On the last night of his earthly life, Silas Haifley's parents brought his baby brother to the hospital to meet him.
They brought his older brother, too.
They posed for their first and last family photo in the room where the toddler with sick lungs had spent the last 65 days struggling to breathe. At Children’s Hospital in Omaha, where his big sister, Isabel, had done the same.
The chaplain came. He helped 9-year-old Roman make molds of his brother’s hands and feet.
Roman and his dad cut locks of Silas’ fine blond curls.
Roman held him and petted him until the brothers fell asleep in the reclining chair.
His dad held Silas then and read stories to him.
His favorite book, over and over.
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I'd know you anywhere, my love. There are things about you quite like no other. Things always known by your father and mother...
The little boy’s breathing slowed.
His mother and father and brother told Silas how much they loved him. They covered him in kisses.
They were letting him go, his mother says.
But he’ll be with them forever.
* * *Â
Kendra and Damon Haifley are at home in a house with pale yellow walls and dark wood floors and children’s artwork on the walls, the house that welcomed their babies home.
Stone Charles Daniel is wearing a blue sleeper, resting in the crook of his mother’s arm as she makes coffee.
He was their biggest baby, she says. Their only baby who arrived early.
His parents know why. “Because he needed to meet his brother.â€
Kendra went into labor on the morning of May 16 and Stone was born at 9:18 that Tuesday night.
On his second-ever Thursday, baby Stone stretches and softly hiccups.
New to the world, he opens his eyes and shuts them again, as if pondering this place.
His parents move from the kitchen to the living room, passing him back and forth, kissing his face as they tell their story.
How they met at Doc’s, a bar in the Haymarket, when Kendra was working as a cocktail waitress, one of three jobs she juggled to put herself through college.
Damon was a friend of a friend and one night he came in and they had a glass of wine and sat and talked. And before he got up to leave, she asked if he wanted her number.
He pulled out the notebook and pen he always carried in his pocket.
A notebook?
“He was just different,†Kendra says. “I liked that.â€
But still, she picked up his phone and punched in her number.
And Damon liked that. “It made total sense.â€
And they made total sense.
It turned out they liked each other and pretty soon they loved each other. They loved being parents, too.
Roman Robert Lee Haifley was born April 21, 2008.
An amazing boy, his parents say. Smart and curious and loving. Wise beyond his years.
Kendra is a stay-at-home mom and yoga instructor, who lives what she teaches: Be grateful. Find the good in everything. Love.
Damon travels the world as a seismic engineer, studying the geology of ocean floors, then writing reports for gas and oil company clients.
The downside of his job is being away from home for six weeks at a time, but there is a wonderful corollary. He is home for six weeks at a time.
“When I’m here, our kids have two stay-at-home parents.â€
When Roman was 4, Isabel Meagan Mae arrived. Isabel was tiny -- a full-term newborn just shy of 5 pounds -- and she remained petite.
A smiling baby who turned into a funny and feisty toddler who loved to dress up.
Once on an outing to Target, she clamored for gold gladiator sandals and hot pink sunglasses, and the little purse she had to have.
“She was a purse diva,†her dad says.
They have a photo of her, smiling in her get-up.
“You couldn’t get mad at her because she was so adorable,†Kendra says.
They figured she’d have 10 kids one day, she loved her baby dolls so much. When Damon held her she mimicked him, cuddling her doll the way he cuddled her. If he kissed her on the head, her doll got a kiss on the head, too.
When she got sick, she stuck EKG leads on her baby doll’s face and called them “ouchies.â€
Isabel was 18 months old when she got pneumonia for the first time. More bouts followed and doctors diagnosed her with neuroendocrine hyperplasia of infancy, a condition babies eventually outgrew.
Damon was working in Australia when Kendra called with the news. “I nearly bawled on the phone, I was so relieved.â€
This they could do.
They brought Isabel home from the hospital with an oxygen tank and 50 feet of tubing that they flung over the railing from her upstairs bedroom so she could roam the main floor.
But she tired easily. She napped twice a day and often they’d find her on the floor with her blankie an hour before bedtime.
The next three months were filled with hospital stays. Her parents learned a new vocabulary. Blood gases. Oxygen saturation. Viral panel. Oscillating ventilator. ECMO machine.
Isabel had every test imaginable and then some more. Everything came back normal.
But they learned Isabel wouldn’t outgrow her weakened lungs after all. Eventually, her doctors agreed she needed a lung transplant.
They had just arrived at Texas Children’s Hospital in Houston full of hope, when her heart stopped.
