Seattle Children's Journey Program helps parents and siblings invest in a changed life after the death of a child.
The Journey Program gave Mark and Julie Liebendorfer the skills to help their son Ryan grieve his older brother, Garrett, in a healthy way.
Six years after Mark Liebendorfer’s 13-year-old son, Garrett, died during routine spinal fusion surgery for scoliosis, a deep sadness is still audible in his voice.
Garrett’s sudden death was a horrible shock for Liebendorfer, his wife Julie and their younger son Ryan, but they were equally unprepared for the way the hospital that performed the surgery handled the teen’s untimely passing.
“That other hospital gave us a couple of books and a memory box with our son’s handprint in clay and that was it,” remembers Liebendorfer. “It was Seattle Children’s that helped us work through our grief.”
Reaching out to grieving parents
Mark and Ryan Liebendorfer
For nearly 25 years, Children’s Journey Program has quietly helped thousands of families like the Liebendorfers cope with the unbearable feelings of loss that follow the death of a child. The program is one of only a few in the nation with a mental health – rather than spiritual – focus.
“The work we do is free and available to any family in the region for as long as they need support,” says Jackie Kite, a stress and trauma expert who has managed the program for 18 years. “We reach out to every family at Children’s whose child dies, and we also contact families who are referred by others in the community.”
More than 200 families each year take advantage of a variety of services provided by the Journey Program. Kite and her staff of two run grief support groups, provide individual counseling, advocate for siblings and other family members at school and work, and locate grief support resources for out-of-town families in their own communities. When a particularly traumatic death occurs at Children’s – typically from an accident or abuse – Kite leads crisis interventions for the clinicians who cared for the child.
Liebendorfer sees Kite as a sage.
“Jackie taught us that grief is a natural, normal reaction that can only be healed with patience and time,” he explains. “There just aren’t any shortcuts through the grieving process.”
Liebendorfer’s own experience with grief taught him that it takes a special heart to listen to the stories of those who are grieving.
“Jackie welcomes each person’s story as fresh, unique and special. Her wisdom and training help me stay focused so I can identify my own grief and grow.”
A journey toward healing
Journey Program manager Jackie Kite (right) and volunteer Judy Waleryszak are part of a team that facilitates grief support groups every other week. Some groups meet for a year; others, as long as three years.
It’s been 17 years since Judy Waleryszak’s only child, Joshua, died at the age of 12 from an extremely rare reaction to a booster vaccine.
“After Joshua died, I was in a fog for months, and then I sank into depression. There are parts of my life that I can’t even remember.”
Around that time, Waleryszak saw a cartoon that illustrated her grief. The first frame showed the front of a perfectly coiffed woman. The second frame pictured the back of the woman with lots of wires and springs popping out.
“I kept wondering why none of my family and friends could see that I was falling apart.”
That’s common, says Kite.
Family and friends often give parents an unspoken “grieving grace period” after the death of a child. When that time frame is up, they face subtle pressure to move on with their lives.
“It’s hard for family and friends to handle parents’ long-term sadness,” explains Kite. “Sometimes a bereaved couple’s support network is so afraid of doing or saying the wrong thing, they do nothing at all. At social events, they avoid talking about the child because they don’t want to remind the parents. The thing is, you can never remind parents that their child is dead, because they never forget.”
When Waleryszak went to Kite for grief counseling, she says she was finally able to talk about Joshua and remember him in a way that she couldn’t with family and friends – a first step in imagining her life without her son.
“I still think of Joshua every day. Sometimes every hour,” she says. “Do you ever get over the death of a child? No. You get different.”
Living this “new normal” moved Waleryszak to train with Kite to become a volunteer support-group facilitator.
“As a parent who’d been through so much, I felt I had something to offer,” she says. “Through my work with Jackie I learned by example how to create a safe space for other parents to have their own experience of grief.”
Support for moms … and dads
Kevin Clarke likens the Journey Program to an air-traffic-control center. "They help families take off and land – especially in the first year after a child's death when every holiday and family gathering triggers so much sadness."
Every other Wednesday evening several grief support groups meet in conference rooms at Children’s.
“It’s a club no one wants to belong to, but once inducted, you bond with those who’ve experienced the same trauma,” says Kevin Clarke, father of Jeffrey, who died of kidney failure in 1995 at age 10 after a bacterial infection attacked his fragile immune system.
After his son’s death, Clarke joined a grief support group because his wife Cheryl wanted to.
“At first, I wasn’t comfortable showing or communicating my feelings,” says Clarke. “One of our group leaders was male, and I learned so much from him about the healing power of sharing that I decided to be a group facilitator, too.”
Children’s Journey Program differs from others around the country in that as many dads as moms are part of the support groups. “Honestly, I’m not sure why,” says Kite candidly. “It may be because some of our volunteer facilitators are male.”
“I can love and live each day to the fullest because of your guidance and compassion. I can embrace this life, even without Elijah here.”
A safe space to grieve
Tami and Bruce Echigoshima's 5-year-old daughter Lauren knows where her twin brothers' names are engraved on the hospital's memorial wall – a place where families and staff come to remember those in the Seattle Children's community who have died.
Bruce and Tami Echigoshima grieved in different ways after they lost their twin sons nine years ago when Kyle was stillborn and Chad died 12 days later. Echigoshima says he internalized his pain while Tami wanted to talk about hers. Having other men in the group helped him to open up rather than keep his feelings buried.
“There were feelings I’d share with the group that hadn’t come up in conversation with Tami,” recounts Echigoshima. “We grew as a couple through the process and are in a much healthier place after working through our all-consuming grief. We’re still sad about losing our sons, and we miss them every day, but the safe space created by the group allowed us to bring those emotions to the surface and find peace and happiness again.”
A commitment to care
“There is nothing a parent fears more than losing a child,” says Jim Rogers.
That nightmare came true for Rogers and his wife, Trish, when their son, Jimmy, sustained a fatal head injury at age 4 while playing on a teeter-totter at a park during a family reunion in 1989.
Rogers says he doesn’t know how he and Trish would have coped without the support they received from the Journey Program.
“Journey helped me see that my grief was completely normal and gave me the psychological comfort of knowing that I would eventually get through it,” remembers Rogers. “I got the tools I needed to make an important choice after I came to that terrible Y in the road of my life, which was Jimmy’s death.”
That choice was to help others rather than drown in a life of bitterness.
The James G. Rogers Jr. Endowment for the Journey Program funds the salary of Alice Ryan, a clinical social worker who provides individual counseling and telephone outreach to bereaved families for eight hours each week.
“There’s a culture of caring for the entire family at Children’s – even after a child dies,” explains Rogers. “The endowment is our way of making sure the hospital has the resources it needs to carry on this mission that truly helps grieving parents reconnect to life.”
From despair to re-engagement
For Kite, managing the Journey Program is a labor of love.
“I see families in the worst of times, but I also get to see the resilience of the human spirit,” says Kite, whose greatest joy is working with families long enough to see them come from a dark place, where they can’t imagine ever caring about anything, to a place where their other children or their work or their hobbies matter again.
“With the right support, a parent’s love of a deceased child will outlive their grief.”