little bits of happy

happiness is finding lip balm you thought you'd lost- right pocket, pleather jacket, Burt's Bees original- thank you cold front!  

happiness is pig tails, looking for eggs with her daddy.  She had picked up Abe's basket as his was already full of eggs- smart cookie.

happiness is holding on to the ones you love... belonging to each other.  

happiness is words that remind you what you are working towards. 

what makes you happy? remember (self) that happiness is not ˆjustˆ the big things- what little thing about today made you happy? what will you do today to be happy tomorrow?

Brave

5 minute Friday

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.  

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

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.  

Dance

I'm telling myself that I will write more.  


I've changed the tag line.  I've made grandiose decisions and tossed them out before I'd even began- including, but not limited to 
1.  giving up diet pepsi
2.  giving up ice cream 
3.  giving up shopping
4. fixing my hair every day
5.  packing my lunch...


that's right, BIG goals (feel free to laugh) that are already forgotten because I realized that I, most likely, would be 3 hours in and out the window they'd go.  


I'm left with one that I'm holding on to.  I've decided that, every day, I will dance.  

Dancing- letting go, understanding that whatever it is that's happening right now can wait 15 minutes while we turn up the music and boogie. 

Realizing and accepting that life is hard.  That I can't make it easy.  That I can't always make it better.  

Understanding that I have so much to be thankful for.  That God has a plan.  

Knowing that our time here is short- that tomorrow is not guaranteed.  That we will lose people we love. 

Deciding that, while we are here, we will hold tight to each other.  

Will this dancing make life easy? no.  Will it make life make sense? no.  

Dancing will remind me that I am alive, that I have a body that moves and a heart that is beating and that I have a purpose- that God has a plan for me. We will dance... and you're welcome to join us.  

"Life may not be the party we hoped for, but while we're here we should dance."- author unknown

grief

"I carry you with me into the world, 

into the smell of rain & the words that dance between people & for me, it will always be this way, walking in the light, remembering being alive together"

life is huge and full of so many amazing, wonderful, terrible, unexplainable things.  this blog started off as brain candy, something for when I didn't want to really think.  but life, for better or worse, isn't made up of easy.  life is hard.  and sometimes life seems so full of awful there's no room for happy.  

this week we had a very hard thing-   one very hard, very terrible, unexplainable thing.  a momma and daddy lost a baby- a miracle baby they weren't ever sure they'd have to begin with, a baby that seemed so full of life and smiles and laughing and moving that he filled their every day with wonder.  and then, last week... it was diagnosed as a 'near SIDS', and today, sweet Carter B. went to heaven.  

Are you familiar with Brian Andreas and his story people?   The print above is called 'living memory'... and it's as close as I can come right now to a wish for this family.  a realization that sweet Carter is with them, for always.  

does it help? no.  words are pithy, ridiculous offerings, nothingness- 'my words are paper tigers, no match for the predators of pain inside her'  as the indigo girls have said.  

so tonight, for Jeff and Darcy, for all of those who have held a baby in your arms, then left them there in the hospital while you've gone home to weep, I pray for you.  I pray you find, in the days ahead, sweet memories that comfort you, and remind you that your baby will be with you, carried in your heart for always. 

5 minute friday

5 Minute Friday

Today the topic is Trust. 5 minutes, no editing... on Trust.

well- i've already erased the first 2 minutes- don't trust me, clearly I don't trust myself.
today i am worried and scared and praying for a momma and daddy and entire extended family who are clinging so tight to a tiny thread of hope that their precious baby will come back, that he will beat whatever the unimaginable odds are in cases like his, and be o.k.  i want to have hope and faith and trust that all will be well. i want to.  i'm praying. i'm trying to trust that God has a plan for this, that this is his plan.  maybe.  maybe i don't really believe that, maybe i think, right now, that life is kind of like rain drops on a window, moving, moving running into each other, becoming obliterated by the next drop, scattered by the wind. no control, no rhyme or reason, no answers.  scared. so scared.  trying to trust.

the gypsy mama who started the whole 5 minute friday business... go read her post