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. 

Saturday, November 29, 2014

thanksgiving and the blues

we had another fabulous thanksgiving.  food for days, great wine and our fabulous family.  we hosted reds grandmother (Franny), his parents, his two brothers plus their wives and two nieces. we were just missing his sister and her family, and Barb of course.
i spent all day in the kitchen which is fine with me.  it was a relaxing morning.  then at 3 everyone started showing up.  it was a gorgeous sunny 65 degree california day and we got to spend some time outside having yummy apps and playing catch. i got to speak to my 94 year old grandmother and we laughed so much about how she could have raised such a bossy daughter (my mom). im so thankful to still have her in my life and for her to still be so sharp.  she is wonderful.
our dinner was awesome, even though i totally butchered the potatoes (turns out you have to mash them when they are piping hot!).  Franny took on the gravy and did an amazing job on it.  i love having my house filled with family.  Avery does too.  she is like her mommy that way-we love a party.  especially with people we are comfortable with and love. we all went around and said something nice about the person to our right and it was beautiful.  there were laughs and tears and hugs.
slowly, kids fell asleep and people left.  Sarah and MT stayed the night and I spent the next day (almost all of it) cleaning dishes (i dont do dishes until company has left!) and listening to holiday music.  i was full of holiday spirit.
then this morning, Nolan asked me to charge an old iPhone.  when it came on he played around with it and then brought it to me asking how to get out of the voice memo screen.  first i had to listen to them.  they were all from 2010. most were avery screaming and crying.  some were of her laughing and babbling.  then i heard the one that got me.  you can hear me in the background asking her to say "Daddy" and after a few tries, she says it.  so clearly.  i had forgotten what her voice sounded like and I burst into tears. i brought it to let Red listen and he got choked up as well and said he didnt want to hear it again-too hard. i posted it on FB and got so many sweet comments like "the day will come again when you hear it again!" and i know that is true but today has just been tough.
Red took Nolan ice skating with a buddy and Avery and I stayed home. I took her on an errand and took the long way home to just waste time.  i drove near the movie theater which was a big mistake.  families all together walking around downtown, going to the movies-things that are not impossible for us (well, maybe going to the movies) but are very difficult with her yelling. it makes me sad and i remember that the holidays are always a tough time for me.  even though i look forward to them so so much, it creeps up on me that it just isnt the same without your own parents and and a kid who cant feed herself or open presents. but then i go back to the beginning of this post and i have so much to be thankful for. and a future that is truly so bright.

Tuesday, November 18, 2014

blog fog

so much to share. but i have been in a fog of sorts.  from halloween to clinical trials and having to hire a new sitter/behavioral therapist my mind has been in a fog of sorts.

im hopeful that Im coming out of that fog just in time for the holidays.

halloween was killer.  way killer.  rad.  we trick or treated with some new-ish friends -parents of Nolans school buds just one hood over. we had a blast.  the kids did too.  its all about the kids right?  i cant tell you how many moms I talked to after halloween who remarked that it was their all time favorite holiday and I wholeheartedly agree! it took us some time to get there-but once we got bold a few years ago and took Avery with us and it worked, everything changed. We had such a great night and are so thankful for new friends and our awesome sitter Stephanie (who came trick or treating with us and who when I asked her if she might want to come her response was omg, id love to!)

we went to countless houses.  people just "got" Avery when we had to encourage her to grab some candy and when she missed people said "oh good try -try again!" and there was excitement and care in their voices.  Nolan was running ahead as usual and we tried our best to keep up with the group.  At one point i hear a small voice in the dark "I just saw Avery!" and another: "you did?  I didnt know she was trick or treating?!"  and a third: "of COURSE she is!!!!" i stopped in my tracks. I said are you guys talking about Avery Robertson!?  and they said yeah! It was just some typical third graders that knew her from her tiny bit of mainstreaming.  No big deal (HUGE deal). their mom comes over and say hi i emailed you last year remember?  yes, I do.  good people.

After trick or treating we went back to our friends place and then over to a newish neighbor's party.  Turned out their daughter also knew avery and the smile on her face when I asked her about my girl was nothing short of extraordinary.  her mom and I talked and she knew a lot about Avery too and we cried and we hugged.  amazing.  killer.  rad.

on november 5th i was invited to witness my friends colleen and jared renew their vows just on the even of their 15th wedding anniversary.  they have been through hell and back with rett and other life challenges and in their words it was a miracle they made it this far. about 8 of us stood on a cliff and saw true strength and true love make new promises to each other.  it was an honor to have been there. we ended the morning with fish tacos and good conversation. not a bad way to spend a wednesday.

just 6 days later big news hit the rett world. i sat at work in front of my computer waiting and watching for the news we heard would come.  trial news.  would it be good or bad?  we thought good for sure-but didnt know.  and then there it was. this LINK explains it.  basically it means that on Monday there was not a proven treatment for Rett and on Tuesday there was. I was flooded with emotions that are all coming back again as I type this.  All the Strollathons and marathons and lemonade stands and studies and clinics-all we have had a hand in-made this happen.  the families and girls that took part in this trial are my heroes. rettsyndrome.org and the scientists and the researchers and physicians and Neuren are all heroes to me.

