5 years ago today I said goodbye to my niece in the most horrific of ways. A calm, yet urgent phone call came in the morning informing us that Henley was dying.
I walked into her room, purple galore with antique white furniture and just the right amount of sparkle. To the right is a tree that we had made filled with "leaves" if inspirational quotes, prayers, and memories. To the left, a beautiful 4 year old girl that inspired literally thousands of people that spent more of her life fighting cancer than not. She looked slightly yellow, her teeth showing, while she struggles to breath normally with the classic Cheynes-Stokes breathing. She was there, but unrecognizable from the Henley we all knew. The site shatters your heart into an impossible number of pieces, leaving only a semblance of what it once was when it's put back together. The memory of this moment is stuck in my head and replays at the most random of times. I can feel that room and it's intensity. A feeling of despair and crushed spirits mixed with the slightest amount of relief for Henley to find peace. I kneeled down on the floor next to her, desperate to make sure she knows just how deeply I love her, how proud I am of her, and much I'm going to miss her. I wanted her to feel how much she's impacted me. How much she's taught me and how I'll never be the same without her. But I can hardly muster the ability to say anything. I lay my hand on her chest as it struggles to inhale and exhale, her body feels so small. I say a prayer. I tell her I love her. Whatever else I said in that moment, it wasn't enough.
There is a sense of calm in the room. Henley made sure there was. There was something bigger than life happening and in our presence was an awe inspiring respect for the process of life in a way there is a calm before the storm. You could feel everyone internally reliving the nightmares, victories, happy memories, and stresses of the last 3 years. Her angel soul was permeating within each of us as we faced the reality of the situation while her body took its final breath. As peaceful as you can imagine, she was gone.
Maybe the most horrific part was standing there helplessly as Henley was carried off out of the house and into a stranger's vehicle for transport. Standard procedure and done in as tasteful as it could be done. What must the guys carrying her away feel? My sister Lynsey shrieks. I can hear it to this day. There was such a finality to this process. My sister Lynsey and my brother-in-law, Grant, gave up everything to help their little girl and that fight was over. A new fight was beginning just as one ends. The new fight will last a lifetime. It is a fight to pick up the pieces.
Our whole family gave so much time and effort to ensure we all supported each other and Henley during her fight . In so many ways we all dedicated much of our life over those 3 years so that Henley would get better and the Romine family could function as normally as possible in the most abnormal and unfair situation you could be in.
I'm so proud of my sister and brother-in-law for how they handled such a terrible hand they were dealt. They leaned on each other, their faith, and their family. They used their situation to help others, they brought people together. Instead of being divided, they got stronger. In that type of environment and stress, you're going to find out really quickly what kind of person you are. They have got to feel good with what they found out despite enduring the worst of pains.
July 19, 2013.
That day is the reason that I have taken on this challenge to write everyday for 30 days. And this is the post I knew I had to do and dreaded the most.
I am writing to raise money for Henley's foundation that her parents set up so that together we can all send other kids fighting cancer on an all expenses paid excursion with their families in Indy. If you feel compelled to help, please donate here!