As Father’s Day approaches, we’re reminded of all the things a dad should be…

The protector, the provider, the fixer, the giver-of-knowledge.

Lance Ellis willingly embraced all of these roles. He couldn’t wait to teach his kids, help them solve problems, and bring them along on adventures.

He had plans. Plans to be a teacher. Plans to marry his sweetheart, Jill Johnson — to make a home and have two children, maybe even a dog.

But life had different plans for Lance, and he wasn’t able to do those things exactly the way he wanted to. Only when he surrendered his own plans — when he became willing to be shaped by his circumstances, did he arrive at the realization that plans and efforts are not guarantees, and the only thing a father can really provide for his children is unconditional love.

This is Lance’s story.

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Lance Ellis and Jill Johnson were married in 2002 Iron Mountain, Michigan. In 2005, their first child, Sylvee, was born. Lance loved being a dad to his sweet, redheaded artist. The two drew pictures together and enjoyed daily family walks.

Everything was going according to Lance’s plan.

It wasn’t until Lance and Jill decided to have another baby that Lance was faced with the realization that even the most carefully-laid plans don’t always work out. In 2007, Jill became pregnant, but experienced a miscarriage. As the two grieved the loss of their baby, they prayed for the blessing of another child for their family.

In 2008, Jill became pregnant again. The couple was excited to see on the screen at Jill’s ultrasound not one, but two babies. Though Lance and Jill chose not to find out the gender of their babies, they did learn that the twins were identical.

Lance knew that any pregnancy with multiples was considered high risk. Although he was a bit nervous about the idea of having two newborn babies, he never became overly concerned. Instead, he told himself that bad stuff is what happens to other people.

Two months before Jill’s due date, she went into labor. At 31 weeks gestation, there is a significant risk for babies being born with breathing difficulties and other complications, so the birth took place in Green Bay, Wisconsin, 100 miles from their Michigan home.

Henry Lee and Owen Leslie weighed three pounds, five ounces each.

“Owen came out first, red like a lobster,” Lance said. “Henry came out blue, and I saw one of the doctors spanking him to get him to breathe.  After that, a crowd formed around him and he was rushed off.  They let me cut Owen’s cord before he was rushed off as well.  Jill looked terrified — she was opened up on the table, but her only concern was the boys.  We hadn’t gotten to meet them yet when we got the call that Henry was intubated, and they couldn’t figure out what was going on with Owen but they were sending him immediately to Milwaukee.”

Owen was transported to a Wisconsin children’s hospital, where the doctors were equipped to handle his birth malformations, the most urgent one a tracheoesophageal fistula which complicated his breathing.

Lance rode in the ambulance to Milwaukee with Owen, while Jill and Henry remained in Green Bay for Jill’s recovery and Henry’ s care.

After eight weeks with babies in the neonatal intensive care unit, the Ellis family returned home to Michigan.

“Life was exciting because we were home with our whole family, yet scary because we were responsible for the medical needs of the boys.

“Owen’s trachea and esophagus hadn’t separated properly from each other, so his stomach contents could actually enter his lungs. When they did, he was intubated and treated for his first case of pneumonia.  His esophagus was reattached to his stomach, but would require numerous future surgeries. A feeding tube was implanted in his stomach , which is how Jill and I fed him for over a year until he could eat on his own.”

When Owen was two-and-a-half, a CT scan for management of his fistula revealed an unexpected spot on his liver.

“We were on track for having Owen’s esophagus fixed when the spot turned up,” Lance said. “I thought, ‘Oh, there’s something going on with the liver now. Well, we’ll fix that too.’”

But when the medical team in Milwaukee sent Owen’s case to Chicago, Lance and Jill became concerned that this problem may be more difficult to fix.

In February of 2011, after testing and monitoring of Owen’s liver function, he was diagnosed with hepatoblastoma, a rare and aggressive form of cancer that demanded immediate treatment.

Surgery was scheduled to remove as much of the tumor as possible from Owen’s liver, but when the surgeon opened him up, the size of the tumor made it difficult to even determine what was liver and what was tumor.

