Uncommon loss: Mothers who grieve the death of a child

Print

Every story of losing a child is unique and painful, and every mother grieves in her own way. Is it harder to lose a child suddenly or to lose her after a long illness? Is it more difficult to lose a baby and mourn the life that never really started, or to lose an older child or adult and mourn what was? There are no answers to these questions. But there are many common threads in the experience of losing a child, say bereaved mothers and bereavement experts.

The Compassionate Friends Worldwide Candle Lighting is believed to be the largest mass candle lighting on the globe. At 7 p.m., throughout the world, candles are lit in memory of children of all ages who have died.

Events in the Twin Cities area include Chanhassen, Maplewood and Rochester. The event will occur on Dec. 14. More information on Compassionate Friends web site.

Always on my mind
Mothers who have experienced this loss agree that one of the immediate effects is the extent to which the dead child occupies the mother’s thoughts. “It’s the first thing you think of when you wake up in the morning, that your child is dead,” said Marsha Williams, whose 19-year-old son Larry died of cancer. “In the beginning it is constant.”

“At first I thought about Lily every moment of every day. I could not think of anything else. Now I still think about her. I think about her every day, but not every moment,” said Katharine Tondra, whose daughter Lily died hours after her birth.

An ear and a shoulder
“People are afraid that if they bring up the child’s name, the parent will cry. Yes, that might happen. We all cry. The question is, do we cry alone, or with someone?” asked Wayne Loder, public awareness coordinator for the Compassionate Friends, a national support organization for bereaved parents. Just listening is one of the best ways a friend can support someone grieving the loss of their child. “Allow [the parent] to talk about the child that has died as much and as often as they want,” advises the MISS Foundation, which provides support to bereaved parents.

“We want to tell the story over and over, and have someone listen with a box of Kleenex. We don’t want to hear an answer when we ask why, because there aren’t any answers,” said Cathy Seehuetter, who survived the car accident that killed her 15-year-old daughter Nina.

The support groups sponsored by Compassionate Friends were an invaluable part of her healing. “When I walked into that first meeting … I was invigorated to be with people who truly got it. They didn’t say, ‘Oh, I know how you feel; my dog died.'”

Support groups were important to Williams, too. It was, she said, important to be around people who had experienced the same thing because they truly understood what she was going through.

According to Seehuetter, “Friends that I thought would be really supportive drifted away … some people seem to think it’s contagious. I think it reminds them of what could happen. They have their own fears, maybe unresolved grief. Some just don’t want to deal with your sorrow and overpowering grief … all they have to do is be present.”

Although it hurt not to be able to count on close friends, support came from unexpected sources, Seehuetter said. “Others, fringe friends, neighbors you just waved to, came forward and became much closer.”

What helped
Doing the work of confronting and dealing with the grief is essential to the healing, mothers and experts said.

Some bereaved mothers find it helpful to write down their feelings. It was easier for Tondra to send emails than to talk to people on the phone. She also found solace in making scrapbooks and a baby book for her daughter.

“I think writing helped me process my grief,” Seehuetter said. She has had more than 100 postings, many about Nina, published in the Pioneer Press’ bulletin board section. She has also contributed to two grief magazines and “Chicken Soup for the Christian Family Soul.”

Talking with a trained professional can be invaluable. “I had a fair amount of therapy,” Williams said. It was especially meaningful to her when her therapist attended Larry’s funeral.

Giving to others was a way Tondra could remember Lily and help them too. She began to prepare baskets for families whose children were stillborn or died as infants in the hospital. In each basket she put things that were helpful but often overlooked: clothes for the baby, a hat, a baby book designed for infants who died, books to read, sweaters hand knit by her mother, a shadowbox with space for the baby’s picture and clay for her footprint, and more. What started out as a family project grew into a two-pronged one: Tondra takes the baskets to the hospital where Lily was born and died. Her church also participates and delivers to a different hospital.

Seehuetter became deeply involved in the Compassionate Friends, beginning as a support group leader; today she serves on the group’s national board. “People say, ‘Isn’t it wonderful that you’re doing this for Nina.’ I’m doing this with Nina. It’s Nina who dragged me, kicking and screaming, to the PTA,” she said, relating public activities her outgoing daughter involved her in.

Being there for other children can help a mother heal. Williams struggled through a depression that sapped her strength; for a time, it took all the energy she could muster just to go to work. Williams had two older sons, both young adults. “I kept reminding myself, the other boys need me,” she said. Caring for her young son was part of Tondra’s healing process. And Seehuetter’s 12-year-old son Dan, who had witnessed his sister’s death, needed his mother’s comfort.

“He’s done the thing of thinking he needs to be strong for his parents,” she said. “But kids are the forgotten mourners. People would ask him, ‘How’s your mom doing?’ and he would ask me, ‘Doesn’t anyone care how I’m doing?’ He’s a very compassionate kid. He told me, I think I have softer edges because I grew up with so many women,” Seehuetter said.

