Seven years ago, a beautiful girl was born named Kelsey. She came into the world with grace and her umbilical cord wrapped around her neck. “We will consider it her first necklace,” laughed the doctor as her Apgar test showed health on all levels.
The course of her first 3.5 years is almost indescribable when we look back. We had constant signs and indicators of worry and trouble. We had surgeries, hospital visits, biopsies, rashes, and red marks. We had so much hope that “this would just go away,” though we knew in our hearts that 3.5 years of worry were not going to simply do so.
Almost 3.5 years to the day, on a June evening at 5:22PM, our world changed forever. Our 3.5 year old was diagnosed with Polyarteritis Nodosa and everything we knew has been more difficult since we left the hospital that night.
Understanding what a rare disease does to a person and her family is something you cannot understand without enduring it firsthand. It gives you perspective, it creates constant doubt, but it also helps you feel tremendous hope for what you learn and discover (depending on the day).
The second half of Kelsey’s 3.5 years have been equally trying. “At least we know what it is,” we sometimes say, because we now know what we are worrying about. Sometimes, that only makes it worse.
When Kelsey blows out her seven candles, we will be filled with hope and wonder. She is a child that lights up the world with grace, beauty, wisdom, and energy. Her love of life cannot and should not be contained. Keeping her body strong, filling her brain with more wisdom, modelling character virtues, and choosing love in the face of the rare illness we first learned about 3.5 years ago is the journey we travel every day.
Seven years and so much of a story to tell.
Happy birthday to a girl that has taught us so much and continues to sparkle and shine in so many ways.
