a Love in Motion signing choir, a crafty corner, a hug station and a performance by the internationally renowned “Yellow Bird Dancers” (members of the San Carlos Apache Tribe.

The Healing Haven was an area of respite, relaxation and inner healing for attendees. With all the chaos of grief, there is always the need to find greater balance within. They offered chair massage, Reiki, yoga, meditation, breathing techniques and other aspects of healing.

The more than 100 workshops included both popular repeated sessions and new ones never given before. They included topics such as a candid conversation between a bereaved parent and a bereaved sibling, the impact of traumatic grief on the family structure, step-parents grief, dealing with grief bullies, the power of vulnerability (who am I as a griever), grieving with a spouse who did not raise my child, healing when faith is not an option, digital memory archive of your child, child dying from a medical error, learning to laugh after loss, and military and public safety loss.

Keynote speakers included Barry Kluger, who is trying to get passed the Farley-Kluger Initiative to allow grieving parents up to 12 weeks of leave from their jobs (now it is only 5 days); Nivia Vazquez, from Puerto Rico and Steve Fugate, who crossed America eight times (43,000 miles), walking all the way with a message of  “to mend the broken heart while it is yet beating.”

Sunday, July 10, 2016

Grief Beyond Belief

“God has a plan.”
“All things happen for a reason.”
“God never asks of us more than we can bear.”
“He is in a better place.”
“God needed another angel.”

If you are a religious or spiritual believer, these statements are not allowed in an online Facebook page or the closed Facebook group called “Grief Beyond Belief.” In 2011, Rebecca Hensler, founded the group, devoted to faith-free grief support. 

According to Rebecca, this group would rather hear phrases like “I’m so sorry,” “I’m thinking of you,” or “We think of your daughter often.” Comments should be compassionate and respectful of other members. She says that if  your opinion or experience differs from that of another participant, describe your own experience or opinion, rather than criticizing those of others.

The site, according to Rebecca, is to provide support for all kinds of loss: children, siblings, parents, and even pets. Rebecca lost her 3-month old son Jude in 2009. He was born with a birth defect and did not survive.
The aim of Grief Beyond Belief is to facilitate peer-to-peer grief support for atheists, Humanists, and other Freethinkers by providing spaces free of religion, spiritualism, mysticism, and evangelism in which to share sorrow and offer the comfort of rational compassion.

She found that most grief organizations such as Compassionate Friends, depending where you live and who is the head of it, may expound on life after death and seeing your loved one again. Rebecca was looking to create support for anyone grieving who doesn’t believe in God. Religious or spiritual content is not permitted anywhere on this site.

Opinions expressed on the site are those of individual atheist bloggers only. One blogger said that she was afraid to offend someone who did believe. If a child had survived a car accident, some might call it a “miracle” and a testament to the power of prayer. If the child died, it would be just part of “God’s mysterious ways.” Then the blogger realized that ignoring her being offended was ridiculous. Bloggers believe no one should be offended because they believe differently than those who are religious. Everyone has a right to believe what they want, according to Rebecca.
The purpose of this site, according to Rebecca, is to provide mutual support. Comments should be compassionate and respectful of other members.

Grief Beyond Belief is about peer to peer grief support. The group volunteers send out links to articles; people may comment, and those grieving can comment or write in for support. The closed Facebook group, which you must join, has 2,508 members. Blogs are written by supporters, and Rebecca travels around the country speaking to free-thought organizations on grieving as a non-believer, secular grief support and related topics. Articles on what the group does have appeared in USA Today, Culture Wars Radio and the Thinking Atheist podcasts.

The group does not provide professional grief counseling but can refer you to a specialist. They stress they do not endorse anyone in particular or receive any type of benefit from doing this. They are just trying to help.

Rebecca is a middle-school counselor in San Francisco with a BA in political activism and an MS in counseling. She currently lives in the Bay Area.