The Robertson Family

This is hard but also easy?

2020-11-27T20:58:00.001-08:00

Well it’s been over two years since I’ve posted here,Avery has had three surgeries. The first in August of 2019. We decided to try this “cute” surgery to tether her spine. The hope was that as she grew, the tether would pull her spine straight as she grew. It didn’t work. We knew that might happen. So, in September of this year she had full spinal fusion. Nine hours. She lost a lot of blood. Was in icu for four days. The amazing care we received was insane. We came home. All good.

After getting home we link up with the rett clinic and check in via video.

Maybe a week later, I text Avery’s rett doctor (dr. Mary) and say she has a fever. Dr Mary advises us to go to the ER. Red and I decide to wait to the next morning. I take her in, they do blood work and yikes. Something is very wrong. They transport us to UCSF mission bay. We stay there for 14 days. They had to open her entire incision and wash out the infection. Avery will likely be on antibiotics forever.

This is all really hard. But every day I tell myself and everyone else-it could be worse. Ive accepted this. This is our life. Avery has literally given us so much.

But sometimes still I’m so sad. My beautiful girl is not doing all the things. She’s not having sleepovers, or mall trips or anything. I’m grateful we won’t deal with girl drama etc. but it kills me to watch her not participate. Avery is just like me (but stronger) and I try not to think about what she is missing. I just wish things were different. It’s really hard. And I try to be so strong. But sometimes I just can’t be. And I don’t wanna be the person who says “be grateful for what you have”...and I am sooooo grateful...but be GRATEFUL.

This is Rett

2018-05-07T20:16:00.003-07:00

These days, I rarely lament what has been lost. We have kind of gotten into a groove and are just "used to" this life now. We have experienced enough that we aren't afraid anymore of trying new things with her, venturing out to what might have been scary places.

I finished a book on the plane Friday that brought hot fast tears to my cheeks.

I started reading this book at least 6 months ago, and Ill go ahead an blame my kindle for the lag in finishing. I tend to forget what books I have purchased and are on the damn thing! It's also because I'm too tired or too busy most nights to nestle in and read.

Anyway. On a girls trip to Arizona in November, I finished an amazing book called It's Not Yet Dark, a beautiful memoir written via eye gaze by a man with a disease related to ALS. I read it because I'm a glutton for punishment and because my mom had ALS-it took her over 11 years ago at the age of 63. It was, of course, tough, at times to read but it was so positive and I highly recommend it. So I finish this book and my kindle says "others who bought this book also bought these terribly sad books". I pick one. I'm not sure I remember exactly why I picked it but I did. It was called Beyond The High Blue Air. It's a true story of a young man who suffers a traumatic brain injury snowboarding. He is alive but in a minimally conscious state. It is from his mothers point of view and it is heart wrenching. Absolutely heart wrenching. I finished it on another girls trip to Arizona....

Basically it tells a tale of this once vibrant, strong, healthy young man being thrust into this new world of care teams, indignity, and pain, all with no verbal communication but very real and clear emotions. (The young man dies-after a hard fight to help him end his life mercifully that failed.)

This is what it means to have Rett syndrome. Rett is a spectrum disorder (ranging from very mild with some language to very ill) and our daughter is mildly affected. She isn't in pain all the time, she doesn't suffer many indignities that I know of and isn't that medically involved. But, it does not change the fact that she has very real and clear emotions and is non verbal. This isn't to say she is quiet-because for the most part she is not. And it doesn't change the fact that she could in fact die in her sleep.

Lately, for at least the past 6-8 months, Avery has had almost daily crying spells. She used to never cry. Really, never. She is almost 12. Is it hormones? Is she sad about her life? Is she hungry? Is she thinking about something sad? I have no clue.

Yes, she has a communication device but surprise! It's not working well. And I'm also one of the lazy Rett moms who doesn't invest enough time and energy into programming and facilitating. I really am. I literally work at a Rett clinic and my daughter should be set. I'm lazy. I am. Working on it.

See, she has always been happy. Almost always. Except during regression. But since then, for sure. She loves music, family, parties, school, friends. She is just like me.

And at the same time this gorgeous girl of mine is like a toddler. We awaken in the middle of the night to her cries because her sheets are off and she is cold. She cannot pull her sheets over her. She might have a bug bite and cannot itch it. She might be thirsty but cant yell "mom I need a drink". I literally lift her out of bed in the morning and dress her and feed her every single bite of food. I brush her hair, I pick out her clothes, I brush her teeth, I HOPE I am making the right choices for her. I put her in the car and take her out. At almost 12 years old I change her diapers. It is so normal to me that I dare to think about how it feels for her.

She will be in middle school in the fall. I cant even. I have fought for her to go to her neighborhood school for the past three years. I want to keep her in elementary forever. The older she gets the less easy and in the "groove" this life is. At this point I'm wondering if middle school should be spent with me....

In 5 days we go to see Taylor Swift. This will be her 2nd time. Whole family going this time. We "chatted" about it tonight and she is clearly pumped. As am I. But I'm still sad. This is Rett.

ten

2016-07-07T22:41:00.002-07:00

Avery's third birthday was the last one she had before rett syndrome came into our lives. The post I wrote about it was so different from the one I wrote just one year later. At 3, I was worried people might notice she was different or quirky. We had a party with her preschool classmates and some friends. It went extremly well.

By the time she was 4, we had had the rett diagnosis for about 8 months. That post has a different feel to it. There is a sadness there and even some anger. We weren't having a party because there were no real "friends" to invite. I didn't want go through the motions for our friends kids because the differences between their kids and Avery were so very noticeable at that point. It would have been a gut punch so we skipped it and did a family party at our house.

But, her 5th birthday was a huge success. And after that it wasn't such a huge deal.

Ten, though? Ten is big.

Double digits. TEN.

But that isn't the only significance this birthday holds.
Soon after Avery was diagnosed, maybe a week or so after, I was lying in bed trying to sleep. My mind was racing with so may thoughts. Terrible sad thoughts. Then I had what I can only describe as a vision. I saw Avery as a 10 year old. No idea how I knew she was 10 but I did. She was ok, she was free, she was fine. She would be ok.

Maybe I hung on to that thinking we would have a "cure" by the time she was 10. Ok, I did hang on to that. I did. And no, we don't have a cure. But we have come so far! We have trials and research and amazing things and amazing people on our side. Things are moving quick. Way quick.

And you know what? We ARE ok. We truly are. And Avery? She is still a happy, giggly lady. For all her challenges, though they may be mild in the world of Rett, she is so resilient. She is so strong. She has taught us to be strong as well-to cherish every moment.

