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Tuesday, July 7, 2015

nine

isn't it funny that we don't count the day of our birth as our first birth day? that we wait one whole year before we really celebrate? shouldn't the actual birth day count?

i remember so well the night before-as much as the day of. i have written about it almost every year. the food I ate, the forced contractions on the couch (that we still own and is still hanging in there) and trying to sleep that night knowing my life would change forever the next day.

nine is not my favorite number.  i never liked odd numbers. avery will be nine tomorrow.  she was diagnosed with rett syndrome on the ninth of November. nine is divisible by 3 and I hate three as well.  i like things even. because i said so.

so of course it makes sense that I'm likely as excited tonight as I was back in 2006 the night before we met our goose. i was hopeful and giddy and excited and nervous and happy.

i cried so much as she turned 4-her first birthday with the rett diagnosis.  i cried when she turned five-and not because she was going to kindergarten and growing up like she was supposed to. i think i stopped crying at her birthday last year.

but this year?  it is so much better.
Avery has friends.
We are having a party and inviting her friends.
and i could cry over that.
except I'm too happy.
we have had parties for her with OUR friends.  and our family.  but never one with HER friends.
maybe it is just a few friends. not a ton.  but it counts.
her gift from us is tickets to Taylor Swift in August (fine it is a gift to me too).
she is so happy.
Rett be damned.
Nine.

Tuesday, April 21, 2015

to blog or not to blog

bear with me on this one. its been a while. 

i went to my second Hozier show last week.  it was amazing, more amazing than the first only because i was about 20 feet away this time and could see his every feature. i could see his fingers on the guitar and the sweat on his brow and the saliva jump from his mouth as he sang.  i could see every emotion. i could see how he swept his hair behind his ear and the gratitude he felt for his audience. 

know what else i could see? about 17 cell phones raised above the heads in front of me recording or instagramming or facebooking the entire show. 
i wanted to take pictures too.  and I did.  i took three.  but only one worked because my phone hates me*

but all the absent minded recording that was happening in front of me made me think.  it made me a little sad. ive written about this before.  about the theology class i took at GMU and the professor who said something very clever about how in sharing ones experiences we lose part of that experience. like the story a fisherman tells about the big fish he caught and how each time he tells it the fish is just that much bigger. it might make the story slightly more interesting for the listener but doesnt it make the story kind of suck for the teller? it does.  there is something about experiencing something and just keeping it for you. 

i swear to you the girl in front of me was literally yawning as she recorded songs from the show. Hozier is not yawn music-it is in the moment, emotional, beautifully written music. i urge you to see him live if you can (the opening band, well that is another story). but here was this girl recording it for recording sake so she could share it on her social media-but what did she get from it? what did she get from the show? did she feel the music, did she connect with the lyrics? i dont know. 

im reading a book called "all the light we cannot see" by anthony doerr (just this week it was awarded the pulitzer for literature) and it is fabulous. (i guarantee you i thought this BEFORE it won the pulitzer). anyway, there is this line in the book that has stuck with me “Open your eyes and see what you can with them before they close forever.” I know, right? 
deep.

oh, what is it that i am trying to say? if you know me you know I love social media.  i will make a case FOR facebook (or most kinds of social sharing) any day.  and im not going to stop using it anytime soon. its just that im taking stock lately.  of my life and of what i want to share-what i feel is important to share-what i need to really share. all this to say 
this is why i think its been a while. 

*i posted that pic.

Tuesday, January 13, 2015

a new year

it is hard to believe it has been nearly 6 weeks since I last posted here.  i have thought a lot about why...no time, the crazy of the holidays, that i dont feel like i need this place as much as i once did.  it is probably all of those things equally with a little bit of "things are kind of normal and good right now".

we had a great christmas and new years spent with family, old friends and new.  christmas eve was as usual very special and chaotic and just happy.  we celebrate here at our house as we have for the past who knows how many years. it is a nod to my parents-we always hosted christmas eve and my parents were always happy and there was a lot of laughing and great food and fun. it has been that way here at our cozy home for years and i love it. we have done many different meals but this year was the most fun i think.  cracked crab, ham, salad and many yummy apps. my kids have 4 cousins to join them and run around like animals and its just the best.

new years eve we spent with some newer friends in the neighborhood (ok, fine the neighborhood we WANT to be in).  more crab, yummy apps and lots of laughs. this past year has been a good one for friends.  holding on to the amazing friendships we have made over the last 10 years of our marriage (and 14 years of dating) and now getting to know some of the most down to earth and fun families through Nolan, kindergarten and also Avery.  It is so great to meet women at this age.  Even though I still feel like I might blow it and they will see through me and realize Im not as awesome as I want to be-Im comfortable knowing that the me they are meeting is really the true me.

we have taken Avery more places this year than ever.  she loves it.  we do too.  we took the kids to a japanese place here in town recently and it was a huge success.  Red took Avery outside once because she got a little loud and the manager came over to me and said "dont worry!  its ok!" -and he was right.  we ordered Nolan some ice cream and the waitress asked if she should bring two-we said one is fine.  She brought two anyway. Those tiny gestures are so huge to our family.  they give us the courage to get out and do it again.

We changed up Avery's meds early December.  She was weaned off Lexapro and started her on Buspar.  We have noticed a major change. She has her moments-but she is no where near as loud as she was.  This has made so many things so much easier for us as a family.  I took the kids to the grocery store this evening and she yelled a couple times but other than that, I looked just like every other mom with two rowdy kids in tow.  in fact, Nolan was way more obnoxious that Avery was.

I have started calling her "sweet sweet".  i dont know when that started, but i know its because im seeing more of my sweet, smiley girl.  there are more moments of me looking at her with a smile and reaching over to touch her face now-compared to before, in the dark days when i was gritting my teeth and taking her to her room.

more seasoned moms had told me this day would come-and while it is still really hard and trying and stressful-we are good right now.

Nolan is giving us a run for our money. still.  it has been wonderful to see his academic growth since september.  he can sort of read.  he can do some math.  but he cannot listen, is willful and spirited.  its hard right now, but i think he will turn out just fine. (fingers crossed). he is equal parts wanting to help and pushing our buttons.  he loves his sissy and i love my Nolan and mom time when it is quiet and snuggly and he says i love you mommy and i say love you nolan and i realize this wont last forever.

i didnt make any resolutions this year but I have given my self some goals. to just BE.  to GIVE more.  to be a better FRIEND, WIFE and MOM.   its a new year, indeed.