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Tuesday, October 29, 2013

healdsburg half, take 2.

this past saturday morning i found myself once again standing in the dark, surrounded by people trying to get warm-pre-sunrise-preparing to run 13.1 miles.

it was freezing, well, around 40 degrees- and i totally spaced on the bag drop option. most of us did. so there we stood shivering, inappropriately dressed, wondering why the hell we got up so early and got on that bus to the start line when the race wouldnt start for another hour. at least i decided to wear pants and not a skirt.

i was feeling no nerves this time which was in stark contrast to last year. last year it was my first half. this would be my third. big difference. plus i had a partial boston marathon under my belt which helped a ton.

so what were we doing there? we were there to raise awareness.  our team: the rett warriors.  seven ladies with matching shirts-chasing the cure. these girls dont just show up the day of to run.  they register (which costs money), they train (which takes time), they buy shirts (more money), they chip in for a place to stay, they leave their kids/families for the weekend and they do it all with a smile. they do it for Avery.  they are some of the greatest friends a girl could ask for. truly.

just before we thought we might freeze our buns off, the sun started to come up and it was soon time to trek over to the actual start. i was excited to see the new course-a little nervous about the hills and elevation.  i had seen the elevation map and it looked like a doozy.  up, then way down then up and down the rest of the way but even those downhills were up.  seriously.

i started off great.  stopped twice- once to take off my jacket and then to get a piece of gum but ran straight for the first 5 miles.  it might be one of the most gorgeous places to run-wine country.  you have to remind yourself to look around-look left and there are vineyards, to the right-more of the same.  quaint homes are peppered throughout and adorable wineries everywhere. it is breathtaking really.  the weather that day was silly amazing.  clear blue skies for as far as you could see.  pretty chilly at the start but not too hot by the end.

i didnt hit a wall at mile 9.5 like i did last year.  that was a good feeling.  there were plenty of times when i had to tell myself to slow down as i was at about 10:35 when my comfortable pace is more around 11:10.  i was sort of secretly hoping to at least beat last years time but i didnt want to use up all my energy in the beginning.

there was a point midway when my left hand was pretty numb.  both hands were cold (next year ill have gloves) and i had been running for over an hour.  i remember trying to get something out of my pouch-shot blocks or lip balm or something but my hands wouldnt work. they would not do what i wanted them to do.  i immediately thought of goose. of how hard her life is, how hard she has to work to do the most basic of things and it motivated me so much. every person that passed me read my shirt.  i know they did.   and a lot of people passed me. 

at mile 11 i got a little emotional about boston.  it was mile 11 where i met up with my husband and friends in boston-it was an amazing moment-one i will never forget. i was ecstatic that day, until i wasnt.  and running past the mile 11 marker in healdsburg brought back some mixed emotions. i was also thinking 2 more miles. just 2. i had already started mixing in a lot of walking but was able to run more than a tenth of a mile at a time so i was feeling good.  by this time, the course had meandered onto a fairly busy road.  we had to stay on the left side of the road in sort of a single file line.  that was annoying. then the buses started to pass.  with runners that had finished. runners with medals.  their faces so relaxed and happy.  and im still slogging along. annoying. but finally i could hear the finish line.  i took out my headphones and put them away and kept pushing.  i was so close.

i got the end where i could see people cheering and im looking for my girls.  but i dont see them, and then i do and they are screaming for me holding their hands out for high fives and i cannot make it over to them as it would take me a few extra steps out of the way.  at this point im feeling like i might vomit. truly.  i was thinking "is it socially acceptable to puke at the finish line?, im sure it wouldnt be the first time" then the clock is in my sights.  i cant see it very well and then it comes into focus. 2:37 something-what? i slow down, because i know now that i wont beat my time. but i felt like i had gone so fast.  then i remembered i started in the back-my chip time should be closer to my garmin time. so i pushed it. and i still didnt beat my time.  but whatever. it wasnt the point.

soon enough i have my wine glass in hand, i have met up with my team and we are tasting champagne and beer and enjoying the post race party. we chatted up a few people who asked us about our shirts.  i handed out some awareness cards. it was awesome.

we headed back on the bus to our car and went to our rental home.  we popped the champagne and got in our suits and sat in the sun on the deck. we hot tubbed, looked at magazines, talked about silly things and deep things. we laughed so much. 

it's funny we kidded around all weekend about how next year we would switch it up and maybe do a girls weekend without a half marathon involved. but as soon as we were all done, we all gave our word we would be back next year.  it means so so much to me that these girls have decided to do this with me.  and what would we be doing if we werent doing this? ill never know, and i dont want to.  im so grateful for the way my life has turned out.  i wonder a lot what kind of person, mom, wife and friend i would be if i had gone down the path i expected. im stealing this from a very wise mom friend of mine, but avery saved me from that life.

im leaving out so much of the weekend-great talks, SNL, food that you wouldnt believe, wineries with amazing people with great stories, outlets, raccoons, sock borrowing, hair curling and above all great friendship. here's to you, my fellow rett warriors.  see you there again on 10/25/14-chasing the cure.
kelly, me, heather, pam, anne, lee ann, and julie.





