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Sunday, December 29, 2013

december

i got sick right before thanksgiving and maintained an annoying cold/cough for about a month.  maybe that is part of why i havent posted here in over a month, maybe not.

thanksgiving was spent with family a few days before and with friends the day of. a perfect mix. i was on a champagne and motrin diet that week due to my sore throat and not wanting to miss the mashed potatoes. that lasted well into december-but it got better and i pressed on.

started the month off with an annual trip to the outlets in napa with my girls.  shopping, champagne and lunch.  no better way to kick off the holiday season.

Boston training officially started-albeit a rough start, due to not feeling well for so long.  training has taken another recent hit due to the holidays, time off, sitters-every excuse in the book basically.  back to work this week for sure.

in the meantime we had dinners with friends, went to a great holiday cocktail party, played a super fun nine holes with two of my favorite ladies, went to a holiday boutique, met up with a childhood friend, had the kids school conferences, listened in on a conference call with well known neurologists, and went to another holiday boutique fundraiser for Children's (which also doubled as a great day with some amazing ladies in the city at the ritz plus dinner out and then dancing).

then we took the kids to dinner with another family and it was a total success. with avery. yeah.  i know. then i took avery to a cookie exchange at her second cousins and it was a total success.  right?  seriously.  many many little girls the same age as Avery and not a tear from my eye.

there were girls' nights, playgroups, and 3rd birthday parties.
this past week has been nothing short of epic.

on the 23rd we had our third annual dinner on christmas eve eve with great friends. on christmas eve we hosted here again-family and some friends for drinks and dinner and cheer.  we swapped gifts and played games and laughed so hard we cried.  the kids had a blast and santa even showed up. christmas day was great.  the kids loved it, we made and devoured crepes like i did when i was a kid. then we spent the evening with family and just had a blast. avery's second cousin who is in 5th grade asked all kinds of cool questions about avery and before I knew it she was asking her yes no questions about music.  we were dying laughing because she kept saying "no" to "do you like mumford and sons?" she thought it was hysterical and it was.

then on the 26th we joined some friends at zoo lights at the oakland zoo. with the kids of course. and it was incredible.  avery loved it.  loved. it felt so amazingly normal and awesome.  Nolan saying things like "look goosey, look at all the lights!".  we put her on the car ride with the other kids and she loved it. the carousel? whoa.  never seen those dimples so deep.

the day after that we packed up and left for a weekend in tahoe.  we went with good friends who have a son the same age as nolan and a younger daughter.  we made chili, played dominoes, refereed kid fights, sledded, built fires, drank champagne out of tiny glasses, laughed and ate and laughed and ate. on the way home we all stopped at the Scandia Family Fun Center-this place right off the freeway-mini golf, go karts, batting cages and an arcade.  We ate lunch there and played 18 mini holes of golf. and we had a total blast. total.

im still stunned that it IS GETTING EASIER.  it IS. not to say there arent still sad moments, and frustration-there are. but....there has been a lot of good this year.  so much.  and Im so looking forward to 2014 because there will be so much more.
checking out the turtles

Rarrrrrrrrr!

reptile house

grossest dinner ever in the cafe!

i mean.

riding the cars with Jacob and little Avery

really?  sledding?

seriously, mom?

this was the best we could get.




tech kids


this was my workout for the day

she wears the gear well-even while sleeping sitting up


buds on a nature walk

home bound

fun stop at scandia!

he did get a hole in one!

lovies.


Wednesday, November 20, 2013

the best company

many of you know that i will be returning to boston to finish what i started in april 2014 for the 118th boston marathon.  that in and of itself is exciting.  there are 10 of us returning with BAA bibs (given to us as invitational entries due to the terrorist attacks in 2013) and 15 with Team Rett bibs.  25 of us.  im so excited to go back.  it will be so emotional, so fulfilling, so triumphant. i knew several of the team rett runners last year because they were also rett parents.  one was a close friend-she actually finished the race (3:40:07!!) and is not returning in 2014.  but the others i didnt know.  and so i turned to facebook to get to know them.  i started a page for us-invited everyone that was on the team and also on facebook to join and introduce themselves. we shared what races we had done, our training plans, our connection to team rett and just got to know each other-as well as you can on social media. we cheered each other on as we went on our training runs, did smaller races and fretted over blisters and chafing and shoes and armbands. many days i would post as i headed out for a long run-dreading it. and i would get a response like "just let it happen, enjoy the beauty around you" and it would work. it would be my mantra through my run.

