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Sunday, December 30, 2012

christmas eve (aka feliz navidad at the robertsons)

For the past several years we have hosted christmas eve at our tiny house.  Growing up my parents always hosted christmas eve and it is one tradition that I would love to keep going for my family.  So even with a small house and an ever expanding family (there are 5 grandkids now!) we still host.  I love it. It is such a special night to me, being surrounded by family and all the festive decor.  This year we had the usual group of Red's family which adds up to 10 adults and 3 kids! Plus me, Red and our kids.  Then we invited our closest friends Brian and Lee Ann, who have two kids.  Then Lee Ann's parents decided to visit from Boston-and her sister! Then Barb asked if her nephew could come too and I said why not!??  The more the merrier of course. This was when I decided that I would do the least work possible and get mexican food, serve margaritas and ask people to bring sides.  It was perfect. We moved some furniture, borrowed a huge table from Red's brother and his wife and made it work.  We sat 18 adults at 2 tables.  The kids had their own table but they thought it was more fun to make a fort with the tablecloth than actually eat. Barb and I had a guac-off.  We tied.  We had so many appetizers and so much food!  Before we sat down for dinner we got a huge surprise.  Santa stopped by!  His sleigh had broken down and he needed a battery!  He came in and gave the kids some candy and little gifts, talked to Nolan about Ulysses our Elf and then took his battery and was off.  Santa was played perfectly by Red's brother MT.  It was one of the many highlights of the night. The kids were just in awe.  Nolan thinks he "saved christmas" and will tell anyone who asks. 

We had a great dinner, then did our "yankee swap" with gifts under $15-they could be funny, inappropriate, useful anything really.  The first gift that was opened was the Richard Simmons sweating to the oldies DVD.  I picked batteries, but they got stolen and I ended up with a Hello Kitty Chia pet.  So much fun.  Nolan ended up with a bank shaped like a poop.  too much.  Then we played "left right enter" a dice game played with dollar bills.  Nolan won the first round ($54!) and we all chanted "put it in the poop!" which was hilarious but I guess you had to be there. 
I loved having my house full of people-all of whom I consider to be my family.  I just wish I had taken more pictures.  Christmas morning I heard Nolan run out to the tree and then run into our room where he exclaimed "santa didnt come!" Then he climbed in bed with us and went back to sleep. 
After we did presents at home we headed to Red's moms place and had more gifts there...along with a delicious breakfast.  The dinner at Kevin and Marthas with Reds cousins and other extended family. It was a wonderful couple of days.  And now it is over-just like that.  I swear it just goes by faster and faster. 

Feliz Navidad!

Nolan and his skateboard from Santa

Avery was having fun too on christmas morning!

one of the tables on christmas eve...see the mini sombreros?
our pretty tree with all the gifts ready


the other table...

fine, i like it.

Yeah I like running a little now.  Well maybe not actually the running part-but the challenge and the way it makes me feel. And the connections it has brought me. And the cool things it has allowed me to do.

Its kind of like rett syndrome.  No, really it is.  Because of Rett syndrome I am stronger, I have met amazing people who will be my friends for life and I have had the privilege to be a part of so many amazing things.

I once was really scared of rett syndrome and didnt want it to be part of my life.  Rett is hard.  Every day.  But, it challenges me in ways I never thought possible.  It forces me to be a better person, a different person than the one that I expected to be. I have to face it-every day-even on days when I think I just cant take any more rett, I have to take it. Some days I take it better than others and I am able to push farther and harder.  Other days I quit, crumble, complain. It is much the same with running.

Im not an athlete, or a joiner.  I never thought I would like running and I never thought I would like running with people.  When I decided to train for the marathon I thought I would do it on my own.  Learn it on my own. I now know that I cannot, and do not want to do that.  It is easier to run with someone. The other person sort of carries you, and you carry them without even knowing it.  I've gotten to the point now where I am able to sort of talk easily through a run and it makes it much more enjoyable.  Same with Rett syndrome.

Doing almost anything with a friend is better than without.  And I know I couldn't get through Rett syndrome or marathon training without my friends, all of you.

The Boston Marathon is quickly approaching.  I officially started on my training plan on 12/5 and have logged over 49 miles--plus some cross training (biking mostly totaling about 16 miles) in between.  It hasn't been easy.  It is cold and wet out there and we have been busy with the holidays.  But no excuses, it has to be done. Kind of like facing Rett every day.