Williams said, “Larry would say to me, ‘I just want you to be happy, Mom.’

“I hear that takes a long, long time.”

The Minnesota Women’s Press talked to three mothers and several people who work with bereaved parents. These are their stories.

Lily’s story
It is obvious from the moment you walk in the door: This is the home of a family with young children. A cradle against one living-room wall holds toys. “Happy Halloween,” reads the shiny banner that hangs in the doorway between the living room and dining room. Halloween decorations vie with framed photographs for space. Children’s books are piled high on a tabletop. Nearly every surface is full of family pictures, most of them of Katharine and Mark Tondra’s three children. Daniel is 11, Tommy is 4, and Lily, the middle child, would have been a 5-year-old kindergartner today, had she lived.

While the photographs show Daniel and Tommy at various ages, Lily is a fragile newborn in every one.

The start of grief
“We did a lot of grieving at 20 weeks,” Tondra said. It was at that point in her pregnancy that they learned there was a problem with the fetus. Tondra’s doctor scheduled her for an ultrasound with a radiologist. He told her the baby was anencephalic, and advised the couple to terminate the pregnancy.

The Tondras had planned their second child carefully. Conception was easy, and the parents of healthy 5-year-old Daniel had no reason to think their second child would be anything but normal. There was nothing out of the ordinary about the pregnancy itself; the fetus was active.

Anencephaly is an always-fatal condition in which the forebrain and part of the skull is missing. Most babies with this condition are not born alive, and those who are live hours, days or weeks. Many anencephalic fetuses die in utero; other parents choose to terminate the pregnancy. Of those other pregnancies that are full-term, the vast majority are stillborn. The radiologist who broke the news was incredulous that Tondra wanted to carry the pregnancy to term. Katharine Tondra wanted to meet her baby. “I was her mom,” she said.

Lily Tondra was born on August 8, 2003, and though she lived only a few hours, she is very much a part of this family. The framed picture of lilies, a splurge purchase for Tondra, who said, “I’m not much of a spender,” hangs above the fireplace. A stained-glass lamp, handmade by Tondra’s sister, features a lily motif and the light from it shines over a photo of Katharine Tondra holding Lily.

In addition to the living room, in the second floor hallway of the Tondras’ home is a table devoted to Lily. A pencil sketch adorns the wall. One of Lily’s hats is displayed. “Lily was a five-hat girl,” Tondra said, ticking off the hats one by one. There are baby books and mementos, more photos, the clothes she wore, a certificate of appreciation for the donation of Lily’s eyes.

The Tondras had hoped that Lily might live long enough to come home from the hospital. Katharine and little Daniel planned what they might do if they had Lily with them for a couple of days. They prepared a baby book. “We were really sad that we didn’t have that time, with Lily,” she said, “but we did bring the book to the hospital to show her.”

Nina’s story
It was a great family vacation. Cathy and Greg Seehuetter, their 12-year-old son, Dan, and 15-year-old daughter Nina Westmoreland were spending time in Florida. It was Cathy’s birthday, and the family had just come back from Daytona Beach. The family’s two older daughters, both young adults, had not accompanied the family on the trip.

And then, life changed forever. A drunk driver crossed the median and hit the Seehuetters’ car on the left rear passenger side, where Nina sat. She was killed instantly. The car flipped over and the driver behind them was killed too, as was the driver who had caused the accident.

All of the family was transported to the hospital. Greg was unconscious, and Cathy had bits of glass on her face and in her hair. “The Highway Patrol came in and I was laying on a gurney, crying,” Seehuetter recalled. “They put Nina’s purse on my stomach and said, ‘Your daughter’s dead.’ The chaplain said, ‘She knows that.’ The patrol officer turned and went out.”

The hospital chaplain split his time between Cathy and Dan. “I asked him, ‘Why? Why? Why?’ With his tears falling on my face, he said, ‘I don’t know. There are no answers.'” She was, Seehuetter said, glad that he did not tell her it was God’s will.

The emergency room staff asked to see Nina’s picture. “They cried with me. They see trauma everyday, I was glad they weren’t callous.”

Somehow they got through the next days. A social worker stayed with them at the hotel, and helped them deal with the myriad of details surrounding the away-from-home death of a child. “They say your body produces a chemical that helps you get through these things. How else could I have done it, talking to the medical examiner, making arrangements?

“People say you tend to idealize a dead child,” Seehuetter said. “Nina was sparkly. She had a really vivacious personality, was freshman class president. She loved drama, was in girls’ choir, was happy to get a part in the high school musical.

“She crammed so much into the last year of her life. When she went to prom, she felt guilty because most freshmen don’t get to go. She was Miss Teen Cottage Grove. That’s a little scholarship pageant up here. It’s not really a beauty pageant, Nina was interested in it because there was a lot of community service.

