rettsyndrome.org

Image Map

Friday, September 28, 2012

yet another silver lining

the other people in the bar last night may have thought we were old friends reuniting after many years apart.  big smiles and big hugs.  then deep conversation and lots of laughs.  teary eyes here and there. neither of us noticing much else around us-so focused on the others' words.

those people would be only partially right.

see, we have known each other for a while.  but we had never met.  not till last night.

several years ago we "met" on a online message board for moms with "delayed darlings".  her daughter is a couple years younger than Avery.  she had read my posts about our testing and journey towards a diagnosis. I read her struggles and symptoms. her daughter had also been tested for rett but it was negative.  but still we just clicked-followed each others blogs, then made our way to facebook friends and last year her daughter was diagnosed with a variant of Rett called FOXG1.

this past April she joined team rett and ran the boston marathon to raise money for the rett syndrome association of Massachusetts. she so inspired me.  it was seeing her pictures on facebook from race day that made me say i want to do that too.  i knew she had really challenged herself and that it would be a big challenge for me as well.  we messaged each other about my interest, i tried to convince her to do it again (no luck).  and then last week she sent me the best message of all: she was coming to CA and would be visiting her brother just about an hour away and could we meet?

YES, please.

So that was us last night-a couple of "old pals" that had never met. but to any outside observer we must have known each other our whole lives.  and in a way we have.  it is one of the shiniest silver linings of this life.  here we are two moms that live on opposite sides of the country brought together by our daughters disorders.  it is just amazing that we likely would be friends anyway, but if it hadnt been for Rett, we wouldnt even know the other existed.

we literally talked for over 4 hours straight. we shared a delicious dinner (that she sweetly treated me to) and even got hit on by some very drunk men.  it was late and it was a work night (for me) so we called it-but i really didnt want to go-wasnt even close to being ready to leave that conversation with someone i know so little about and know so well.  these experiences are what keep us going.  knowing we are not alone and that we might inspire those that inspire us.  i feel really lucky to know what that feels like.

i can't wait till next time.

Monday, September 24, 2012

oh i dont know.

i promise i have some really good, really deep and coherent posts in here somewhere...just so much going on.

last monday i submitted the application for the boston marathon which made me so excited and so nervous that i wanted to throw up.
today i continued to box up the contents of my office so it will be packed and ready for the move this weekend.
next monday i move into a brand new office and start a new schedule (shifting my hours by 30 minutes in the morning so i can get to work on time)
and one monday after that i will be decompressing--sleeping in and relaxing and not doing much.
lots will happen in between.
and i cant really think that straight now.

it might be avery's new deep and very loud scream/yells that she lets rip about 20 times per minute.
or all the running im trying to squeeze in. or the never ending process of trying to get avery a speech device. or all the other little things that make up a day in the life of this mom.

but...things are moving along with the speech device.  and i just found out that a grant request i submitted came through for 25K for the clinic and i am kind of starting to like running. a little.



Saturday, September 15, 2012

challenging

i challenged myself today.  i went to a 10K, a trail run, alone. it was my first 10k and my first race in over 5 years.

i knew it would be "hilly".  i knew it would be tough. i did NOT know the first 1.5 miles would be uphill.  and rocky. and that by minute 2 i would be out of breath.

the map they had for the course said things like "uphill" and "roller coaster" and i got nervous.  they were announcing things like "watch out for rocks, tree roots and cracks", "try not to fall" and i got even more nervous.

then it started and i was soon left in the back of the pack.  actually just in the back. panting. wanting to turn around.  wishing i had signed up for the 5k. thinking about how much harder the half marathon will be in just 6 short weeks.

but then i thought about why im running.  im running so i can do the boston marathon IF i get a bib.  im running because avery can't. avery actually is able to run and we are lucky for that-but she will never run a race. so i think about that. and how hard it is for her on a daily basis just to communicate her most basic needs and  i push forward.

sure i walked a few times.  very briefly.

by mile 3, halfway in, i felt better.  i felt motivated. i was in my stride. i knew i wasnt last, i had even passed a couple people.

the last mile and a half was almost all downhill or flat.  i crushed that part.  was flying-almost fast enough to really get hurt on those rocks and roots.  but i made it.  it was a gorgeous run.  fog, sun, forest, mountains, views.  gorgeous.

some jerk guy who i totally had beat came out of nowhere and beat me to the finish line, but still there were about 10-15 people behind me. sure one was a 70 year old man but i wasnt last.

i felt great when it was over, i texted red and the kids to come pick me up and cooled down as i waited.
i could hear the results being announced and though i dont know my "official" time just yet-the winner in my age division (30-39) beat me by at least 20 minutes. probably some young 30 year old.

Friday, September 14, 2012

summer, here and gone

and just like that summer is over.  school is in full swing, fantasy football is as well.  im equally excited about both.

right now i am in the midst of the busiest time of my life.  the big rett study that katie's clinic hosts twice a year is back on the 6th and 7th of october-we have clinic on the 5th.  so i will be working from 9am on the 5th till about 6pm on the 7th. the study is both saturday and sunday and we are also holding the 3rd annual strollathon on the 7th.  oh and avery is IN the study and has her appointment on the 7th. its a nutty exhausting weekend.  i got a taste of what it takes to coordinate this weekend back in march. but we werent doing a strollathon then or any of the other cool extra stuff we will be doing in october.

i told a friend today "im so stressed out that im calm"-its strange but true.

i cant wait for the stroll to be over and the study to be over and feel that delicious satisfying exhaustion. i really love that feeling of having done something great and made it through unscathed. it is actually thrilling to be around so many amazing families and researchers and volunteers.  and as much as i might complain about how stressful it can be sometimes, i still feel really lucky to be doing all of this.

anyway-i need to get some rest because im running a 10k in the morning. my first. i hope i make it. i wanted to leave a few pictures from summer first before the holidays are all of a sudden here...
 me and the girls at gus and natalies wedding

 red and me at dinner the night before gus and natalies wedding

 the katies clinic table at FEASTival!



 it was a gorgeous day of wine tasting and feasting it forward!
 Avery's first day of 1st grade!

 Nolan's first movie at the theater!  he kept asking when it would be over!

 game ball-front row at the giants!

 first cold of the school year-6 days in

 nolan at the dentist!  

 breakfast at Starbucks 

adopting "zumba" who is now "oreo" from ARF (animal rescue foundation arf.net)