Dragons and Dreams

The scales slid over the rock, moving slowly, like the animal was trying to decide if it was meeting friend or foe. My brother, Colten, stood, hesitant, watching and listening to the careful instructions that would allow him to get close enough to experience something remarkable.

A year ago today, I watched my brother meet a dragon—a Komodo Dragon to be exact. It was a dream he'd always had, and one I don’t think he ever truly thought would be achieved. To be honest, it shouldn’t have. He should have died within weeks of being born. My sister should have died as well. They’re both alive thanks to my mom’s sheer tenacity, and their excellent doctors.

Colten, and my sister, Natasha, have Peters Anomaly Plus Syndrome, a very rare condition that caused them to be born blind. Colten was one of the first people in the world to be diagnosed, and there are fewer than 100 people who have been diagnosed with Peters Anomaly Plus Syndrome worldwide. Peters Plus Syndrome has a plethora of problems that come with it, and doctors initially told my parents Colten wouldn’t live, and if he did, he would be blind, deaf, non-verbal, and would need constant care. After searching all over the world, my parents found a young doctor, the late—and much loved—Dr. Alan Crandall, at the University of Utah (Moran Eye Center), who thought he could help. He believed he might have a way to save Colten's eyesight.

It took surgery after surgery, corneal transplants, and between my two siblings, over one hundred surgeries and procedures that continue even now. Doctors couldn't save both of Colten’s eyes, but they were able to give him vision in one. He’s now legally blind in that eye, and completely blind in the other. Because of the things doctors learned from treating Colten, when my sister was born two years later with Peters Anomaly Plus Syndrome, they were able to save the sight in both of her eyes. Colten and Natasha’s eyesight didn’t come without trials. Medical insurance wouldn’t cover their hospital bills and my family struggled financially. Many of my own childhood memories were of the beeps of machines in hospitals, always wondering if Colten and Natasha would make it through their next operation, and if we’d have a home to live in, or food to eat.

Colten and Natasha’s lives haven’t been easy, but the thing I love about Colten is his contagious smile, and how he sees the best in every living thing. He can answer any question you have about the Titanic, he excels at video games and always agreed to be the Luigi to my Mario, and most of all, he absolutely loves animals—especially the ones most of us try to avoid. Colten’s love for animals was due in large part to a TV show, and his favorite person in the world, Steve Irwin.

If you were in Sydney, Brisbane, or Beerwah, Australia, the first two weeks of November 2022, and heard someone explaining how many stairs were in front of them, or what direction the street slanted, you might have been passing by my husband, Dan, and I, helping Colten navigate those cities. If you heard someone reading a restaurant menu out loud, or reciting the description of art on a museum wall, you might have been listening to us explain to Colten what he couldn't fully see.

We were in Australia for many reasons, but grief and loss was the driver of our path. Nine years ago, on November 18th, I got a phone call that changed my life. My best friend, and my book editor, Dr. Ashley Argyle, had passed away suddenly. We were young, and the loss was unexpected and absolutely devastating. Trying to navigate the grief was overwhelming. Anyone who has experienced a sudden, debilitating loss will understand the time that follows. The confusion, the pain, the soul deep sadness, and the feeling of drowning on your own breath. As the emotions ebbed and swelled for months, the thing I clung to like a life preserver was the memories I'd made with Ashe. The trips we’d taken. The conversations we’d had. The adventures we’d experienced. Losing Ashe was a lifequake that taught Dan and I the value of time, and we re-prioritized. Experiences became paramount because we knew nothing was more valuable than the memories.

Colten is now one of the oldest people we know of with Peters Anomaly Plus Syndrome, and we don't know what the future holds. But if Ashley’s loss taught us anything, it's that we don’t have that answer for anyone. So Dan and I went to my brother and sister and asked them to make a list of things they wanted to do and see. At the top of that list for Colten was visiting The Australia Zoo. While Colten and Natasha have adapted well to their disabilities, there are a lot of things in life that aren't accessible to them, for many reasons. Dan and I didn't want this to be one of them.

We were in the process of making the trip to Australia happen when Covid hit. We waited for things to improve, and hoped Australia would open again soon. When it did, we saw a flight deal and immediately booked the trip.

The Crocodile Hunter Lodge had just been finished, and we had the opportunity to stay in one of the beautiful cabins adjacent to the Australia Zoo. Kangaroos hopped around the grounds, and Koalas climbed the trees. Each morning, we’d stop at the Warrior Restaurant for breakfast that included elaborate milkshakes that could double as edible art. After a long day at the Zoo, we’d relax on the edge of the crocodile mosaicked infinity pool while we watched emus chase kangaroos.

We spent four days at the Zoo, doing as many animal encounters as possible. I never knew how much I needed to hold a koala until I’d done it, and I’d never really been interested in meerkats until the adorable little troublemakers were climbing all over us and eating from our hands. The gigantic tortoises are amazing, and will probably live another century thanks to the Australia Zoo’s care. And Colten got to see ALL the snakes he could dream of, and held one too. We met incredible people, watched multiple shows in the Crocoseum, and saw as much of the Zoo as we possibly could. We were there for Steve Irwin Day on November 15th, and it was beautiful to watch so many excited people celebrate Steve and the Irwin family.

I’ve thought a lot about legacy since our trip…what it means, and what people want their legacy to be. There was a video during the Steve Irwin Day show with an old interview of Steve. He said that by conserving wildlife and helping the planet, he was helping humanity. That’s what he wanted to be remembered for. What the Irwin family has done for wildlife, conservation, and awareness is incredible. I asked Colten what made the Australia Zoo so special to him. He told me he loved Steve and Terri, and how Steve cared so deeply for his family and would do anything for them. That Steve taught that animals, like people, aren't scary because they're different, and all souls should be treated with kindness. He told me he loved that the animals at the Australia Zoo are animals that needed help. Animals with disabilities. Animals that needed someone to see them, take a chance on them, and protect them.

Steve accomplished his goal and his legacy is palpable. It’s not just the photos all over the Zoo, or the old videos of Steve, Terri, Bindi, and Robert. It’s an actual feeling—like the charisma Steve radiated is encased in a piece of land in Beerwah, Australia, and if you visit the Zoo, a speck of that magic settles in your heart and comes home with you.

I've experienced loss since Ashley passed, and I'll experience it again. The thing grief has taught me the most is that loss has a way of teaching you how to live. I will remember our trip to Australia with Colten for the rest of my life, and I know how important those memories will always be to me.

As we drove away from The Crocodile Hunter Lodge on our last day there, Colten looked crestfallen. I asked him what was wrong and he said he was heartbroken we were leaving. He wanted to stay. To volunteer and help care for the animals. To be able to hold onto the magic of dragons, dreams, and Australia just a little longer.

I told him maybe we'd be back someday.

His eyes brightened.

I hope we will.

*Special thanks to all of the staff members who were so kind to us at the Australia Zoo, and Crocodile Hunter Lodge, and made the trip memorable for Colten. Visiting the zoo was his biggest dream and you all made it so special. Thank you for taking such wonderful care of us. I hope that one day Colten can come back and have the chance to say hello again. I’m not sure how many of you are still there, but here are a few of the names I remember from The Crocodile Hunter Lodge: Kim, Justin, MaKayla, Riley, Katie, Daniel, and Steve, our bus driver.