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Tuesday, April 23, 2013

still so much good.

Eight days have passed but it feels like a month.  Im still feeling the exhaustion and trying to get back into the swing of things.  I feel like I need to relay the good parts of our trip to Boston.  There was still so much good and it should be shared.

We flew out with Coach and Lee Ann and had a wonderful flight on Virgin America (best airline ever) with plenty of bloody marys (with gin which I higly recommend!).  We were sitting near the back of the plane and soon the bathroom line was really long. It stayed like that forever and I couldnt figure out why.  Lee Ann finally says: everyone is hydrating.  of course.  We got chatting with a man in line that was wearing last years marathon jacket and he gave us some tips. It felt like 75 % of that plane was heading to the race.  It was a cool feeling.  We took a couple photos-none of which turned out that great but I was really happy with this one only because my arm looks really skinny.

We landed some 5 hours later and got our rental car, Red and I dropped Coach and Lee Ann at their hotel downtown noticing that 1. everything looks really old there (because it is) and 2. it is still winter in Boston.  We then made our way to Natick to meet up with our hosts - Zhanna and Matt and their cute kids Rachael (who also has Rett) and Jacob.  A few months ago when I was trying to make plans for our trip I texted her to see if she knew of any rental properties we could try out for the weekend.  The hotels were out of control expensive.  Without delay she wrote back "dont be silly, you're staying with us".  Zhanna and I have known each other for a few years but had only met in person once.  This would be my second time seeing her. Ever.  And she invited me and Red to stay in their home.  It was so sweet. I was very excited to get to hang out with her a bit more and especially to meet her husband and kids.  It couldnt have been more comfortable when we got there.  The kids were already sleeping and the sitter was ready to take over.  We dropped our bags in our room and found this...


Of course I cried.  How sweet.

We shared a glass of wine and then headed out for dinner. We met Zenaida and her sister Hilda there as well as Laura and Greg (parents to Meredith who has Rett variant called FOXG1).  Laura and I had also known each other for a few years and only met once.  But with other Rett parents sometimes things just click so well it feels like you have known each other since grade school.

We had such a great dinner.  Delicious food at The Cottage in Wellesley and great company.  All the boys sat together and talked and the girls did the same. We paused for a group photo.
After dinner we headed back to Zhanna and Matt's.  I was wired and wanted to stay up all night and chat but sure enough we all got tired and I begrudgingly went to bed.  Red and I stayed in the playroom surrounded by the kids toys-it was perfect.  We both secretly love futons so it suited us just right.  When I woke up in the morning I could see some activity in the hall.  Rachael, who is about 6 months younger than Avery, was going in and out of her brothers room and even without my contacts in I could tell she was eying us.  Her gears were turning-who is that sleeping in my playroom!??  So after a couple more glances our way she walked up and tapped the door open-just like Avery would do. She walked over to us in her bed head and cute jammies with the biggest smile on her face and said HI!

It was the perfect way to wake up.  We made our way downstairs had coffee and met Jacob who is too cute for words. He showed us every single toy he had.  It was adorable.  We decided to go for brunch at a fantastic place called Zaftigs.  It was great.  The best part was watching Rachael use her fork to completely feed herself.  It was incredible.  She is so quick and so good at it.  Jacob sat in between me and Red and was adorable.

After the meal we headed towards the Expo on the race route-got a good idea of what miles 11-26.2 would be like. At first it seemed not so bad, then I got some butterflies.  Before I knew it we were in Boston.  Zhanna, Rachael and I went in to the convention center together while the boys found a place to park and wait. As soon as we walked in to the Expo and I could feel the energy of all those people I realized I left my packet pickup stuff at Zhanna's.  Whoops.  Rookie mistake.  Lucky for me they have a "solution center" for rookies like me.  I walked over to the solution room, they checked my ID and I got my "replacement stuff".  Then we got my bib and bag of goodies and got out of there. But not before we documented the moment.  I was kind of sad I didnt get a photo in the solution center.


After a quick stop at Starbucks, we headed to Needham for the get together at Maria's.  Maria is on the board at RSAM (the organization for which we raised all that money) and a Rett mom.  She might be the most gracious and nicest woman on the planet.  She opened her home to the entire team and their families plus local families to mingle, eat and hear from the MIT researcher.  She even allowed Micaela, the BU student who contacted me about doing a story on me, into her home.  I got to see many familiar faces and this one in particular that I have been waiting literally years to see:
We all introduced ourselves and why we were running and how many marathons we have done.  A couple of first timers, several multiple timers and one man who has done over 88.  He actually said he lost count. So impressive.

