Photography by Studio 1492 Photography
Meet Kelly. She is Beauty Revived.
When I saw the email from Beauty Revived about nominating a woman who inspires others through her courage and kindness, I knew instantly that I wanted to nominate Kelly. I sent Kelly the information about the campaign asking if I could nominate her and this was her exact response- “That’s really sweet of you. It would be an honor to be nominated even if I don’t feel like I deserve it.” Please let me tell you why Kelly more than deserves it.
Kelly and her husband Kyle are parents to three little boys. Leon is 6, Grady, 3, and Edison, who was born on May 1, 2015. Before Edison was born, Kelly already knew that he had a couple of very serious medical conditions: hypoplastic left heart syndrome (HLHS) and heterotaxy. When he was born, he was rushed to Riley Children’s Hospital in Indianapolis where he would wait in their NICU for the first of 3 highly invasive heart surgeries. He had his first surgery (the Norwood Procedure) at just 10 days old which went well. However, the doctors noticed other issues arising and he was soon diagnosed with biliary artresia, another rare condition where the liver’s bile ducts are obstructed, not allowing bile to pass from the liver to the intestines. If bile cannot exit the liver over an extended period of time cirrhosis sets in, ultimately leading to liver failure. Four hours into the surgery to correct this issue, the surgeon asked to have Kelly and Kyle meet him in a consultation room. He explained that they were not able to do the procedure due to a malformation of arteries and veins that had formed on the portal plate of his liver. They were then told that Edison was not a candidate for a liver transplant because he had only had the first of the 3 heart surgeries. In addition, they explained that they were not sure if he would ever be considered a candidate for a transplant due to the complexity of his situation. As Kelly writes on her blog, “His little body was engineered to fail.”
Heartbroken, they spent weeks getting second opinions, meeting with other specialists and looking at every alternative. However, when it became clear that there was nothing to be done, they made the choice to bring Edison home under hospice care so that he could get to know his 2 older brothers, his home and “ultimately pass while swathed in love.”
I have known Kelly since we were children. As I read these words on her blog, I lost it. As a mom myself I could not imagine what she and Kyle were going through. I don’t think anyone could unless they had ever been in a similar situation. Through it all, Kelly has shown dignity, grace and a strength most cannot even fathom. When they left the hospital at the end of June, they were told that the doctors estimated that Edison had anywhere from 3-6 months, providing that his heart continued to do well. As soon as we found out that Kelly had been chosen as Indiana’s Most Beautiful Woman, we made plans for the photo session. Kelly, who is an accomplished photographer herself, asked to shoot around sunset in her backyard since Edison was not very mobile. We shot at their beautiful property just a few weeks after them leaving the hospital, and sadly, two days later Edison passed away. He was just 4 months old. One of Edison’s favorite things was to be snuggled in his mommy’s arms and play with her hair. I am so glad we captured that moment Sunday evening. While I cannot put into words how heartbroken I am for Kelly, Kyle and the boys, I am so grateful that we were able to capture these priceless memories for them in time. Today when I went to Kelly’s blog to get all of the official terms and details about Edison’s conditions, I read a blog post that she posted the day before Edison passed. The post was entitled ‘The 2nd Hardest Thing’. It was about how people are constantly questioning her on if they truly exhausted every realistic possibility. Kelly’s response is exactly the reason that she should be Indiana’s Most Beautiful Woman.
“Sometimes it’s not about doing the risky surgery that only has a 10% chance of working. Sometimes it’s about letting your child pass away in loving arms and giving them some dignity. Sometimes it’s about not making them suffer anymore. Sometimes it’s about giving your child the best most loving life that is possible even when it means that you will walk around for the rest of your life with a broken heart.”
About the Photographer
Nowelle is a lifestyle photographer in central Indiana with her husband, Paul, 7 year old son, Benjamin and 2 dogs, Sam an Australian Shepard and Charlotte, a 6 month old Newfoundland. Her motto is “At Studio 1492 Photography we do not shoot ‘Cookie Cutter’ sessions because we are not ‘Cookie Cutter’ people. Every person is a unique individual, every family has a different story to tell and every tiny newborn has their own little secrets. At Studio 1492 Photography, we let you do the talking and just stand back and capture the untold story. In her spare time, she enjoys running, biking, water skiing and drinking lots and lots of coffee!