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Without My Daughter, I’d Be a Partial Human

Read this reflective narrative about how having a special needs child changed this man's perspective on life.

Over the course of a summer, Patrick got to know his barber, Tyson. In the conversations they shared during haircuts, Tyson told Patrick how he’s been transformed by becoming a father, especially to a daughter with a disability. 

I stepped in out of the warm June air and took a seat on the leather couch against the window in my local barbershop. Tyson, a dark-haired barber with a red hat, finished cutting the hair of a squirmy blond 6-year-old, then cleaned up, removed the cape, and motioned me over. 

As he began cutting my hair, I asked him what brought him to Portland. 

“Yeah, it’s a crazy story, man. My wife and I have 10-year-old twins. We were living out in Bozeman until a couple years ago. My daughter has scoliosis and cerebral palsy, which means the central part of her body never formed correctly — the connections in her brain, her spine, her lungs. Most of her body keeps growing like a normal kid’s, but her spine doesn’t. So when she was 6, she was going to need to have rods placed in her spine that would be surgically lengthened every few months as she grew. We were going to have to put her through that.” 

I watched Tyson’s face in the mirror as he talked. The casual “just chill, man” look in his eyes had been replaced with an intensity, a seriousness. “So we were looking at her needing these surgeries when we learned about a new procedure that Shriners Children’s Hospital in Portland was starting to do where they put special magnetic rods in, and then they’re able to lengthen them from the outside using magnets. They were one of the only hospitals in the country doing it. So we decided we could either stay in Montana and put our daughter through the nightmare of surgeries every few months or move out here.” 

It was that simple. Only it wasn’t.

He went on to describe how they’ve been living in an Airbnb for six months because their house burned in January. He said they woke in the middle of the night to the sound of a crashing window — some neighborhood kids who weren’t supposed to be out saw that their garage was on fire, and threw a rock at the window to wake them up. 

It would be one thing to get two terrified 10-year-olds out of a burning house in the middle of winter. But one of them was a disabled child who was unable to walk and needed to be carried out — she was scared to death and totally incapable of defending herself or asking for help, but was not incapable of hitting and kicking wildly to express her terror. So that January night, Tyson stood outside in the winter rain in boxer shorts and a t-shirt, holding a flailing 10-year-old, and watching as his house burned.

He paused to switch to scissors. “How did they handle it?” I asked.

“Those kids — they’re amazing.” He started cutting again. “I’m constantly learning from my son, how patient he is with his sister. A couple years ago, this would have destroyed her: losing her home, her toys, her bed. But she’s doing great.” He talked for another 15 minutes about the fun his family has together — his son getting his daughter ready for school in the morning, all the while beaming with pride and joy in his kids. 

After that, I became a regular of Tyson’s — whenever I needed a haircut, I made sure to get an appointment with him. And over the past two years, more of his story has unfolded. Late in the summer, he told me his wife is pregnant again, a possibility they had not been planning on. The next barber over, who looked exactly like a heavily tattooed Christian Bale, glanced over with a laugh. Clearly the story was getting a lot of airplay in the barbershop. “I don’t know how we’re gonna manage it, but we’re excited,” Tyson continued.

The next time I came in, Christian Bale smirked at me before I even sat down. “Wait ‘til you hear the latest,” he said while Tyson rang up the last customer.

“I told you my wife was pregnant, right?” Tyson started in after a glance at the photo on my phone. I nodded. “So we went in for the first ultrasound. Guess what?” Next to us, the other barber had stopped cutting his customer’s hair, and was watching my face.

“No clue – what?”

“Twins — again!” Christian Bale didn’t bother to suppress his laugh, which was directed more at my reaction than Tyson’s news. “We already get the weirdest looks from people,” Tyson continued. “I’m just gearing up for walking down the street with my son pushing my daughter in her wheelchair, and my wife and I each carrying a screaming baby.”

We talked for quite a while about the whole situation, and eventually I asked how his family had reacted. The joking look left Tyson’s eyes, and he shook his head. “You wanna know what my mom asked me?” he said, catching my eye in the mirror. “She asked if we were going to do prenatal genetic testing.” He was referring to a procedure in which the doctors look at the DNA of the fetus and can sometimes tell whether she will be born with a disability. “For one thing, they have no idea what causes my daughter’s condition. It wouldn’t even show up on the genetic test. But also…” His eyes narrowed. Behind us, Christian Bale had stopped cutting hair again, and was watching Tyson.

“I was like ‘Why, mom? What do you expect us to do if they find something?’” He shook his head and started in again with the clippers. “Don’t get me wrong, my wife and I are pro-choice, but for us, there was only ever one choice. Do you know how many people do those tests and then don’t go ahead with the pregnancy because of something they found? And a lot of the time, the tests aren’t even right — the baby’s fine.” Another pause to adjust the clippers, and a puzzled look passed over Tyson’s face. After several seconds, he continued. “But you know what — no. It doesn’t really matter whether the baby is fine or not.

“I was talking to my mom about this, and I was like, ‘Do you hear what you’re saying? Do you hear yourself saying that it would be better if your granddaughter hadn’t been born, because of her condition?’”

He told me about the looks of pity he gets from most people, about the number of people who respond with condolences when they hear that they’re having twins again. “They mean well, I think,” he said, “but they don’t see how this can be a good thing. And I’m like ‘No, f*ck you, man!’ I would be a partial human if it weren’t for my daughter.”

People look at Tyson’s family, at his daughter who cannot walk or speak or feed herself, and think, “Those poor people — now they’re stuck with her.” They look at his daughter and they don’t say it, but something like “partial human” comes to mind.

Preach all you want about the inherent dignity of every human life, but you won’t truly understand it until you see what it costs — and what it gives — a guy like Tyson. He told me that when he was a kid, he was the definition of immaturity. He cut hair in the locker room when he wasn’t filling it with smoke. There wasn’t a lot to do in Bozeman, at least in his telling of the story. When he became a father, and the father of a child with a severe, life-long disability, that’s when he became a man. That’s when he put aside childish things.

“I would be a partial human if it weren’t for my daughter,” he said. “Do you know how many moms my wife talks to in the waiting room at Shriners Hospital who cry and ask her how she makes me stay? I’m like, ‘Make me stay? No one makes me stay. This kid is my life.’ But their husbands are off ‘living their best lives’ in Vegas or wherever, and conveniently that life doesn’t include their disabled kid.”

When you look at a man like Tyson, it’s hard to imagine how somebody else thinks their “best life” doesn’t include a child like his daughter.

I tell this story because Tyson showed me something about what it means to be a father and to give your life in self-sacrificial love. In him I saw a love that puts the beloved first; that’s able to say “let’s pick up and move because you need us to;” that can forgo finding something to wear before carrying a flailing child from a burning house; that can say “yes, let’s welcome a second set of twins into our already chaotic lives, even if they might have special needs, even though we weren’t planning on having any more kids.”

But there’s a secret to it that I think Tyson has discovered. You could imagine a guy doing all of these things because it’s the “right thing to do” or because it’s “your duty to your children” — and he would not have Tyson’s joy. But when you give your life out of love for another, you discover that what you gave was insignificant compared with what you received.

This counterintuitive logic, the logic of the cross, is familiar to Christians. But for me it was verified not in a pew at church, but sitting in my barber’s chair, listening to him talk about his kids.

Without My Daughter, I'd Be a Partial Human

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