Tuesday, March 20, 2012

tightrope walking

So the big weekend has come and gone.  Clinic all day Friday-we saw 5 girls plus had a few visitors that were in town for the Study.  It was a long but awesome day with great families.  Almost all the girls we saw had been born in the same year and at one point during some down time, the parents sat the girls in a circle-it was a special thing to witness. Once we said goodbye to the last family, we got busy setting up for the study the next morning-I left at 8pm in the pouring rain and treated myself to a delicious meal of McDonalds.  I was already tired.  You know you are done when you break down and head to McDonalds. 

The next day was kind of a blur...the main thing I remember was the strange feeling that exactly two years ago we were checking in at our first study appointment.  We knew a few families and had done lots of our own research and reaching out and felt pretty solid-but the feeling you get in that situation is so odd.  It's like this: this is so cool that all these families are here together for the same reason and they all get it and they all seem to be doing just fine and WHAT THE HELL AM I DOING HERE? IM NOT SUPPOSED TO BE HERE! THIS IS NOT MY LIFE!

There was a new family there Saturday morning.  New to the study and only 6 months since diagnosis. With a little one.  Younger than Avery was when we were pulled into this life.  I couldn't stop thinking about them-about how I saw so much of myself in the mom.  We spoke for a few minutes before they were called back and in just minutes we were crying.  It's the tightrope you walk as a special needs parent-always putting on a brave face while always trying not to cry. 

The day went by smoothly and at the end I got such a treat-I got to go to dinner with Paige (the founder of Katie's Clinic), Dr Jones (our medical director) and the research teams!  That means I got to sit at the same table with some of the finest minds in Rett research.  It was intensely cool to just chit chat with these people about anything and everything-except Rett syndrome.  I also got to try sweetbreads which I have never wanted to try but kind of loved. And I had a Basil Gimlet. YUM.

Sunday was less hectic and we had a lot of laughs.  There were some tears as well. The kind of tears when something just blows you away it is so awesome-like: Dr Jones's son has asked that all of his wedding gifts instead be donations to Katie's Clinic.  I mean....come on.  So amazing.  I looked around as we were cleaning up at all the volunteers that come out year after year-at the Nues family who made this all happen (and have done this TWELVE times already)-at the research teams that travel 8 weekends out of the year to do this study-at the security guards who were so affected by our girls-at the clinic staff who work so hard for all of us-and realize how phenomenal it all is.  I wanted to smile and cry at the same time.  tightrope.

I drove home that evening and just cried.  Sobbed.  Because I was exhausted.  But I was grateful, too.  I was inspired, hopeful and sad all at the same time. I was feeling equally a little guilty and lucky for Avery's abilities. I was also really proud of what we do at clinic and how far we have come as a family.  It's that constant push/pull of opposing feelings that keeps you from falling, I suppose.  It keeps you upright.  But still on that tightrope.


Anne Costello said...

Beautifully written, Erica! Thank you for this.


Stacy said...

Erica! This is so beautifully written and perfectly describes conflicted emotions. You're amazing! Xoxo

mj said...

love you. glad you wore the ruffles for good luck.