rettsyndrome.org

Image Map

Wednesday, December 28, 2011

Road Trip!

We were invited up to visit a lovely cabin in Miranda Ca the day after Christmas.  Sarah's (Red's brothers girlfriend) parents, Cathy and Don, have a cabin there right near a beautiful river.  It is about 4 hours away so it was a little nutty of us to try to do this in one day.  But, I wanted to try it.  I wanted to do something that a family with typical kids might do.  So, we got up early, packed up and left with gramma and the kids.  Three stops later, we got there around 11:45am.  What a beautiful location!  We were greeted by four dogs which the kids loved.  We went in and started on some mimosas!  We had a lovely lunch on the deck (homemade tomato soup and homemade pizza), then walked down to the river.  Uncle MT tried out his new fishing waders and showed Nolan how to fish.  Nothing was biting as the river is very low.  Avery had a blast trying to walk into the water and laughing at us as we chased her back from the shore.

We went back up to the cabin and relaxed for a bit before heading to Founders Grove-a beautiful section of Humboldt State Park with the most glorious Redwoods.  It was a little excursion that Ill remember forever.  It is one of those things I would shy away from because of Avery.  Of course, she loved it and was so good.  She enjoyed running through the forest on the soft pine needles, through the fine mist that was making her hair curlier and curlier.  We went inside trees, Nolan climbed on logs and jumped off of them.  I took a million pictures.  It was lovely.  A lovely day with lovely people who all accept Avery for who she is-which is always a gentle reminder for me to do the very same. I love it when that happens.
















Tuesday, December 27, 2011

christmas day 2011





Christmas morning came and Avery was up and ready to go.  Nolan was another story. Too many late nights had tuckered him right out.  We had to wake him up.  I wish I had a picture of his face when we said "Nolan! Wake Up! Santa came!" He was puzzled for a split second, then leapt from the bed and ran into the living room so fast I didnt have a chance to get the camera!  He and Avery both had looks of wonder on their faces.  Nolan checked out the trampoline first, then noticed the plate of cookies and carrots.  He really inspected it! They liked their gifts-I think Nolan's favorite was the M&M's in his stocking!  Glad we didnt buy too many toys!

After we opened presents here we went to gramma's like we always do.  There were more presents there, mimosas, gin fizzes and breakfast.  The kids loved opening more gifts and especially the huge blow up slide gramma and poppa gave them!  They had a blast on it-until some dog poo got in the mix and then it was time to go!

We then went to Red's aunt and uncles for dinner in Danville.  So much fun.  It is my 11th Christmas out here in California and am so lucky to have all these wonderful people to spend it with.  I unfortunately didnt get any photos.  But I assure you we had a blast.  And a delicious meal.

We had to head home and get to bed because we were planning to wake up early the next morning to drive up north to visit with Red's brother's girlfriends parents who have a cabin on a lake!  That will be my next post!

christmas eve 2011

once again we hosted christmas eve here at our house.  its the one thing I can carry on from my childhood.  my parents always hosted christmas eve.  it truly is my favorite night of the year.  We have Red's immediate family over for dinner, a "white elephant" gift game and secret santa gift exchange.  We always have a ton of laughs.  Everyone was in attendance this year (12 adults) and there were 4 kids instead of 3!  Everyone pitched in for food and we had a delicious meal-despite the potato dish being dropped on the street and smashing into a million pieces!





Avery was so good.  Nolan was so wound up.  He put reindeer food out on the lawn and we set out cookies, milk and carrots. He would NOT go to bed! That is until Santa called us to tell us he was here!  Nolan RAN to bed-it was hilarious!  And he was out like a light.  Once we knew he was asleep, Red and his brothers put the trampoline together and I wrapped the rest of the presents.  It was a really fun night and Im so thankful for Red's family!   

Sunday, December 11, 2011

crying it out

It's been one of those days where I have been on the verge of tears all day long. And I have a headache from not letting it all flood out.  First it was being in Toys R Us trying to find some presents for the kids for christmas.  Everywhere I looked I saw things for Nolan, but nothing for Avery.  Then I found myself in the barbie/dressup/all things little girls love aisle and had to fight back the tears.  It is hard not to try to imagine what Avery would be asking for if she could ask-or even play with toys.

