I just wish the village in this photo lived a little bit closer to me and L…

This past Sunday, friends and family from all over the country joined me and Lily – and countless other Rett families – to raise awareness, and funds for Rett Syndrome.  I kept telling people this was like the wedding reception I never had.  Except it wasn’t a wedding reception.  And we came together for something I wish never existed. But wow was I glad we came together.  There was so much love.  So much laughter.  So much acceptance.

I was overwhelmed.  Lily was overwhelmed.  We both cried that day.  For different reasons. Though L loves the outdoors (you should see how she stares up at the leaves on the trees during our evening walks), I think she didn’t love the crowds.  And wow, our family is a crowd.  So she needed a lot of consoling throughout the walk.  She cried a bit.  And sometimes, when she’s overwhelmed, she falls asleep.

For me, the tears came from seeing all those Rett sweeties, knowing full well the struggles that these girls, and their families go through, the fears that I have for Lily’s future, the loss of what I thought Lily’s life would be like.  But there were equal amounts happy tears – family reunion!  There were people there that I hadn’t seen in YEARS.  People who flew in from Florida, drove up to 6 hours to be there.  For me.  For Lily.  For us.

Thank you all.

Sending love,

C and L

It’s my party and I’ll sleep if I want to.

Team Lily NJ Strollathon 2014 – Top Fundraisers!!