Micaela got us outside and interviewed us for the piece I posted once we returned.  She was so sweet to seek out a story that moved her and I felt really lucky that she found mine. She took this photo after we talked:
team rett 14 of 19!





Maria was so sweet and had a goodie bag for each of us.  In it was an awesome SPIbelt (running belt with a pocket), gels and a 26.2 magnet.  How thoughtful.  We also got our singlets, finish line passes and temporary tattoos for race day. What a wonderful thing to bring us all together and get to meet Dr Li.  She was just as overwhelmed as we were, she explained, because she had nver met a girl with Rett syndrome till that day.  I can imagine it gave her work so much more meaning.

We left there and headed back to Zhanna and Matt's.  Red was looking forward to watching the Masters and we stopped at the gas station to get some beers.  Umm, no beer.  Then we hit the grocery store b/c I needed a few things anyway and hmmm, no beer there either. Coming from California where you can buy hard liquor at the Safeway we were confused.  I grabbed some groceries and then we headed to the liquor store.  Just in time too b/c not only do they only sell alcohol in the liquor store but only till 6pm!

We hung out with the kids for a bit and all day long it was the same thing-Rachael was drawn to Red.  It was the sweetest.  She would crawl up on the couch next to him.  She patted his back.  She smiled and said HI! It was precious.


We had a lovely dinner in with Zhanna and Matt.  We chatted and talked about how nutty it was that we "knew" each other online for years, finally met in person, Rachael gets a Rett diagnosis too and that we were in their house like we had known each  other for years.  It is a pretty neat story.  I love when life turns out like that.  We went up to bed and I got my stuff ready for the next morning. 
Then I went to bed.  I think I slept.  Im not too sure.
Morning came and it was gorgeous. Crisp and blue and perfect.  Maria and Zenaida came to pick me up at 6:30 am and off we went.  The rest of the story you already know.  But it is all the good-great friends (old and new), smiling kids, researchers, generous people, kindness and love-that I want to remember. It is indeed hard to forget.

Wednesday, April 17, 2013

this is mine

No doubt, over the upcoming days and weeks, there will be many stories pouring out from all over after the bombing in Boston.  Stories will come from those immediately affected and injured, the first responders, those that were crossing the finish line when the first bomb went off, those near the second blast and everyone from Hopkington to the 26 mile marker.  We all will have a story.  This is mine.

Zenaida and I were driven to the shuttles that would take us to athletes village pretty early. It was cold and we shivered and wondered what the hell we were thinking.  We laughed and chatted on the school bus that took us closer to Athletes Village. I wasn't nervous. Walking in there made you feel like an Olympian.  Huge tents sprawled out on the grounds of a middle school.  There was music blasting, rows of port-a-potties, people setting up mini camps to wait till their wave was called.  There were announcements being made regularly over a loudspeaker and it was so cool. Zenaida and I walked around looking for anyone from our team and quickly decided we were the first to arrive and found a spot to put our trash bags down and relax. In a few minutes it seemed the crowd had doubled and then tripled. The bathroom lines were getting longer.  I have never seen so much vaseline. Or so many inner thighs of older men.  They have no shame when it comes to preventing chafing.

Soon enough we had met up with most of our team. We had our pictures taken, applied our temporary tattoos, wrote our names on our arms and the names of the girls we were running for.  We packed up our bags and headed off to the buses to drop them off-we could pick them up at the end of the race. Then we made our way to the start line. I made a quick last minute bathroom run, then booked it up to our corral.  I couldnt find many of our team but did make my way to Zenaida and Danny and Krissy.  We chatted. We moved closer to the start.  Then it was time.  We were the last group to go. The closer we got the start, the more people there were to cheer us on.  It was mind blowing how many people were there.  I had the biggest smile on my face and I just kept saying this is so cool.  So cool.  And then I was running.  I was with Zenaida and Danny for a little while and then they took off.  I was trying to keep a good easy pace as I was told to take it a little easy at the beginning because it is downhill.  I was happy with my pace by the time I had hit 5K and by 10K my time was 1:07:37 which was just about exactly right.  My half marathon time was 2:33:25 which was just perfect.  I knew it was going to take me between 5 and 5 and a half hours to finish-and by then I had decided I really didnt care about my time.  I just wanted to cross that finish line and feel the exhilarating celebration of my own personal triumph.  All the hard work would be worth it.