Owen began chemotherapy to shrink the tumor, and his doctor scheduled another procedure to help increase blood flow. When the surgeon attempted to carry out the procedure, he was shocked to find that Owen’s anatomy did not resemble the textbook system of organs, veins, and arteries. In an attempt to cut a vein, a bile duct was accidentally punctured.

Things went terribly wrong.

“That was the start of the decline,” Lance said. “The surgery was supposed to last maybe four hours, and it took all day long. Then we couldn’t get him to wake up after the anesthesia. When he finally came to, and we saw him, it looked like he had been sliced in half. He had staples all along his abdomen and around his back.  He never walked again after that.”

Even after the disastrous surgery, Lance and Jill held onto hope that Owen could be healed. They continued his chemotherapy and maintained a positive outlook as they considered all of their many options.

“There’s always​ ​ hope. We just said, ‘Wherever we gotta go, whatever we gotta do, let’s do it.’ That was our mentality for everything. Everything.”

The Ellis family spent weeks and months at a time in Milwaukee and Chicago. They squeezed in outings when they could, cherishing their time together as a family.

They stayed in Ronald McDonald houses as Owen endured chemotherapy, feeding tubes, countless IV’s, respirators, and every therapy imaginable.

Through treatments and procedures, Little Owen found joy in his yellow duck stuffed animal, and the little blue engine, Thomas the Train.

“All he wanted to do was watch Thomas,” Lance said. “He had to sit in the room with the darn CPAP machine thumping away, wearing that awful mask. We’d put his little headset on, and he’d watch Thomas. He’d sit there and point. He had a lot of throat surgeries, and I don’t think he was really interested in talking, but he’d point at the screen and look back and forth from me back to the show, like, ‘Huh!? You see that?’”

Six months after his diagnosis, Owen was at home in Iron Mountain, having a particularly difficult night. Lance and Jill called for an ambulance. By the time medics arrived, Owen had lost consciousness.

“They revived him in the ambulance, but it really only changed our goodbyes. It allowed our extended family to be there together when he passed.”

Surrounded by family, Owen died on August 6, 2011, just weeks after his third birthday.

“We look back and think about all the choices we had to make. Jill and I would have questions, and I’d stay up late doing the research, then come back to her the next day with the facts. People talk about what if we had brought him to this hospital, or that one. But you can’t do that. There are no what-ifs, and there’s no reverse. You gotta move forward and figure out how you’re going to cope.”

This is how they cope.

Sylvee, ten years old now, keeps quiet. She delves into her painting, into nature – the fairy gardens and hideouts she creates in the wooded land surrounding their home. When pressed to talk about emotions, she breaks out in hives. She may not be able to hug and kiss her brother before bed, but she has slept with his stuffed yellow duck every night for the last three and a half years.

Henry is more vocal in his coping. When the Ellis family walks into the hospital for an appointment, he asks, with hope in his eyes, “Are we going to get Owen?”

In the mornings, when his parents dress him, Henry refuses to wear certain clothes. “Those are Owen’s clothes.”

Sometimes, in his bedroom at night, he looks at his twin brother’s piggy bank on the shelf, at his empty bed, and asks, “Why did we leave Owen at the hospital?”

Jill finds balance between her work at a dental office, and her time at home with family. She and Sylvee ride their bikes on the dirt road beside the meadow, pulling Henry behind in the trailer. She manages Henry’s therapy schedule, cooks healthy meals for her family, and somehow still makes time to paint and play Legos at the end of the day before tucking her children into their beds with a kiss and a prayer…

God bless Mom and Dad. God bless Sylvee. God bless Henry. And God bless Owen.

“As for me,” Lance explains, “I’m a channeler. I take any regrets I’ve ever had, and channel them into something positive. It’s the most productive way I can cope. I wish I had more time with him. I wish I didn’t work that extra hour when I was working as an administrator. But I take those wishes and put them into the two kids I have here today.

“I know how fragile life is now, and I’ll never take my family for granted. You work hard, and then you get home. If you’ve got an hour before bedtime, don’t do the dishes or mow the lawn – spend it with your kids.

“Figure out what they’re into, and get into it. Learn about painting, or animals. Henry is into snakes these days, so we talk about snakes. Learn the names of the trains if that’s what they like. Why should it take a hospital stay to make you sit down and watch Thomas with your kid?