then the day came where we were to meet in person-the day before the race at the home of a wonderful woman and rett mom, Maria.  we met and hugged and chatted. it felt good to have gotten to know many of my team mates prior to that day-the ice had already been broken and we already felt like a family.

then the events of the day unfolded and we connected via that page. got in touch, reported who we had heard from who was ok.  thankfully we all were physically fine. and our family bonded even closer.

since april we have kept posting on the page and recently have just invited our newest team members to the page.  one of whom is my husband!  the best company for a marathon-especially one we are running in honor of goose. 

we start our training in about 2 weeks.  it will take some serious coordination but im so excited to go on this journey with Red.  he is too. 
the countdown is on.  151 days!!

Thursday, November 14, 2013

and now for something completely different.

something strange happened on saturday and i didnt even realize it till sunday. 
it went like this: we woke up and red went on a run, i hung with the kids and we had breakfast.  nolan was nursing a sore throat and a fever so we took his temp (normal) and laid low.  when red returned from his run he got ready to head to the Cal game.  i decided to go to gramma's with the kids.  all the cousins were there-we ate lunch, we relaxed, had a couple beers. the kids ran around and fought over hats and balls.  they helped the yard guy dig holes and cut branches.  it was a nice lazy saturday. around 3:30 nolan started to feel terrible again and we packed it in and went home.  Red came home not too long after we arrived and we just had a lazy night in.

sunday we woke up and had to cancel some plans (a bday party and a casual dinner date with friends) due to Nolan's fever being back up to 101.  we hung around the house, got lunch, rested, organized.  nothing special.

im not sure when it was that it hit me:

saturday was our four year anniversary of avery's diagnosis. and i totally forgot. completely.

funny thing is i remembered on Friday.  at clinic I even mentioned to people that the next day was our 4 year anniversary.  and then I spaced.  and Im glad i did. and i'm shocked at the same time. when you get the diagnosis-any diagnosis, i imagine it is tough to forget that date-youll always have it on the tip of your tongue and can tell anyone anytime those numbers. but it doesnt mean you have to dwell on it. or dread it.  or even acknowledge it.

i think the only reason i do acknowledge it is to measure just how far we have come. and we have come a long way.

Saturday, November 9, 2013

the tough times and good friends

my friend colleen over at Adventures in Rettland asked me to guest post on her blog this month-the topic was thankfulness/gratitude-here is what I wrote:

suddenly it is november. 
i swear i just put away the christmas decorations.  time certainly does fly.
november is probably one of my favorite months-especially in California with the weather we are so lucky to have. but also because of thanksgiving, family time, amazingly colored leaves. it is a time to give thanks, and reflect on the year that just flashed before our eyes.
i think i’m thankful everyday-at least subconsciously.  I know it is pretty amazing that I wake up each morning and can swing my legs out from under the covers and walk toward the coffee maker. i know how lucky i am to have a husband and two kids under my roof who drive me crazy, make me laugh, and love me unconditionally. i have food, a car that works, a job that fulfills and friends and family that i can turn to in tough times.