“She had braces on her teeth and she was told that if she entered, not to smile, because the judges didn’t like to see braces. Nina said, “‘I’m going to smile! That’s me,'” Seehuetter recalled.

Life after Nina
“We talk about Nina in everyday conversation,” Seehuetter said. “A bereaved parent’s greatest fear is that everyone will forget their child.”

One way Nina’s memory lives on is through the scholarship her parents give every year in her name to a high school student, the Kristina Westmoreland Memorial Scholarship for Performing Arts.

“[Children who have died] are still part of your life,” Seehuetter said. “It’s like I have two different relationships with Nina-one before she died, one after she died.”

She doesn’t dwell on the driver who took Nina’s life. “Anger isn’t going to do me any good,” she said. “I need to focus on ways to live this life without Nina in it.” The Seehuetters decided not to sue the man’s estate. “It won’t bring Nina back,” she said. But there is something that bothers her. “I always did wonder why I never heard from the family. He has a daughter the same age as Nina,” Seehuetter said. “I just wanted someone to say, ‘I’m sorry.’ After the statute of limitations [to file a lawsuit] expired, I thought I’d hear from his wife.”

Miracles
One of Seehuetter’s most prized possessions is the Miracle Picture-the last photo of she and Nina together, on Daytona Beach. “Nina said, ‘Take a picture of me and Mommy,'” she said. “We threw the camera in the trunk of the car afterward.”

Back in Minnesota, Seehuetter realized the camera wasn’t among the belongings that had been recovered. “My husband called the highway patrol and said, ‘My wife has to have that camera.’ They told us the trunk had been destroyed, and there was a mile of debris from the accident. No camera had been found.” Seehuetter couldn’t let it go. Three weeks later her husband asked again. No camera.

“A week later, this little envelope arrived,” she said. “The name on the return address was Colonel Gordon Jennings.

“He told me he had walked the stretch of freeway and was about to give up when he spotted the flattened camera in the drainage ditch. He took it to Walgreen’s, though he doubted any pictures [would be recovered.]”

The picture suffered water damage. “There are lots of water marks,” she said, “But they stop before they get to Nina and I.

“It looks like a parting of the Red Sea. I view it as a gift from God.”

Larry’s story
Seventeen-year-old Larry was the youngest of Marsha and Russ Williams’ three sons. He was a kid who loved being outdoors, his mother said. “Riding his bike, skateboarding, being outdoors, sports. He loved to ride his dirt bike.

“If someone rode, he would ride faster. If someone jumped high, he’d jump higher. He was very agile, a risk taker, a daredevil.” He was, she said, also a loyal friend, the boy who would get out of bed in the middle of the night to pick up a friend who had car trouble.

When a lymph node under Larry’s arm became swollen, Marsha Williams thought it was a recurrence of mononucleosis he had had earlier.

When the test results came back, and it was even worse. Larry had very aggressive stage-three melanoma-a cancer that rarely strikes people his age. Williams got the news in a phone call.

“Larry was stunned, stoic,” Williams said. “He said, ‘Did you get the results? It’s not cancer, is it?’ I told him it was and he said, ‘OK. I’ve got cancer.’

“He asked the surgeon right away, when he saw her, ‘Will this kill me?’ She just teared up, and she said, ‘Yes. Eventually this will kill you.’ He just wanted straight answers.”

The cancer was so aggressive that, Williams said, “Within two months it moved to stage four.”

Private grief
Chief among Larry’s needs was privacy. When he was hospitalized, he was only comfortable with very close friends and family as visitors. “He did not want a Caring Bridge [web]site (a free, personalized site for people with a serious illness). A lot of people wanted to know how he was doing; to him, it was a private thing. That cut him off a bit-friends could have been calling, emailing him.”

He asked his family not to cry around him. “He’d always say, ‘No crying,’ and I’d leave the room to cry,” Williams recalled.

The doctors tried every possible treatment. “There was nothing to lose,” she said. Sometimes the nurses would apologize when they administered treatments because they knew how debilitating they were. “Larry would say, ‘It’s OK. Go ahead.”

Williams said Larry could always tell when a nurse had children by the way she reacted to him. Once he told her, “That nurse has a kid my age. I know because when she saw me her face fell and her eyes teared up.” He was right, Williams said.

Special treatment
In July of that year, after nine months of treatment, a PET scan showed that all the cancer was gone. “We spoiled him in July and August,” Williams said. “We sent him to Mexico with a friend. He loves classic cars, and we bought him an ’80s Impala, all tricked out. “Larry went back to school and on the first day, he had to go home with a headache. They found cancer in his brain.”

Williams sent Larry’s doctor a picture of Larry with the car; she wrote, “This is why we put him through hell for a year, for these two months.”

