Wednesday, June 20, 2012

that dreaded tightrope

Im walking it again. That dreaded tightrope. Here I sit, after doing piles of laundry, crossing off lists and beginning to pack. Im packing for New Orleans.  Tomorrow I leave for the 7th World Rett Syndrome Congress-which happens only every four years and this year is to coincide with the IRSF Family Conference (which is annual-this will be my third).  It is something I have looked forward to every year since our diagnosis.

This means I get to see so many people I never see in real life-or only once a year. It means I get to meet moms and dads I only know from cyperspace. It means I get to sit in the same rooms as the most well known and well versed researchers, scientists and physicians.  It means I will be surrounded with understanding and love and support. It means I will cry and laugh and give out numerous hugs.  It means I will learn a lot and feel a renewed hope.

It also means that my daughter has Rett syndrome.

Im so excited to get to attend.  I just wish I didnt have to.  Im lucky that I will be participating as both a representative of Katie's Clinic and IRSF.  But I still kind of wish I didnt know what either of those were.  If I think about it too much, I cry.  But then I think how wonderful it will be and I smile.

So here I am on that tightrope, trying not to fall one way or the other....

1 comment:

Anonymous said...

Erica, you have surpassed yourself with this one. The dichotomy of this life is truly mind blowing isn't it? I hope New Orleans gives you much much more than you can expect or imagine...sure wish I was going to be there to give you a hug in person!!! Blog on baby, blog on!!!!!