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Friday, October 5, 2012

i hate it, but...

I hate rett syndrome, but i love this life it has brought me.  sure i would give it up, give up anything to make my girl better.  but...
this week I got to conference call with some really cool/smart/dedicated people in the field.
today i got to participate in clinic once again (its my job but i still cant believe it).  i got to be around the most caring and fun people ever.  i got to be with families that are so strong.  going through bigger hardships than we are and still pushing.
tomorrow i will welcome about 50 families as they come to be seen as a part of a research study (avery included). and we will hug and visit and laugh.  and then on sunday, the strollathon.  what a day that will be.  i have been a part of raising nearly fifty thousand dollars this year.  last year we had a part in raising 36K, and the year before was 72K.  thats over 150 grand.  for research.  to cure rett.  that day is coming.  what a day that will be.  and I love that we will have had a small part in getting there.

1 comment:

mj said...

love it. you are one busy woman, but you amaze me. have the very best weekend ever. and don't forget to wear your ruffle shoes!