Then I had good tears when I heard the gender of our beloved sitters baby-It's a GIRL.  But then you know that causes me stress as well.  Im always afraid of that Rett monster showing up in someone elses baby.  I know its silly but, the way it is. 

Then this afternoon, after I heard the news that a young local woman with Rett had been taken off a ventilator after nearly three weeks in a medically induced coma for uncontrolled seizures, had passed away-I read a message her father posted to our online listserv and I just lost it.  But again, had to stifle the cry a bit because I was feeding the kids. 

Plus you can add in all the status updates lately about girls seizing so badly they vomit, turn blue and/or stop breathing.

So I have this headache.  The kind I know too well.  The kind that reminds me Im due for a good curl up and cry session. Kind of feels like the walls are caving in. It's just all a little much.  

Time to cry it out.

Friday, November 25, 2011

working girl

Back in 2006 when it was time for me to start thinking about finding child care for Avery so I could go back to work,  I just couldn't do it.  I remember the day I started looking and just got this feeling that I should stay home with her.  Luckily, we were able to make it work out financially and that was it.  I was done with my full time job-no more paycheck, no more benefits.  After being in the work force for 10 years.  It was weird at first but I have gotten the hang of this stay at home mom thing over the past 5 years.  For a while I worked part time (from home mostly) as a grant writer for a wonderful organization for children and adults with Down syndrome.  I was pregnant with Nolan when I started that job and had to give it up once he was crawling.  But I had gotten the "bug" so to speak.  I knew I wanted to get a job again once the kids were a little older but I really had no clue what I wanted to do.

Enter Rett syndrome and Katie's Clinic.  ( you can read about our very first visit HERE.  )

Shortly after that first visit I got up the nerve to mention to a few key people there that if there was ANY job I could do for them, I would be more than willing and able to do it.  Fast forward about a year and I am asked if I would be willing to take the coordinator position once the current person (the amazing Pat!) retired.  The question hadn't even been fully asked before a resounding YES fell from my lips.  I became an official clinic volunteer shortly after that and over the past 6 months or so have gotten to know the amazing group of people at the clinic.  About two weeks ago, the position was finally posted and I applied.  On Tuesday, I got an email and I am starting next week!  It is a 24 hour a week position for now, but the plan is to increase it a bit in the future.  Ill be taking intakes for new families, scheduling clinic days and coordinating the Natural History Study in March and October.  I will likely also be doing some speaking to schools and some grant writing. 

Im so excited because I know this is a job I can do and do well.  Im nervous to learn all that need to learn in a short period of time-but I know that the team will be there for me and help me out along the way.  Life is going to change a little and I cannot wait to get into a new groove.  I just couldn't be happier-Im going to work for a fantastic clinic at a renowned hospital with incredible people doing game changing stuff for families like ours.  sounds pretty darn perfect to me.

Wednesday, November 23, 2011

i cried again while watching nolan color with crayons. he can color. with ease. and he can tell me what he is coloring: "a bounce house", "a tambourine", "that's you, mommy".  my voice cracks as i tell him how beautiful it is or what a good job he is doing. and tears well up. and its just so silly to be sitting there in awe of my 3 year old coloring.  but i know why i am in awe, why i dont (and wont) take it for granted that he can color.  it is because his sister can't. she cannot hold a crayon, let alone make a mark on paper without a lot of help.

i ask him "who are you most excited to see tomorrow" and he rattles off a seemingly random (but probably not) list of people he knows we will see for thanksgiving. then adds a little commentary like: "they are really nice to me" or "i'm going to show her my shoes and she will really like them!" while making the cutest little facial expressions. and im in awe.  because his sister can't do that. she has no words.  none.  at least none that she can speak.  i know she is thinking and has things to say-but nothing but screams and yells come out.

every once in a while i hear nolan yell "i have to go potty!" while i hear his little feet stomping across the floor on the way to the bathroom.  so easy.  and yet i still have to check Avery's diaper to know if she is dry or not.



today, after i braved the grocery store with both kids, i put avery in the car while I loaded the groceries in the back.  while i was buckling nolan in, i said to avery "can you climb in your seat?" and nolan said, without missing a beat: : "mommy, she can't! you have to put her in! she doesnt know how!" and I said, "you are right, buddy, I do need to put her in, but she does know how-she just cant."

i know this is a common theme in my posts-the fact that i live on this fine line between hating the fact that my daughter has rett syndrome and loving the perspective it gives me.  one of these times Ill be able to articulate it much better. but for now, i just feel that both of my kids are awesome in their own ways.  could it be more awesome if Avery did not have rett syndrome?  maybe...probably.  but would I know it?  probably not.




