Day 2 of 35

Thank goodness for this challenge- it was the only thing that got my lazy booty up tonight!

T-25 beta thanks to my good friend Holly- she's a serious beach body momma!  

It was a busy day here in our little town-  my mom is home and doing well, Abe cuddled her up and didn't want to get too far from her side.  Bo had birthday parties, play dates, and neighborhood fun with all of the folks in and around for graduation parties!  Aurelia had her first t-ball game and the daddy daughter dance.  

FREEZING COLD!  ok, not really, but in the 40's so we had layers on layers with our t-ball shirt over the sweatshirt and winter coat! You'll notice we are no. where. near. the field.  She did bat 1 time and ran the bases, otherwise we were happiest running and playing with rocks, walking the top bleacher, etc.  We're all good with that- bit by bit she'll get there :-)  

Look at these two- baby girl LOVES her daddy! 

They went out to eat with a few other daddies and daughters, then hokey pokeyed the night away!  

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perfect. 

day 1 of ... um, 35!

Yes.  math.  not my thing- so this is a challenge with 5 weeks... 5x7 is 35.  Maybe I was giving myself a day off each week when I went with 30 days <--- lying. brain. tired. forgot about Mondays??? any who- here's to day 1!!!! And i forgot to take a picture, so here's one from 2 weeks ago that i had taken for a different fitness challenge--- ridiculous, clearly I'm off my sweaty selfie game!!

Ran.  it was cold, then it was hot, then I was sweating like crazy, then it was raining and raining and raining.  I was glad i had on my long sleeve shirt for the run! Who would have thought we'd be at 43 degrees in MAY? and my hips- I've got to figure out a great stretching routine!! Ever since we ran for #abesarmy I've been even slower than usual, and that's saying something. because i'm slow... reallllyy slow.  

We watched Rio- Abe stayed in the theatre for over an hour!! The seats rocked and reclined and gave him some great sensory input, between that and the bucket of popcorn (his favorite food in the world) that he DIDN'T eat (WHAT???) but sifted through, we're calling the entire night a success! 

see you for day 2!

Holding space

I love to read Momastery- Glennon points us in the right direction, feel free to go get lost over there for a little while.  I can't remember the exact post that she spoke about 'holding space' -  sometimes when life is too hard, when we feel like we can't really show up- we simply ask those who love us to hold  space for us. to think of us and send us strength and love. We'll be back. Thank you for holding space for me.

image via monastery board on pinterest

So- I'm back to my blog, not on the beach as planned, but in a hospital. And that's ok.  Nothing life threatening, nothing that requires any more tears than were shed in that initial fear and worry.  My sweet family that is here, truly believes I should GO! pack my bag and  be at the beach... they say "are you just going to sit here today??" "do you want to take a break? go shopping?"  <---- they know my weakness ;-)  but I'm ok here- I'm ok simply to sit and to physically hold space with  her.  to be in this room and ask the doctors questions and surf pinterest , catch up on blogs i love and so on. to be present and at peace with where we are right now.

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Not surprisingly, all of this has made me evaluate and  re-evaluate where I am in life, where I want to go, what I picture my life looking like in 1 year, 5 years, 20 years. Could someone find my bathrobe and comfy pants if they needed to pack my hospital bag?   Will I ever have a dining room table that's not covered in piles of folded laundry unless  I know   someone is coming over??

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So- because I like these crazy challenges- i'm giving myself one.  

5 weeks before we leave for the beach.

30 days

30 days of exercise and blogging

anything else is just gravy. 

xo

Advocacy Day, 2014

For the second time in my life, I was fortunate enough to head to DC to speak to our Senators and Congressmen and women about Fragile X Syndrome.  I know it's been forever since I've blogged, feel free to go check it out if you need a refresher! For Abe- it means he doesn't speak... not even a consonant. Cognitive impairment, sensory processing disorder, anxiety. oh the anxiety!!!!

165+ advocates from across the country traveled to DC to speak to their representatives about funding for bimolecular research- the CDC, NIH, and DOD. We have 'asks' that focus on continued streamlining of the monies spent on FX and Autism- a collective goal, collective funds. We are sooooo close to passing the ABLE act, so awesome to say that our congressmen and women have ALL signed as co-sponsors! 

Pretty amazing group, huh?? And the self advocates... I don't think I can truly tell you what it means for me to hear some of these young men and women speak. In my momma's heart I wonder- is this what Abe thinks? What he feels?  What he would say if he could find his voice??

Here's a group of us mommas with Nick- who has FX! He's amazing.  When we all went out for dinner, the siblings and younger adults went one way while we headed the other- Nick ordered a chocolate martini. He said he'd always wanted one and had told his mom that he was going to get one in DC! He said he 'loved it!' but didn't think he'd order it again :-)

Here are Holly and I with Representative Greg Harper- our Fragile X Champion! Congressman Harper has a son with FX- who attends college at Mississippi State, pretty cool! 

Our Fantastic Dr- EBK, a serious powerhouse in the FX world!  It's always fun to attend AD with her... 

Our 'ROLLLLLLEEERRRR COOOOOAAAASSSSTTTTER' shot on the underground senate tram... that little baby goes FAST, at least 5 mph ;-)

A pic with my representative Aaron Schock--- Love the Abraham Lincoln 'photo bomb' in the back!!! I love my Abraham sightings!!! 

While we were in DC the students at Le Roy High School were doing there part here at home-  Spread the word to end the word!!   Did you take the pledge?!?  

