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....