I can't wait to hug my goose tomorrow morning, to give her some presents. My ten year old goose. We will celebrate her with her friends and our family on Saturday at the pool of course. Sunday we will get her ears pierced. She is pumped. So are we. We have come so far. There is much to celebrate.

we are not "dealing with it"

2016-03-05T19:04:00.002-08:00

When your child is "different" you hear a lot weird comments. Most of the time they are well meant-sometimes not so much. I don't think I am alone in this. In fact, I know I am not.
I spoke to a friend of mine yesterday who also has a daughter with Rett. Her daughter is 28 and was my first introduction to Rett in September of 2001 when I started my job at the Regional Center. Avery was not even a twinkle in my eye then.
Anyway, fast forward 14 or so years and here we are both parents of a daughter with Rett. We are chatting after they met with our communication specialist in clinic. We reminisce about the diagnosis and how different it is now to hear those words "your daughter has rett syndrome". Back when her daughter was diagnosed, they were told to start planning her funeral-she would never make it past her teens. I mean can you imagine? We were told by that same doctor "sorry, she will likely have seizures and scoliosis, maybe a feeding tube- good luck with that" (not verbatim but thats the gist-oh and she referred to Avery as "the victim" I kid you not). Now, if parents get lucky with an educated physician, they are told about drug trials and reversals and hope.
So that is where is starts-dumb comments from Dr's. Then you get friends who say things like "better you than me" (well meaning but bad sounding), "at least you won't have to pay for college/wedding/prom" (idiotic) and then a lot of "how do you do it's". And then new friends that ask you incredulously "she goes to school?" (massive eye roll)
The only way to answer the how do you do it question is with this: "how do you not? its your kid"

Today we were at an event celebrating the life of a good friend of Red's who passed away 10 years ago from a brain tumor at age 29. I walk up to Red who is talking with the father of one of his friends who doesn't know us well. We have met before but we see them maybe once a year, if that. Turns out they are talking about Avery and how she is doing at school with half her day in regular ed. I walk up and say hello. This man looks at me and says something like "i can't believe everything you have had to deal with. that is heavy stuff. we were just talking about life and it was all great and then BOOM, it went downhill" I think he meant it to come out differently but it irked me.
I said to him "we are doing what anyone else would do" and then I said: "our lives are so much better with her in it" and he says "that is a nice thing to say" and I say "it's not a nice thing to say, it's the truth"
and it is. we aren't dealing with it. you deal with traffic, taxes, assholes, and bad weather. You don't deal with your kid who is disabled. you embrace, accept, love and have gratitude. and that should not be the exception, but the rule.

If I can do this, I can do anything.

2016-02-25T19:00:00.001-08:00

"If I can do this, I can do anything."

That's the motto of Achieve Tahoe, (Formerly Disabled sports USA Far West) a wonderful adaptive sports program in the Tahoe area. I know it is meant for the participants, but it applies to me as well.

I was beside myself with nerves when we showed up last weekend for Avery's ski lesson. I had visions of crying (me and Avery), nothing working, just an EPIC FAIL. When we called to schedule we wanted her to be in a sit down ski (bi-ski) but they were all reserved. We were placed on the wait list but were fourth. She would have to have a stand up lesson. I told the girl on the phone that I wasn't sure that would work with her balance and feeling unsteady, not to mention not being able to hold on to any thing adaptive (they told me they had a walker type thing they could try). I booked the lesson feeling very unsure. I called Red to tell him that we couldn't get the bi-ski and his first reaction was "cancel it". I said its too late! so we crossed our fingers, signed nolan up for a snowboarding camp and headed up to Tahoe.

We went ahead of time to rent our equipment. Getting ski boots on Avery was tough. But we did it and she took a few steps and seemed to be fine. We put her regular boots back on and walked over to the ski rental section. She started crying. She never ever cries. I think I had put her shoe on wrong and it hurt, but I still don't know exactly what it was. I was hoping it wasn't an omen of more tears to come.

Back to the cabin we go to meet up with friends and have dinner. Im a ball of nerves. Not only for Avery but for me-I hadn't been on skis for 13 years!

The next morning, Red and Nolan got up early to get him to camp. The rest of us slept in and ate pancakes and had coffee and enjoyed the morning. Finally it was time to get geared up.

We arrived at Achieve Tahoe about an hour early for the lesson (had to give ourselves extra time for traffic that didn't exist!). And we waited in the waiting area. Other families started to arrive and we exchanged that knowing smile.
The "its ok I get why your kid is making weird noises and knocking stuff over" look. We mostly got comments like: "wow she is excited!" because Avery had perma- smile and was loudly squealing. She was making me feel better about our choice for sure.

The time came and the instructors started filing in from their morning lessons. Our instructors found us, asked us if there was any thing they needed to know and literally went out and put her in her skis.
she was unsure at first. almost did the splits. looking at Kristin and Frederica like dude, what the hell are you doing to me. they took her to a spot at the base of the subway lift and started working on shuffling her feet, "walking" in skis.
red and I got ours on and watched. we got the feeling we were being stage 5 clingers and got on the lift to take a quick run.
We got on the lift and screamed down to Goose. We were still unsure. I was thinking "where the hell is the walker thing?" "how do they not get that she cannot ski standing up?".

We continued to ski, ending our runs with checking in with her. She took a lot of breaks. We asked a lot of questions. what aren't you using more equipment? We don't mean to try to do your jobs but....?

We were trapped in the 'wanting her to just get the quick feeling of skiing' headspace. they had more in mind. even as her parents, who advocate for least restrictive environment, wanted more equipment! what were we doing? it wasn't that we didn't have faith, we just didn't know what she could do. even though we literally have to convince people almost every day that she can move mountains if you just believe. It was a weird spot to be in.

Then we saw her go down a tiny portion of the bottom of the hill and I lost it. The happiest tears ever flew out of my eyes. Red got a great video of 15 seconds of her going "downhill" on her own with literally nothing but skis and boots. It was quite literally one of the top 5 moments of my life. truly.

Red had to go get nolan from the camp he was doing when her instructors told us they were going to take her up on the lift. We told them to be prepared for shaking, heavy breathing, arms going up in the air.

I went up ahead of them and got a video of her getting off the lift. She nailed it. Even Red fell getting off the lift once that day.

Kristin and Frederica got on either side of her and off they went. I tried to ski behind them with my phone recording, I dropped a glove and had to side step up halfway to get it, but I got a video of Avery taking her first run. In only skis.

I followed them down-they fell a few times. goose was getting tired and cold. I went up for one more run and on my way down I ran into Nolan and Red. I got to see nolan shred it up on his tiny snowboard. I took him on his first lift ride and we went down together.

We did something we never ever could have imagined doing. thanks to amazing people. VOLUNTEERS. amazing.

And, if we can do this-we can do ANYTHING.

Thank you Achieve Tahoe, we are already planning our next trip.

find out more here www.achievetahoe.org

thank you, david

2016-01-13T10:24:00.001-08:00

it's a bad habit, but the first thing i do when i wake up is grab my phone and look at emails and Facebook. i tell myself it helps me wake up.

