Well it’s May 15th, I’m lying in bed and it’s rather early. I lay here thinking about all the years I orchestrated some sort of event on this day. Events to draw people in to meet my Jack. Meet our family. Hear our journey. Raising awareness. Often fundraising for a cure, in hopes of saving lives.
This year I lay bed and wonder why the hell am I still doing this? Is it making a difference? Are cures coming? Am I exhausted from it all, is it just too much? I’m not certain but maybe some of my questions yes. And some maybe no. What I lay here thinking is I won’t give up. And we are closer then we were to a cure then we were 10 years ago. Much closer.
So today, speaking for myself, is about saying Jacks here. I’m here. He’s still living and I’m still surviving. Kids are still dying, hearts still aching. Doctors still confused. Researchers wondering. Journeys divided. Hands to be held. Tears to be wiped. Stories to be shared as they unfold.
So I’m taking a big deep breath. I am getting up as dawn begins to break. I’m going to share away on social media. I’m going to honor the emotions attached to this day. I’m going be grateful for the alive and continue to support our community as we pound pavement for a cure.
And I am going to HOPE that one day on May 15th I sleep in. MPS cured.
Peace. Love. And Purple.