Miles 13-16 were a flash.  It was my first time running without music and it was awesome.  All I could hear was my breathing and the spectators.  What a amazing group of people.  I passed by bikers bars blaring metal music, children handing out candy, families grilling on their lawns, lots of drunk college kids, girls in bikinis, and some of the best signs I have ever seen: YOU TRAINED FOR THIS LONGER THAN KIM KARDASHIAN'S MARRIAGE!  THOSE SHORTS MAKE YOUR ASS LOOK FAST! IT'S ALL DOWNHILL FROM HERE...OOPS, NEVERMIND.
And the cheers-some in thick Boston accents "you're doing great over heyah!" "dig deep! you got this!" "Go person wearing purple!"

I had one of my best moments at about mile 11 where Red, Coach, Zenaida's sister and Lee Ann's mom and sister were waiting for me.  Red was holding the amazing sign that Zhanna had made me and I was so happy to see them. I hugged them all.  Then they ran a bit with me and shooed me away.  Right after I saw them my knee started to hurt a bit.  I had to start walking a little here and there but other than that I was feeling good.  A couple miles later you hit Wellesly College where you are screamed at by college girls to kiss them for a number of reasons: kiss me, Im graduating!  kiss me, Im japanese!  Kiss me, Im from Michigan! A runner just ahead of me picked a girl and kissed her.  I didnt kiss anyone.  But I smiled a lot. 

I walkeda lot between miles 16 and 19.  It was tough.  Way harder than the upcoming heartbreak hill would be.  The spectators kept me going. Even though my feet hurt and my knee was barking, I was actually having the time of my life.  Taking it all in.  The weather was perfection. The spectators were amazing. Let's go Team Rett!  Giving kids high fives. Seeing all the other runner's t shirts with dedications to loved ones lost, dedications to cures for other syndromes and disorders and seeing three blind runners all humbled me. It was so special.

I then saw my friend Zhanna and her two kids and Laura, Greg and their daughter Meredith (who I had not yet met) waiting for me jumping up and down screaming.  It was incredible.  Another highlight.  then more Rett families with their daughters.  Just beautiful.

At about mile 20, I remember seeing a girl about my age speaking to a member of the military who were all along the route.  She was crying.  I heard her say "Im not sure what's going on, it's total confusion".  I figured she was talking about someone on her team that maybe was up ahead or behind and was injured or passed out or something.  He got on his phone. I ran by.  Then I saw another girl talking to a police officer.  She too was crying. For whatever reason I pulled out my phone and there were two texts Call me Call me.  From Red.  Im thinking Im running, why would he want me to call.  I called.  He said to me: I just got a call from Coach.  There has been an explosion at the finish line. There is no finish line.  Im coming to get you. We had planned for him to come meet me around mile 23 so we could run the last few together so the fact that he was coming to get me was normal.  The fact that he said there is no finish line was not. Everything stopped-except it didn't.  More runners were on their phones but the spectators were still cheering.  They didnt know.  I was still trying to run while texting and checking twitter.  I stopped to ask a police officer-what happened at the finish?  We dont know, it is just coming through, just keep running till someone tells you to stop. Wait, what?  I saw a tweet from Luke Russert from the AP wire: two blast heard at the Fairmont Copley Plaza hotel.  Then nothing.  Im trying to call Red back because now we have been stopped by police.  We are all just stunned and standing around. Then they tell us-runners head over to the sidewalk-race is cancelled.  I cant get a hold of Red.  Finally I do.  Im panicking. Im in shock.  I have no idea what anything means.  I can't understand simple sentences.  Im looking around to try to tell Red where I am and I give him the name of the cross street Im on.  It takes me about 5 minutes to realize Im at an entrance to Boston College.  Just before the 22 mile mark. So close but so far away.

The police were letting people walk down the race route so I made my way on the sidewalk.  Then my phone started going nuts.  Texts from everyone everywhere. I was trying to quickly let people know I was ok but also trying to conserve my battery b/c it was getting very low.  I was also trying to check on my team mates and find out more.  I was hoping it was an accident.  An underground explosion-not a terror attack.Are you kidding me? Who does this? 

I actually thought to myself " I need to call my mom and dad" what a crazy thought since they have both been gone so long.  Phones were not working.  I tried my brother but it would not go through and I texted him instead. I finally found Red.  We tried to talk it out.  What could this be?  We were overhearing people's conversations as they passed and were checking twitter and the news.  Mass casualties, terrorists, pipe bomb. We didnt know what to believe.  It was the eeriest walk.  Then we started to panic again as we got closer to downtown.  Barricades everywhere. Cops everywhere. They wouldnt let us through. People on their phones crying.  People also on their phones laughing b/c they still hadnt heard.