tough times.  i’m really thankful for those. honestly.
grade school was tough, I was picked on (yeah we all were but anyone else have their entire fourth grade class in a club called the I Hate Erica Club?).
in high school i made some poor choices that took me down some hard roads.
college: academic suspension after my freshman year. (I begged the Dean to let me come back and he did-ended up with all A’s and B’s my last two years).
had some majorly huge falling outs with dear friends along the way. i have suffered with minor anxiety and depression off and on since high school.
my parents both died when i was relatively young-my dad when I was 27, my mom when I was 33.
two years after my mom died, Avery was diagnosed.
some of this I had to get through alone, but most was made better by my friends.  all of it shaped me into the person i am today-strong, a fighter, imperfect.  so much good has fallen into my lap because of the bad.
and the friends? oh the friends. new and old. i have learned so much from my them-about who I am, what I believe, what I cherish. my friends take me for who I am.  they know my deepest secrets and insecurities and they build me up and choose to stick by me. I have friends that encourage me to be my true self-to show my weaknesses, to be vulnerable.  they give me the space to do just that.  they call me out when im being an asshole, cheer me on, and hold my hand as my tears fall.
they laugh-at me, at themselves, at life.  they share honestly and openly in that perfect moment when it is ok to let go.  i wait for those moments.  those are the moments when you feel most alive aren’t they?  when a friend trusts you enough to look at you and say “i’m scared” or “i’m sad” or “i’m so proud of myself! I cannot believe i did it!”.  that -vulnerability- it is really what life is all about.
i wonder a lot if i would be this person had all those unfortunate incidents not occurred in my life.  i can honestly say that I wouldn’t.  i know it. you gotta have some tough in your life to really appreciate the easy.  otherwise the easy stuff becomes boring and can be taken for granted and you never see the beauty that comes with pain.
As my wise friend Colleen said “I feel like I have been given a front row seat to the most beautiful show on earth”. (i totally butchered that and might have left out an expletive…but you get my drift). either way she is right.
so i’m thankful for the tough times.  all of them. and my friends and family who have been, are, and will be there for me when another tough thing is thrown my way.

Friday, November 1, 2013

halloween 2013

this year has just been incredible.
last night was no exception-hell, all day was fantastic.
I sent Avery to school in her disco get up-go go boots and all and hoped for the best. and it was.
Red and I went to the parade-finally just one parade to go to now that both kids are at the same school. 
We are so lucky we could both be there. And Avery's smile was the best evidence of that.  she was in her glory.  they played Saturday Night Fever for her class when they walked around the blacktop. perfect. she smiled the whole way walking with her buddy Alexa and Miss Heather her aide (who is so much more than just her aide).
We snapped some pics and then we both had to head back to work.
the past few years we have been lucky enough to be invited to someone else's home for trick or treating but this year people were doing their own things and so we followed suit. We invited Reds siblings and the kids cousins over for pizza and trick or treating.  I raced home from work, stopped at the store for some last minute stuff and came home to find two happy kids ready to get candy. Avery was pumped, Nolan was counting the minutes till it got dark.  Everyone arrived and it was this awesome level of chaos as we prepared to leave the house.  We met up with our neighbors across the street and their friends and hit the street. Nolan was off and running-so independent and fearless.
Red was with Aves the whole time.  He carefully guided her up to each door-usually after the big crowd of little ones-to help her say trick or treat.  He might say to them "Avery cant talk but she sure loves candy" and honestly each one of our neighbors was so sweet. They would hold out their bowl for her to choose and then we would help her or say "oh she cant really use her hands" and grab a candy for her.  This was our first time trick or treating in our own neighborhood and we honestly dont know too many of the neighbors.  I feel like writing each one a note to thank them for how special they all made it.
We were nearing the end of the night and we approached a house. Two of the littler girls were right up at the candy bowl and were each helping themselves, again and again-and again while Avery stood behind them with Red and his mom.  Finally we said "ok girls, leave some for Avery!" and they walked off-the bowl was empty. The nice woman said "hang on honey let me get you some more choices" and came back.  She knelt down in front of Aves and said "here you go sweetie", holding out the bowl.  Avery looked at her and looked at the bowl and then bam.  She reached in and scored not one, but two pieces of candy.  she held them up triumphantly in the air as we all burst into a cheer.  It was pure magic.  The homeowners got it.  they just did.  Then Avery tried again but this time she went in too hard and knocked the entire bowl on the ground and it was hilarious.  Especially to Avery. Im so glad I had my camera and I captured the moment as she is looking at her Daddy with just a face full of joy.  She literally skipped down the steps and out onto the street ready for more. As I walked down to the street my neighbor was there and had seen the whole thing-she looked at me and said "that was incredible-I just got the chills!" and I told her I wasnt sure why I wasnt crying because it was so awesome. (Im crying now).
Avery tends to miss out on stuff because of her medications and her schedule but Im learning that there can be exceptions made and she can stay up till 9 on a school night for a special occasion and that it is totally worth it in the end.  Im so proud of her.  So proud to be her mom.




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. 