Larry got special treatment in the hospital and at home Williams said. “Like a typical teenage boy, he pushed it,” she said. He refused to get out of bed in the morning to get weighed, saying, “You can weigh me later.” He hated the hospital food and wouldn’t eat it, and so Marsha brought food in for him. “We would do anything for him, and he knew it, and he milked it a little,” she said.

He loved to go to the smoking lounge and hear normal conversation, Williams said. “I don’t even know if he was smoking … he was going to die anyway. He wanted to hear people talking about normal life-Randy Moss being traded, the pope dying.”

When things worsened, the doctor told him, “‘Larry, I don’t want to put a port in your head,'” Williams recalled.

“Larry said, ‘Then we’re done. We’re not going to go any further.’ He trusted his doctor. The doctor said, ‘It’s time to move you into hospice care, for you to go home.’

Larry Williams died at home two days after moving to hospice care. He was 19 years old.


Read About It
There is no shortage of books about the loss of a child. Among the most highly recommended:

Beyond Tears: Living After Losing a Child by Ellen Mitchell, Carol Barkin, Audrey Cohen, and Lorenza Colletti. Nine mothers share their experiences of losing a child that was in their teens or 20s.

What Forever Means After the Death of a Child: Transcending the Trauma, Living with the Loss by Kay Talbot, who offers advice from the experience of a professional and from her own personal loss.

The Worst Loss: How Families Heal from the Death of a Child by Barbara D. Rosof, a psychotherapist who works with bereaved parents, and offers ways to cope in this book.

Waiting with Gabriel by Amy Kuebelbeck. A Minnesota woman’s story of her baby’s brief life.

The Grieving Garden: Living with the Death of a Child by Suzanne Redfern and Susan K. Gilbert. This book shares advice on hope to cope, through the voices of those who have lost a child.

Support is available
The support of others is essential to healing. Many bereaved parents believe that talking to other bereaved parents, whether online or at in-person support groups, is helpful. The following are some support resources.

A Place to Remember
Local website offers support and resources for those who have experienced a miscarriage or loss of a baby. FFI: www.aplacetoremember.org.

MISS Foundation
Access to resources and support groups as well as an online forum that serves as an online support group. FFI: 1-888-455-6477 or www.missfoundation.org.

Now I Lay Me Down to Sleep
This organization provides more than 5,000 volunteer photographers who sensitively photograph a baby that has died. Creating portraits that will allow the family to honor and cherish their child can be important and serve as an heirloom for the future. Oftentimes local hospitals will suggest this to families. FFI: 877-834-5667 or www.nowilaymedowntosleep.org.

Compassionate Friends
This organization now has more than 600 chapters in the U.S. It provides support for families who have lost a child, through support groups, outreach and education. FFI: 877-969-0010 or www.compassionatefriends.org.

Pregnancy and Infant Loss Center
Offers a peer-support program and support group information. FFI: 612-473-9372, 612-473-8978, 1421 E. Wayzata Blvd., Suite 30, Wayzata, MN 55391.

Share, Pregnancy & Loss Support, Inc.
Offers a free information packet to bereaved families and support groups; referrals. FFI: 1-800-821-6819 or www.nationalchareoffice.com.


Holiday “gifts” for bereaved families

Holidays can be especially difficult for a family who has lost a child. Here are some ways you can help.

1. Remember the child in cards or in speaking with the family. Mention the child by name. Worse than the pain of remembering is the pain of thinking their child has been forgotten.

2. Understand this holiday may not be like the last and things may not get done.

3. Help the family do routine chores around the house or offer to help with shopping.

4. Make a donation in the name of the child to a charity that has meaning for the family.

5. Help the family find a support group with others who has experienced loss.

6. Consider the surviving children. Offer to take them shopping or to holiday related events.

7. Offer to drive the family to a memorial service.

8. Tell them they are not alone and that you love and care for the family.

Courtesy of Compassionate Friends


Ten tips to survive a holiday after the death of a child

Running away or hiding from your grief during the holidays doesn’t work. Below are some simple ways to make coping a little easier.

1. Plan ahead, prioritize events, activities and people, and realize you can’t do everything.

2. Ask for help with tasks, even easy ones around the house.

3. You don’t have to prove you have holiday spirit. Do as much as you want to do, as simple candle in the window in memory of your child.

4. It’s OK not to host holiday events even if you always have. People will understand.

5. Make new traditions to honor your child, in a way that has meaning to you.

6. Remember your surviving children. A holiday can provide normalcy in the midst of mourning.

7. It’s OK if you don’t get everything you planned done.

8. Shop at off-peak times, over the Internet or ask a friend to help.

9. Participate in a memorial service, like the World Wide Candle Lighting.

10. Remember, the anticipation of the day is usually worse than day itself.

Excerpts courtesy of Compassionate Friends