Sunday, November 20, 2011

flower girl and ring bearer!

A couple weeks ago, the kids got to be in their Uncle Charlie's wedding!  They did great-well, Avery did great-Nolan was kind of a diva but we made it through!  I walked with Avery down the aisle and Nolan went with Gramma.  


                               The bride (Kelly) and groom in the limo after the ceremony!
 Avery was pleased with her self and did so well getting her picture taken by the professional photographer.  I cannot wait to see how those turned out!
 Nolan partied all night!  Avery went home with Alexis before dinner was served-Nolan stayed with us and worked the room.  He also broke a glass and Im sure caused all kinds of havoc.  Red and I were up at the head table so we just let him loose and hoped for the best.  He was having fun with his cousins and just looking too cute in his mini suit!

Thank you Kelly and Charlie for having the kids in your special day!

Wednesday, November 9, 2011

two years.

Just about this very moment two years ago, I was outside with the kids when my phone rang.  I didnt recognize the number at first, but then did once I missed the call.  The neurologist.  My stomach did a couple flips. I called back and just like that-everything was different-but also everything was just the same. 

It is strange that prior to that call-the one that made me cry so hard I could barely ask all the questions I had-it was just a regular evening and then after the call, we had Rett syndrome.

In a matter of minutes.

And now two years have passed just like that.  And it also feels like it has been closer to 5 years because our lives have become so full.  True, I hate everything that Rett has taken from us and all the other families dealing with it-the dreams that have been shattered, the daily heartaches, the struggles- all of it.  But I have to say it has given us much more than it has taken away. 

No, I have not come to a place of full acceptance yet, I don't know that I ever will.  And I still get mad-really mad- about it all.  And I would trade it all if it meant Avery could have a "normal" life-whatever that is exactly.  But....AMAZING things have happened as a direct result of Avery having Rett syndrome.  Donations from all over are the most obvious of the amazing things.  But there are many many other things that happen-wonderful people who would have never crossed our paths are now as close as family members.  Family members are even closer than they were before.  Old friends have stuck by us and have gone above and beyond.  The list just goes on and on.

yesterday this was my facebook status (it got 45 "likes" and 20 comments) :

two years ago tonight, I had no idea how ours lives would change the next day. tomorrow is diagnosis day and we will celebrate-celebrate the triumphs, the friends, the lessons, the awareness, the funds raised, the research and all the goodness that has come out of this ugly thing called rett syndrome. we will celebrate. ♥

So take that Rett syndrome! 







Tuesday, November 1, 2011

Hallo-WOW.

Im sort of afraid to jinx it, but I feel we very well could be turning something of a corner with Avery these days.  It might be that Im still recovering from a very relaxing weekend in Vegas with great friends-but I think she is really a little different.  Maybe she is tired.  I hope it lasts whatever it is.

Yesterday was one of those days that I was dreading.  I had to be at two Halloween parades within 30 minutes of each other and get treats to both Nolan and Avery's classrooms.  I stayed at nolan's school and waited till the parade started.  I watched him in his little pizza costume the class made and then waited to get some pictures at the end.  It was almost 10 and I was so afraid I would miss Avery in her parade. I made it over to her school at around 10:08 and just as I got to the upper playground, I heard her class being called out.  I did get to see her parading with her aide.  She didnt see me though but I think it was better that way because she might have gotten upset.  I fugured out where her class was sitting and made my way over there.  This parade was intense.  Like 100% participation.  Even the teachers went all out.  One dude was on stilts!

I got to meet Avery's wonderful aide and heard that Avery had been having a great day.  She was tolerating her batgirl mask and everything.  I got to join the class after the parade for some treats and see some of the classroom action.  Avery has her own little spot in the classroom with a fantastic chair that was ordered just for her.  I saw her working on some things and she was getting it all right! Then I heard she used the potty in the morning!  Then I saw her use her step by step button to talk to her friends.  It was awesome. 

But I was still a little nervous for the Halloween party we were planning to go to.  Last year, we had to take Avery to gramma's after it became clear she was not going to last at the party long enough to trick or treat. She was screaming a lot and hitting little kids trying to get their food/candy.  I didn't even blog about it.  I posted pictures but had nothing to say. 

