I've been meaning to share the story of my friend Rhema Butler ever since she passed away last June. She's been in my thoughts ever since and my heart will always ache for her family. I guess I've been struggling with the idea of how I could possibly do justice to such an amazing young lady in mere words. The answer to that is that I simply can't of course. Wrapping one's brain around the devastation caused by childhood cancer is impossible. Cancer is relentless and delivers nothing but pain, suffering, worry, grief, and sorrow to children and to their families. And it happens so completely indiscriminately. It's like the "Cancer Cards" are just floating through the cosmos and then merely handed out at random with an accompanying card on plain stationary with the inscription, "Here you go...your life now sucks."
Rhema was just 14 years of age. She was diagnosed with a rare type of pediatric sarcoma 3 1/2 years ago. She was a warrior, plain and simple. The pain and suffering that she endured was unfathomable. But at the very same time, her will to live and determination to enjoy each day was unwavering. She was loved by all who met her and most deeply by her adoring family. Her mom Kirsten was with Rhema every step along this path and was always there to catch her, guide her, hold her, listen to her and most of all love her.
I met Rhema through my friendship with forever 10 year old Henry Xu who passed away in December, 2010. Henry was the biggest little man that I have ever met and he knew Rhema through Ronald McDonald House. They shared a lot of good times together and they also shared a similar type of cancer. The day I met Rhema was at Henry's memorial service. There she was in her wheelchair accompanied by her mom Kirsten and she arrived to pay her respects to a young boy who died from the same disease that she was then fighting. Rather than shy away from such a sad day Rhema attended and paid her deepest respects to her friend. In one of the most heartbreaking moments that I have ever witnessed, Rhema scooted up to Henry's little open casket and paused for a few minutes to say goodbye...the strength that she showed in that moment was astounding and I am still in awe of it to this day.
A little while later just outside of the church sanctuary, I was introduced to her by my goofy camp name, Mooselips, and she knew that I was Henry's friend and had taken so many photographs of him. She asked me, "Would you take some pictures of me sometime?" I responded, "Sure, how about now?" This was the first photograph that I ever took of Rhema.
|and moments later, Rhema with her mother Kirsten|
When I would visit her in the hospital what struck me most was her quirky, inquisitive voice, and careful but deliberate choice of words. Actually that's not altogether true. Come to think of it, it was her honesty that stands out the most. She was genuine, real, and unpretentious and even while spending time with me, a person she hadn't known for very long, she was completely herself. Her gift to me was not holding anything back just because she had a visitor in the room. At times she would cry out in excruciating pain and Kirsten would just hold her until the pain subsided.
In between pain episodes Rhema liked to look out the window at all of the construction going on for the huge addition to the hospital. She and Kirsten had all kinds of theories about the construction workers and discovered that their "cuteness quotient" was directly related to their particular job. They were just cracking me up!
|Sharing a laugh with big sister Kirsey|
The quiet casual moments never seemed to last very long though. Sadly, Rhema's constant companion was pain, and trying to manage that was a full-time job for Kirsten. I just kept thinking that a cure has GOT to be found because suffering like this was completely unacceptable.
One day I stopped by the hospital to visit and Kirsten had just stepped out to do an errand. The nurse had called Rhema and asked if she wanted a visitor. Without even asking who it was she said, "Yes!". It was in the middle of the day but Rhema was laying by herself in almost total darkness with the blinds drawn. Across the room the small TV was turned on but Rhema wasn't really paying attention.We wound up having the nicest visit together that day and just talked about any and everything. She even let me take this photograph.
Most other 14 year old girls in May of 2011 were making their plans for summer, with the end of the school year coming up. In fact, Rhema did do a little of that. I gave Kirsten the application information for Camp Goodtimes and the two last spaces of the summer would be available for Rhema and her older sister Kirsey. That was such a simple dream...just to go to camp with her sister. Tragically, during the last week of May last year, Rhema's condition started to deteriorate rapidly. Still, she loved being with her family and even loved having visitors. She was so tired and groggy from all the medication that she could barely keep her eyes open, but she tried anyway because she just didn't want to miss anything.
|Rhema with her big brother Kyran|
|Kisses from her beloved niece Hallie|
|Rhema's dear friend, sweet Mia.|
Rhema was and still is an inspiration to so many. One incredible friend, Jacob, within weeks of meeting Rhema for the very first time, was inspired enough to start the wheels in motion to create a Guild for Children's Hospital. His dream came true with the formation of "Rhema's Reality".
Rhema's Reality on Facebook
|Jacob, Rhema's Reality founder|
Rhema had a smile for anyone and everyone no matter what she was going through at the time. Her grace under such terrifying circumstances was astonishing. Throughout her struggle she was genuine, honest and compassionate and she held her family and friends close...so closely and tightly in fact that even though she is no longer physically here, she became a part of all those that loved her, forever.
I'll always be thankful for that one little moment when Rhema just wanted me to take her picture. The friendship that followed with her and her family is one that I will always cherish.
Thinking of you today dear Ladybug.