My good friend Lee Ann who is joining me in Boston and is running for Avery surprised me with a Boston Marathon/Team Rett version of "the night before Christmas" when I received this in my inbox the other day.  Thank you Lee Ann!


'Twas the Day After Christmas...
`````````````````````````````````````````````````
And all through the place,
Our kids played with new toys- dolls dressed in lace.
I in my running gear, sitting on my duff,
Looking at all the piles of open gifts and stuff.

My thoughts were quite simple, they usually are.
I dreamed that Rett research will go really far.
We run for the girls, for the families with Rett.
For the hope that someday a cure will be met.

For the Robertson family- Red, Erica, Nolan and Avery-
For whom a a cure would be delicious and savory.
We run for these girls- some who can't walk
These silent angels, many can't talk

Red & Erica's daughter Aves with a big smile
Whom relatives want to hear talk once in a while
We know she in in there, intelligent, bright.
For Avery we run, for Avery we fight.

On Daniel, on Zenaida in the dark and snow.
Run like you can, run like you know.
On Erica, Kelly, Maren and more
Over Boston's Heartbreak Hill we will soar.

If Aves could talk, "Momma, Daddy" she'd share-
"Thanks for all the hugs, patience and care"
She'd also say "Wow Momma look at you run far!
Of you I'm so proud, most people'd need a car"

Our Garmins are poised, our music ready
Now comes the tough part- the training gets steady!
The training hurts a lot, it won't be easy.
Some days its raining, some days breezy.

We run because they can't, we run because we can.
We'll run Boston in April in front of many a fan.
These girls need our help to spread the word.
That with a cure they'd fly free like a bird.

We'll never give up trying- we'll find a way.
We will uncover a cure for Rett someday.
So we run from a place deep inside our heart.
It's in Hopkington, Mass that we will start.

On Daniel, on Zenaida in the dark and snow.
Run like you can, run like you know.
On Erica, Kelly, Maren and more
Over Boston's Heartbreak hill we will soar.



how cool is that?  

Tuesday, December 11, 2012

Tonight is one of those nights when the tears just come.  There is so much heartbreak in life. And when I stop and realize that there is so much more than my own, it is sometimes too much to take.  Im used to mine.  It is sort of getting comfortable here in my lap-- this living with rett syndrome--this life as a special needs mom that I never expected.

I realized today that my two favorite moments of the day are waking Avery up and watching her fall asleep.  Typically she wakes us up with her yelling but every now and then, like today, I have to rouse her from her quiet and calm sleep.  I hate to do it, knowing Im waking up all the stuff that drives us nuts-the teeth grinding, the hand wringing, the yelling.  But for those first few moments, before her brain switches into overdrive, she is smiling and sweet and quiet and there. This morning I couldn't help but just get in under her covers with her for that brief moment and whisper to her how much I love her. I do the same as the clonidine starts to take effect at night.  I brush her teeth while she lays in bed and let her chew on her toothbrush instead of grinding her teeth and watch her eyes get heavy and her hands stop moving.  It is so precious to see her still.  To see the girl she is supposed to be.  The one she would be without those 23 nucleotides missing on her damn mecp2 gene. I imagine the conversations we might have and I miss my daughter.

But she is here.  She is healthy.  She is alive and living it up.  She yells when she feels like it.  She trots around when she is happy and she laughs like no one I know.  It is the best laugh-hands down.  She faces what must be the most frustrating way to live with a smile nearly 100% of the time. Really.

We have lost too many girls this year to Rett and the complications that come along with it. Too many.
One just today.  A 30 year old woman who lived nearby.  I never met her or her family, but I didnt have to. I know them. I read the news and cried at my desk.  A month ago a 5 year old in Maryland passed away from Rett complications.  In September, an even younger little girl passed away after a tough battle in the hospital.    In August,  another.  Karly, whose blog you can read here-inspires me still-reminding me that my goose  is in there.  So in there.

It is hard and it is sad.  But she is here.  And she is happy and Im working on trying to be more like her.

Sunday, November 25, 2012

device trial


