Tuesday, July 2, 2013

this is the place...

i just spent five days surrounded by people who get it. 
it was fantastic, of course. it always is. always.
im back home and im left with so many feelings.
hope and gratitude top the list 
im grateful.
for the moms and the dads that traveled from far and wide (England, Canada, Alabama, California, Wisconsin) to attend conference to lean on others and to be leaned on
for the staff and volunteers at IRSF for dedicating days and weeks and months planning our sessions and our days and nights
for the researchers, nurses, geneticists, neurologists and therapists who CHOSE this as their path in life (rett fell in our laps against our will and they actually sought it out)
for the many new families that bravely showed up with a smile on their face trying to hide that subtle fear behind their eyes that seems so familiar
for the moms I have bonded with like no other
for the dads, the grandparents, the aunts and uncles
for the siblings that shared their deepest thoughts
but mostly for the girls (and boys) who smile and arent afraid and fight everyday.

and so we fight. we stand tall, we learn, we take notes, we share stories, we laugh and we cry
we can finally breathe and relax and share knowing smiles and "me too"'s and "i know what you mean!"'s.
and we go back home on planes and in cars and through delays and airport mishaps
but we do it with hope


for a day that our girls can move their bodies with ease
for the moment when a scream becomes a word
when the seizures wane
when the breathing becomes regular
when they can taste their favorite food

we are so close because of all of this.
this is the place for hope.

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