Western Racine County group offers support for grieving parents

Nov. 27—BURLINGTON — Kristina and Mark Wilken could barely walk up the coffee shop steps.

It was their first time attending a support group for people dealing with the death of a child or grandchild. Their daughter Kaylinn was killed in a car crash at age 14 in August 2019.

"It was hard on so many levels to make that first step," Mark said.

The couple didn't expect much from the meeting. Nearly three years later, though, the husband and wife are co-leaders of the Healing Hearts support group. Healing Hearts is the local chapter of The Compassionate Friends, a national nonprofit.

Sally Schaeffer started the support group about five years ago. She and her husband Tom fought alongside other Wisconsin families to pass Lydia's Law, a state bill named after their daughter Lydia who died in May 2014 at age 7 from sudden, unexpected death in epilepsy. The bill legalized CBD as a medical treatment option in Wisconsin for people with epilepsy and other conditions.

Schaeffer, a group co-leader, wanted to help others process their grief and find community after a tragedy.

"You never move on from losing a child, but you can move forward," Schaeffer said. "I want people to know that they are going to be OK, that they can be OK."

Healing Hearts meets the first Wednesday of every month from 6:30 to 8 p.m. at The Loop Commons in Burlington, 488 Milwaukee Ave. Everything said in the meetings is confidential.

It is often a small gathering of three to 10 people, but anyone is welcome.

"Our door is always open," Schaeffer said.

'You know the pain'

When Mark entered a Healing Hearts meeting for the first time, he realized he didn't need to pretend to be happy.

"With friends, you can lie to them and tell them, 'I'm OK,'" Mark said. "Then you walk into a room of people that have all walked in your shoes, and you can't lie anymore, you can't fake it."

The Wilkens became more involved with the support group because they wanted to help people facing similar experiences.

"When you hear about people losing a child, it strikes you differently than it did before, and you just have this ache that you understand what they're going through and just want to reach out and be there to support those people," Kristina said. "You know where they're coming from."

The leaders are there to remind attendees they are not alone in their grief.

"You know the loneliness of losing someone, and you know the ache and you know the pain," Schaeffer said. "Although you can't fix it by words or actions, just being there to help them know that you understand, sometimes, is the best gift you can give."

The group leaders did not know one another before the meetings, but the Wilkens were aware of Schaeffer's work to pass Lydia's Law, which Mark called "the most impressive thing I knew about from a parent losing a child."

Schaeffer and the couple are now close friends. Schaeffer appreciates that Mark and Kristina can provide a couple's perspective to group members.

"It just gives a really well-rounded approach to anyone that comes," Schaeffer said.

'They're not alone'

The meetings are in Burlington because the group mainly serves residents of Racine, Walworth and Kenosha counties, but people have also traveled from Waukesha County and northern Illinois.

At monthly meetings, new attendees are invited to talk about their personal journey, but do not have to.

"They can share as much as they want, as little as they want or not at all," Schaeffer said. "They can come and just be in a room to know that they're not alone."

The leaders make a point to say the dead child's name and talk about the child if the adult wants to.

Meetings often include casual conversation and may involve practical advice such as how to respond when someone asks, "How many kids do you have?" or what to do with a deceased child's furniture and clothes. Other topics include how to process their feelings during holidays or notable dates like the child's birthday.

The group leaders emphasize that they are not mental health professionals, but they often understand what a parent is going through.

"Mental health counselors are so important, but very few have the niche of grief or have experienced ... this exact loss," Schaeffer said.

More information

Those interested in learning more about Healing Hearts can email healinghearts@mail.com.

Finding joy

Topics are serious, but conversations don't have to be. In an interview with The Journal Times, Schaeffer and the Wilkens often laughed and joked with one another.

"We try to bring light to other peoples' lives," Schaeffer said. "It's not just gloom ... In order to move forward, you do have to find joy. We want to help people do that."

At an early meeting, Mark and Kristina met another couple, which was important because it showed that people can stay married after the loss of a child. The Wilkens said the support group strengthened their marriage and helped them understand each other's different ways of grieving.

Someone asked Mark at a meeting if he found happiness after Kaylinn's death. He said yes and elaborated.

"The real question is, Do you learn to have fun again?" Mark said. "Are you ever going to go out to dinner again and actually enjoy it? ... The answer is absolutely yes."

The three leaders said the group has helped them move forward, but they still often think about their children.

"I think about it every single day, multiple times a day, but it's certainly not all-consuming," Mark said. "I can focus on other things now."

The Wilkens felt tremendous guilt after Kaylinn died. Kristina said that has not gone away, but there is much less guilt now.

"The waves get less often, less strong," Kristina said. "They'll still come up, and we have no idea when, but they are farther apart."

Group evolution

The leaders believe the group has evolved to better support people as they have gained more experience. Meetings have made them more empathetic. They find meaning in serving others, which in turn helps the leaders process their grief.

"There are times where we all walk in and think, 'Well, we don't really need this meeting individually, we're here to help other people,' and you walk out knowing that it's helped you, too," Schaeffer said. "You walk out feeling more uplifted, more understood, with a different perspective on things from the help of people sitting there in that group with you."

Mark looks forward to the meetings and is often buoyed by a positive interaction.

"When I drive home and have somebody hug me and say, 'Thank you,' that gets me through another month," he said.

One of the group's goals is to normalize feelings that are part of the grieving process.

"Grief is an awkward topic for anyone that's not sitting in it," Schaeffer said. "There are people here that can laugh, that can cry, that can support and discuss it, because it is a part of life. Unfortunately, losing a child shouldn't be a part of life, and that's where we want to step in. Talking about grief is OK."

For people who have not lost a child, offering a cliche to someone who has, such as "They are in a better place," is rarely helpful.

"The words really should be, 'I'm sorry, and I'm here to listen,'" Schaeffer said.

Walking together

Schaeffer didn't know what would result from the group when she started it five years ago, but she wanted to share the lessons Lydia taught her.

"I never thought it my wildest dreams that I would hear people say that this saved their marriage, that it saved them in numerous ways," Schaeffer said. "My daughter was my greatest teacher in life. I am the woman I am because of having had her. She was non-verbal, but she taught me more about life in her seven short years than I will ever learn in my lifetime. I'm so thankful and blessed that I had her to become the woman, the mom, the wife, the sister, the friend that I am. I just wanted to give back what she gave me and help people."

The group is not religiously affiliated, but every meeting closes with a reading of The Compassionate Friends credo, which includes the line, "We need not walk alone."

Mark and Kristina may have felt alone walking up the coffee shop steps a few years ago, but they soon realized they weren't. They and Schaeffer hope the same will be true for more group members.

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