It has been a long process, trying to get a speech device for Avery.  We were very close to getting the Eco2 by PRC--the paperwork was submitted and everything was moving-then we found out about the Accent 1200.  PRC's newest device-smaller, lighter weight and with advanced eye gaze technology. We wanted to try it just to make sure it wasn't a better fit for Avery.  In September we got to try it once.  We spent a lot of time trying to get the thing to work right, get it calibrated etc, and even though we could see Avery was interested, we lost her due to making her wait too long.  Then we decided we needed to do a long term trial (one month) but that the Accent 1200 wasnt yet available for that b/c it was so new.  In late October we found out we would have it for a month!  She used it at school for a while-instructors were trained and there were issues.  It was freezing up, hard to get calibrated etc.  Luckily the timing of the trial allowed us to keep the device at home over the week of Thanksgiving-giving us a lot of time to get Avery to use it.

I was able to speak to the PRC rep last Monday and we adjusted the settings and got it calibrated and got going.  She showed me how to turn on the save data function-it keeps a record of everything that is "said" on the device and it can be downloaded later.  It was super easy to save it to a flash drive-Im so glad I did because Avery did some pretty awesome things with it!

On monday, while talking to the rep, Avery's behavioral therapist was here helping.  We had Avery sitting down in front of the device and was not that motivated.  We got her some mini m&m's. and here is what she "said" (we hadn't turned on record yet and we were using the 45 1 hit display with all the icons showing)

want, do, go, read, is, do, need, chocolate.

when she hits "need" the activity row at the top gives her choices like "medicine" "help" "drink" etc and on the 2nd page, after you hit "more" there is chocolate. she wanted more m&m's.  it was awesome.

then she said is, turn, do, need, drink, water, get.

I mean.  come on.

We realized she was accidentally hitting words that were close to the words she really wanted so we hid some of those.

Later that day, she said go bathroom.  So I took her and put her on the potty.  She thought it was hysterical-and didnt go.  But I had to reinforce it!

Another day, with her behavioral therapist, while eating yogurt after a meltdown she said: my eat yogurt good good more like.  Her therapist asked her: are you happy now? and Avery answered yes.

On Thanksgiving, we took the device to grandmas but she wasnt into using it too much. Partly because we didnt really have a good spot for it and it was freezing up a bit on me.

The next day we took it up to her uncle's girlfriends parents river house about 4 hours north of here.  We set it up in the kitchen in a high traffic area.  The first thing she said was like need hug want please please I.  So her uncle, who was siting there gave her a hug!

On Saturday morning, I was giving her breakfast and she walked over to the Accent and once I got her in the right spot she said need medicine. And I said, yes you do need your medicine goose!  She takes pills every morning and she was right on with a reminder!

Around snack time, she went up to it on her own and said eat raisins. Luckily I had some. :)

That night, we were getting ready to get in the car for our long drive home and she again went to it on her own and said drink, want, read, go, walk, I live in pleasant hill. I know she was saying-Im ready to go home!  Lets go!

Im pretty convinced that this is just the beginning of wonderful things.  Im very encouraged.

The Accent goes back to school tomorrow and back to PRC on Wednesday....and then we wait.  Again. Keep your fingers crossed.





Thursday, November 22, 2012

mare island

For a place that I called home for such a short time, Mare Island sure holds a large piece of my heart. So when I found out there was going to be a 5k on Mare Island I knew I had to be there. 

Im pretty sure we lived there from 1977 till 1979. I was 3 years old when we moved there and 5 and a half when we left for a larger home in Vallejo.  

Now, 33 years later I live just about 20 miles away from Mare Island.  Back in 2002 when my mom came out to visit, we tried to go drive around and find our old house but the guard wouldn't let us on base. (Even though the base had been deactivated years before I think it was extra security from 9/11.)  We were pretty bummed.  When my big brother came out to visit in 2008, the guard was gone and we just drove right on.  Right over this bridge.  And in moments he was saying "there is the bowling alley"   and recounting memories from the old days.  We then made a few turns and found ourselves on the road behind our old house.  We had lived in a duplex that was in a row of duplexes-all the same-so we had to do it by memory.  And there it was.  The plum tree was still there and the hydrangea. It was surreal.  The duplexes are now abandoned and dilapidated.  So much smaller than I remembered.  We parked my car and walked around a little.  Looked into the windows and recalled snippets of our childhood. Easter photos in the front yard, birthday parties in the back.    

Until this past weekend, I hadn't been back.  I have driven by on my way to Sonoma here and there and I always just look over wistfully and nostalgically.  So when we crossed that bridge again, I had to snap a picture. Then I saw the chapel and had to take one of that too.  
St Peter's Chapel

the bridge over to mare island 