We get together with the same people every year but rotate houses-this year there would be some new families that we didnt know and a ton of kids.  I was sure it would send Avery over the edge.  But she was good.  She was awesome.  She was quiet.  She ate her food and didnt knock any thing over.  She smiled and giggled.  She got excited when we said it was time to trick or treat.  She loved trick or treating.  She held my hand and laughed and more than once put her head IN the candy bowl.  I felt like a "typical" mom.  It was magical.  Nolan was running up ahead taking as much candy as he could from every house.  He loved it but we need to work on his manners for sure!  It was a great time.  I kept leaning down to tell Avery "Im so proud of you, sissy.  You are doing so great!" and she would just smile and march on down the road.  We got back to our friends house, had a few bites of candy and went home.  As I was putting her to bed-waterworks.  I couldnt help it.  She was so good and made me feel so much like a regular mom.  And I just lost it.  Those are the best kinds of cries.  I was so happy for her, and for us. 
Today has been a pretty great day too.  And Ill leave it at that...with some photos.
 nolan at school parade.  his class went as pizza!
 Avery as batgirl at her school
 Avery and some of her friends just before trick or treating!
 Nolan pre trick or treating. I know I need a better camera.
 Can we get a move on?




Thursday, October 27, 2011

did you know....

that i'm this close to tears at least 10 times a day?
that I wonder every day what Avery would be like if she were typical? what our lives would be like?
that nearly EVERY time I see a typical little girl, a tiny little bit of my heart just breaks?
that every day I wish we could go back in time and make Rett syndrome not a part of our story?
that it has been over a YEAR since we have heard Avery say Mommy or Daddy?
that Avery truly has lost ALL of her words?  that she can't even really say Yeah or Bus anymore?
that I cant look at baby pictures without thinking "that was before Rett syndrome" or "how naive was I?"?
that I panic a little deep down inside when anyone tells me they are pregnant with a little girl?
that I also say a little prayer that the unborn little girl will NOT have Rett syndrome too?
that Avery is 5 and takes 3 different medications?
that Avery is 5 and cannot really do a single thing for herself?
that Im really angry that this happened to us?
that I constantly struggle with patience and acceptance?

but.....did you know....

that we have an amazingly supportive circle of family and friends? (that deserves its own blog post)
that old friends, just by telling me about their triumphs and struggles, make me feel "normal"?
that my newer Rett/special needs friends make this crappy hand playable?
that seeing Nolan and Avery chase each other and laugh can totally turn my day around?
that besides missing a chunk of genetic material Avery is super healthy and smart?
that hearing Avery giggle makes that huge rett wall crumble down all around me?
that Avery surprises us most when we feel like something will go horribly wrong?
that she danced with her cousin and brother the other night?
that I am working on being a more patient mom/person?
that I have hope every day?
that there are seriously smart people working on fixing rett syndrome right this second?
that we are lucky we have the life we have and we know it (even if we might need reminding every so often)?


and....
that this was totally going to be a pity party post but I changed my mind!?


 our family celebrating nephew Jackson's 1st birthday-Avery has no time to look at the camera, she has cake on her mind!




































Wednesday, October 12, 2011

Nolan's Birthday party (squared)

On sunday we finally celebrated Nolan's birthday.  We did it in two parties because for some reason I just think people over the age of 18 with babies and/or no children aren't too keen on spending a Sunday during prime football watching time at Chuck E Cheese's.

Nolan dug it though and after 2 hours of playing games, eating pizza and cake and just having a grand old time, we packed it up and came home.  Thankfully gramma did come and helped with Avery-and we were so lucky to have alexis (our wonderful sitter) and her boyfriend Vernon there to help too. Avery had a blast on the horse race ride.  She got to sit on a horse as it trotted along on a screen in a virtual horse race.  It was cool!  Vernon got like a bajillion tickets for Nolan which bought him a mini baseball.  500 tickets for that thing.  Chuck E Cheese makes a killing.