“Isabel is truly an angel who walked upon this earth teaching us what true love is,†her parents wrote in the 2-year-old’s obituary. “She is a warrior of light and love and all things beautiful and good in this world!â€
They asked mourners to honor her spirit. “The world truly is a better place because she was in it. Take a deep breath, be grateful, and love fully!â€
Two-and-a-half years later, a week after losing their second child, they are still grateful.
Their grief is vast. Unfathomable.
“People say we are strong,†Damon says. “We’re not.â€
But they know they don’t get to chose. They believe in God’s faithfulness.
They love deeply. They love hard.
“One thing I would never go back and do is not love Isabel and Silas as much as I did,†Kendra says, “because they knew how much they were loved from the moment they were born.
“All they knew was love.â€
* * *
When Silas was born, his parents gave him a piece of his sister to carry -- the last two syllables of her first name.
And Silas Thelonious Abel was Isabel’s mirror image -- small and fine-featured.
But her opposite in temperament.
“He was so observant,†Damon says. “He just wanted to see what the world was like.â€
He adored his mommy. No matter who was holding him, when Kendra came into the room he held out his arms.
“He’d give a look, like ‘These other people have been so terrible to me,’†she says.
A cuddle bear, his dad says.
They didn’t worry about baby Silas. Damon and Kendra met with Isabel’s doctors after her death.
We’d love to have more kids, they told them. Should we adopt?
“The answer was, if you have 100,000 more children, the odds are against them having this,†Damon says. “We were devastated losing Isabel, but we had the joy of knowing we could have more kids.â€
Silas turned 1 in October. A party with his family and a cake. He wasn’t walking yet, but he was healthy and he played with his favorite present -- a push toy.
Then in November, he contracted bronchiolitis and in December, pneumonia. Thinking of Isabel, Kendra and Damon took him to a specialist in Denver. If Silas had what his sister did, maybe they could catch it early, fix it before it got worse.
Doctors found his lungs inflamed from the respiratory virus RSV but nothing else.
Silas came home trailing an oxygen tank.
He got sicker and spent his last 65 days in the Pediatric Intensive Care Unit at Children’s, diagnosed with pulmonary hypertension.
His parents never left him.
They were approved by their insurance company for a lung transplant evaluation at Children’s Hospital of Philadelphia.
And several times, their sick son rallied, and they had hope he could come home.
They learned how to care for his trach and his feeding tube.
Then Silas began to fail.
Doctors increased his oxygen levels until his ventilator began pushing pure oxygen into his lungs.
They met with their care team. Silas wouldn’t get well.
“You do everything you can to save your child,†Kendra says. “And you come to this place of is this in his best interest? Or is this just prolonging his life because you don’t want to live without him?â€
Kendra went into labor sitting at her son’s bedside. She waited for her mom to arrive and went home to pack a bag. She had a video connection set up so she could watch Silas from her hospital bed in Lincoln.
Sixteen hours after her C-section, they returned to Silas with the gift of his baby brother.
At his bedside, the nurses began unhooking him from the machines that kept him alive.
Kendra shared the news the next day on Facebook.
“His time on Earth was short but it reminds us how precious life is and how blessed we are with every breath, how lucky we are to feel every high and low of life ... â€
* * *
On the Saturday after Silas died, members of Good Life Fitness walked to raise money for the Haifley family.
Friends set up a to help ease the burden of uncovered medical bills.
All the sign-up slots on the Haifley Family Meal Train are taken until August.
Friends show up to fold laundry.
When Silas was sick, Kendra’s best friend and her family cared for Roman. Her parents took care of their dogs. Friends and neighbors took care of their house and brought Roman to visit.
“I could live anywhere in the world for my job,†Damon says. “But I chose to live in Lincoln, Nebraska, because this community is so amazing.â€
After Isabel died, the Haifleys started the Warrior Princess Foundation in her memory, raising money to help other families. They hosted a blood drive.
They believe in more than themselves, says Olena Martin, a close friend. “As a family, they have this deep love for one another and it bleeds out to everyone they meet.â€
DNA from Kendra and Damon and their four children has been sent to Harvard and Yale, where scientists will study it, looking for a genetic link, clues to connect Isabel and Silas and to help Roman and Stone.
In the house that welcomed their babies, they planned a service at First-Plymouth Church. They asked guests to honor Silas by bringing books to donate to the families in the PICU at Children’s Hospital.
They wrote another obituary.
“To celebrate the life of love lived by Silas Thelonious Abel Haifley ... â€