No this drug is not yet approved by the FDA, no it has not been tested in the pediatric world yet but omg the hope that this trial provides. as i was reading the news, it dawned on me that we once again missed Avery's diagnosis day.  it had been two days earlier, the 9th.  i couldnt believe it. 5 years almost to the day of diagnosis and im reading there is a possible treatment?  mind blowing.  and all i could think about was that moment i shared with Larry Glass, CEO at Neuren when he said to me "not IF, WHEN."  and when is now.  it is NOW and the NEAR future.

I went straight to the bar after work alone, after trying to get anyone to meet up and failing.  I had a couple cocktails and then went home to pop the champagne.  Red was home by then and it was Stephanie's last day.  So we all had a glass.  I told Avery the news and she literally went weak in the knees. and then went down to the ground.  she gets it.  yes she does.

I ended the week with a double date with the awesome clinic Nurse Practitioner Shawna and her hubby on Thursday night and with a crazy chaotic clinic on Friday.  Got to end the day at a dinner in Walnut Creek with THREE neurologists, an RN and the Dr Mary Jones.  Not too shabby.

Oh and the sitter thing.  It is really hard to get a good one.  Especially after years of a great one.  And after a couple non starts and one failed hire, our new girl starts tomorrow.  cross your fingers.
but i feel the fog receding.

Wednesday, October 29, 2014

#notspeaking

there are only a couple days left in rett syndrome awareness month-and it is game 7 of the world series-and since I can only pace so much, i came here to keep myself busy.

this past weekend i went on my now annual trip to healdsburg for the healdsburg half marathon. this was my third time.  i only signed up for it in 2012 b/c it was the perfect halfway point between me and Boston and I still didnt know if I would get spot on team rett so i thought might as well do a half while i wait. i recruited some friends, we rented a house and we became team boston or bust. it was a good idea.  i trained well for it. i finished in 2:34:59 and was damn proud. the giants also happened to be playing in the WS that year as well and i have fantastic memories from that weekend. it was my first half, i was so nervous.  i didnt want to make it about fundraising but wanted a slight rett connection so a couple of us had shirts that had a little something about rett on the back.

we went back in 2013 this time as the rett warriors.  we had grand plans to dress like warriors (there is a costume contest) but they fell through.  so did my plans of beating my time the year before.  2:36:07 this time. by then I had been to boston, almost finished but didnt because of the situation, and wasnt as worried about time. we did get shirts made that said I run because she cant on the front and more about rett syndrome.org on the back.  but again, we had a great group of ladies, a great house and a fantastic time.  two years in a row laying out in the yard post race in the sun with bubbly and hot tub.  amazing.

this year we went again as the rett warriors. no shirts, no socks, no nothing.  but we did have the #notspeaking kits though. and on friday night, over wine, i explained the plan. i read this to them 
and they understood like they never could have before.  friends that have known avery since birth had lightbulbs go off. new friends were touched. and on race day we wore our stickers and when no one asked we still gave out cards.  we ran silently and there were tears shed. it brought us all closer to what it is like -even in only one aspect--to have rett. #wwyg?

Friday, October 17, 2014

be afraid...

the kids were off from school today and the day crept up on me which means no child care.  im literally counting down the moments till i get to leave and go to the office for a couple hours. nolan has a birthday party this afternoon and i realized that today was the only day to get a present for said birthday party. that means taking both kids to Target.

yikes.

so we packed up and went before lunch hoping it wouldnt be too packed and that we would get in and out quick.  once we go there I put avery into the cart, not the seat area the big area.  she is almost too big for that spot but today it worked.  we made our way to the toy section and after a million "mom, come here's" we end in the Lego aisle (just where I had wanted to start but Nolan had other ideas).  As we are moving our way down the aisle a woman looks at me and smiles and says Hi Im so and so and is this Avery? she explains that one of her daughters is in the class Avery is mainstreaming in this year and that she got the letter I sent in to go home with parents and its in her car right now and she read my blog and cried and cried.  she then went on to say that her daughters also have ieps and she knows the struggle and would i want to get together for coffee? umm, id love that I say.  i tell her to shoot me an email.  she says she was just on the phone and she saw Avery and had to stop to say hi.

i swear everytime i think "i hate people" something like this happens.  she changed my whole outlook and we actually had a decent and dare i say fun time at Target.

as we are headed back to the car, i see a woman stopped behind my car and then taking out her camera and taking a picture. and for a second i thought crap did I forget the placard? and then i realize she is taking a picture of the "october is rett syndrome awareness month" that is written on my back window.  we pass as she realizes this is my car.  she says is this your car?  i say yes it is!  she says my niece has rett syndrome-i am going to send this picture to my sister! she tells me who she is and I say i think we have spoken. i introduce her to the kids and she reaches over and sweetly touches avery on her shoulder, really looks and says hi to her.

i could have peed my pants.  it was a trip to target that was meant to be. and I almost didnt go because i was afraid.  but i recall a quote a wise friend recently shared: "be afraid, but do it anyway. live anyway!"