Saturday, October 15, 2011

blue sky girls

i'm going to come right out and say it: a lot of things connected to rett syndrome are hard for me. i know, i know. that sounds like an obvious statement. but i'm actually not talking about the day-to-day with miss ribbons. i'm talking about all the riff raff that goes on around us. the anger that some have in their hearts. the feeling that the world owes us something. the angst some have for others when they {gasp!} don't understand what we're going through. it's not that these thoughts never cross my mind, but when they do, they are fleeting. because overall, leah's struggles have only made me more aware that everyone is struggling. most definitely not in the same way. and sometimes not very noticeably. but i'm not always aware of their particular struggles, so why should they be expected to be aware of mine?

that being said, something else i struggle with is the way many people interact with leah. i understand that they might just not know how to approach her or engage her in conversation. and yet, part of me yearns for that complete acceptance and treatment that every normally developing child gets. no baby talk. no ignoring. no separation. just leah being a silly, smart, smiling four year old.

so, when something comes along that is overwhelmingly positive in nature, shows off leah's amazingly awesome work ethic, doesn't force me to beg others for money and still raises a bit of awareness, i'm all ears.

on october 15th, that happened. dr. sasha djukic, the director of the tri-state rett syndrome center at montefiore medical center had an idea. she wanted to host an event around the world to "celebrate rett syndrome month and the strength and will that girls with rett syndrome have shown to keep going no matter the odds and difficulties they face every minute of their lives."

and so, from helsinki to harvard, palm beach to pakistan, girls with rett syndrome and their families and friends climbed stairs - a symbolic gesture - because climbing stairs takes you upward and forward even if it is difficult. 

i love that. climbing stairs takes you upward and forward even if it is difficult. 

and let's be honest. stairs are ridiculously difficult for leah. we have 15 of them in our house and we spend a loooooooooot of time walking up and down them each day. some days it tries my patience. other days i relish in her small victories. there are days when i have to pull her up with my arms, lift her leg to get her started or stand directly behind her for some major support. but other days she just goes. recently she began to climb the last step all on her own - not even using my hand. and that, to me, is huge.

we met with 30 or so other girls {and one boy!} and their families, all wearing purple, and climbed the steps at harvard medical in boston. firefighters flanked our sides as we climbed, offering assistance to those who needed it. 
miss ribbons didn't need it that day. she had one hand in her dad's and one in mine and up and away she went...giggling the entire time. she had everyone in earshot smiling.

it was a simple thing - climbing a few stairs - and yet such a great moment. it was great to be surrounded by so many people choosing not to wallow in the weaknesses and struggles of our girls, but to celebrate their strengths. 
 we even got to see dr. mary from california who was in town for a short 24 hours. we love fairy mary!!

a bonus: on our way home we stocked up on goods from trader joe's and while stuck in traffic, we were basically parked by the finish line for the boston marathon. and that just made me happy. 


lmackay32 said...

What an amazing event - Go Leah!

ed and kelli said...

i just welled up with happy tears. i love seeing the people smiling at the top, the firefighters gleaming at bean, and the you and ryan being proud parents. i love miss bean and i hope that i never come across as treating her different because i know how great a 4 year old she is and how much she really can do despite set backs and she is one a.m.a.z.i.n.g. bean. love her to death!

Ann Marie said...

Oh my, Leah is getting so big! I love the pigtails. I think we need to do a Blue Sky Girls even here next year. I love seeing the photos of all the girls making their way up the stairs:) Way to go, Leah!

carolee said...

I love this. I love the celebration of strength and courage. And since my dear dad was a firefighter, seeing those men waiting to serve those sweet girls just brought me to tears.

Shannon said...

Miss Ribbons, you melt my heart.

Miss Maren, you sure are beautiful.