We zig zagged the city.  It took us nearly two hours to get downtown.  Part of that we spent rushing down an alley parallel to the race route.  Helicopters over head. Hearing from Coach that he had been across the street from the first blast and that they were with friends of friends on lockdown somewhere else.  We turned on Arlington St and I saw the hotel.  I wanted to sprint there.  In front of the hotel were several men-we barreled past them and in the revolving doors: excuse me, sir!  your room key.  Thankfully we had one (we were just crashing there for our last night in town with Coach and Lee Ann).  I ran to the elevator and frantically pressed the button.  I still had my race bib on.  A man with a suitcase asked me if I had run-I said yes but I didnt finish. He said he just flew in and the airport was closed.  I got into the elevator and just put my hand over my mouth.  My mind was racing.  We rushed into the room where Lee Ann was waiting with our other friend Gary.  She was on the phone with Coach.  I walked in and lost it. Mostly from the relief of being there and being safe after two hours of uncertainty.

The rest of the night we spent in that room.  Drinking too much wine and watching the news coverage.  We had to stop and watch a funny movie to take our minds off it all.  It was too much.  We were going from acting like everything was normal to telling our versions of the day and crying.  Hearing a friend say "and that was when the second bomb went off" is hard to process.  Even though you know it happened and you are watching it happen on the news it doesnt seem real.
We found out Lee Ann had finished about 10 minutes before the first bomb.  We found out that the VIP passes our whole team got likely saved them from being on the wrong side of the street that day. We found out that everyone from Team Rett was ok. But nothing was ok.

It was so disappointing. On every level.  From not getting to finish after all that work, to finding out about the deaths and multiple injuries it was all so tough.  Obviously me not finishing was the least of my concerns but I just couldn't believe it. We were there.  We experienced a terror attack. I dont think I will ever understand it.

What I do know is this.  Im so glad to have had so many people concerned about us and our team. Im so glad that I was able to walk 10 more miles than I had to to get to a safe place with friends.  Im ridiculously grateful that none of us were hurt even though I know in our own ways this event has scarred us forever.  I know that I will go back next year and finish this even though Lee Ann generously and sweetly gave me her finishers medal I have to go back to really do it for me.
I also know that this experience-like a lot in my life-can be compared to living with rett syndrome.  what happened was not fair, it was not ideal.   Others experienced the same thing but with far worse consequences. It was going great and then just like that it all changed. But with that change a realization of how grateful I am for what I have.  We have been knocked down before and we will get up again.



me coming in to mile 11
Thank you to all of you who checked in with texts, calls facebook posts etc.  It was so wonderful to be hearing from everyone while I was alone walking to find Red.  It was extremely comforting and I thank you from the bottom of my heart.

xxoo






All I have right now...


I have started this blog post in my head about a zillion times and I just can't put this weekend into words quite yet. so this is all I have got.  Read the article in the link below.

All I have for now....


Friday, April 12, 2013

it sort of feels like...

It sort of feels like the night before my wedding.  Or the night before I was to be induced with Avery-or the night before Nolan's scheduled C-section.

Because tomorrow I will board a plane headed for Boston and when I get there I will be preparing to run a marathon. And it will change my life.

it. will. change. my. life.

just like getting married did and having kids did and rett syndrome did.
if I hadnt done any of those things-gotten married, had kids and then been dealt Rett-I wouldnt be preparing to change my life in this way.

I used to say-sure I would love to be able to say "I ran a marathon once" but I never believed I would do it.

Im an emotional wreck. Seeing how much money Team Rett has pulled in makes me cry.  Reading posts from friends new and old wishing me luck makes me cry.  Texts from friends about the marathon make me cry.  Every dollar donated makes me cry.  Its that ugly happy amazed cry where you sort of let out a laugh and just sob-you know that one? that is my favorite one.  Thinking about walking into the Expo makes me cry.  Thinking about it at all makes me cry.

So Im going to bed. I need sleep.  But Im so anxious and excited-this is huge. Im so lucky.

Monday, April 8, 2013

two good ones in a row.

Two good ones in a row. Weekends, that is. 

For a long time I have sort of secretly dreaded the weekends-especially the ones that didnt involve any desginated mom and dad plus other adults time. I know that sounds incredibly terrible-but after living through the last 3 years or so with rett syndrome, and the 2 years leading up to it, I have come to dread many things that involve: 1. multiple hours not being able to go anywhere because it is me alone with the kids, or 2. activities that involve other children Avery's age that are talking and running and painting their nails and asking questions and just being regular kids.  I have just come to dread all of that.

Except now Im not.

But I have been in such a HABIT of hating spending time involving either 1 or 2 listed above that I havent really been trying to break that habit.