Monday was no different. as i scrolled through Facebook, i saw the news that david bowie had died-just two days after his 69th birthday and the release of his new album-and album that was kept secret and now known to be a well choreographed "parting gift" to his fans.
my first thought was "please let this be a hoax", like that time I went to tell Red that we lost Willie Nelson but we really hadn't.

quickly i realized it was true and my thoughts turned to my brother. David has always been a huge bowie fan and made me one too. being 5 years older i alway looked up to him and thought i should probably like what he liked if i wanted to be cool. he is the reason i had a poster of The Cure next to my poster of Bon Jovi.

i texted him. he couldn't believe it. nor could i.

taking the kids to school we heard let's dance. i smiled a sad smile. i told the kids that we lost a great artist. Avery stayed home sick that day and I spent some time reading the various tributes that were being constantly posted. at the gym i watched a show on mtv and at each commercial break there was a tribute. i continued to text David to chat about some of the articles. he was still in shock.

last night i read yet another article and really started to feel it. I went to youtube and played Changes, then Heroes, then Blue Jean and the tears just started to spill out. it was a surprise to me until i realized why i was crying. those songs take me back to being 12 trying to impress my big brother by going to the mall with my friends and bringing him posters and books and anything bowie. i was trying to get him to see me as a peer and not a little sister. our five year gap was tough at that age. I was 12, he was 17-- but music was one thing we could bond over, even if just for the 3 minutes and 22 seconds of a video we watched together on MTV. (i honest vividly remember watching the video for Blue Jean with him and just thinking wow-never had I seen anything like it)

watching those videos took me back to that time and how hard i felt i had to try to get my big brother to see me. in those moments watching videos on MTV, i think he did.

the music brought me right back to the mid to late 80's and the relationship that wasn't really a thing with my big brother and i was sad about that -that we seemed to have two completely different lives. i think it also made me miss being a kid and having parents that were alive...and there were tough times had by both of us after he graduated from high school -things that we went through separately. but now-even though we are 3000 miles apart, we have never been closer.

David Bowie's music (and movies! labyrinth is one of my all time favorites) was such a huge part of the fabric of my life and i didn't actually realize it until last night. and that makes me sad--that we almost always won't realize the impact of people in our lives until they are gone.

My brother David had (and has) a huge impact on my life and i want him to know that. i want him to know that I am so proud if him and where he is in life today--A great dad to his kids, a great husband to his amazing wife and a successful realtor. He has always been one of the smartest, coolest people I have ever known with a heart of gold.

Thank you David, for introducing me to the rockstar that was David Bowie, who made me realize what a rockstar you have been in my life.

nine

2015-07-07T21:27:00.001-07:00

isn't it funny that we don't count the day of our birth as our first birth day? that we wait one whole year before we really celebrate? shouldn't the actual birth day count?

i remember so well the night before-as much as the day of. i have written about it almost every year. the food I ate, the forced contractions on the couch (that we still own and is still hanging in there) and trying to sleep that night knowing my life would change forever the next day.

nine is not my favorite number. i never liked odd numbers. avery will be nine tomorrow. she was diagnosed with rett syndrome on the ninth of November. nine is divisible by 3 and I hate three as well. i like things even. because i said so.

so of course it makes sense that I'm likely as excited tonight as I was back in 2006 the night before we met our goose. i was hopeful and giddy and excited and nervous and happy.

i cried so much as she turned 4-her first birthday with the rett diagnosis. i cried when she turned five-and not because she was going to kindergarten and growing up like she was supposed to. i think i stopped crying at her birthday last year.

but this year? it is so much better.
Avery has friends.
We are having a party and inviting her friends.
and i could cry over that.
except I'm too happy.
we have had parties for her with OUR friends. and our family. but never one with HER friends.
maybe it is just a few friends. not a ton. but it counts.
her gift from us is tickets to Taylor Swift in August (fine it is a gift to me too).
she is so happy.
Rett be damned.
Nine.

to blog or not to blog

2015-04-21T20:48:00.000-07:00

bear with me on this one. its been a while.

i went to my second Hozier show last week. it was amazing, more amazing than the first only because i was about 20 feet away this time and could see his every feature. i could see his fingers on the guitar and the sweat on his brow and the saliva jump from his mouth as he sang. i could see every emotion. i could see how he swept his hair behind his ear and the gratitude he felt for his audience.

know what else i could see? about 17 cell phones raised above the heads in front of me recording or instagramming or facebooking the entire show.
i wanted to take pictures too. and I did. i took three. but only one worked because my phone hates me*

but all the absent minded recording that was happening in front of me made me think. it made me a little sad. ive written about this before. about the theology class i took at GMU and the professor who said something very clever about how in sharing ones experiences we lose part of that experience. like the story a fisherman tells about the big fish he caught and how each time he tells it the fish is just that much bigger. it might make the story slightly more interesting for the listener but doesnt it make the story kind of suck for the teller? it does. there is something about experiencing something and just keeping it for you.

i swear to you the girl in front of me was literally yawning as she recorded songs from the show. Hozier is not yawn music-it is in the moment, emotional, beautifully written music. i urge you to see him live if you can (the opening band, well that is another story). but here was this girl recording it for recording sake so she could share it on her social media-but what did she get from it? what did she get from the show? did she feel the music, did she connect with the lyrics? i dont know.

im reading a book called "all the light we cannot see" by anthony doerr (just this week it was awarded the pulitzer for literature) and it is fabulous. (i guarantee you i thought this BEFORE it won the pulitzer). anyway, there is this line in the book that has stuck with me “Open your eyes and see what you can with them before they close forever.” I know, right?
deep.

oh, what is it that i am trying to say? if you know me you know I love social media. i will make a case FOR facebook (or most kinds of social sharing) any day. and im not going to stop using it anytime soon. its just that im taking stock lately. of my life and of what i want to share-what i feel is important to share-what i need to really share. all this to say
this is why i think its been a while.

*i posted that pic.

a new year

2015-01-13T19:59:00.003-08:00

it is hard to believe it has been nearly 6 weeks since I last posted here. i have thought a lot about why...no time, the crazy of the holidays, that i dont feel like i need this place as much as i once did. it is probably all of those things equally with a little bit of "things are kind of normal and good right now".

we had a great christmas and new years spent with family, old friends and new. christmas eve was as usual very special and chaotic and just happy. we celebrate here at our house as we have for the past who knows how many years. it is a nod to my parents-we always hosted christmas eve and my parents were always happy and there was a lot of laughing and great food and fun. it has been that way here at our cozy home for years and i love it. we have done many different meals but this year was the most fun i think. cracked crab, ham, salad and many yummy apps. my kids have 4 cousins to join them and run around like animals and its just the best.

new years eve we spent with some newer friends in the neighborhood (ok, fine the neighborhood we WANT to be in). more crab, yummy apps and lots of laughs. this past year has been a good one for friends. holding on to the amazing friendships we have made over the last 10 years of our marriage (and 14 years of dating) and now getting to know some of the most down to earth and fun families through Nolan, kindergarten and also Avery. It is so great to meet women at this age. Even though I still feel like I might blow it and they will see through me and realize Im not as awesome as I want to be-Im comfortable knowing that the me they are meeting is really the true me.

we have taken Avery more places this year than ever. she loves it. we do too. we took the kids to a japanese place here in town recently and it was a huge success. Red took Avery outside once because she got a little loud and the manager came over to me and said "dont worry! its ok!" -and he was right. we ordered Nolan some ice cream and the waitress asked if she should bring two-we said one is fine. She brought two anyway. Those tiny gestures are so huge to our family. they give us the courage to get out and do it again.

We changed up Avery's meds early December. She was weaned off Lexapro and started her on Buspar. We have noticed a major change. She has her moments-but she is no where near as loud as she was. This has made so many things so much easier for us as a family. I took the kids to the grocery store this evening and she yelled a couple times but other than that, I looked just like every other mom with two rowdy kids in tow. in fact, Nolan was way more obnoxious that Avery was.

