the other people in the bar last night may have thought we were old friends reuniting after many years apart. big smiles and big hugs. then deep conversation and lots of laughs. teary eyes here and there. neither of us noticing much else around us-so focused on the others' words.
those people would be only partially right.
see, we have known each other for a while. but we had never met. not till last night.
several years ago we "met" on a online message board for moms with "delayed darlings". her daughter is a couple years younger than Avery. she had read my posts about our testing and journey towards a diagnosis. I read her struggles and symptoms. her daughter had also been tested for rett but it was negative. but still we just clicked-followed each others blogs, then made our way to facebook friends and last year her daughter was diagnosed with a variant of Rett called FOXG1.
this past April she joined team rett and ran the boston marathon to raise money for the rett syndrome association of Massachusetts. she so inspired me. it was seeing her pictures on facebook from race day that made me say i want to do that too. i knew she had really challenged herself and that it would be a big challenge for me as well. we messaged each other about my interest, i tried to convince her to do it again (no luck). and then last week she sent me the best message of all: she was coming to CA and would be visiting her brother just about an hour away and could we meet?
So that was us last night-a couple of "old pals" that had never met. but to any outside observer we must have known each other our whole lives. and in a way we have. it is one of the shiniest silver linings of this life. here we are two moms that live on opposite sides of the country brought together by our daughters disorders. it is just amazing that we likely would be friends anyway, but if it hadnt been for Rett, we wouldnt even know the other existed.
we literally talked for over 4 hours straight. we shared a delicious dinner (that she sweetly treated me to) and even got hit on by some very drunk men. it was late and it was a work night (for me) so we called it-but i really didnt want to go-wasnt even close to being ready to leave that conversation with someone i know so little about and know so well. these experiences are what keep us going. knowing we are not alone and that we might inspire those that inspire us. i feel really lucky to know what that feels like.
i can't wait till next time.