I had sent a message to my oldest friend Becca (we met on Mare Island back in the day and reconnected via Facebook after many years searching about 4 years ago) to tell her about the race.  She said she would be there.  I found her at registration and we chatted before the race started.  We felt pretty proud (at least I did) to say to anyone that cared that we lived there when it was an active Naval Base.  

The race started and we ran by the old hospital, then my old school, then my house.  I told Red we would have to drive back over after the race to check it out again.  And that we did.  I strangely have so many memories from that place.  It just makes me happy to be there. 
Becca and I decided to make it an annual event. Can't wait to do it again.

back window

"maids quarters" in the back-basically a studio apartment above the garage- which would have made a sweet  spot for a teenager.

back door, enter to the door and go right and you are in the kitchen
me and the family, Easter 1978, in the same
spot Im standing in the pic on the left!

me, post race, in front of the old place


me and becca-met on mare island and came back to run it.

Friday, November 9, 2012

inspired


Today marks the three year anniversary of the day our lives were changed officially by Rett syndrome. 

Three years.

Half of Avery’s life.  Seems like a lifetime away. 

But, Diagnosis Day is a day we will never forget, much like anyone who is told "we have a name for what is causing your child's problems"-- the day gets time stamped in your memory.  

The 2nd anniversary was a little easier than the first and this year was a little easier than last but it still marks the day our lives were changed forever. 

So it was totally fitting that I spent the day at Katie's Clinic, where for nearly a year, I have been lucky enough to work.

It was perfect timing for me to welcome four new families to the clinic and get to also see one follow up patient. Im so inspired by these families and it helps me deal with our situation but helping them see that it will be ok. Im inspired by our clinic staff and volunteers that sacrifice so much of their own time for our families.  Im inspired by seeing three of the families today laughing and bonding over lunch.

Im inspired.

As I walked in the door tonight, I could hear Avery screaming/yelling and I thought, oh man, here we go.  But then she was quiet. And then we danced in her room.  And she smiled and didnt yell.  And didnt yell some more.  And I was inspired.

I am inspired.



Sunday, October 28, 2012

13.1

So, I did it.  With a lot of help.  With a lot of pain, sweat and some tears.  It wasn't pretty.  But I did it. I finished a half marathon. A very hilly half marathon.

It was likely the hardest task I have ever completed in my life.

There were 18 (friends of mine and friends of friends) of us on Team Boston or Bust.  12 of us stayed in two rental homes on a gorgeous property just outside of downtown Healdsburg (which might be the cutest town ever) and I stayed with 5 of those girls in one of those houses. Many of us had trained together-some had completed several races (full and half marathons) and some were first timers like me. We thought about getting team shirts but never did-I had created a shirt months prior but never ordered them-little did I know two of the girls bought me the shirt.  The front said boston or bust-and on the back chasing the cure for rett syndrome www.rettsyndrome.org.  

We arrived on Friday and our house had reservations for dinner at Scopa in Healdsburg.  It was delicious.  We had pasta, pasta, chicken and more pasta.  We stayed up too late but set our alarms and went to bed. We woke up Saturday at the crack of dawn (aka the middle of the night-stars were still out!) to drive to the tour bus stop that would take us to the start of the race in Geyserville.  As we waited in line for the bus to arrive we met up with some of the other girls and chatted.  Mostly about how nervous most of us were, or excited.  The nervous ones were getting encouraged by the seasoned runners. There were costumes all around.  It was a bizarre feeling. Standing in the dark, cold and just plain nervous with lots of grown ups wearing tutus.  I would have taken pictures but I was so worried my phone would die seeing that I had to run forEVER.

We got to the start and wandered around.  We met up with some more of the crew and waited.  The announcer asked who was running their first half marathon and I raised my hand so high-I was pretty proud of myself for just being there.  The sun had come up by this time and it was looking like a gorgeous day.  Before I knew it, the race started and we were off.

It was just beautiful.  We all ran our own race.  I stuck close to my friend Sarah (who has never run more than 6 miles and was as nervous as I was--she finished way before me by the way!) but spent a lot of the time alone.  I had to remind myself to look around and take in the scenery--Not only the vineyards but plenty of hilarious and creative costumes.

