Wednesday, June 29, 2011

another year

Yesterday was Averys due date. That perfect date chosen by nature of all gloriously even numbers. 6.28.06. I was so naive-as most of us are when pregnant with our first child. Nothing will or could go wrong. It's going to be perfect, right down to the music you think will automatically start playing as soon as that baby makes it's way into the world (vaginally of course!)

But then the perfect due date comes and goes and you ask your OB can we induce on the 30th so the birthdate will still be all even numbers? She looks at you hopeful that you're kidding but she sees you are not. She has visions of writing a prescription or two after the birth, and not just for pain meds. Her vision is correct.

The induction is scheduled for july the 8th. July!?? But that will ruin my baby's perfect due date! well, at least I got the 8th. Anything can happen, you are told, and you might go into to labor tonight! you dont. you wait and wait and look at your swollen ankles and think how in the world could they get any larger. you wonder why it has to be the hottest summer on record and why the air conditioning at home doesnt seem to be quite up to par. you wait. nothing happens. you are going to be induced. that wasnt part of the plan and neither is the C-section you end up with. Also not in the plan? Having your mom diagnosed with ALS just a couple weeks before all of this. She wasnt happy with the "1 person rule" for the OR. "Tell them Im dying" she says-which you think is funny for a split second until you realize she actually is.

Not in the plan. As expectant mothers we are all told to "have a birth plan" which i think is complete crap and my plan wasnt even over the top. I planned to have a vaginal delivery with any and all drugs I might have needed. I planned to fall madly and deeply in love with my baby right away. I planned to be good at this. I planned for her to be healthy. Except for me getting the drugs I needed, none of that plan fell into place.

You can kind of see it my face in the photo that was taken as I first laid eyes on Avery. Some might say its a look of love and adoration-I feel like its more shock and awe than anything else. The love and adoration would follow.

You all know the rest of the story-the past FIVE years-the missed milestones, the delays, the tests, questions, the Dr's, the specialists, the "She's fine!'s" and then more specialists who wanted more tests and finally --Rett syndrome.

So here I sit once more, on this couch that held me up the night before she was born and last year at this time when I sobbed my eyes out at the thought of her turning 4. Last year was her first birthday since the diagnosis. It was a rough one with no real party. I promised here to give her a princess party this year. She just still is not a princess-y girl. So we are having a pool party with pizza and popsicles and cake. Because she is happiest at the pool. I'm sure I will be a wreck on the inside even though I feel I have come a long way since last year. Im not sobbing, so there's that.

But, her birthday is a tough time for me. Like last year I struggle with the whole party thing. Avery cant participate in most party activities-she cant open presents, or even play with those presents. Most of the time she seems as if she couldnt care less about any of it. Nolan has been talking about his birthday (in October) since November of last year-so I know it should be high on her radar and thats heartbreaking.

I keep reminding myself of the words I have heard time and time again from more experienced parents in this Rett marathon-"things calm down around 5, trust me". So, Rett syndrome, do you hear that? You've got about 9 days to loosen your grip on my girl. My big 5 year old girl.

Monday, June 27, 2011


I'm a huge fan of those times when things seem to fall into place. Shortly after the email arrived with the news that the Tobii we wanted Avery to use in summer school was being set up, another email arrived to say that our request for a 1:1 aide for Kindergarten had been approved. Not long after that, on a Sunday, I received an email from a close friend of the family saying that she had gotten Avery an appointment for a hippotherapy evaluation that Thursday and could we make it there at 2:30? ummm, yes we could!

After Avery's diagnosis I printed out the forms to get her on a waitlist at a nearby stable that would provide hippotherapy (physical therapy on a horse) and I meant to fill it out and send it in to get her on a wait list. She wouldn't be able to go till she turned 5, but I needed to get her on the list then at the age of 3. I never filled out the forms. Partly because I knew it was something we could most likely not afford and partly just because there were other more pressing forms to fill out.

So when I got this email I was thrilled. Even more thrilled to know that the evaluation would be paid for by this fabulous family friend who has been so generous to us already.

All of us went that thursday to the horse farm (leap of faith farms that is fairly close by-mom, avery, nolan, kaitlyn, gramma and sheila (our wonderful appointment maker). We had to answer some questions and have forms filled out and then avery got to pick out a helmet. I saw the ladybug helmet and knew it was for her! She loved it. Then onto the horse! Molly was amazing-and without the fantastic volunteers it would not have been possible. Tineke is the physical therapist that specializes in hippotherapy and she, along with the volunteers walked off with my little girl on top of a horse!

They made it in to the arena and did some laps--frontways, backways, on hands and knees. Avery made her happy sounds the ENTIRE time. She loved it. We all got the chills and tears in our eyes as we watched her.

Needless to say we are going back. Im so thankful to our friend Sheila for making this happen!