Wednesday, September 18, 2013

it takes baby steps

im about an hour out from avery's latest iep addendum meeting.  one i called on purpose-out of turn-off schedule. with all my iep experience, i surprised myself calling the meeting.  no one likes an iep.  no one.  they are typically terrible: you sit on one side of a huge table in a decrepit conference room and listen while professionals tell you where you child is lacking, what she cant do, what she hasnt made progress on, that they are STILL working on colors in 2nd grade, etc.  it is terrible.  terrible. 

so why would i ask to do this?  ieps are scheduled on an annual basis and for avery they happen in March or April.  the end of the school year.  not the best timing.  so over the summer i emailed the principal and asked for an iep at the beginning of the year. i asked because i wanted to explore the options of getting avery some more time in the general ed classroom.  last spring (basically from Jan-June) she spent about 20 min on tues and thurs in the regular ed first grade class.  they usually had her go in and "read" a story for the class using her step by step button.  it was a good baby step but not true inclusion.

so it took me some time but after going to the irsf conference in June and hearing more about how well some girls with rett are included in regular ed settings, i was ready to push a little.  our principal agreed to get something on the calendar as soon as possible. in the meantime, at back to school night i found out that the same teacher that had avery come to her 1st grade reg ed class last year is now teaching 2nd grade.  what a win.  i knew she would be up for having avery again.  i hoped.

we met today. in avery's SDC classroom.  the gen ed teacher walked in along with averys new SLP and her OT.  Her SDC teacher was there and we were joined by the principal. we are so lucky to have the principal we have.  she has a background in special ed and she gets it.  she knows the kids so when she comes to your iep, she has something to offer.  i ran into her in the office on my way in and she seemed a little grumpy so i wasnt sure what to expect.  the meeting started off with asking me what i want the outcome to be. who knows what i said.  i blabbed on and on about how smart she is and how in there she is and how is is quite possible that in 3-5 years she could be on some new meds that might change things a ton, blah blah blah. 

it seemed things would not be going quite my way b/c there was sort of this focus on "how will we accommodate" and "extra time" and "contract hours".  but then i said something like "look, i dont really care how its done but i just know its a win win situation and I just want her exposed and i want her talking with some typical peers with her device and i want her to have friends and i want her to learn what all the other kids are learning whether or not she can show us what she has learned and i want her succeed but if she doesnt then she doesnt" and the principal cut me off with something like "she cant really fail in this situation" and then something awesome like "they can work in small groups and chat about a book they are reading" and "even if she doesnt look like she is involved she is ABSORBING it" and at least four other really cool things like that.  Basically what i have been saying all along-just put it in her head-dont expect it to come out!just know it is going in! And she gets that. 

so the outcome was this: i will make a brief presentation with her sdc teacher (while the principal covers the sdc class!) to the 2nd grade class (7 of the students in the class know her from her time in this teachers class last year) about Avery and Rett syndrome and then after that she will be heading to the regular 2nd grade four days a week for at least 30 minutes during instructional time with the goal being at least an hour on each of those four days. the principal also said she wants to make sure avery has a permanent spot in the class so she isnt lugging in all this stuff everyday. i cried. happy tears. i know it doesnt seem like much, but it is a lot.  there was a lot of "we arent going to pull her out at her first squawk" and "we will give her pently of time to adjust" and "what sensory items will she need" and im pumped.

oh and her new SLP?  just out of grad school and get this, she has worked with a girl with rett before!
it is happening.  this is just the beginning. 

Monday, September 16, 2013

how a simple etsy transaction made my month

i just hosted a bridal shower for my soon to be sister in law with my other two sisters in law.  we had a lot of help from a good friend of mine and it was all coming together nicely. because the happy couple had met at a place called the horseshoe and our theme was a little rustic, i decided to try to find some kind of horseshoe decoration for the tables.  i found a great etsy shop called LuckyGoatDesigns.  she had these adorable pony horseshoes with tags that could be custom stamped with anything really.  we chose their last name, est 2013, lucky in love. right after ordering i started looking at her other items (pendants, rings, etc) and saw she made running charms too. basically a little washer stamped with a message that can be tied to your shoelaces. some examples had messages like "run mama! 13.1" or "run sara! 26.2".  so cute.  then i saw the boston ones. in the description it said this:

This running charm was inspired by awesome customer, Lyndsay, who was searching for a way to pay tribute to the Boston Marathon tragedy.

