Sunday, September 25, 2011

One Week Out

I cried my way through last Monday. HUGE hiccuping sobs that seemed to come out of nowhere even though I knew their origin exactly.

I wanted to go back. I wanted to be where I was seen and heard and felt in a way that every moment felt like home. The hours with the boys at school felt so lonely it was excruciating. The week seemed to crawl by with no amazing staff to make my meals, no teachers to guide me to create works of art, no friends by the fire at the end of the day to ask me what I'd done or how I felt. Simply back to the grind, making lunches; helping with homework; driving to soccer practice, music lessons, the orthodontist; permission slips; Parent Night; laundry; grocery shopping; the usual day to day.

But then Friday night I attended a fundraiser for Girl Power 2 Cure in Washington, D.C. and I met some amazing families who are struggling with the loss of their beautiful daughters to Rett Syndrome: little girls who were born perfectly normal, but over time lost their voices, lost the use of their legs and their hands, began having trouble eating, having seizures. They are trapped inside their own bodies with NO WAY OUT. All tests and studies indicate that they are perfectly normal, and in fact in many cases, above average in intelligence. So it seems that they are completely aware of their plight. Worst disease ever. Robbed of life before they really started.

Disappearing slowly before their parents eyes. Horrible.


Instantly I regained perspective. It's easy to feel lonely or angry or scared or sad when we have experienced something as wonderful and sacred as Squam. But we got to experience it. That's the beauty. There are a lot of little girls out there, like Sarah, who would give anything to be able to walk the rocky paths, swim in the lake, talk and paint with their friends by their side. And so we'll go back again, even knowing we might flounder for a while when we return home, because those moments are so precious, so tender, so joy-filled that it would be worse not to get the chance to experience them at all.

Thank you to my friends who donated their beautiful artwork and some amazing items for the auction. Thank you to my friends and family who couldn't be there but who made monetary donations for the cause. And a special thank you to my family and friends who made the trip with me to be there on Friday night and who make my life a very special place to live.

I am blessed. And I know it.


Jamie said...

Oh, Amy.
Love you.

It's OK to be Different said...

Well put, Amy.

The Landmark said...

Well said Amy... thank you for asking me to be a part of it. xo Nella

melissa said...

thanks for putting things in perspective. love you....

Amy said...

You are an amazing woman. thank you for this.