It is a wonderful feeling to be around perfect strangers who will cheer you on if they see you struggling.  It is one of the most supportive environments to be in.

Around mile 8, I hear someone behind me say "hey, what's rett syndrome?" I look to my left and a woman comes up next to me with a genuine interest showing on her face.  I was so caught off guard I just said "its a neurological disorder-my daughter has it-they are close to a cure-im running the boston marathon in April on Team Rett-if I make it through today!"  she placed her hand on my back and said: "this is nothing compared to what you do every day" smiled the sweetest smile, and ran off.  pretty cool.

I thought a lot about Avery around miles 9 and 10 as my legs were starting to yell at me and my toes were going numb.  I thought of how hard she tries just to do the little things we take for granted.  And that yes she can walk and even run but she will likely never run a race.  I realized that yes, there were a LOT of people there running with me-but there were even more that weren't there.  And that just being there was really enough. That I was lucky to be there.

Then I hit mile 11 and thought "you can do this-two more miles-dont stop" but I kept stopping and walking.  I could only run about a tenth of a mile at a time. I was getting the chills, despite the morning sun blaring down on me. I was dehydrated and exhausted.  I was thinking about having to run twice as far in 6 short months.  I was thinking about the finish time I had figured I might make-and when I passed that I was pretty defeated. I was mad at myself for even setting an expectation for a time.  At miles 12 I told myself to run without stopping to the finish and I couldnt. I walked.  I was texting my friends to go to brunch without me-but at 12.7ish, there they were-cheering me on. I gave them a double thumbs down-but they just smiled and clapped and cheered. I was back to running at that point-I could feel the finish coming up.  Two girls ran past me and one of them screamed "Mile 13 is my bitch!" and that made me smile. I could see the 13 mile marker, and I couldnt feel my face, or my feet.  My legs were so tight and my fingers puffy.  My 2.2 hour playlist had just started to repeat. I could now hear the announcer reading names, I looked down as I crossed the finish line because I was so overcome with emotion and all I could see was the photographer snapping away-and I was doing the ugly cry.  I never heard my name.  I grabbed my finishers medal and saw Sarah with a huge cup of water for me. I hugged her and chugged.

I ate an apple.  It was the best apple I have ever had in my life.  I got so many hugs.  I searched for water, found it and drank a ton. We got to have a free brunch thanks to Anne who has a Subaru (major sponsor of the race). Everyone did awesome.  One of us might have come in 6th place in her age group. One of us might have puked-and then rallied.  We all felt proud of each other and ourselves.  We cheered on those who finished one hour after I did.

My official time was 2:35:34 (I was hoping for 2:20ish).

We went back to the house and popped the champagne,  got on our suits and laid in the california wine country sunshine.  We hot tubbed.  We got a second wind, got dressed and went downtown. Found a fancy pizza place and watched the Giants game during an early dinner.  We went back to the house to finish the game and then were all in bed before 11.

We woke up sore and exhausted.  But we did it. Together.
Im so lucky to have such great friends. thank you ladies!  All of you!  Im so proud to to know you all!
Now the real training begins. 168 days til 26.2.


10 of the 12 before the race!

ready to go!!??

After in the Subaru tent!!
our yard

our backyard

heading out!






Tuesday, October 9, 2012

life changing


The phone call we received almost three years ago when we learned Avery had tested positive for Rett syndrome was life changing. Our lives now go down a new path.  That path has brought many things into our lives that we never would have experienced had it not been for that phone call.  We have met the best people, participated in inspiring events. 

Life changing phone calls don't happen too often and they aren't always bad news.  On Monday October 1st, I found this email in my inbox:

"Good morning everyone and congratulations! You will all be Fundracers for Team Rett 2013 in the Boston Marathon!

I will send member names, emails, and more information shortly but just wanted to let you know so that you can start spreading the news and generating some buzz.

Thank you all for your incredible motivation to train, raise awareness, and funds for Rett syndrome research. We are currently reviewing all research projects to determine how our funds will be allocated. For those of you out of state, Rett Syndrome Association of Massachusetts is the organization that rec’d these bibs from John Hancock.

Thanks! Go Team Rett!"