This Boston Marathon running charm will say "Boston 2013" and a heart symbol. All proceeds will go towards the charity "The One Fund Boston" to support the marathon bombing victims. 

i immediately ordered two. one for me and one for lee ann (who had joined me in boston, and trained so hard and raised so much). i sent a note to the shop owner, beth, and shared with her that i had been there and mentioned that i ran on team rett and that my daughter has rett syndrome.  i also shared that i would be going back again in 2014 to finish this time.

a few days later i found an envelope from her in the mail.  inside were my two boston charms. and another one that simply said "team rett 2014".  she also added a note:
i may or may not have cried.

Wednesday, August 21, 2013

not fighting it

It is becoming more and more clear to me that instead of fighting against rett syndrome, I'm working with it.  I'm beginning to truly accept it.  To truly accept Avery; and myself as her mom. 

I have written before how I am not the "me" I expected to be and how Avery isn't the daughter I expected (isn't it nuts that we even EXPECT anything from our children?).  It is hard to get used to the fact that your life isn't anywhere near what you thought it might be.  The life of a special needs mom is very different from that of a typical child.  I know because I am both.  All the things that come easily to Nolan have never been easy for Avery-some of those things she may never do.

On days when it is just Nolan and me, I always second guess myself (do I have everything?-diapers, wipes, sippy cup, medication, stroller, arm braces) and then I remember I don't NEED any of that for him.  I don't need anything. It is a foreign feeling for sure to be able to just pick up and go.
But I think over the past 6 or 7 years of dealing with Avery being "different" I have ingrained this silly thing in my head that keeps telling me "doing XYZ will be too hard with Avery".  Recently that is a voice that is getting quieter and quieter.

There has be a definite shift.  Its part me, part her.  She is growing up and I am too.  I wish there were a better way to describe it other than "getting used to it" but that is what I come up with every time.  She has not yet become the quieter, calmer girl everyone told me she would become as she got older but it doesn't always matter to me like it once did. We have been doing things with her that we might not have in the past and been getting pretty cool results. We still have our roadblocks and speed bumps and detours but we are more used to that now. 

Today it was just me and goose for a couple hours.  Typically I would think to myself-I cant go anywhere, I'm stuck here with nothing to do, its way too hard to take her out" but not today.  I took her the craft store and to the plant store. She yelled a little at both places but seemed to be enjoying the new spots.  We held hands and I just rubbed her little fingers with my thumb and thought about how lucky I am to be her mom. And when she yelled?  No one stared.  No one looked at us sideways.  Maybe they did, but I wasn't fighting it.

Sunday, July 28, 2013

firsts...with my second.

when we received averys diagnosis, i knew there were going to be "firsts" we would miss out on with her. and I thought we had already met them through Nolan for the most part. and then last week I took him to his first swim lesson. i wasnt prepared for it to be such a huge moment for me.

our neighbor has a grandson who is about Nolan's age and he was going to be visiting for the last two weeks or so of July.  his grandma asked me if Nolan might like to take a few swim lessons while he was in town and I thought sure-that would be great.  She was willing to take them both (because I would be at work) and I was pumped about it. the price was right and we went to visit and I was impressed. Nice new place, clean, all lessons.  sign me up.

So last saturday we headed out.  we get there early and wait for them to be called. lots of swim lessons are going on at all levels. it is packed.  the kids are so excited. so they get called and head off to their lane.  the grown ups are allowed to go in the pool area but most stay behind the glass and watch from afar. Red was home with Avery and he wanted some pictures and videos.  I wasnt happy with the videos I was getting from so far away so I went in to get closer. 

I sat in the plastic chair and pointed my phone towards their lane.  I took a few photos and a couple videos and it just hit me. this swell of pride and the tears popped into my eyes. they just popped there! and I thought "this is one of those moments. the ones that erase all the crap and the stress and the irritation of young kids" I was so proud. it was awesome to see him in there, following the directions so easily, so athletic. seeing how easy it is for him and how his brain just works. and instead of feeling shitty about never having that experience with Avery it just felt good.  I knew this moment was one of those moments that Ill never forget. It felt so amazing.

then it was over and he rinsed off and got dressed and went to the front desk to retrieve his ribbon.  We said goodbye to the neighbors and got in the car.  I asked him "Nolan what should we do with your ribbon?  It is your first one!" and you know what he said?  He said:  "I want to cut it in half and give half to sissy b/c she couldn't come to swim lessons". 

