Perception. Happiness. I guess these are relative terms.
I have had a few moments recently where “Kelsey looks so great” has been at the crux of conversation. That is how most people naturally perceive Kelsey. As a result, I see that they truly do not understand that the pain and the disease are hidden deep inside.
At first glance, Kelsey is a complete dose of sunshine. I am grateful for that every single day. You truly cannot help but smile in her presence. I am guilty of calling her my sunshine because she radiates happiness.
Except when she doesn’t. When she screams in agony with her injections or shrieks in pain because she cannot stand on her leg. Most only see the sunshine. Trust me, that is my preference.
We were recently granted an incredible experience to see a National Park from the air. We were equipped with headphones to learn as the pilot narrated some of the most noteworthy sites along the tour.
While the overall ride was tremendous and once-in-a-lifetime, some of the most memorable moments came from the underlying voice in the headphones.
The lighthouse was lovely, but even more enjoyable was the tune of “I’m looking over a four-leaf clover” that embodied the moment.
Kelsey sang, hummed, and dazzled the skies with song during our flight. The words are uniquely symbolic as I read them now:
“One leaf is sunshine, the second is rain.
Third is the roses that grow in the lane.”
The pilot was a true professional who tuned her out entirely (or pretended too, at least). However, she added a bit of laughter and a fond memory of that incredible flight for those on board.
No wonder the world sees Kelsey for the happy and energetic little girl that she is, it is what they see. Her visible layer is sunshine.
The second is rain. Kelsey’s illness is not one that can be seen. That is why we began our journey one year ago by launching our website and our foundation.
The unseen is where the pain lies and where the help is needed.
Hopefully, our research efforts and your generous support in helping these efforts will lead us to a cure sooner than later to bring the roses that grow in the lane for Kelsey and all affected patients of PAN and dada2 .