I have started calling her "sweet sweet". i dont know when that started, but i know its because im seeing more of my sweet, smiley girl. there are more moments of me looking at her with a smile and reaching over to touch her face now-compared to before, in the dark days when i was gritting my teeth and taking her to her room.

more seasoned moms had told me this day would come-and while it is still really hard and trying and stressful-we are good right now.

Nolan is giving us a run for our money. still. it has been wonderful to see his academic growth since september. he can sort of read. he can do some math. but he cannot listen, is willful and spirited. its hard right now, but i think he will turn out just fine. (fingers crossed). he is equal parts wanting to help and pushing our buttons. he loves his sissy and i love my Nolan and mom time when it is quiet and snuggly and he says i love you mommy and i say love you nolan and i realize this wont last forever.

i didnt make any resolutions this year but I have given my self some goals. to just BE. to GIVE more. to be a better FRIEND, WIFE and MOM. its a new year, indeed.

thanksgiving and the blues

2014-11-29T18:36:00.000-08:00

we had another fabulous thanksgiving. food for days, great wine and our fabulous family. we hosted reds grandmother (Franny), his parents, his two brothers plus their wives and two nieces. we were just missing his sister and her family, and Barb of course.
i spent all day in the kitchen which is fine with me. it was a relaxing morning. then at 3 everyone started showing up. it was a gorgeous sunny 65 degree california day and we got to spend some time outside having yummy apps and playing catch. i got to speak to my 94 year old grandmother and we laughed so much about how she could have raised such a bossy daughter (my mom). im so thankful to still have her in my life and for her to still be so sharp. she is wonderful.
our dinner was awesome, even though i totally butchered the potatoes (turns out you have to mash them when they are piping hot!). Franny took on the gravy and did an amazing job on it. i love having my house filled with family. Avery does too. she is like her mommy that way-we love a party. especially with people we are comfortable with and love. we all went around and said something nice about the person to our right and it was beautiful. there were laughs and tears and hugs.
slowly, kids fell asleep and people left. Sarah and MT stayed the night and I spent the next day (almost all of it) cleaning dishes (i dont do dishes until company has left!) and listening to holiday music. i was full of holiday spirit.
then this morning, Nolan asked me to charge an old iPhone. when it came on he played around with it and then brought it to me asking how to get out of the voice memo screen. first i had to listen to them. they were all from 2010. most were avery screaming and crying. some were of her laughing and babbling. then i heard the one that got me. you can hear me in the background asking her to say "Daddy" and after a few tries, she says it. so clearly. i had forgotten what her voice sounded like and I burst into tears. i brought it to let Red listen and he got choked up as well and said he didnt want to hear it again-too hard. i posted it on FB and got so many sweet comments like "the day will come again when you hear it again!" and i know that is true but today has just been tough.
Red took Nolan ice skating with a buddy and Avery and I stayed home. I took her on an errand and took the long way home to just waste time. i drove near the movie theater which was a big mistake. families all together walking around downtown, going to the movies-things that are not impossible for us (well, maybe going to the movies) but are very difficult with her yelling. it makes me sad and i remember that the holidays are always a tough time for me. even though i look forward to them so so much, it creeps up on me that it just isnt the same without your own parents and and a kid who cant feed herself or open presents. but then i go back to the beginning of this post and i have so much to be thankful for. and a future that is truly so bright.

blog fog

2014-11-18T18:42:00.001-08:00

so much to share. but i have been in a fog of sorts. from halloween to clinical trials and having to hire a new sitter/behavioral therapist my mind has been in a fog of sorts.

im hopeful that Im coming out of that fog just in time for the holidays.

halloween was killer. way killer. rad. we trick or treated with some new-ish friends -parents of Nolans school buds just one hood over. we had a blast. the kids did too. its all about the kids right? i cant tell you how many moms I talked to after halloween who remarked that it was their all time favorite holiday and I wholeheartedly agree! it took us some time to get there-but once we got bold a few years ago and took Avery with us and it worked, everything changed. We had such a great night and are so thankful for new friends and our awesome sitter Stephanie (who came trick or treating with us and who when I asked her if she might want to come her response was omg, id love to!)

we went to countless houses. people just "got" Avery when we had to encourage her to grab some candy and when she missed people said "oh good try -try again!" and there was excitement and care in their voices. Nolan was running ahead as usual and we tried our best to keep up with the group. At one point i hear a small voice in the dark "I just saw Avery!" and another: "you did? I didnt know she was trick or treating?!" and a third: "of COURSE she is!!!!" i stopped in my tracks. I said are you guys talking about Avery Robertson!? and they said yeah! It was just some typical third graders that knew her from her tiny bit of mainstreaming. No big deal (HUGE deal). their mom comes over and say hi i emailed you last year remember? yes, I do. good people.

After trick or treating we went back to our friends place and then over to a newish neighbor's party. Turned out their daughter also knew avery and the smile on her face when I asked her about my girl was nothing short of extraordinary. her mom and I talked and she knew a lot about Avery too and we cried and we hugged. amazing. killer. rad.

on november 5th i was invited to witness my friends colleen and jared renew their vows just on the even of their 15th wedding anniversary. they have been through hell and back with rett and other life challenges and in their words it was a miracle they made it this far. about 8 of us stood on a cliff and saw true strength and true love make new promises to each other. it was an honor to have been there. we ended the morning with fish tacos and good conversation. not a bad way to spend a wednesday.

just 6 days later big news hit the rett world. i sat at work in front of my computer waiting and watching for the news we heard would come. trial news. would it be good or bad? we thought good for sure-but didnt know. and then there it was. this LINK explains it. basically it means that on Monday there was not a proven treatment for Rett and on Tuesday there was. I was flooded with emotions that are all coming back again as I type this. All the Strollathons and marathons and lemonade stands and studies and clinics-all we have had a hand in-made this happen. the families and girls that took part in this trial are my heroes. rettsyndrome.org and the scientists and the researchers and physicians and Neuren are all heroes to me.

No this drug is not yet approved by the FDA, no it has not been tested in the pediatric world yet but omg the hope that this trial provides. as i was reading the news, it dawned on me that we once again missed Avery's diagnosis day. it had been two days earlier, the 9th. i couldnt believe it. 5 years almost to the day of diagnosis and im reading there is a possible treatment? mind blowing. and all i could think about was that moment i shared with Larry Glass, CEO at Neuren when he said to me "not IF, WHEN." and when is now. it is NOW and the NEAR future.

I went straight to the bar after work alone, after trying to get anyone to meet up and failing. I had a couple cocktails and then went home to pop the champagne. Red was home by then and it was Stephanie's last day. So we all had a glass. I told Avery the news and she literally went weak in the knees. and then went down to the ground. she gets it. yes she does.

I ended the week with a double date with the awesome clinic Nurse Practitioner Shawna and her hubby on Thursday night and with a crazy chaotic clinic on Friday. Got to end the day at a dinner in Walnut Creek with THREE neurologists, an RN and the Dr Mary Jones. Not too shabby.

Oh and the sitter thing. It is really hard to get a good one. Especially after years of a great one. And after a couple non starts and one failed hire, our new girl starts tomorrow. cross your fingers.
but i feel the fog receding.