He will never ever know how he made that day even better with that comment. It all just came full circle. this theme of "getting easier". I am so fully aware that we never would have had that moment if Avery wasn't Avery.
nolan on the left.

Sunday, July 14, 2013

breathe

I had grand plans to meet up with our friends and take the kids to the Santa Cruz Beach Boardwalk sort of as a birthday present to goose. So we headed down Saturday morning and met with Colleen, Jared Claire and Chloe at their new place.  We got the tour and had a delicious lunch. Then we followed them to the Boardwalk.  As soon as we got there I was a little worried.  It was jammed. Traffic. Im looking around and realizing that this Boardwalk place is quite the event and a lot bigger than I had expected.  Nolan is pointing out rides and saying "im going on that!" and "Im NOT going on that!".

Colleen and Jared are just ahead of us and we are texting: no idea it would be like this-that parking lot just closed-sorry-etc,  Then Colleen calls me and says "so, this is nuts and I was wondering if you guys might want to go get ice cream?"

Heck yes. Take us to the ice cream place!

Nolan was super bummed.  Avery seemed pretty happy.  We apologized profusely.  Mom and Dad blew it by trying to hit the boardwalk at 2pm on a saturday.  Now we know.  Next time we will do it right.

We get to the ice cream place, order and find a great seat outside.  Avery was so sweet in her stroller-so happy to be fed chocolate sorbet with roasted home made marshmallow on top in the sun. We left there for the skate shop, the surf shop then a walk to the ocean.

it was breathtaking and breath making. Claire and Avery watched the surfers from up above and Nolanand Chloe went down the waves to see it up close.  The tide was in and we got sprayed a little.  Surfers everywhere. Nothing but blue skies. We had to head back but first a stop at the famous Verve for a coffee and some treats.  Can't tell you how cool it was to see Claire and Avery just hanging in their shades-with people that know Claire coming up and saying hi.  Nolan eating a huge brownie cookie-sharing with his sissy and my tiny delicious cappuccino.

We said our goodbyes and got back on the road and I felt good.  Like I could breathe.  Like life was just the way it was supposed to be.








Monday, July 8, 2013

its getting easier

Tomorrow Avery will be seven.
SEVEN.
every year (since her diagnosis) at her birthday I get nervous and sad and unsure.  unsure about what to do about a party, unsure about what to give her for presents  and sad about the fact that she will be one year older and still in diapers.
at four-i lost it. at five, we had a great huge pool party and she loved it. so did we. but I still cried.
at six, we were in tahoe-low key with some family-the pool all day then ice cream cake and a couple presents and it was close to perfect. but i was left with some guilt for not giving her a party.

this morning we took the kids to the zoo.  it was great.  we have recently inherited a Convaid
EZ Rider special needs stroller and it made such a huge difference. Avery loved it!  she was quiet and smiling with calm hands. then tonight we celebrated with close family at our house.  Avery had a great cake with purple flowers and butterflies on it and she was super excited to eat it.  I asked her if she wanted more cake or to open presents using my hands and she pointed to the "cake" hand!  Too funny.  We opened her great gifts: Nolan gave her a "special sister" bracelet and she got a "special daughter" bracelet from mom and dad along with a musical hello kitty jewelry box. She got loads of cute outfits too. I think she liked it all but really just wanted more cake. and feeding it to her didnt make me sad


as they say: the pain never really goes away, but it does get easier. 






her cake.

getting ready to blow out the candles

at the zoo!


