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Cindy Lange-Kubick: In their darkest hour they looked at each other and made a choice

Cindy Lange-Kubick: In their darkest hour they looked at each other and made a choice

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Cindy Lange-Kubick has loved writing columns about life in her hometown since 1994. She had hoped to become a people person by now, nonetheless she would love to hear your tales of fascinating neighbors and interesting places.

It was a Sunday and Matthew loved to swim.

Milt and Janet’s little boy had a big name in honor of both his grandpas: Matthew Charles Wilbur Bemis.

The 2½-year-old had a big personality, a ball of fire, always going.

He had two big sisters, Crystal and Tiffany, his second mama and his best friend.

That August day in 1984, the family had driven from Rising City — where Milt and Janet had met in elementary school — to a new development near Omaha called Hawaiian Village.

They met three other families at the lake ringed by houses, and all morning the kids splashed in the water. Matthew, too, with his floaties.

Then everyone gathered on the deck to take a break for lunch. A few kids went looking for fishing poles.

And someone said: Where’s Matthew?

No one knew. Word of the missing boy quickly spread around the lake. Milt and Janet yelled his name and Milt got in the car to see if he’d wandered away. Parents fanned in every direction. A mom herded the other kids into the house.

Two strangers swimming at the lake dove off the dock and on the third dive, one of them pulled a small body out of the murky water.

A doctor paddled over in a canoe to assist. A nurse showed up and medics appeared, and they started CPR.

“We gathered around him and prayed,” Matthew’s dad said this week. “I can still remember hearing that siren coming from two miles away.”

A faint wail, getting closer.

The ambulance took Matthew to Midlands Hospital and from there to Children’s. The search had taken 15 minutes, maybe more. Doctors knew the boy had been without oxygen for too long and each day, for three days, they wheeled him away for tests to check his brain activity.

There was none.

And so his parents held him, connected to tubes, a respirator breathing for him, the medication keeping him alive, but losing the power to sustain his small body.

On Tuesday, as his mother rocked their boy, she looked at Milt.

Do you think we should, she began.

And Matthew’s dad answered: Donate?

* * *

Lily Allen is 36.

She lives in Central Square, a small town near Syracuse, New York, with her husband, Brian, and their five dogs, a cockatoo, a dove, two parakeets and a cat named Kevin, all of them rescues and rejects.

She works at an animal clinic, both receptionist and human resources manager. She loves her life.

“I’m exceptionally lucky,” she says. “I’m so thankful for the life I have.”

She and Brian got married 11 years ago.

Lily calls that date — Aug. 8 — her bonus birthday. The day she got her new liver from a little boy in Nebraska.

She was 14 months old. Tumors were growing in the blood vessels lining her liver. Her skin had turned dark yellow and her belly swelled, tight and round as a balloon ready to burst.

When her parents heard about a new liver transplant program in Los Angeles, they left their home in Tucson, Arizona, and showed up at the UCLA Medical Center unannounced.

The toddler was days away from dying when the phone call from Nebraska Organ Recovery came. It had a liver for Lily.

She knows that story from the memories of others; as an adult, she marvels at the decision made by grieving strangers.

“This was at the beginning of organ transplant,” Lily says. “To be in your darkest moment and to ask the medical staff about helping someone else, it’s incredible.”

But it’s who they are, she said.

“They’re amazing people.”

She calls Milt and Janet her second parents. They met and approved of Brian when the couple got engaged. They stood in the receiving line at her wedding, opening their arms to hug after hug.

Milt and Janet first met Lily a year after the transplant, the tiny baby with the basketball belly now chubby and curly-haired.

Doctors had given her slim odds of living more than a few years after the transplant and then, when she did, slim odds of making it to her fifth birthday.

They would meet again when those five years were up, guests of Nebraska Organ Recovery in Omaha, Lily’s parents speaking to a crowd of doctors and nurses.

They’ve stayed connected.

They were together in Pasadena, California, to help decorate a float in the 2008 Rose Bowl Parade. Lily on the float with dozens of organ transplant recipients, waving and smiling her big smile, holding Matthew’s photo.

Milt and Janet waving back from the crowd.

A year later, they were together in Richmond, Virginia, the headquarters of UNOS — the United Network of Organ Sharing — when Milt and Janet received the group's first National Donor Memorial Award for their efforts to promote organ donation.

And they were back together in Richmond again in June, when the organization marked its 35th anniversary.

“Lily is the poster child,” Milt says. “The longest-living infant liver transplant recipient in the world … and she’s just doing great.”

Lily’s husband, Brian, donated a piece of his own liver to a stranger two years ago in honor of his wife and Matthew.

Milt and Janet call it the ripple effect.

* * *

They had three days to prepare to let Matthew go.

At night, they’d go to the Ronald McDonald House across from the hospital and try to sleep. Mostly they cried.

But they had faith in their decision.

“All I know is I wanted to make sure another mother wasn’t going through what I was going through,” Janet says.

And when the time came, there was a rush. A mix-up meant they didn’t get word that members of the transplant team from UCLA had landed until they were in the lobby.

They cradled their son and kissed him. They said goodbye. Milt whispered in his ear: Somebody needs you. You can help somebody.

There is a catch in Milt’s voice when he tells the story, the story he and Janet have shared hundreds of times in the past 35 years.

* * *

The story of the boy in the lake led the evening news that August.

The couple eventually moved to David City and three years after they lost Matthew, they welcomed their fourth child — Jared Matthew — into the family.

Now they have eight grandchildren and one great-granddaughter.

They run a fundraising business that helps students raise money for proms and projects and playgrounds.

They spread the gospel of organ donation. They started educating others a year after Matthew died, when they were invited to speak at the Nebraska Organ Recovery symposium to a room packed with doctors and nurses.

“They have been such great advocates for our organization and our mission,” said Kyle Herber, who heads Live on Nebraska, formerly Nebraska Organ Recovery. “They visit schools, civic organizations, you name it. If they have an opportunity they share.”

Milt and Janet show a video: Matthew & Lily, the Gift of Life. There are clippings from the news. A feature story by Joan Lunden. Video of preparations for that Rose Bowl parade.

There are snapshots of Matthew in a fuzzy, yellow sleeper, Matthew wearing sunglasses, Matthew in his wading pool, holding a red-plastic bat, hunting for Easter eggs, sitting beside his dad on a riding mower.

And there is Lily, swollen and sick, smiling with a mop of curly hair, posing with her baby sister, getting ready for prom, decorating a float, getting married.

They explain the importance of organ donation, they explain how easy it is. How it can change someone’s world.

“This is a happy story,” Milt always says. “It starts out sad.”

* * *

On that long-ago Sunday, they were young, just starting out.

Milt is 68 now; Janet 67.

But everything about that Sunday and the days that followed is so clear, just like yesterday.

The drive home. Circling the house and driving away, finally coming back and walking in.

“It was so quiet,” Milt says.

Their son’s obituary ran in the David City Banner Press.

“Matthew’s enthusiasm for life was only matched by the joy he was to his family,” it read. “He was a source of love and hope to his grandparents … and his great-grandparents”

They held Matthew’s funeral that Saturday at First Lutheran Church and on Sunday, Milt and Janet and the girls were back in the pews.

Their small town and their faith helped sustain them.

And so does the work they do.

“This was part of our healing,” Milt says. “Going through our grief, it was a way to give back.”

Reach the writer at 402-473-7218 or

On Twitter @TheRealCLK.


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Cindy Lange-Kubick has loved writing columns about life in her hometown since 1994. She had hoped to become a people person by now, nonetheless she would love to hear your tales of fascinating neighbors and interesting places.

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