#notspeaking

2014-10-29T19:16:00.001-07:00

there are only a couple days left in rett syndrome awareness month-and it is game 7 of the world series-and since I can only pace so much, i came here to keep myself busy.

this past weekend i went on my now annual trip to healdsburg for the healdsburg half marathon. this was my third time. i only signed up for it in 2012 b/c it was the perfect halfway point between me and Boston and I still didnt know if I would get spot on team rett so i thought might as well do a half while i wait. i recruited some friends, we rented a house and we became team boston or bust. it was a good idea. i trained well for it. i finished in 2:34:59 and was damn proud. the giants also happened to be playing in the WS that year as well and i have fantastic memories from that weekend. it was my first half, i was so nervous. i didnt want to make it about fundraising but wanted a slight rett connection so a couple of us had shirts that had a little something about rett on the back.

we went back in 2013 this time as the rett warriors. we had grand plans to dress like warriors (there is a costume contest) but they fell through. so did my plans of beating my time the year before. 2:36:07 this time. by then I had been to boston, almost finished but didnt because of the situation, and wasnt as worried about time. we did get shirts made that said I run because she cant on the front and more about rett syndrome.org on the back. but again, we had a great group of ladies, a great house and a fantastic time. two years in a row laying out in the yard post race in the sun with bubbly and hot tub. amazing.

this year we went again as the rett warriors. no shirts, no socks, no nothing. but we did have the #notspeaking kits though. and on friday night, over wine, i explained the plan. i read this to them
and they understood like they never could have before. friends that have known avery since birth had lightbulbs go off. new friends were touched. and on race day we wore our stickers and when no one asked we still gave out cards. we ran silently and there were tears shed. it brought us all closer to what it is like -even in only one aspect--to have rett. #wwyg?

be afraid...

2014-10-17T13:45:00.000-07:00

the kids were off from school today and the day crept up on me which means no child care. im literally counting down the moments till i get to leave and go to the office for a couple hours. nolan has a birthday party this afternoon and i realized that today was the only day to get a present for said birthday party. that means taking both kids to Target.

yikes.

so we packed up and went before lunch hoping it wouldnt be too packed and that we would get in and out quick. once we go there I put avery into the cart, not the seat area the big area. she is almost too big for that spot but today it worked. we made our way to the toy section and after a million "mom, come here's" we end in the Lego aisle (just where I had wanted to start but Nolan had other ideas). As we are moving our way down the aisle a woman looks at me and smiles and says Hi Im so and so and is this Avery? she explains that one of her daughters is in the class Avery is mainstreaming in this year and that she got the letter I sent in to go home with parents and its in her car right now and she read my blog and cried and cried. she then went on to say that her daughters also have ieps and she knows the struggle and would i want to get together for coffee? umm, id love that I say. i tell her to shoot me an email. she says she was just on the phone and she saw Avery and had to stop to say hi.

i swear everytime i think "i hate people" something like this happens. she changed my whole outlook and we actually had a decent and dare i say fun time at Target.

as we are headed back to the car, i see a woman stopped behind my car and then taking out her camera and taking a picture. and for a second i thought crap did I forget the placard? and then i realize she is taking a picture of the "october is rett syndrome awareness month" that is written on my back window. we pass as she realizes this is my car. she says is this your car? i say yes it is! she says my niece has rett syndrome-i am going to send this picture to my sister! she tells me who she is and I say i think we have spoken. i introduce her to the kids and she reaches over and sweetly touches avery on her shoulder, really looks and says hi to her.

i could have peed my pants. it was a trip to target that was meant to be. and I almost didnt go because i was afraid. but i recall a quote a wise friend recently shared: "be afraid, but do it anyway. live anyway!"

what would you give?

2014-09-30T20:29:00.000-07:00

i spent a good part of my childhood in california. was here from about a year old to just before I turned 8. then we moved to va beach. i have been back here in california for just about 14 years and every now and then I smell something that brings me right back to being 5 or 6 or 7 years old. there are plants here that arent in va. and every now and then i smell a fennel plant and im at mare island elementary playing house and making salad with weeds. that happened today.

and then a fleeting thought goes to my daughter. my avery-because she isnt doing what i did when i was her age. not even close. and even if she were, she cant tell me. she cannot speak. imagine that. really think about it....

crazy right? it is hard to think of even going an hour without speaking. so that is what I would give. im giving up speaking for at least one hour-while running a half marathon. my whole team is joining me and we hope to raise a ton of awareness and some cash to cure this thing.

so how does this not speaking thing work? we will wear a sticker that says ¨im not speaking for rett syndrome, ask me why!¨ and when they all ask, Ill hand them a card to direct them to www.rettland.org/notspeaking and hopefully they will be moved to give and share! #wwyg #notspeaking

rettland raises money to give to families that are participating in clinical trials. there are clinical trials! that in and of itself is unreal. the fact that rettland exists to help get the families that want to participate but might not otherwise be able to, is out of this world. it just blows my mind.

wanna have your mind blown? take part! go to rettland.org/notspeaking and donate, or order your kit to help the #notspeaking campaign. because -- what would YOU give?

people are awesome.

2014-09-02T19:18:00.001-07:00

ive been known to utter the phrase ¨i hate people¨. and maybe in traffic i still do. or while shopping in costco. but man people will surprise you and make you cry and lift you up when you least expect it.

in about six weeks im running the healdsburg half marathon for the third time with great friends. we have made it into a girls weekend. we rent a home up there and hot tub and drink champagne and talk and laugh and cry. this year it was my turn to organize the troops and find the house and send the checks. well i sent the final check a week or so ago and on saturday got a call from the owner. turns out i screwed up the part where you actually write out the words that describe the numbers in the little box. oops. so she let me know that she would shred the check and I could just mail another, no biggie. I let her know I was in SD for the holiday weekend but would get the new check out on tuesday first thing.

that night-after a lovely day on coronado island-i checked my email and there was this:

Hi Erica -
I wanted to let you know that I would like to reduce your rental fee by $500.00, of which I would ask that you please use towards your fundraising goals for Rett Syndrome. I stumbled upon an article and your family blog today, while trying to find your phone number this afternoon. I am so touched by your story, and the terrible disease your beautiful daughter is fighting. My children are my world; and as a mother I am so inspired by your strength and dedication to finding a cure.
Thank you for all that you are doing to raise awareness of Rett Syndrome, and for turning something so painful for your family into something positive in this world. My heart is with you. Thank you. And much admiration and congratulations for running the Boston Marathon, twice - I don't know you, but you are certainly my new hero. Sending love and many thanks....

i mean, right? I read it out loud to my roomies and we were all a ball of tears. so. even though traffic and costco trips are still somewhat unavoidable, people are awesome.

conflicted

2014-08-19T22:40:00.002-07:00

im conflicted. over ice.
of all things.

the ice bucket challenge, that has raised millions of dollars and tons of awareness for ALS, is all over the place.

every time I turn around i see a friend or a celebrity dumping ice water on their heads and doing it in the name of ALS.

almost as soon as it got big, the articles criticizing it were popping up too. saying it was narcissistic, wasting water, that no one was really donating anyway and no one says what ALS is in the videos...on and on and on.

and it pissed me off.

before rett syndrome became my cause, my cause was ALS. ALS killed my mom. my 63 year old vibrant, stylish and very full of life mom. killed her in the most terrifying way. she had symptoms way before her diagnosis, that were minor. as soon as she was diagnosed it went quickly. she lost the ability to speak, then to eat and in the end lost the ability to breathe. she was afraid. and 3000 miles away. my daughter was 7 months old.