Tuesday, July 2, 2013

this is the place...

i just spent five days surrounded by people who get it. 
it was fantastic, of course. it always is. always.
im back home and im left with so many feelings.
hope and gratitude top the list 
im grateful.
for the moms and the dads that traveled from far and wide (England, Canada, Alabama, California, Wisconsin) to attend conference to lean on others and to be leaned on
for the staff and volunteers at IRSF for dedicating days and weeks and months planning our sessions and our days and nights
for the researchers, nurses, geneticists, neurologists and therapists who CHOSE this as their path in life (rett fell in our laps against our will and they actually sought it out)
for the many new families that bravely showed up with a smile on their face trying to hide that subtle fear behind their eyes that seems so familiar
for the moms I have bonded with like no other
for the dads, the grandparents, the aunts and uncles
for the siblings that shared their deepest thoughts
but mostly for the girls (and boys) who smile and arent afraid and fight everyday.

and so we fight. we stand tall, we learn, we take notes, we share stories, we laugh and we cry
we can finally breathe and relax and share knowing smiles and "me too"'s and "i know what you mean!"'s.
and we go back home on planes and in cars and through delays and airport mishaps
but we do it with hope

hope

for a day that our girls can move their bodies with ease
for the moment when a scream becomes a word
when the seizures wane
when the breathing becomes regular
when they can taste their favorite food

we are so close because of all of this.
this is the place for hope.








Thursday, May 30, 2013

tooth fairy!

I made Nolan an appointment to see the dentist after he knocked his two front teeth loose this weekend.  We went in yesterday, they took xrays and it was clear that he had broken both roots and the teeth needed to come out. the two teeth next to the two middle ones were also a little loose. geez kid. 

So we made an appointment to come back and have them pulled later that day.  He was so excited!  what a nut.  So we went back and they explained to me what they would do and that it would be a pretty easy extraction since the teeth were so loose already.  They would give him some nitrous oxide and then apply some numbing gel and pull.  They also told me they would like him to go back without me.  I let him know I couldnt go with him and he said "why not?" and I said "Im not allowed" and he said "ok!"  so brave.  He went back and about 20 minutes later he came out with 2 less teeth.  He proudly smiled a very cute new toothless grin and showed me his teeth.  He didnt cry and they said he was very polite.  I was a proud mommy.  We got a balloon and went for froyo.  Nolan was very strict about keeping the gauze in his mouth and would pop it back in after each bite!  We stopped and got him some Motrin for when the numbness wore off and he was fine! 

He put his teeth under his pillow and at 3:26 this morning came running into our room yelling "mom! dad!  the tooth fairy came and she brought me a wallet! and an electric batman toothbrush!" It was pure innocence and I loved it.  When he saw the 2 dollar bills in the wallet he exclaimed "im RICH!"

Priceless.

before!

balloons in the waiting area-we love our dentist!

after!

taking out the gauze

and its back in!

the teeth!
Avery has lost like 8 teeth, the tooth fairy has come every time and she has not shown any interest in any of that.  I know it is not her fault and she would if she could but this experience with Nolan has made up for all of those missed ones with Goose.  these very typical very everyday moments are just so magnified and I love it.

Monday, May 27, 2013

its a big deal

its kind of a big deal to pack up the kids and drive for 5 hours and stay with friends in their home where we have never stayed before.  even though i know they REALLY do want us to stay in their house, I have second thoughts a few times and think maybe they don't really and we should get a hotel. then i remember they are our people and that they let us crash in their room at our first conference after meeting the the day prior. and they too have a daughter with rett syndrome.  they get it.

and so we go.

we left super early saturday morning so we could attend the main event-the 2nd Annual Paddle for Sorel-hosted by her parents-Megan and Chris-the friends we planned to stay with.  the drive down was pretty perfect.  Avery was VERY quiet, Nolan only got a little car sick (i dont think he will be playing games on the ipad in the car anymore).  We made it down in under 5 hours, got coffee, changed our clothes (in the car) and headed to the beach.

as soon as we get there i start seeing familiar faces.  nolan cannot wait to get out and get to the water.  we meet up with some friends in the parking lot and off nolan runs to get a juice box or chips or something and the next thing I know Red is pulling him from under the picnic table. he is crying.  there is blood and there is a tooth in a weird position. not quite sure what happened but he cut his lower lip pretty bad with his teeth and knocked the two front top ones pretty loose. lucky for us, Sorel's grandpa was there who happens to be a pediatrician.  i was thinking he might need stitches.  he didnt. and the teeth sort of popped back into position. in no time he was running in the sand splashing in the waves.  brave boy.  we are watching the teeth and ill likely get him in the dentist this week if i can.  he is excited for the possibility of the tooth fairy visiting but not so much the teeth coming out.