Sunday, June 12, 2011

brought to tears at urban outfitters

On Friday I had the chance to get out for a couple hours by myself. I went to downtown walnut creek to hit the gap up for some new skinny jeans to wear to my sister in laws b-day dinner (found some on sale for $23!) Downtown walnut creek, for those that do not know, is an outdoor shopping mall with pretty much everything you need- and soon will have something that none of us need-a Neiman Marcus-it is currently under construction-who shops there? Anyway...after the Gap I headed over to urban outfitters- a store I dont think I have been in since my day trips to georgetown in college. I am definitely not the demographic they are catering to and near the end of my stroll around the store I checked my email. I had to sit down on one of the benches in the store once I started reading. And no, it wasn't because of how short all the clothes are in this store (seriously, where are the hemlines headed people?).

Here is the email I received-from Avery's preschool principal:

Hi Erica-

I just wanted to let you know the Tobii P10 was delivered to room 6 today and Carrie is in the process of getting it all set up and ready to go. She will be coming to Shadelands early next week to train staff and begin orienting Avery to the device.

Thank you for the gift card and cupcakes last week. That was incredibly thoughtful of you!

I kind of burst into tears, as I am known for doing!

Those of you that follow my facebook may know that there was a little struggle to make this happen. Back at the beginning of the year, the AAC specialist told me there was a Tobii P10 in a classroom unused and unassigned to a student-she hoped to get it for Avery to have a longer trial. She was 99% sure she would be able to get it.

A few months later, or maybe it was weeks-who knows-I visited one of the class options for Kindergarten and there it was-sitting unused in the corner. A $20, 000 piece of equipment. Collecting dust. I asked about it and was given a shrug and vague comment about red tape. I was getting annoyed. More time passes. No movement. I get angry. I take it out on the wrong person-basically the "proper channels" were not taken and therefore some people were digging in their heels. Thats when I shared this with teacher diane and the principal. Meetings were set up. Things happened and voila! the email in my inbox.

Long story short-Avery has an amazing team. The people that were digging in their heels are not a part of the team and had never met Avery. It was all very silly-following the rules at the expense of possibly benefitting a student for FREE, is not always the "proper channel" to take.

I loved that her teacher and principal were willing in the last two weeks of school to make something happen. We are so going to miss them!

So tomorrow Avery starts summer session-what will be her last four weeks at Shadelands. And she will be doing it with a speech device. Fingers crossed that she will get the hang of it and we can move forward to getting one of our very own! We know she has a lot to say!

Wednesday, June 1, 2011

where everybody knows your name

it hit me in the security line. terminal 2. SFO. i shouldnt be this excited. i shouldnt be taking this trip. avery shouldnt have rett syndrome.

oh, but she does.
and i was taking the trip.
and i was excited. right?
sort of.

anyway. i found my travel partner, the trusty colleen. we got a cocktail ( a double for me) and marveled at the really fabulous new terminal. we heard about the waitresses bad night. then we told her where we were headed and why. she felt bad. we laughed to make her feel better. we laughed to make ourselves feel better. we cried a little too.

5 sleepless hours later we arrive in boston. the airport is confusing when very tired and much in need of a coffee (or four). who cares if we missed the stop at the subway station the first time? got it the second time around. the subway was humid. but only $2.

i was crabby when we got to the park plaza. we found maren in the lobby-fresh off her two week europe trip! once i got some coffee and food i turned it around. went up to my room and tried to nap. i was unsuccessful.

but, i had to be downstairs to get the shuttle to what was the highlight of the weekend for me. the tour of the lab at boston children's where amazing research is happening, and where the IGF1 trial is being held. we saw the lab, met the principal researchers, saw post doc students in darkened rooms using nobel prize winning machines to look at neurons and cells and to try to fix rett. with each new face i came much closer to saying "thank you", but i feared i might fall into a heap of tears on the floor. so i said nothing more than wow-about a zillion times. i am so thankful to the people doing this work. i just dont have words for it.

Catriona-from LONDON (or is it Britain, or the UK or England?) joined us next. we found ann marie, dr. mary, vicky and our new friend angie-had "tea" in the hotel restaurant. many more old friends arrived. lots of hugging. and the rest of the weekend is kind of a blur.

i know i learned a lot:
that we are much more capable than we think from our keynote speaker, dick hoyt of team hoyt.
that our girls are much more capable than we think.
that we need to MODEL whatever type of communication we want our girls to use.
that it just takes thinking out of the box.
that siblings can, and do, feel the pressure to be perfect.
that there is a ton of hope-that research is moving, and moving fast.
that its possible there will be a viable treatment for many symptoms in the next few years.
that boston is beautiful, clean and the people there are super nice.
(and that its really humid pretty much anywhere after living in ca for so long)
that its really cool to meet someone online because your kids have delays, and then 2 years later meet them in person, and find them to be just as awesome as you thought they were.

and i was reminded that even though this is not what we wanted for our life, we couldn't be in better company. my rett family-these moms and dads and the staff at irsf-make this whole thing somehow ok. even if just for a weekend or a day or a moment. i would need to use all my fingers and toes to count the people that would be there for me if i called with good news, or especially bad news.

im so thankful to irsf for being there for us. for giving us knowledge and empowering us to be better parents. im thankful they give us an opportunity once a year to come together and learn and lean on and laugh and cry. where everybody knows your name.