less than three years later I had a new cause-rett syndrome. the ALS walk I had been participating in took the back burner and the Strollathon went to the front. my mom was gone, she wasnt coming back and I was desperate to try to save my daughter from the unknown. i dove in to rett syndrome head first and never really looked back. and now as Im typing this im realizing this ice bucket challenge has brought up a little guilt for that. for giving up on ALS, and on my mom.

im also guilty of something else. something else that is bothering me about the attention ALS is getting-- of being jealous of other causes and the attention they get. i know i have written about the feeling i get each october and i see pink everywhere-at my gym, on NFL uniforms and MLB bats. and I would think to myself-man, what if that was purple for rett syndrome? WHY doesnt rett get the attention it deserves!?

im looking at this with new eyes now.

this is the trend in the rett community--¨how can we get on this ice bucket thing?¨ ¨why didnt we think of this?¨ ¨I wont do it because I only want to give my money to rett syndrome!¨

and my unsolicited advice is this: give to whatever charity you want-do it by dumping ice over your head, running a marathon or just by clicking a button online. or have a fundraiser, invite your community and your friends and feel good about what you are doing, though it may feel small. things like this start small. start something.

and please be happy for the attention ALS is getting-because this money and awareness will make a big difference to someone elses mom one day. a day like this will come for rett too. people in the rett community ARE working hard-at this very moment- research in dark quiet labs, starting community clinics and traveling to trials and chairing strollathons.

we are all in this together. all causes are important because we are all human. so please dont get mad at me when i dump ice over my head sometime in the next few days. its for my mom. :)

fundRAZOR

2014-07-17T17:37:00.000-07:00

this
http://tinyurl.com/fundrazor
why?
because I dont want to sit around waiting... i want to be IN this. ALL in.
and because,
WHY NOT?

eight

2014-07-08T21:43:00.000-07:00

sometimes in the morning i go and snuggle with avery. those mornings are rare as she is usually already awake before anyone stomping around yelling in her room.

today i awoke to silence and crept in to see my birthday girl. how peaceful she was there in her bed with her new duvet cover (no more pink) -so cozy and so asleep. i had stayed in bed a bit longer than i should have and we were running behind for summer school. i tired to rouse her and nothing. she just shifted ever so slightly and kept her hands still and her eyes closed. i whispered to her "happy birthday goose" and let her stay.

i went to get nolan up and got my coffee and went back in to her. still so at peace and after one more failed attempt to wake her i decided to get in the covers with her. we could be late today.

nolan then came in so excited for her big day started to shake her and yell happy birthday! she opened her eyes and as the happy birthday wishes started to settle in she smiled so sweetly. a dimple popped when i mentioned we would open some presents tonight and have a family dinner celebration with cake on sunday.

i cant believe she is eight. i love watching her grow up. i love being able to still see that newborn face that has changed so much but really hasnt changed at all. here i sit on this same couch the night before she was born and many days and nights after with her on my lap (time for a new couch) and can see so clearly all that she has been through. all that we have watched slip away and the triumphs she has shared with us. but, i can now look back and see more good than bad.

and still...it has been over 5 years since i have heard avery say "mommy". i have no idea if she loves the new duvet cover or wants the old one back or if she even cares. i cant tell you if she has a favorite tv show or if she is dying to go to a movie. i want to know her better, know her secrets and wishes and hear her tell me im annoying or that im embarrassing.

one day.

for now, she is eight. and ill take the morning snuggles, the smiles and the dimples. forever.

#rettconference2014 (or was it #conference2014? or #rettsyndrome2014?)

2014-07-01T23:25:00.000-07:00

five years ago red and i went to our first family conference put on by IRSF. we were 6 months into this rett thing and literally knew like 2 people. we sat in the way back of the ballroom in colorado springs and listened attentively and took diligent notes and couldnt believe this was our life.

last night i got home from my 5th conference. where i felt as though i knew nearly everyone i saw and only sat up front. my note taking was a little sparse but the knowing head nods and tears that start in your throat and fly out of your eyes were many.

five years ago i listened to dr. percy talk about rett syndrome 101. i heard him speak about the types of things they were "looking into" as treatments for symptoms of rett. i heard a lot of "rett was reversed in a mouse but mice are very different than humans". i heard hope-and could reach for it.

this year was different. i heard dr percy speak about rett. i heard him speak about how far we have come so quickly. i saw the tears well up in his eyes as he thought about Dr Rett and the smile he might have on his face if he were here to see where we have come. (when i say "we" I mean the researchers/doctors/scientists etc!).

as the universe (or fate or destiny or whatever you choose) would have it, just as the scientific portion of the conference merged into the family portion, neuren pharmaceuticals announced that enrollment had been completed for the NNZ-2566 trial. and on the surface that seems like incredible news-as it is. but it gets better. it was just TWO years ago when I wrote about the conference highlights in New Orleans. When larry glass (CEO of Neuren) spoke to me and said "not maybe, WHEN", and when he spoke at our tribute dinner and exclaimed "im in!" When CSO of rettsyndrome.org/IRSF closed the conference with "my pledge to you, it will be done fast".

two short years ago. remember my "vision"? the one where Avery is a typical 10 year old? she will be 10 in two short years.
in-tense.

so my trip started late at SFO. i stopped at the restaurant for a burger and was seated at the same table where colleen and i sat on our way to conference in boston. i took it as a sign that things would be good. and they were. lucky for me even though i was in the middle seat for a red eye, my wine was free bc the seat ordering feature was broken. i also bought one of those totally geeky neck pillow things. i slept for about zero minutes on the shortest 4hour: 45min flight ever. i arrived at the hotel early. like 6:45am. and my good friend kori (she is cure rett) from across the pond was awake so I stormed her room and ended up staying there the rest of the time and Im sure I now owe her at least 467 dollars.

from there it gets a little blurry...there was sightseeing (white house and many DC bars), meals and drinks at wellingtons, running into friends in the lobby, buffet meals, breakfast with a super smart researcher, hugs, laughs and tears. we heard the author of "welcome to holland" emily perl kingsley, speak about her life bringing light to disability to sesame street and her journey with her son who has down syndrome. the sessions were amazing, the table for clinic and our new brochures was perfect and the rettland foundation table was there too. there were lillie pads and snap wraps. and tons of cute little girls. there were interviews and photo shoots.

then it was time for the tribute dinner which is always so special. this year we joined with the CDKL5 families which made it even more special. the tribute video was 16 minutes long! awards were given out, we were introduced to some of the "first timers"-those that were there 30 years ago when this all started. parents that paved the way-without the internet, without much to hope for and they are still standing. and lookin good. sitting at the table next to us was a family from san francisco who had a daughter with cdkl5-i was able to tell them about our clinic. that was cool.

on saturday the highlight was the sibling panel. i go to this against my better judgement-it is bittersweet to hear a rett/cdkl5 sibling talk so openly in front of so many about their deepest thoughts. oh the things they said. the tears and the laughs they caused. they were so honest and real and funny and wow.

saturday was a pj, dessert and wine in bed night. until our neighbor knocked on our door. her sweet daughter was doing something odd that she had never seen before. i was able to call dr jones and get her to come check her out. this was at 11:30pm. they administered rescue meds after determining it was seizure activity but it wasnt seeming to work. we needed to get her additional rescue meds just in case and a text here and a call there and we had it. this family is amazing.