I got in.  Im on Team Rett.  I bought my plane ticket and am going to Boston.  One of my best girlfriends is going too. Two amazing rett mommies and two awesome rett dads will also be there. WOW.  Talk about life changing.  Im going to run a marathon.  THE BOSTON MARATHON is the most prestigious marathon around.  This is huge.  A once in a lifetime opportunity.  I cannot believe it.  Running a marathon was on that list in my head of things I thought I would never do. Ever. But Im doing it.  I was inspired and motivated and I cant wait.  Im going to need your help though-part of the deal involves fundraising for the Rett Syndrome Association of Massachusetts.  I must raise $5000 in order to run. I know I ask a lot of everyone to support our cause.  But I cannot stop until there are real treatments for my girl.  It is within reach.  We can get there and you can be a huge part of it!  Check out my fundraising page here and please share my story: http://www.crowdrise.com/TeamRettSyndromeAssocofMass/fundraiser/ericarobertson

Friday, October 5, 2012

i hate it, but...

I hate rett syndrome, but i love this life it has brought me.  sure i would give it up, give up anything to make my girl better.  but...
this week I got to conference call with some really cool/smart/dedicated people in the field.
today i got to participate in clinic once again (its my job but i still cant believe it).  i got to be around the most caring and fun people ever.  i got to be with families that are so strong.  going through bigger hardships than we are and still pushing.
tomorrow i will welcome about 50 families as they come to be seen as a part of a research study (avery included). and we will hug and visit and laugh.  and then on sunday, the strollathon.  what a day that will be.  i have been a part of raising nearly fifty thousand dollars this year.  last year we had a part in raising 36K, and the year before was 72K.  thats over 150 grand.  for research.  to cure rett.  that day is coming.  what a day that will be.  and I love that we will have had a small part in getting there.

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)

Tuesday, August 28, 2012

a very tahoe vacation (boats, birthdays and bears)

Up until july 6th it had been just over four years since I had last seen my brother, and more than five years since I had seen my sister in law and my nephews.

For a few years we talked about us going out to VA for a week at the beach or them coming out here for a week in Tahoe and this January we finally decided to go for it-to rent a house in Tahoe and they would fly out here.  And on July 6th, I drove to Tahoe as fast as I could to see all four of them.

My nephew Ryan is 7 (almost 8), he was born one week after Red and I were married and was a 2 year old the last time I saw him. My nephew Evan is 5 and the last time I saw him he was a blob in a car seat.

It was really great to see them all!  Im really grateful that they were able to fly out here all the way from VA-no easy feat-two kids and two stops!  Getting to Reno isnt the simplest thing to do.

We rented a great spot in Dollar Point, we had a hot tub and were within walking distance to the pool.  The week started off slow and then just like that it was over.

We happened to have several groups of friends nearby as well as Red's aunt, uncle and cousin with whom we spent a lot of time.  It was so nice to be with them as they never get to see my brother and we love hearing old stories about our parents.

We boated, beached, rafted, swam, ate great food, played whiffle ball, hot tubbed, worried about bears, did puzzles, watched movies, shared stories, laughed, drank lots and just had a blast. Avery did well-we celebrated her 6th birthday there which was perfect.  We had an ice cream cake and she got to swim all day.  Nolan got bold and took off his vest in the pool and pretty much learned to swim.  He also followed his nephews like a puppy and they did their best to ignore him.  It was very cute.

One day Nolan came in and said nonchalantly: I saw a bear. And his cousins were all "prove it", "no way" and we asked Nolan: what color was it-he said black.  We asked: what was it doing-he said just crawling. we all said thats nice.

About 20 minutes later I hear my brother calling for us to come look at the bear in the yard next door.  Red was collecting whiffle balls that had gone over the fence and was this close to walking up on that bear.  yikes.  So Nolan had proven what he had seen.  His cousins thought that was pretty cool.

I think the trip will be a wonderful memory for the kids-I know it will be for me.
A few takeaways:
my brother and I are a LOT alike. (we are both control freaks although he is much worse!)
you dont need that many groceries.
dont trust directions on your iphone or you might end up in Reno.
running is nearly impossible in that altitude.
Altitude also makes you forget how to talk and drop things.
my sister in law gets a wonderful potty mouth with some alcohol in her (which I love).
there are no good radio stations in tahoe city.
it is a really cool thing to hear "aunt erica" and "uncle red".

and...





























...most importantly...
I will not wait another 4 or 5 years to see those four again!