Wednesday, October 23, 2013

my baby is 5.

three weeks ago Nolan turned 5.  i know it is over said but man the time goes too fast. im not sad or weepy that he is growing up though-i've never really understood that whole thing-the whole crying because my kid is in kindergarten thing. that is what is supposed to happen people.  it was your plan, remember? to have a typical kid who goes off to kinder, then junior high, then high school then college and then becomes an orthopedic surgeon. or a major league baseball player.  (either would be just fine with us!)
i digress...
so Nolan is 5, he is in transitional kindergarten at an elementary school-basically a big kid.  he is so independent and still such a snuggler.  he kisses me on the lips and hugs me and sleeps with his deedee (blankie) that he has had since before he was born.  we left it at his afterschool for a few days and when he got it back and he was snuggled in bed, he kissed it.  I asked him if he would always sleep with deedee and he said yes.  even when you are in college? yes.  even when you get married?  yes.  so sweet.
he wanted a bowling party this year and because we are trying not to go straight to the poor house we only invited his closest buddies from school and a couple kids of close friends of ours that he has known forever. we had a great time.  pizza, cake, bowling done.  oh and there was beer. so that was a bonus.  all the parents came and bowled too.  everyone had a good time.  more bowling for everyone should be on the list. nolan was so zoned when we sang happy birthday he literally forgot to blow the candles out as evidenced in this video.  love my little 5 year old.

Tuesday, October 15, 2013

the most stressful, tiring and rewarding weekend of my life (aka thank you).

this is the fourth year i have chaired the Strollathon. it is also the fourth year since we received the diagnosis (coming up in november). it is the second year i have chaired the Strollathon AND helped to coordinate the natural history study that katie's clinic hosts on the same weekend.  last year i was seeing spots by the end of the weekend.  this year i was all smiles.  the difference was help.  the help was always there, really-but i just never asked for as much as i should.  this year i did, and what a difference.  this could get long...

but, it blows me away that people actually choose to help out at these things.  they make signs, they bake, they spend time, they hang posters, they dress up in fun outfits for the kids, they paint faces, they smile and just help. i need to thank some people.

first, the group i have been so lucky to partner with since the beginning is the National Charity League.  I contacted the oakland/piedmont chapter back in 2010 and asked for their help with my first event. they showed up ready to work and i had no idea what to tell them!  that is how unorganized i was.  one of the moms, Kim, sat next to me at registration and literally saved my life. she got me organized and on track and at the end said to me "this has been such a wonderful event, can we come back every year?".
and they have. and they have saved me each time.
since that first year we have moved locations and since that year whenever i show up i am greeted by my NCL people. ready to go. and every year i dont quite know what to tell them and every year they just make it happen. and each year they do more. this year they did so much that i barely had anything to do but show up. i cannot express my gratitude enough.

another group of major helpers are my friend Sarah, her family and especially her dad. i met Sarah in 2007 when i signed up for baby boot camp.  sarah was our fearless leader and she watched avery slowly struggle to meet milestones and when she was diagnosed she asked what she could do.  i will never forget the moment i was at the gym and i read her email saying "we want to organize a walk or a run for avery" i burst into tears. it was literally that email that got me into chairing the strollathon. and she has been there every year-with her husband and three cute kids in their strollathon shirts.  her dad too, with tables and chairs from his church. ready and willing to help.  always. her dad even helped me organize a family picnic one spring and brought dozens of helpers with donated food.  it was unreal. and they just keep coming back. sarah even warmed us up this year.  again, so thankful.

my photographer and non stop dedicated clinic volunteer Debbie who blows me away every time i see her is also a huge piece of the puzzle. she works her butt off.  she bought a ladder just for getting good pics at the stroll. i mean. 

this year i roped in a mom new to the area, but not new to rett.  Kelly offered to take over the raffle and she ran with it.  i was so impressed with what she pulled together-and how organized it was and how gorgeous.  she is one amazing lady and i owe her at least a dinner and drinks for sure. she added a huge part to the stroll this year and i know next year will try to outdo herself-although im not sure that is possible.