soon enough more and more rett families arrived, some I know well, some i had only met once or twice before and others we had never met.  i think there were 10 girls there total-all the same and all so different.  we mixed and mingled and chatted on a gorgeous santa barbara day and then we saw them coming. the paddlers-who had left a different beach at about 8:30 that morning were starting to make their way to shore.  We all went down to the water's edge to watch them come in.  a group of rett siblings were jumping in the waves, getting sandy and wet. laughing their little heads off. the grown ups were ready with cameras and one by one the paddlers arrived.  we cheered, we woo woo-ed, we clapped.  they made their way out of the waves and over the seaweed to hugs and fist bumps and high fives.  they had paddled for 9 or 10 or 11 miles on lay down paddle boards, a few stand up paddle boards and kayaks. in the ocean. pretty bad ass. but like Chris said-it's nothing compared to what our girls do every day.

we ate a great burger lunch with our rett family.  we bought raffle tickets. we joked and laughed and just felt at home.  Nolan made friends with one of Sorel's neighbors-an 11 year old angel of a young man.  im certain Nolan will remember him for the longest time. I will too.

Red took Nolan on a kayak ride after lunch and it was jut me and Avery by the time they were ready for the  raffle drawing.  we headed over with the other families and Chris and Megan spoke-thanked the volunteers, the paddlers, the donors.  he thanked the families that came from near and far (the UK!) and Megan thanked Chris and made all us moms cry with talk of the day that cure happens. Avery yelled the entire time.  after the first 10 or so items, avery was yelling louder and i never win raffles anyway so we walked over to get some water.  just as Im reaching into the cooler and heading back to our spot, i hear cheers-i hear my friends cheering.  i look up and they are all looking at me gesturing for me to come over.  im shocked!  i won? me?  and they are saying YES YOU WON THE GRAND PRIZE! THE SURFBOARD!

i won a surfboard?  wow!  we took some pics and im glad i didnt notice all the surf dudes glaring at me. im thinking what the heck am i going to do with a surfboard? how am i going to get this thing home?  its not just any surfboard-its a custom shaped joe bark board.  apparently joe bark is THE guy in the area and it is a pretty expensive board.  after lots of brainstorming, we decide we will leave it in SB and auction/raffle it off again and just donate what we get from that to the rett cause.

After that, red and nolan returned and we hung out a little longer.  we then headed to megan and chris' place.  another family (Colleen, Jared, Claire and Chloe) was also staying at their house-all of us piling into kids rooms with air mattresses and sleeping bags and pillows and blankets. some other families came and joined us for a pizza dinner, so did some neighbors.  i could not have been more comfortable or more comforting.  the siblings playing so well together, taking rides on the elevator, cooking smores, watching the Lorax. the parents talking about nothing and everything, wishing we could just stay in that moment forever.

Chris and Megan are the best hosts.  they say "make yourself at home" and they mean it. and we did.  i now know where they keep everything from toilet paper to trash bags. we all pitched in and made it work. it was loud and chaotic and so fun. we lasted as long as we could before people started to leave for home or hotel. we got the last of the kids to bed and hit the pillows ourselves.  Red and Chris stayed up a while longer by the fire. i heard some mumbling about a shooting cans with a pellet gun the next morning...

we woke up to Verve coffees specially prepared by Jared. and breakfast burritos from a place nearby.  the girls went bathing suit shopping (someone whose name starts with E forgot hers) and then headed to the neighborhood pool.  it is a pretty special neighborhood.  they seem to know everyone.  there are several families who have kids with special needs. it sort of felt like paradise. we took over at the pool with our screams and wheelchairs and hand mouthing and normalcy. it was wonderful.  we have all joked about moving to rett island one day and it sort of felt like we were there.

it was then time to head back-Nolan was beside himself with wanting to stay. we shared in his feelings. we were so happy we stayed with Meg and Chris and not in a hotel like my chicken self sort of wanted to do. i cant describe how good this was.we are so thankful for this community and we cannot wait to do it again next year. 
waiting for the paddlers!

goose loving life!

nolan and our new surfboard!

avery swimming with dad, in her happy place.

that is the lovely and loved Sorel.