You go- you talk about your babies, you talk about your babies, all I wanted to do was get HOME to my babies!! 

He didn't want to look at the camera, he just wanted to give me kisses- I'll take it! The reason I go, one of the reasons I'm so ready to come home! 

Friends- could you pray for me please? 

and I will pray for you. 

xo 

wearing

i love the Pleated Poppy What I wore Wednesday posts. 

Love them.  

Every week I think- I'll take some pictures this week! I'll post! I'll link up :-)

Pictures of myself usually wind up making me feel like this

a little bit crazy :-) 

I start with good intentions... and a toy filled room

and an adorable daughter:-)

 and it quickly escalates to this

:-)moma momma mooooooooommmmmaaaaaa

Every day I wear a black shirt of some kind and a dark pair of trousers or skirt.  work.  

most days after work I look something like this

blurry and sweaty and what not- Love the Old Navy workout gear! 

This week so far I've done Zumba once, P90X once, butts and guts once, and taken a walk- not BAD at ALL :-) 

life has been full of sweet- and i'm focused again on finding it! here are a few of my favorites from ye olde Pinterest -

yes- my Abraham obsession is showing! 

and a gentle reminder to my self-

  

xo 

go on girl!

HA-Ppy Monday :-)

or whatever <---- don't get surly on me just because I have a vanilla chai latte sitting here at my elbow while I type, and it makes me all giddy and smiley and positively positive. ahhhhh

We are just a few days home from our annual Michigan trip ( crazy grammar, going with it).
I miss the beach.  

I miss the wake up, lazy breakfast, beach.... beach.  

Bo- non stop!!! he chased seagulls, built trenches,  shot his bow and arrow at fish/weeds/sandpiles... swam, swam, swam!!

Baby girl- all about the water, the dunes, the BIRDS!!! She tried her best to fill that lake back up with sand, one scoop at a time :-) 

Big Boy in his happy place.  Water for days- pouring and scooping, snack, repeat.  sugar.  

 

now don't be thinking it was a warm tropical vacation... it was COLD!!! really cold.  So yeah, sometimes the husband and I wore our sweats... while our kids frolicked in the water- OY!! they went down fully clothed, there just was NO way on God's green earth that they were staying out of the water!!   Polar Bear Club members in the making :-)

We took advantage of the cooler weather and roasted s'mores in our fireplace most every night. and we ate a LOT of ice cream.  I think our final count was 15 different flavors that we had tried throughout the trip- NOM!! My favorite was possibly utter-nutsense- a rich dark chocolate with chocolate covered pecans.  Or maybe it was CowCoNut!! Coconut ice cream with pecan pieces.... or maybe the aMOOse-mint- mint ice cream with chocolate covered mini reeces cups!! oh baby! 

Always good to go, always good to come home

(it's a periscope :-))

swinging machine! 

so happy to be back amongst her plants.  

xo

here

 here and gone.  

most of the time, whether I'm blogging or not, we roll from day to day- Ups and downs all part of the flow.  

Focusing on the positive. 

 Every once in a while this life seems far too big, far too overwhelming, far too full of GRIEF to attempt to sit and type happily away- la dah di, la dah dum.  Unless you lived inside my head (or, bless his heart, you are the husband who has no choice in the matter and has to hear it ALL) , I don't imagine you'd ever know it. I work pretty hard at keeping upbeat and happy.  a smile on my face and a soft, easy voice.  

 so.  

 so I go MIA from what I can... real life never, cyber life yes indeed! 

Then, when I'm ready, when I can stop 'just surviving' and move forward... I come  back to the blog.  

I'm happy to say I kept exercising :-)  and eating ice cream :-) and that we raised a BOAT LOAD of Fragile X Awareness!! 

over 250 people that we knew wore green on July 22nd in Honor and Support of Abraham !!!! 250!!! 2 different High school football teams and their coaching staffs, ER Nurses and support personal,  Students and Teachers at the elementary school, Nursing Students, Families ALL OVER the WORLD!!! it was amazing :-) 

my Zumba group! 

a collage that my sweet friend put together of the last 30 that she saw :-) 

my brother :-)  someday I'll squat like that... not with that much weight, for pete's sake, but like... i'll squat :-) 

the husband and his football team- see Bodie?? 

our family :-)  

If I had to summarize FX in just a few short phrases, I think I'd like you to know that it's caused by an unstable repeat on the X Chromosome of the DNA building blocks CGG.  This shuts of production of the FMR1 protein... and this affects EVERYTHING- gross motor, fine motor, speech and language, cognition, sensory processing, connective tissues, anxiety regulation... EVERYTHING.  Some people are really affected.  Some are not.  My Abe is really, truly, seriously affected.  No words- no consonants.  high motor- high anxiety. moving, flapping, rocking, twirling.  FX is the leading known genetic cause of autism.  FX is genetic... I'm a carrier.  I have a pre-mutation of this unstable repeat on my X chromosome, and in each generation it expands.  I have 89 repeats- Abe has over 200- anything over 200 repeats of the CGG repeats without  *** new information!!!*** AGG repeats leads to  Fragile X.  I have 2 X chromosomes- one affected, one not.  Abe received my affected X, Bodie received my unaffected X.  No one in my family knew about FX until we received Abe's diagnosis.  

crazy business.  

so, lovey lovies.  pardon the disappearance- it'll most likely happen again, but that's ok because

 ---->

thankgoodness :-) 

xo 

linking up with Molly  for Funday Monday