Every now and then, the universe provides you with a glimpse into, let’s call it, the bigger picture. That was the case when I met Amanda Jean a few years ago. Amanda is as fun and quirky as they come, with a contagious smile and a beautiful outlook on life. We have worked together on several shoots, including one of my favorites to date and the first shoot we did together playing around with glitter.

In another recent shoot we worked on together we played around with paint. Which was a really fun concept to capture. We really enjoy capturing and working on alternative textured style makeup looks, which is a good way of putting it. What is really spectacular about her though and what made our working together feel like a needed glimpse into the universe, is her story.

A Warrior is Born

By 6 months old, Amanda started having lung problems and then needed a transplant by her first birthday. After the transplant, she would spend the next 18 years with a feeding tube in her abdomen. Being resilient and, in her own words, a little stubborn. She made sure to keep her weight up and worked out to make sure she could have it removed. She overcame all the complications that came with that, as she needed additional surgery because it did not heal naturally as it should. Listening to her tell of the amazing life she has lived and the difficulties she overcame truly resonates with me on such a personal level.

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Flashback

Several years ago, on January 13, 2019, my wife and I sat in a hospital room that felt cold and damp. Much like in a movie when a character is getting bad news and the audio is just mumbling with a long ringing in the ears, that is how I remember the doctors talking. The next few days became a blur, but I can remember every detail of them. Our daughter, Rylee Marie Wark, had succumbed to a rare condition in which she did not have a full circulatory system and would never leave the hospital. She was born three days earlier, weighing 9 pounds, 14 ounces.

Krista and Bryan holding their daughter Rylee

We sat by her side for as long as we could before we had to make the decision to remove her from life support. Along with that impossible task, we had to make a decision that is all too often placed in hospital shows as a plot device. Organ donation. When sitting at home watching TV, it seems like, “Why are the parents being selfish?” It feels like they are all filmed that way. In reality, it feels like I sat there with the pen in my hand for an eternity. My skin was cold. For one thing, I knew as soon as I made the decision that I had to face the actual reality that I would never hold my daughter again. But her 3 days on Earth touched the lives of many.

The Gift of Life

In the end, I did decide to allow them to donate her much-needed vital organs, but I asked only to be informed if anything was successful and otherwise be left anonymous. We were informed that there was a successful heart transplant as a result, and thus we took solace in the fact that a life was saved out of our tragedy. Her beautiful heart lives on in 3 babies who needed a transplant. Sadly, her death certificate arrived before her birth certificate. But there are unexplainable feelings that come with the loss of a child, and one of those things is irrational anger. I would be secretly angry at friends who shared photos of their children with me. I hated movies where everything worked out in the end, And yes, sometimes I found myself hating that someone else’s prayers were answered and was living with my daughter's heart. irrational or not I wanted them to feel the same pain. However, that anger would eventually leave as I began to find peace with what had happened.

Our Daughter Lives On

When Amanda shared her story with me, it gave me the opportunity to truly learn about the other side of the coin. It provided much-needed closure. I asked if she knew anything about her donor, and she did not other than it would have been someone around her age. She mentioned that her mom had sent a letter that was forwarded to the family but never received one in return. Being able to be part of both sides really shines a light on the matter. It reminded me how amazing life is. Not only that, but it showed me how precious a gift it is. My wife and I realized that organ donation is immensely beneficial for the grieving process. We have experienced a sense of relief. We may have lost our daughter but she gave a fighting chance to others. We understand that by donating our daughter’s organs, she was able to save numerous lives. Astonishingly, a single donor has the potential to save up to eight individuals with their generosity!

A Tribute to Amanda’s Lung Transplant

Today marks the 25th anniversary of Amanda’s lung transplant, and she allowed me to be the one who captured this amazing feat of strength. Her concept was as beautiful as they come. A visual of the life our lungs provide us. It was an absolute honor to be able to capture these photographs. Thank you to all those who put positive energy into the world. I would like to leave you with this quote