our sponsors-it isnt easy to just rip a check out of that checkbook for 1000 or 500 bucks but you did it. and sure you get on our cute t shirts and our banners but you dont do it for that and for that i thank you.  you are making a huge difference in my daughters life.  in a lots of daughters' lives. zimmer, parkers crazy cookies, bogey girl gold, wellington foods, capes for heroes, L&L glass, clif bar and Convaid-thank you.

thanks also must go to Paige and Jesse for everything i do that is rett related-paige was my first rett contact after the diagnosis who was 10 minutes away and happened to do family support for IRSF.  they started katies clinic where I now work and Paige was the one who said to me in 2009 "want to help with a strollathon?".  they are always there in the background quietly helping with warm smiles on their faces and just get things done like no one else. they do so much and ask for nothing in return. damn i owe them a few dinners and drinks.

the rett families that make the trek. from everywhere. you show up, you fundraise. you make shirts. you support each other.  what you do by showing up is so huge. because if you are a new family there is a veteran family there to help, and if you are a veteran family-there is a new family looking up to you.

our friends and family that show up every year, team little goose--i cant even type that without crying.  it seems like a small thing, im sure to them. but when i have that mic in my hand and im nervous as hell to make some sort of speech and i look out and see them-everywhere i look? it takes my breath away. it truly does. you guys are there to support, to buy raffle tickets, to donate. but the thing that means the most is your presence. truly.  and i love it. it means so much to see your faces there, pulling wagons full of water, wearing your orange hat, pushing strollers and carrying newborns. i had so many first timers this year and so many returns. each of you mean just as much to us whether its your first or fourth.

the crazy part is that the weekend looms over me as it approaches; it involves clinic on Friday (typically we see 4 patients and on this clinic day we usually see 6-7!) from 9-7, then study appts on saturday from 6:45am till 6pm plus and evening program... then sunday 7am, Avery's appointment and then off to the stroll.  it is a lot. but that saturday morning when i wake up im energized, then i show up at CHRCO and see our families there ready to be seen and paige shows up with bagels and our volunteers show up and suddenly im super energized and then just like that-it is over. it goes by so fast and it is all so fantastic. so fantastic.

this year i thought: there is no way i would be doing something this meaningful if it wasnt for avery and rett. no way. i would be sitting on the couch watching football not realizing how lucky i was.  i said it outloud this year-this has been a blessing-and it is still weird for me to say that. but it has changed our lives and the lives around us for the better.  so weird, but so true.

Tuesday, October 8, 2013

change, changes, changing.


the theme of the past month or so has been acceptance-otherwise known as "who am i right now?" because I have changed so much.  it has been this subtle thing, slowly creeping up on me.  not fighting it, taking Avery out more, wanting to try dinners out with the kids...so many things. and it isnt her that has changed-its me.  its time.  im used to it and i accept it. i really do.

wait, what?

i know, it is nuts. 

and it isnt only me.  my good friend Colleen is changing too.  She writes about it here.  im loving the shift. in both of us. it isnt perfect, and might not last forever, but im loving it for now.

since my last post, i have been so so caught up with the planning for the strollathon and the study that i just havent had a moment to be.  not really a moment. my mind has been racing with what have i forgotten, who do i need to contact.  no-seriously, what have i forgotten?  i was also feeling a little relaxed, too relaxed that I was convinced i was missing something huge.  i wasnt.  We had a very busy and successful clinic on Friday with three new families and two follow ups. I left there at 7pm-partially because I locked myself out twice, (but thats another story).  I was at CHO at 6:45 the next morning to begin the very full day of checking in families that have become like family to me. that night i headed to the hyatt house to meet up with the families for some informal visiting. I knew there would be other siblings there and invited Red to come and to bring the kids. in the past this would have stressed me out so much.  but there they were and Avery was yelling and happy and running all over and nolan was playing with siblings and having a blast and i was good with all of it.

the next day i did it again, up early and off to the hospital to get day two of the study started.  exhausted doesnt even begin to describe. then the nerves for the Stroll set in. Avery came in and had her appointment and then i was off to the park.  then just like that it was all over.  it was awesome. i was able to speak on the microphone-unlike last year.  our friends and family showed up and new families showed up and fun was had.  we had a fantastic raffle, great volunteers and perfect weather.

colleen was there and she was wearing sequins.  i was wearing a t shirt. both huge moves for each of us.

im not sure proud is the right word...but im proud of us.  of all of us.  for settling in and getting comfortable. not giving up but pushing through.  and making things happen.  Colleens youngest asked her on the way home from the Strollathon on sunday if they had "changed the world".  yes they have.  we have.  and we will continue to.  want to know something even cooler?  check this out: http://www.gofundme.com/curerett
you can change the world, too.