Being real about grief part of talk in son’s honor

By Correne Martin

“As parents, we always say we’d do anything for our children. 

“Instead of dying for my child, I’m bearing this grief he never had to experience.”

This is just one of the poignant realizations Kelli Boylen has come to since losing her son, Samson, on Nov. 29, 2015. Sam died due to a rare side effect to chemotherapy 12 days after he was diagnosed with leukemia. He was 14 years old. 

Admittedly comfortable with her tears, Kelli describes her grief as mostly overwhelming sadness. Yet, she’s chosen to honor Samson by sharing his story and the Boylen family’s personal insights into the heartache for which no one can ever truly prepare.

At the upcoming Turkey, Tinsel and Tears program, on Nov. 7, at Gundersen Health Clinic-Prairie du Chien, Kelli will recount the unimaginable moments of Samson’s sudden illness and death as well as the days—and now years—they’ve endured without him. Her presentation is titled, “I never imagined grief like this.”

“Even if people are grieving the loss of the same person, they are not going to grieve the same way. There’s no right or wrong way,” Kelli said. “Thinking there’s a time limit on grief is like thinking there’s a time limit on love. There isn’t one. It’s also important to remember: Grief is not a competition. No one’s grief is any less sad than someone else’s.”

These points are just a few of those Kelli will relay during Turkey, Tinsel and Tears. 

She and Pam Strakeljahn, Grant County Health hospice spiritual counselor, will both speak Nov. 7. The evening will begin at 5:30 with refreshments and displays. At 6 p.m., an opening prayer will be said and candles lit. Pastor Strakeljahn, who has spent 20 years helping families cope with grief and depression, will share her message first, followed by Kelli. Afterward, there will be time for open-floor sharing or questions. A closing prayer will end the night. 

The theme for the 15th annual event is “Breaking Through: Seasonal and Grief Depression.” All are welcome to attend this free program, sponsored by the Gundersen Clinic bereavement team, at a time when feelings associated with loss or other life challenges may be more prevalent as the holidays approach. 

At last year’s Turkey, Tinsel and Tears, Patti and Terry Cullen, of Platteville, talked about the loss of their son, Ben, to suicide. 

“Although I’d experienced the loss of a child myself, I’d not considered how suicide adds a layer of stigma and pain to the loss,” Kelli said.

She attended the 2017 program, and realized, no matter how awkward she felt, it was important to reach out to other parents who had lost children no matter what caused the death. 

“As a society, we suck at grief. We have unrealistic expectations for others as well as ourselves. We don’t even have adequate words,” Kelli reasoned. “We have this belief that ‘sad’ and ‘angry’ are negative emotions. You can do negative things with them, and there are days when I’m sad, and there’s nothing wrong with that.”

She continued, “We have this strange thing where ‘strong’ is a good thing. Why am I strong? Because I’m not lying on the floor crying? I’ve done that too. We think, if we cry, we’re supposed to apologize. But, why?”

Kelli firmly believes people need to have more discussions, sometimes one on one, about grieving, because “that removes the isolation of grief.”

The Boylens have particularly noticed how people will sometimes avoid those who’ve faced a recent death, simply because they are unsure of what to say to them. Kelli proposes, instead, people open up about the subject and their feelings, such as fear, bitterness, guilt, loneliness, depression, etc. She encourages friends and acquaintances to engage in conversation with those who’ve lost someone, even if it’s purely to express sympathy and to listen.

“I had one friend who sent me one message a week,” she recalled. “She’d say, ‘There’s no need to respond. I just want you to know I’m thinking of you.’ By taking off the pressure of needing to respond, just letting me know she cared.”

Kelli also pointed out that children should be included in this uncommon dialogue—age appropriately, of course—as grief and sympathy are important for developing their intelligence and sensibility.

“I’m sure Samson had friends that [his death] was their first experience with grief,” she said. “A lot of teenagers struggle with depression and anxiety, and [those feelings] are very hard.”

Acknowledging that grief is going to touch “all of us sooner or later,” Kelli’s presentation will tell the stories of who Samson was and what she, her husband Scott, and daughter Ayla (who was 17 when he died) went through as a way to help others get a better sense of what incredible loss might feel like.

In October 2015, Sam fell ill with pneumonia. He was run down for awhile, but then seemed to improve. Kelli said she almost didn’t take him back to the doctor for follow up. However, after four weeks, he had an x-ray, which showed a mass between his lungs. Several days later, after further testing, it was determined he had leukemia. He was diagnosed on Nov. 17, and immediately admitted to the hospital.

“It was caught really early. We knew it had more than 95 percent successful treatment rate,” Kelli stated. “I thought it’d be six to nine really hard months and he’d start getting better.”

So, on Nov. 24, the discharge papers were signed for Sam to leave the hospital. He had undergone three IV chemo treatments in La Crosse within five days and was doing well. Or, so they thought.

Sam suddenly started seeming extremely confused, and his condition became worse by the end of the day. That night doctors sedated him and put him on a ventilator. They didn’t know it at the time, but his blood ammonia levels, which are toxic to the brain, were quickly elevating. 

“We found out six months after he died, after I had genetic testing, that he had a genetic urea cycle disorder. With this, your ammonia levels can go high during times of metabolic stress,” Kelli explained. 

The afternoon of Nov. 25 the medical staff figured out his ammonia levels were high and started treatment to try to get that under control. That night Samson suffered a stroke.The Boylens knew things were bad, but not how bad. On Thanksgiving day, he was transferred to Madison, thinking, if they could get the ammonia out of his blood, the swelling in his brain would go down, and his young life could be saved. 

In spite of the medical efforts made, on Nov. 27, doctors notified the family that everything they knew as Sam was gone. On Nov. 28, the Boylens called in family and closest friends to say goodbye. On Nov. 29, the ventilator that was keeping him alive was turned off. 

“Thanksgiving will never be the same. I have no desire to mark a traditional Thanksgiving anytime soon,” Kelli said, honestly. “When your child dies, you feel as though you’re living in the twilight zone. It feels like it’s this alternate reality, and on the other side of the door is your real life.”

The qualities Kelli said she’s grasped from losing her son are abundant. 

She’s learned that everyone grieves differently; it’s an individual process. She believes her son is “everywhere and part of everything.” Like other parents, the Boylens are fond of talking about and paying tribute to their son. They enjoy spending time with his close friends. Kelli became a hospice volunteer and now completely understands “what an honor it is to be part of the end of someone’s life.”  

She has few irrational fears anymore. “I’ve already seen the bottom, so I have nothing to fear,” she said.

Now, nearly three years after her son’s passing, she’s come to terms with her inclinations.

Aside from Kelli’s speaking opportunity on Nov. 7, and other public sharing of stories and pictures, also in Samson’s memory, Kelli, Scott and Ayla have put up three Little Free Libraries, two park benches, planted trees, donated books to local libraries and established a memorial scholarship fund.

Kelli has also found it therapeutic to give back to the community with her time. She has organized creativity classes, which raise money for a varieties of causes, including creating domestic abuse kits for Catholic Charities, giving feminine hygiene products to schools, paying off school lunch accounts and gathering yarn for women who make prayer shawls. She promotes the classes on Facebook. 

Each day, they step forward in grief and act from the heart. Whether they feel disoriented or enlivened, they know the way they’re grieving is OK. That’s the nature of the message Kelli wishes to convey at Turkey, Tinsel and Tears.