We hosted our first ever Walk for Williams today and despite a discouraging weather forecast, a locked facility door with no response from management (thanks Uncle Chuck for being an amazing lock pick) that caused a massive delay getting setup we had an awesome event. The energy at our walk was just magic. We have mounds of people to thank for working to their limits and jumping in with great enthusiasm. And once we’ve recovered and my mind feels clear enough to capture it all I can’t wait to share. But meanwhile, because it’s the day of our walk and we have so many Team Norah supporters out of town here in the US and England. I wanted to share a snipit of her story from our “Meet Norah” poster. This is very simply why we walk.
Fit All In
I watch my daughter, Norah, every day get into EVERYTHING. I’m not going to lie, it drives me nuts sometimes *cough (often). It’s who she is. All in. Norah doesn’t just examine an item; she devours it. She doesn’t just hear music; she consumes it with her whole being. She doesn’t just hear your feelings; she owns them with you. She doesn’t just want to say “Hi. How are you?”; Norah wants to put you in her pocket and take you home.
Doesn’t this sound like an amazing way to be and live? It does. But when you see a person exist like our Norah does it’s not what you expect. Most of us don’t live this way and if/when we try we find that it leaves us quite vulnerable and raw. Because to live this way means you will tear things apart that other people want intact. It means any song anywhere will stop you in your tracks and make you do any one or combination of these things: be still and mesmerized, dance, sing, cry, scream, say “stop” or beg for “more”. It means that when
someone anyone else is upset you will break down…no.matter.where.you.are. It means when someone anyone else is overjoyed THAT will consume you too, perhaps even physically…no.matter.where.you.are. It means you will want nothing more than to belong even though your all-inedness will make it nearly impossible for you to fit in.
Norah has Williams syndrome (WS) and she, like most other people with WS seems programmed to live “all in”. I am jealous. Until I think of the scrutiny she will face in a society who is programmed to “tone it down” and “fit in”. This is what brings us to our quest for awareness about Norah’s rare genetic condition. We know that education and understanding are necessary for tolerance, then acceptance, then belonging for EACH/ALL OF US. Norah has so much to teach us about living with our whole hearts if we can lean in to the discomfort of “different”. When we connect with and learn from people who look, act and live in ways that are unfamiliar to us we grow. And when we do this our children do this. And as individuals we live more whole-heartedly. And therefore as a society whole-heartedness becomes the norm. We evolve.
If this seems like a tall order from a small awareness event then dig deep. The WS spirit reminds us that living “all in” means embracing each moment, good, bad, joyful, sad, scary, uplifting or any combination we face. And just walking through it as we are.
Joshua (24, WS) and Norah (3. WS) at our Walk for Williams.