and as if it couldnt get any better, i finished up by having breakfast with dr mary and kori then lunch with mary paige and judy. all rett rockstars.

then i got picked up by sheri-my bff from college and her three cute and adorable kids. i havent seen her in 7 years and as ridiculous as that is, its like no time has passed at all. we had great chats and i so loved getting to know her sweet kids. even though i wish i had more time, it was just about 24 hours and it was perfect.

five years ago i thought how is this my life? now i think how is this my life....but it has a whole new meaning.

colleen, dr mary, lauren, sherri, shannon, kori, jane, jesse, me, dr percy, chris,

kori, jackie, carrie, me, lisa and grant

me, kori, sherri and lauren if front of the white house in da capital.

sightseeing includes bars

me, baby eva and my sheri

fran, me and kori

tribute dinner

rett racers reunite.

santa barbara

2014-06-19T21:12:00.001-07:00

the four of us went back down to santa barbara (or as some call it, normal island) last weekend. we went for the 3rd annual paddle for sorel-a fundraiser put on by our awesomely cool friends Chris and Megan-for their daughter Sorel who has Rett. it is a really cool event. there is a send off early in the morning at one beach and then a welcome back at another beach-9 miles away, followed by food and a raffle and fun.

we had every intention of being there for the welcome back portion as we had been last year. but we got a late start saturday morning and then hit traffic and then my flip flop broke and then we got there and it was over. but there were still hugs all around-some playing in the sand, visiting, chip eating and laughs were had.

we were just in time to head back to megan and chris' place which is maybe one of the most comfortable and comforting places in the world. there were several other families there with their daughters with rett syndrome. several siblings. neighbors. it is just about the coolest place to be. megans parents were there too, in town from connecticut and they STILL let us crash in their house. there were air mattresses-couches-kids crammed into every corner at bed time.

colleen and jared were there with claire and chloe. they make me smile-for so many reasons.
laurie and eric were there with josie and jocelyn. loving getting to know them better.
silvia was there with olivia and brianna and ava and there is nothing like a silvia hug.
and megan and chris-they are the most relaxed chill sweet understanding giving people.

it is comfortable. it is easier. it is normal.

the next day we took sorel, xander, avery and nolan to the pier in SB. We went to the Sea Center. We went to a restaurant for lunch. Avery yelled. she pulled her plate off the table and covered her mom in tartar sauce. and it was ok. I gave the couple next to us an avery card to explain the yells and the strollers/wheelchairs. as we left he said to me "hey! good luck to you guys-keep up the good fight" and it was rad.

i loved it all. the traffic, the flip flop mishap, the missing the whole reason we drove 5 hours each way. so worth it to be with these people. loved it.

oops, missed May.

2014-06-08T09:13:00.000-07:00

havent written in a while. sometimes i get a little bogged down in making sure what I write is funny or touching or moving and forget that i just need to write. i missed the entire month of may for really no good reason and its a total bummer because may was mostly awesome.

notes and words was the beginning. played golf first with brian and leeann and then dinner at a fantastic restaurant called Duende in Oakland. the show was amazing as usual. we had a blast.

Nolans class had muffins for mom to celebrate mothers day. it was very sweet. we had muffins and fruit and the class treated us to some songs. mothers day was amazing. lots of relaxing, some pool time, a little champagne then a last minute get together with some family.

we saw our niece Hattie get baptized in the city and the kids were really good. the day after was spent in Napa with Julie at a charity fundraiser event at Hall Winery. A gorgeous day with yummy food and wine-plus it benefited the clinic among other deserving charities.

i attended the samantha corpus golf tournament dinner which is always a good time. sat with some families and drs. was overwhelmed once again by the generosity of the people in attendance. this tournament is in its ninth year and has raised over 1.4 million for IRSF (now known as rettsyndrome.org).

then it was time to celebrate my 40th. sure it was a month early-but it was perfect. so many friends made the trip to tahoe-we got to see our friends pete and val from CO (whom we hadnt seen in over 4 years). red and I drove up on thursday and didnt come home till monday. couldnt have done it without gramma taking the kids and keeping them safe and happy! we sunned and cocktailed and sunned. the boys golfed, we ate, we gambled, we bowled. it was perfect. i felt the love for sure.

i returned to real life to some terrible news. one of our clinic patients had passed away over the weekend. she was 26. it was so sudden and shocking-especially since I had just seen her parents at the corpus dinner the week before. then there I am watching them grieve for and bury their only child. it was a beautiful service. her friends were there-one of whom spoke using his speech device. judy from our clinic spoke-she had know this young woman for 17 years-it was so moving. that was the 2nd funeral i had been to since I started at the clinic and I hope I never need to go to another. it is a terrible feeling to be able to picture it happening to you. it is just so sad.

the good thing about being sad is when it turns to anger and you are forced to do something. im on the board of a newer foundation called rettland foundation. we help lessen the burden of paying for clinical trial travel expenses-there are trials going on and there are families that want to participate but they cant because of finances. we want to be able to do more. if you can help check out rettland.org -avery thanks you.

boston- take two

2014-04-23T16:55:00.000-07:00

an email in my inbox today broke it down. Congratulations on finishing the 2014 Boston Marathon! it said.
Erica Robertson
Net Time 6:02:09
Overall 31013/31931
In Gender 13846/14356 (Female)
In Division 6729/6979 (F18-39 Age Group)

It made me laugh.
I knew the 6:02:09 and I knew there werent that many runners coming in behind me-but less than 1000! in a field of nearly 32,000! too funny. and it is so not fair that im up against 18 year olds!

well before i crossed the finished line (holy crap i can finally say that) my garmin died. likely due to it telling me too often that I was "behind pace". no kidding, im walking! so i wasnt sure exactly what my time would be but i knew i was not going to reach my goal time around mile 13. and the time on the clock when you finish is the time from the very first wave so there is math that has to happen to figure out where you are and after that much pavement-no math is happening.

there are a lot of reasons for my lack of speed-

it was REALLY warm out. and super sunny. nothing like 2012 (upper 80's i cannot even imagine) but still way too warm. and our wave went off at 11:25am which didnt do us any favors.

i did not train as well as I needed to. not even close. and I knew that going in but i thought the crowd would get me there-and they did, just not as fast as I had hoped.

in reality i truly didnt care about my time, just that i would finish a race that was literally two years in the making.

i wanted to really take it all in-again-and focus on the people-the special meaning of this race, this year. coming back to take back that finish line and help boston recover a little from the tragedy a year ago.

this time was so different from last year. military police everywhere, boston PD as well. helicopters overhead. the crowds were even bigger. so much cheering. the wellesley girls louder than ever. deafeningly loud. i smiled a lot more, and struggled more.

i stopped to take a photo at the spot where the race ended for me last year. an officer asked me if i needed something and I said-no this is where i was stopped last year, i just want to take a picture. he said " yeah i was here too" and i looked at him and just said "thank you". i thanked a lot of people. regular people that were spending their day cheering us on-even the slow ones. they stayed the whole time. and they thanked US. for running for boston. a kid about 12 was yelling like a mayoral candidate: boston is only as strong as its people! thank you for running for boston to make us stronger! we are boston strong! he was so into it and meant every word.