“I look back on the way I was in my twenties and just shake my head. You know, we think we can plan our lives, but we’re not in charge. You don’t think of the other side until you’re on the other side – until you’re sitting there with your own kid. You know how many CPR classes I sat through? And the first person I ever had to give CPR to was my own son.”

He takes a breath, looks across the dining room to a framed photograph of a smiling Owen.

“It was no life for anybody to have to live. The doctors were astounded that he lived to be three with what his anatomy looked like. You try everything you can, but at some point, you have to wonder if it’s for your own reasons that he be here, or if it’s really best for him. When he passed on, we had two dumpsters full of medical stuff. No kid should have that, or have to endure that. I think of those surgeries and the staples across his whole midsection. It was almost barbaric. And the chemo — the chemo was terrible. He didn’t even cry – he just screamed. He screamed so loud you knew​ ​ he was in horrible pain. And transfusions upon transfusions upon transfusions. When God decided to take him, I almost wanted to say, ‘Thank you.’ You can only hold them here for so long.”

But how does a father ever let go of his child? How does a parent shoulder the weight of love and memory at the start of each new day?

“The hardest thing is, you can’t predict when that sadness is going to hit. It could be a perfectly fine day and you’re driving to work, and your heart just sinks. Then you can’t get past the overwhelming feeling of missing him.

“It could be hearing the Thomas the Train theme song. We always had that on in the background at the hospital. You know, kids undergoing those kinds of treatments can still hear, no matter what machine they’re hooked up to. So Thomas was always on. And I remember turning that DVD off and leaving the hospital for the last time — without him.

“We’ve got this Thomas toy that plays the theme song in a lullaby melody. The other day, Henry was holding it and said, ‘When I die and go to heaven, I’m going to give this to Owen.’

“I think about heaven a lot,” Lance says. “It’s a great place full of some great people. I got Owen and my dad up there, and Jack Kriegl’s there. In our culture, you read something or see a show where something bad happens and they blame God. But that was never the case for me. I know Him, and I believe in Him and what He’s doing, so I can accept all of it – not just accept it, but be at peace with it.

“I’ve got no fear of dying – none. I could slip off this earth tomorrow, and I’d be good. Just as you and I sit here now, I’ll be with Owen again.”

“When I started staying in the hospital, I kept a journal. One of the questions they ask parents is ‘What would you like to see your child do in life?’ As an educator, I hear fathers talk all the time about how they want their son to play football, or go to this college or that one, or hold a high-paying job. And there I was, sitting with my journal in a children’s hospital, looking at the tired faces of families who come and go regularly through those doors, and my daughter is at the table coloring next to a little girl with a scarf on her head and an IV pole beside her. Tell me how important money and sports and that other nonsense was in that moment.

“I picked up my pen, and wrote, ‘I want Owen to make a difference.’ And he did make a difference. He brought people together.

“We met all sorts of families and people in those hospitals. He had a respiratory therapist that wrote a letter to us when he found out Owen had passed. He said, ‘The best part of my day was when I saw Owen on the schedule — when I got to come up and see your family.’

“Or how about all the people who came together for the benefit — for the Sick Air and Zero Gravity show the summer after he was diagnosed? Hundreds of people from the community rallied for Owen.

“And our church family – they’re just incredible. There’s none better. The love and prayers — I’d never experienced something like that before.”

Though his years on Earth were short, his influence was profound. Hundreds of people across the country came together, prayed together, and loved together because of a little boy named Owen Ellis.

“When I wrote those words in my journal,” Lance said, “I had no idea that he would make me a better dad, a husband, even a teacher.

“Owen was the biggest blessing. He made a huge difference.”

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When we think of the word, “father,” we naturally summon words like coach, teacher, protector, provider. And these are all good things — but there’s more to fatherhood than being smart and strong.

There’s a call to openness, to willingness for revision. A call to hold onto hope, even when you’re not sure what’s next. A call to offer big love without holding back.

When you think of fatherhood, I hope you think of these.

When you think of fathers, I hope you think of Lance Ellis.

Happy Father’s Day to one of the most stand-up guys I’ve ever had the privilege to know.

With love and blessings,

Stacy

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Stacy