Last night I attended the fourth annual "Promise to Kate" fund raiser. You see, Kate was born with myotonic dystrophy, a genetic disorder that would change the lives of every member of her family as they uncovered the depth of this disease. It would also change all the rest of us, those of us who love Elizabeth and Dave and their extended family, because we would begin to understand what compassion and commitment can do. Elizabeth and Dave founded an organization that raises money for the families in Jacksonville who use Wolfson Children's Hospital, the children's hospital that continues to serve the Conte family, when needed. The organization also promotes awareness and raises funds for research for myotonic dystrophy and is at least, partially responsible for the enlarging force at UF for research into the disease.
Today Kate is a kindergartner, full of grit and determination. Mostly, she makes me laugh... Elizabeth has returned to work and this year our roles have reversed. I am the first grade inclusion teacher and I see her each day as she so beautifully serves as my Special Education partner. With great humility and respect, I write this open letter to Kate's parents...
Dear Dave and Elizabeth,
Last night you introduced us to new researchers who would be joining the research going on at UF for Myotonic Dystrophy. You have been part of bringing together this new team and you continue to put pressure in all the right places to make sure that the research germinates, produces and delivers. Oh, we know there are lots of other people helping to make all this happen, but to us, your friends and family, you are the face of this disease. We all understand... your urgency, this race against time to make a difference in Kate's lifetime... because of you.
Last night, Elizabeth, you described yourself, as just a mom, and you are, but you are so much more. You are our inspiration, our hope, and Kate's future. You are the light that illuminates the dark road. I was reminded once again last night about the really insignificant little hurdles in my own life, because you face, what to some seem like impossible odds, and yet, you see the sunshine and are able to turn it all around to count your blessings. As important as the end is, it's the journey that you are taking, that models for each of us how to live our own lives every single day.
I blubbered through the videos again last night, even though I've seen most of them many times. Kate's struggles and successes will always reach down, grab my heart. and then just squeeze. She is a fighter, born from a long line of fighters. I realize that your experiences are not entirely unique. It could happen to any of us... but it's your response that has been so unique. Not only did you and Dave turn your circumstances into a mission, but you took a Divinely crafted vision, and you acted on it. Maybe the road is not always well lit, but with a servant's heart and a warrior's determination, you are leading the way and reminding us all that we too, have a promise to keep.
Elizabeth and Dave, Charlie and Kate... you are a gift, beyond words. May your vision be clear. May your fight be noble and may you always know that you are surrounded by a legion of those of us who believe, and who will honor our own promise to Kate. Stay the course, dear friends. There are great things to accomplish...