My days have been full for a while now so still, it is no surprise that I am exhausted. I could use a few days off to sleep in and nap in the afternoons, perhaps even do something just for fun and nothing out of necessity but I don’t see that happening this year. Rest just isn’t an option right now and that is why right now I am thankful for a few beautiful moments that restored my spirit. Saturday morning we met with three other families from the bay area to stand with others all over the world and symbolically ascend to the top of the stairs. When you stand back and honor what the children with Rett Syndrome do every day you can’t help but stand in awe, their courage and strength is amazing.
While we were there Dr. Mary asked me to be her date later that night as her husband was unavailable to attend a fundraiser with her. Those of you who know me well know that it is extremely out of character for me to trade my jeans and flip flops for a dress and high heels but to spend time with Dr. Mary and the other families that were going to be there, I was honestly excited to. Over the coarse of the evening I was able to meet Dr. Lubin, the CEO of Children’s Hospital and Research Center Oakland, the man is inspiring. It is another one of those things that words don’t adequately express but this was the picture that was taken as Dr. Lubin approached Erica, Paige and I. As Paige tells the story, Katie’s Clinic was the brainchild of Dr. Lubin. I wasn’t there, but something tells me that Paige and Jesse were a pretty big part of it to. Either way you tell it, today there is a Katie’s Clinic and it is making life better for the families that go there. My life is better because of what Katie’s Clinic does. I honestly cannot imagine where we would be if it weren’t for the help that we have gotten from the staff of Katie’s Clinic and the people that have been working to keep it funded and running for the last eight years. Listening to Paige and Dr. Lubin talking about it I was reminded about how far we have come and the tremendous support that surrounds us.
It was so worth it to wear high heels and lipstick and be surrounded by heroes like this. I just don’t know how some days end up working out like that, but they do. I didn’t have great expectations when I woke up that Saturday morning, but I sure had higher hopes when the day was over. Even with my higher hopes, I still woke up tired the next morning and sore from my fabulous shoes. We took it easy. Hung around the house, Claire got a haircut and before dinner we went out to the tide pools. Claire was so relaxed, she took slow deep breathes and her body relaxed as the breeze gently blew a little spray from the waves toward us. It is moments like that that she tells me it’s all going to be alright. She is tired too but she is hasn’t given up. After she strolled on the sand she even climbed up the last 15 stairs to get to the car. It wasn’t a nap and carrying her up a flight of stairs after wearing heels wasn’t easy but it restored a part of my spirit that had really been depleted so I gladly take it.