Then Easter happened.  We had our annual egg hunt here at our house.  Avery made it clear she couldnt have cared less about the egg hunt and I was happy to just let her wander around the yard listening to Mumford and Sons and JT.  And I really was and that means I am starting to just accept that yes, this stuff is hard, but it is also ok sometimes.

Then this weekend we had nothing really on the calendar. So on Friday night I said: We should go to the zoo tomorrow. And immediately felt like I shouldn't have said it.  I DREAD taking Avery to the zoo.  I just never know what will happen. Will she scream?  Will people stare?  Will she have fun?  Will she be overwhelmed? 

Well, in typical Avery fashion of late-she surprised us and she loved it.  She was great.  quiet and sweet and even went on the cars with Nolan.  The guy running the cars was amazing and totally got it when I told him "she cant talk but she can understand you" and he helped her in and out of the car all while encouraging Nolan to help her. There was only one other little boy on the ride-I saw him flapping his hands a little and then signing "more" to his Dad at the end.  I looked at his mom and just smiled that knowing smile.  It felt like a really neat moment that we were there together.

All four of us went on the little roller coaster-Avery sat with Red and kept her head down the entire time and Nolan was with me yelling "I want to get off!!".  It was great.  We rode the carousel, the train and Nolan went on the airplanes.  Then is started to drizzle and it was nearing lunch so I said "let's go to habit burger" and Nolan said "Can we eat inside?" and I said "well I dont know....ok sure!"  We drove back towards home and stopped at Habit Burger.  We went in and Avery stood with me in line while I ordered.  We ate there.  In a restaurant. She was awesome.  Sure she knocked over her drink a couple times, and launched a couple fries when she whacked the basket but whatever.  We all ate lunch together in a restaurant. I think I might have had the biggest smile on my face when we walked back to the car.  Yeah I know I did. 

Sunday, April 7, 2013

i wonder

I wonder how I  will feel in exactly one week.  The eve of my first marathon.  In Boston.
I am imagining that I'm going to be a ball of nerves-a total stress case, a mix of anxious/nervous/excited.  Today I feel ready.  I wonder if I will feel ready then.

Everyone says Im ready.  I hope they are right.

I have done the work.  Sure I could have done more, trained a little harder, but I was a little worried about an injury sidelining me from the race so I took it easy-as a beginner.  I feel good about how I trained and I do feel ready.

It is just so tough to imagine it.  There are over 500,000 spectators at this race.  No that is not a typo. Im so used to running alone at this point I cannot picture having that many people watching.  Although our wave is last and I will take forever, so most of those spectators will likely have packed up by the time I cruise through. But still.

Im taking it one day at a time.  For now, Im looking forward to getting on a plane with good friends on Saturday, meeting up with some newer friends Saturday night and then hitting the Expo Sunday and getting to meet with the researcher who will be using the money we raised to test drugs on genetically engineered stem cells. Ill also be trying to find time to meet up with a journalism student at Boston University who found my story and wants to do a story on the beginner runner from California!  That is really as far as I am letting my mind go for now. Because that is a lot.

But I do wonder how I will feel the night before, the morning of, and during the race, how long it will actually take and if Ill make it over the finish line in one piece.  I wonder if I will be emotional at the start, the whole way or just at the end.  I wonder if my phone will die, if Ill have enough shot blocks, if I will get blisters or chafing. 

But I know that all of it-the blisters, the cramps, the jitters, the fear-are all going to be worth it.
I know that because we did it-we reached and surpassed our Team Goal of $100,000.  At this moment we are sitting at $105, 510 in fact. My personal total is $8668. It is amazing.  Something life changing could come from this research.  I wonder....




Tuesday, April 2, 2013

easter weekend

we had a crazy busy weekend.  it was pretty wonderful.  on saturday we hosted our annual egg hunt with a small group of friends that we have been doing since the kids were babies. the weather turned out to be perfect.  the kids loved the egg hunt (avery couldnt have cared less about finding the eggs, just in getting the candy from them!)  Nolan had an absolute blast and some party goers lingered till near dinner time--which I love.  I even got to sneak off and do a little shopping mid day.  We then left the kids with the sitter to head out to dinner and a little live music with grandma.  We had a great time-watching the lightning out the window was a little worrisome for my 20 miler the next day, however.




on sunday I did my 20 miles.  stretched and iced.  then we got ready to go to grandmas for family easter.  we had so much fun there.  the kids played, hunted for more eggs, ate way too much candy. the adults visited and laughed and ate a delicious meal. it is getting easier for me to see other kids so easily participate in things that Avery cannot do...it is still always there...in the back of my mind...wondering what she would be doing and saying...but she is happy just being Avery and that makes me happy.