Friday, November 9, 2012


Today marks the three year anniversary of the day our lives were changed officially by Rett syndrome. 

Three years.

Half of Avery’s life.  Seems like a lifetime away. 

But, Diagnosis Day is a day we will never forget, much like anyone who is told "we have a name for what is causing your child's problems"-- the day gets time stamped in your memory.  

The 2nd anniversary was a little easier than the first and this year was a little easier than last but it still marks the day our lives were changed forever. 

So it was totally fitting that I spent the day at Katie's Clinic, where for nearly a year, I have been lucky enough to work.

It was perfect timing for me to welcome four new families to the clinic and get to also see one follow up patient. Im so inspired by these families and it helps me deal with our situation but helping them see that it will be ok. Im inspired by our clinic staff and volunteers that sacrifice so much of their own time for our families.  Im inspired by seeing three of the families today laughing and bonding over lunch.

Im inspired.

As I walked in the door tonight, I could hear Avery screaming/yelling and I thought, oh man, here we go.  But then she was quiet. And then we danced in her room.  And she smiled and didnt yell.  And didnt yell some more.  And I was inspired.

I am inspired.

1 comment:

Ann Marie said...

I'm glad your d-days are getting easier and that you were inspired because your work at Katie's Clinic inspires so many of us. Hopefully, after a treatment comes, we'll have lots of happy dates and milestones to remember.