Saturday, October 13, 2012

blue sky girls: upward and forward

Saturday morning we took a road trip down to Boston for the second annual Blue Sky Girls event. We went last year and it was an uplifting and inspiring event - and so good to meet a few more New England families. 

This year, a day or two before the event, I got a facebook message from one of the event organizers wondering if they should change venues from the steps of Harvard Medical School to another location nearby where the steps were much smaller and much less grand because the Medical School was covered in scaffolding. It's go big or go home here in the Layton household, so I voted for the big steps, despite what it might look like. 

We left in plenty of time, but got caught in some awesome Boston traffic and pulled into the parking garage at the time we were supposed to be standing at the steps. So, Ryan rushed off with Leah while I quickly fed a starving Kate in the car. When Kate finished, I ran down six flights of stairs and across the street to the event.

I saw a field full of friends - some I know, some I've never met - all wearing blue, holding balloons, pushing girls in wheelchairs, laughing and talking amongst themselves. I found Ryan and Leah and made my way through the crowd only to find that each girl had been assigned their own personal cheerleader. Leah's cheerleader was Jenni - a darling Junior at a local high school. Jenni made Leah her own sign and stayed with us every step of the way. 

After we were all checked in, the group made their way across the grass to to the base of the steps. And I looked up. I'm not sure why it hit me so hard, but the scaffolding was perfect. I had seen the building last year and it is a beautiful building. But I guess it needed some work. I don't know if they were shining the windows or retrofitting it or what, but the building obviously wasn't perfect. The sight of it nearly brought me to tears. 

It's been a rough year with Leah. With the onset of her seizures {that are still nowhere close to being under control}, came a whole slew of new problems. She tires very easily, has so much less strength and stamina, is dizzy all the time and constantly runs into things. She drools more and smiles less. She hasn't lost the sparkle in her eyes, but sometimes it's harder to see when she doesn't even have the strength to hold her head up and look at you. But it was while looking at the scaffolding that I realized, we're all works in progress. We all need some work done on us from time to time. Maybe these seizures are our scaffolding - they are shining our countenances and making us stronger. They are retrofitting us for days ahead. 

And with that, we climbed - upward and forward. Showing the world that, no matter the odds, no matter the difficulties, we will keep climbing. 


Shannon said...

i think this may be my favorite post of all time. the scaffolding analogy hit deeply. i love leah! i'm so proud of your whole family for climbing higher. i love her cheerleader! what a fabulous tradition. what a meaningful event.

Erica said...

ya brought me to tears with this one. love you and your fam.

Amy said...

such a beautiful post, maren. you always have the greatest insights. i love that Leah had her own personal cheerleader - and the stair-climbing tradition is fantastic! We are all cheering for Leah and the the other rett girls and parents. :)