We came home, hung out-had some great friends over for beers and then hosted 16 adults (all family) for Nolan's family dinner.  He got so many fun toys and the "piece de resistance": the basketball hoop he has been asking for since last October.  He also got a bike and a helmet that we gave him on Saturday.  He rode his new bike (with training wheels) all the way around our block that day.  He was pretty proud of himself.  Speaking of the bike--while Red was finishing putting it together, I burst into tears.  Yet another thing Nolan can do with ease and Avery never had the chance to try.  It is a strange thing to watch your younger child surpass your older one.  And what makes it stranger is the fact that Im that much more proud and in awe of a child that just does stuff naturally.  I know we could and probably should, get Avery a special needs bike but it is just not the same.

Anyway-the family party was great-burger, roasted potatoes, sausages and salad.  Then we had ice cream cake.  All of us sang to Nolan and he just soaked it in.  Part of me wanted to once again burst into tears because Avery was fast asleep in her room-missing yet another family milestone.  Maybe one day she will be able to sit next to him and join in the party.





Here are some pictures of the day!

Thursday, October 6, 2011

Nolan-the best little (big) brother ever.


Because the Strollathon coincides with the Natural History Study, we don't get to pick the date.  This year it happened to fall on Nolan's 3rd birthday.  

I was a tiny bit concerned about this-only because ever since the day after his 2nd birthday, Nolan has been talking about his 3rd.  

I talked to him about it a few times letting him know that on his actual birthday we would be going to the Strollathon for sissy but that we would have a party just for him the week after his real birthday.  

So the big day came-we gave him a couple little presents when he woke up so he fully knew it was his birthday.  And lucky for him the Strollathon (or Stroll-a-Fon as he pronounces it) was like a huge party!  He was a little bummed when he heard there was no bounce house though.  He had a fantastic day-face paint, tattoos, popcorn, slushies and cotton candy.  What more could he ask for? (besides a bounce house of course).  

But the best part was that he totally knew it was his sissy's day.  And he was cool with it.  And Im so proud of him for that.  Im so proud of the brother he is to her.  He is more like a big brother now, which makes me proud and sad all at the same time.  But he is so good to Avery and loves her so much-doesnt even flinch when she screams.  

So, Nolan is 3.  A funny, sweet and sometimes wise beyond his years, 3 year old dancing fool.  My Nolies.

Tuesday, October 4, 2011

and just like that...it's over.

one minute we were figuring out table placement, and the next-truly it felt like maybe one minute had passed-everything was packed up ready to be loaded into the car. all the planning, stressing, talking, meeting (fine, we didn't meet that much) emailing, and sign making was over.

but in that "minute" ( really more like 6 hours!) so much happened.  so much.  and i knew it was happening then, but it doesn't really settle in till a couple of days have passed and you have a chance to look at some photos.  

i was honored to meet so many new people.  families that had never once been to a rett related event were there with huge teams!  with T-shirts.  with hope.  

last year i had no idea what I was doing with this Strollathon thing.  this year was 100% better.  still room for improvement, but what a difference. 

team little goose was huge.  i tried to count and i came up with 49 adults, 32 kids and 3 dogs.  incredible support.  it's probably what made me cry a little when I got up to speak-everywhere I looked was someone I loved. or maybe it was the fact that I had a microphone this time.  microphones are scary. 

the weather was silly amazing.   not a cloud and just warm sunshine.  

our volunteers were so great.  so so great.  we had so much fun stuff-crafts, hair beads, tattoos, slushees, cotton candy and popcorn!  

it is interesting to look back to this time two years ago...Nolan was turning one and we hadn't yet taken Avery to the lab for her Rett syndrome test.  we have come a long way since then. a long way.  i hate that rett has taken us on this detour-but i guess in times like this it feels more like the scenic route.  

so unless something earth shattering happens between now and next year-save the date for 10.07.12-same time, same place. and if something earth shattering DOES happen-we'll just call it a CURE party!


Tuesday, September 27, 2011

been a while

This time of year is hectic for everyone.  It has been especially hectic for us. Avery started kindergarten (no, I didnt have to volunteer to be room mom), Nolan started gymnastics, and Im in 2 fantasy football leagues (undefeated in one of them, thank you very much).  But the thing that makes this time of year most hectic is the Strollathon.

Im chairing this wonderful event for the 2nd year in a row. Now, don't go thinking Im all fancy because Im the chairperson.  It just means no one else really wanted the job.  But Im glad to be stuck with it.  Really.  It's a great way to channel my anger and frustration about Rett syndrome and do something about it.  Watching the dollars rise daily is just a wonderful reminder that we are doing a really great thing.  Even if it does cause me to get a ginormo zit every year.  Pretty sure I got one last year a few days prior and guess what I woke up with this morning?  yep. Im 37 years old people!

