Friday, March 16, 2012


Brave- working on it.  Feel like it's trial by fire.  Singing Kelly Clarkson 'what doesn't kill you makes you stronger' while scooping poop out of the tub.  Laughing ( other option is crying) through the IQ test because I am brave enough to know that this number, these results, these 8 correct answers to the ENTIRE BATTERY do not define my son. 

 Understanding that I HAVE TO/WANT TO/NEED TO to be present and involved in the bows and arrows and mud and worms and childhood, and that if we don't have so much money, we'll make it work. We will be Brave.  

Brave enough to love past the fears of another childhood and possible entire life that may have more time spent in speech/occupational/physical therapy then dance and gymnastics and mud pies.  Brave enough to know that there's a lot more time and neurological development that can occur that may make these fears laughable.  

Brave enough to plan and hope and dream and be happy.  windows down, radio up.... brave enough.  

Thursday, March 15, 2012

Cheap Thrills #12

Cheap Thrills #12
  Blue Shrug, $19.00, Maurices, sale + coupon.
  Black, I Mean Serious Business, Dress- $14.99 Macy's, super clearance + coupon
 Tights- $14.99, Target, the most I'll ever pay for stockings- these are the 'assets'/cheap spankx brand and once they're on they DON'T MOVE... didn't want to be hiking them up all day :-)  
 Storm Trooper Boots- $39.99- Von Maur, clearance shoe room * my happy place*
Standing with Congressman Harper- who has a son Livingston, who is 22 and has Fragile X (and going to an amazing college program for young adults with special needs!!!)- another priceless memory!  
Total Price $88.97

Wednesday, March 14, 2012

Went!! Advocacy Day update

I went to Washington D.C. for Fragile X Advocacy Day-  It was wonderful.  We made a difference, and I will go again.  Promise.

 I left late-getting in one more day of work... not the best plan as I was SOOOO excited and could barely focus on work, work, work/think, think, think/plan, plan, plan what with all the last minute details and 'what will I say' 'what's she really like'  and 'did I pack my deodorant?' flying around in my head.

I met lots and lots of people. Cool people.  People who know FX.   People who like boots :-)  People who have lived inside my FB and listserv world, who I, really & truly (and a bit embarrassingly) know a whole awful lot about- even though I  had never heard their voice or hugged them, or grabbed their elbow (something I do??uh-huh).

I met so many amazing congressional Aides... and some pretty cool elected officials as well. I cried... the first visit all I said was "I'm Amy, Abe's mom"... and then tears, and head shaking as I tried to make them stop but couldn't - so I just sat back and tried not to hiccup too loudly while the 5 other advocates expressed our wants and needs and hopes for the future.

Pardon the fuzzy pics... didn't want to lug a big camera around.

Meeting number 2- I spoke... don't know what I said, hope they could understand as I had a lump the size of China in my throat... I think I mentioned that Abe is 7 and loves to splash in the water and eat cheese nips.

Meeting number 3- jumped in feet first, found my ovaries of steel ( or platinum- bling bling) and spoke and smiled and laughed as we held our meeting in a caged supply closet- formally known as 'the board room'.

By the time meeting number 8 rolled around- just Dr. EBK and I- we were seasoned vets- covered all points, laughed and joked, agreed to disagree with my representative's plan regarding appropriations, and established a good relationship that will, hopefully, yield fruit for years to come.
Someday I hope that Bj, Bo and Aurelia can go with me to advocate.
and If Abe went... that'd be a whole lot of truth in those offices :-)  

I can't tell you how many times I had almost talked myself out of going... stress, work, anxiety about 50+ things that I can't change- but...  I had made resolutions and vows to myself that I wouldn't let 'what if' or 'eeeeeeek' hold me back... that I would go.
What have you promised?  What have you vowed to do?  Where will you go? 
 I can't wait to see your pictures.