i had pretzels, oranges, a giant strawberry, gatorade, and a chocolate chip granola bar along the way.i took ice and got sprayed by several water bottles and hoses. i declined a PBR, a heineken, many otter pops and a push pop.

there were again many great signs: "you have stamina, call me!" "because 26.3 would just be CRAZY!" "i thought they said RUM!" but my favorite was "when you feel like quitting, remember why you started." i pointed at the woman holding that one up and smiled. it is for the girls. just keep moving.

the entire 5 or so miles from where I was stopped last year to the end was new to me. it was great to see the 1 mile to go sign and the 1k to go sign. then the 26 mile marker. boy that .2 seems far at that point. but by then you are on boylston. the cheers are intense. you literally feel like there isnt anyone else there (and hey in my case there actually might not have been), but you still feel like everyone is just cheering for you. it was one of the most amazing and moving moments of my life. im sure I didnt walk one step on Boylston. i looked to the left, where the bombings had been last year and thought of last years victims. and I put my hand over my mouth and cried. and then it was there. the finish line. my hands went up and it was over. i made it.

i walked over and got my medal then my heat sheet, then some food. then i walked to the Taj and met Red and our friend Gary for a drink or three. we sat in one of the finest hotel bars in the city sweaty and gross and owned it. Red had finished in 3:55:55, amazing. we did it. we finished Boston. Strong.

15 days

2014-04-06T17:47:00.001-07:00

15 days until boston.
10 till i get on the plane to get there.
it has been a rough go this time around. i didnt do everything i was supposed to do. i dont think i went farther than 14 miles all at once. supposed to have done a 16, 18 and 20 miler. whoops. im really mad at myself for flaking out on training like i should have. but, at the same time im feeling ok about it. i mean, i did it all last year and since I didnt get to finish in 2013 then the training just carries over right? not really.

i ran 10 miles today like i was supposed to. a hilly run that was new to me. red did ten yesterday and he told me where to go. i had used that route before but never gone so far on it. i didnt even realize it went that far! it was gorgeous. perfect weather, not too many cyclists-or really that many people at all. which i like because i tend to say good morning to everyone (except the cyclists) and when they just look at me like huh? i get all irritated. so im even more looking forward to the hundreds of thousands of bostonians who will be there to cheer me on in 15 days.

but the hills. man they were tough. really good for me, but so hard. but goose deserves it. all the girls do.

our team has surpassed last years fundraising total and we are currently at $132, 288! Red and I have over 11,500! that is one thing that has stayed true from last year-the overwhelming support and love we have felt from friends, family and beyond. im so excited to finish this thing. two years in the making...and I will finish it! in just 15 days.

kinda like a second pregnancy

2014-03-29T10:17:00.002-07:00

you know when you get pregnant for the first time and you are all excited and writing everything down and checking websites to see how big your baby is day by day? and you cant wait for people to ask you how far along you are and how you are feeling and are you finding out if its a boy or a girl?

and then you get pregnant the second time and you do none of that? and want none of those questions? and you just want the baby OUT!?

its the same thing when you decide to train for a marathon, and then train for that same marathon the next year.

last year I carried the book that contained my training program everywhere i went. making sure i was checking off all my workouts and runs exactly as planned. this year that book lies untouched on my dresser. I did make a calendar with my workouts on it but im definitely not following it with the same kind of fervor as last year.

last year i wanted to talk about it all the time. to tell people about my runs, my sprints, (okay, maybe i never really did sprints) my mileage. i wanted to tell people how sore i was and talk about shot blocks and hydration.

last year I was so into the process and PETRIFIED for the race. out of my mind nervous. exactly how i was when i was pregnant with Avery. consumed with the process and terrified of actually giving birth.

i run into people now and they all want to know "how is training?" and I have to fight the urge to groan. but the truth is I just want this part to be over. i want it to be race day, go time. im OVER carrying this baby!! so over it!
i mean, I am supposed to run TWENTY miles. TWENTY. i did this last time!!!! i dont wanna!!!!!

i just want this baby OUT!!!!!!

in less whine worthy news-team rett 2014 has raised $121,726 SO FAR. Just about to surpass last year. and Im so proud of all of us-whether its our second, third or first! counting down the moments until i get to walk up to that start line and get going.

made it

2014-03-18T23:28:00.001-07:00

i made it through the weekend of the NHS study. barely. but that is a story for another time. let's just say it was just like every other NHS with a little extra added flair.

it was a special weekend though. the last time we would all be together like that. we started bringing avery in March 2010. i started coordinating it in 2012. now its 2014 and it is over. looking back on 2010 we were so new. so eager to participate and knew about 3 people in the rett family. now, i feel like i have a friendship with nearly every parent. i call many of these people very close friends. and im so glad to be a part of it.

it is hard to explain how easy and comfortable it is to be around this "family". easy really is the best way to explain it. we look out for each other and take care of each other and anticipate each others' kids needs.

i ran myself ragged and celebrated a little too much saturday night. but my family was there for me. amazing support. it is hard for me to fill so many roles all in one weekend-coordinator, regional rep, mom, wife, friend...it is a delicate balance. especially when it feels so easy at the same time. im not making much sense...

but, a lot of good is happening. a lot.

i was asked to be on the board of a new foundation started by colleen who is a good friend and rett mom. she is insanely awesome. and she and i have grown a ton on this journey together. we dont even recognize ourselves anymore. she had a wonderful idea-to help ease the financial burden for families who are willing to participate in rett trials. (do you know how cool it is that I can say trialS-plural? ) the fact that there are two large clinical trials going on right now but they are having trouble filling them really bugged her. so she did something about it.

she started raising money, then decided to start a nonprofit (which is not easy) and then asked me to be on the board. we have had three board meetings all via google hangouts. it feels great. im basically her cheerleader-she calls me and says "i have this idea" and I say "that sounds fabulous"! and then she calls hotels and books rooms and pays for them with money that has been raised and wow. we have helped several families already. currently we are helping families with their hotel costs for the screening visits for the NNZ-2566 trial but we hope to expand to the igf1 trial as well. colleen and her daughter claire are setting the best example. they have just returned from boston for their screening visit. and im so proud of them, so grateful.

speaking of the igf1 trial-a paper was just published showing the success of phase one of that trial. it was shown to be safe and efficacious. its amazing.

last sunday my old friend Tara, ran her first marathon in honor of my goose. and she didnt just run a marathon, she ran an 8K the day before and she was an official rett racer-she has raised $750 so far for IRSF. and she crushed her goal time. and she did it with avery written on her hand. did i mention that i havent seen Tara since maybe 1992? and that it is only through facebook that we even are in touch? amazing.

that same day a badass dad in illiinois finished a 5 day 150 mile run across illinois for his daughter cammy and IRSF. video updates and pictures and everything about all of it made me cry.

and in between all of that we have had some really great times that are not rett related... dinners with new friends, nolans rehearsals, baseball, playgroups, great weather, avery using her device a ton...

dont get me wrong, there is still terrible. screaming, hand mouthing, daily stresses, diapers for a 7 year old, girls in and out of the hospital, feeding tubes etc...

but there is light, lots of it, at the end of this tunnel and we are barreling towards that end. and so far we have made it.