Last year was amazing.  Ok, it kind of sucked because it was our first try, but it was still AMAZING.  We raised a boatload of money (just around $72K), tons of people came and it was incredible.  This year should be even better.  We have a nicer venue, more "stuff" to do, a raffle (with an ipad2!), team signs and all kinds of fun stuff.  It was much easier this year to plan-with really the most stressful part being finding and securing the location.

But I just worry.  I get that from my mom.  I worry that no one will come, or that too many people will come.  I worry that no one will have fun and there wont be enough to eat. My mom always bought too much food for parties.  She always over-prepared, so I KNOW it will be fine, but I still worry.

My main concern is speaking in front of the crowd.  Even though I did it last year and I didnt fall apart into a sobbing mess, Im still nervous to do it again.  So nervous that I havent even prepared a single thing to say.  Did I mention that the Strollathon is in 5 days?  Crap, why am I blogging?

I guess just to say that Im proud of the Strollathon-all of them-all over the country.  Even though it stresses me out and messes with my complexion, it has been wonderful to be a part of.  To all of you who have donated, offered to help, made things, donated things, bought raffle tickets and even just given me a pat on the back-THANK YOU.  I have lots of help and I couldnt do any of this without the help of friends, family, the Rett community and IRSF.
Click here for info on the Stroll!

Sunday, September 11, 2011

Last Wednesday, just one day after writing my last post, I sat down at hippotherapy in the shade to watch Avery ride.  A minute or two passed and a woman walked up and said "I think I'll sit in the shade as well, it sure is hot", "it sure is!" I replied. I wasn't really in the mood to chit chat but we talked a bit.  She told me she was a new volunteer there and was learning so much about horses and how they can help kids with disabilities. She asked me a little about Avery like how we came up with "goose" as her nickname.  She commented on her wonderful posture and cheered for her a few times. I asked her a couple of surface questions and began to notice that the right side of her face seemed a bit sluggish.  We got to talking about rett syndrome a little bit and the difficulties that come along with it.  Then she told me she had been in an awful motorcycle accident that resulted in a traumatic brain injury. She had to re-learn to walk and talk, but went back to her corporate job just four months later. But then she told me that the whole experience had changed her and her priorities and her corporate job wasnt her true passion.  She went on to say that she was in the process of quitting smoking-in fact, she had gotten into her car just before I showed up and was going home to go get cigarettes but changed her mind at the last second and came back.  She said she has realized that her whole life she had been taking care of other people and now she wants to take care of herself.
I got the chills.  I told her about my blog post the night before-and how it was basically about how crappy things can bring change and light and good into your life and she got tears in her eyes.  Then we told each other our names and as she left to go get back to work, she went to shake my hand and I hugged her.
It wasn't much but I feel like we were meant to speak that day.  It was just so unexpected, and real and the timing was just freaky.
It seems like even when daily my life can seem like it is falling apart, many things are truly falling into place.

Tuesday, September 6, 2011

thoughts...random ones.

I read an amazing book recently- Half Broke Horses by Jeannette Walls.  I highly recommend it.  There was so much I loved about it but there was one passage in the book that really hit home for me, so much that I underlined it using my fancy kindle underlining tool.  Im going to paraphrase it here because it contains quite a spoiler and I don't want to ruin it for anyone that might pick it up:
"I realized that in the months since it happened, I hadn't been paying much attention to things like the sunrise, but that old sun had been coming up anyway.  It didn't really care how I felt, it was going to rise and set regardless of whether I noticed it, and if I was going to enjoy it, that was up to me."

So great, right?  It basically means you can't let the crap get you down or you will certainly miss all the wonderful stuff going on around you-and that life goes on after crappy things happen. It's a tough thing for me to remember honestly.

There are parts of my day where Avery lets out screams-ear piercing, blood curdling screams, for minutes on end-one scream about every 5-10 seconds. We had a lot of that this weekend, and today.  The worst part (or maybe it's the best part?) is that she laughs about it like it's the funniest thing in the world ever to fry my nerves down a little more each day.  She does it whether Im paying attention to her or not.  When trying to get her to sit and do something with me.  She does it when we are in the car.  She does  it when she is excited and when she is bored, when she is having fun and when she is not. Mix in a little tooth grinding so loud that you can probably hear it at the neighbors house, and Im exhausted.

