Blue Sky Girl

Over the past few weeks and months I have in a way had my ear muffs on with most things rett. I half pay attention to the things that are close to home and graze over the rest. Last week, I finally clicked on a link that I had seen more and more people talking about on facebook. You can click here if you want to see it for yourself. It really struck a chord with me. A large part about why I dread October and rett syndrome awareness is it seems to have an edge of ‘look how bad this is, we have to fix it now’ and that is why I withdraw a bit. As much as I would rather Claire not have rett, there is still a lot of life to be had within it. The whole concept of the blue sky girls is creating an event that symbolizes their strength, will and what they CAN do. To see this out there really deeply encouraged my soul. So I wrote a note to the contact person to say thanks and let them know that we would be standing with them, just by ourselves out on the west coast. To my surprise and delight, they responded quickly,  it was Dr. Sasha Djukic! She is sorta famous in my mind, I have heard of people that journey to see her and the great advocate that she is for rett syndrome and I got an email from her, wow! She also sent a shirt overnight so that Claire could have it for the big day, how great is that?!?! Saturday morning came and on our way to the stairs that she would climb, Claire fell asleep. There was no waking her, only waiting, so wait I did. Jared and Chloe went to go pick apples and I drove around and took care of a few small errands. Eventually Claire woke and with the biggest smile on her face. Since we had to wait for the other half of our team, Claire and I opted to go get a power snack at Verve since it was close. Whip cream and carrot bread, how can you top that? You can top that with the smiles and encouragement that came from the girls working there. They cheered Claire on in her efforts for the day and even put extra chocolate sprinkles on her whip cream.

 Between her nap and the yummy snack, she was ready so again, we headed down to the stairs and the timing couldn’t have been any better! Jared and Chloe got there ahead of us and had run into a friend. Being that he is in fact Captain Awesome, Jared got his friend to hang out and take video and pictures for us. We had asked a few different people but it being last minute, no one was available so we had given up on the idea of video or a group picture, so that we got this is super special. So here it is, the last bit of Claire’s ascent to the top!

It has been such a nice way to spend a lovely October Saturday. This didn’t seem like a rett syndrome thing to me. It was really more of us being us. We help Claire up the stairs all of the time, but today it was special because we did it with others that we couldn’t see, joining together to celebrate the girls. It was also special because of the encouragement that we got from peoples paths that we just happened to cross. Even with our cool and gray fall weather, it was for sure a blue sky kind of a day!

2 thoughts on “Blue Sky Girl

  1. mj says:

    this brought tears to my eyes. mostly because we were thinking of claire as we were atop the stairs at harvard medical. i looked to my left and lo and behold, doctor mary!!! i couldn't believe my eyes. it was so wonderful to catch up and to hug a piece of my beloved california. so happy you joined in the festivities.
    p.s. love chloe shouting “go claire go!”
    p.p.s. look how long your hair is!!

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