Then there are the parts of my day when Avery cries or when she falls down out of nowhere. Parts when her hands are moving so quick and her body is so tense.  And everyday she cannot communicate-cannot tell me Im hungry, Im thirsty, Im cold, my car seat is too tight, Im sick, etc.  And, it sucks. And we have it pretty easy relatively speaking. But you guys all know that already.

The Vivint Gives Back Project winners were announced today and I watched the entire live podcast-even though IRSF did not win.  A foundation called FAST (for Angelman Syndrome) won the $250K.  They did an amazing job getting the votes and Im truly happy for them. Their research could very well impact Rett research.  I know they are excited to get going with that money starting clinical trials and I cannot wait to hear what they do.  I was struck by a quote in the winners video regarding Angelman syndrome "our kids are happy, but they are not healthy".  The same could be said for most girls with Rett. Avery is pretty healthy for the most part but many many girls with Rett are not.  And don't people always say "As long as you have your health!"  Sure, happiness is good-but what is it without your health?  It's a lot.

I want nothing more than for Rett to be cured-or treated-so my daughter (and so many others) can speak, use her hands and just be a typical child.  I want her to tell me "mom you are doing the best that you can and I love you".  I want to take her to get her nails done. I want to shop with her and for her to pick out her own clothes. I want that all so much.  And maybe that will happen.  Maybe the treatments that are down the road will prove to be the thing we need to make a difference.  I dont know.

Regardless,  Im starting to focus more on all the good that this life has brought me.  Recently, two moms that I "met" online through a group for kids with delays got Rett syndrome diagnoses.  One is a variant (FOXG1) and the other is as of now strictly a clinical diagnosis. I never ever want to "welcome" anyone else into this family but it felt good to be able to direct these moms toward some help and some hope.  I do have so much hope.  And I hope they feel that.  I was able to quickly get them in touch with people who can help them today.  In giving them hope, I realize how much I still have-even on the days when the grinding and the screaming and the "I didnt sign up for this" moments seem to pile up.  I was talking to someone about it the other day and I actually heard myself say, "As much as I want this all to go away, Rett syndrome has brought so many wonderful things and people into my life". I'd give it all back in a hot second if it would make my daughter typical but its true.

The support and love and generosity that we have felt from friends, family, and even strangers -has been overwhelming.  Our Strollathon Team alone (people that will actually be walking with us) is at least 60 people deep-so far.  Money is being donated daily in Avery's name.  I was contacted this past week by a complete stranger that wants to run a half marathon in Avery's honor.  There is so much good in this world.  So much.

I like to think I would be just as aware of this if Avery had a perfectly intact MECP2 gene.  But then I think, maybe this was all meant to be.  Maybe the fact that I had a close family friend with Down syndrome in my life from the age of 3.  And, 21 years later I met that family friends' cousin who then became my husband.  Then, I moved to California and my first real job was none other than case manager to kids with disabilities-and on may caseload was a girl with Rett syndrome.  I volunteered on the Board of a local down syndrome organization (ran by the mom of that family friend with DS who was now my aunt in law).  So many things preparing me...Weird right?

I don't believe that "God gives special children to special people"-but Im starting to think that there is some reason or plan behind all this.  I do think there is more to it than just noticing the sun rising and setting every day-but for now, Ill take that.



Tuesday, August 30, 2011

Kindergarten!

waiting....
all buckled up!
happy girl!
home from her first day!


Today was a big day. It's been marked on the calendar for a while now and I have been waiting patiently for it to come. Kindergarten. Moms all over our district sent their babies to their first day of school today-but for us it was a little different. I tend to think I have a slight advantage over those other moms. Moms of typical kids. Kids who may have never even been to preschool-or only ever went to a day care center. See, Avery has been a student in our school district for 2 full years now-because she is enrolled in special education. So, I wasn't totally freaked out. I didn't cry. Avery was so ready for that bus to pull up. She has been riding one since the day she turned 3. It's old hat to her-but the awesomeness hasn't quite worn off yet. She loves it just like she loved it back in 2009. The thing that is a little scary is she will now be attending an Elementary School with lots more kids and new people. Her old school was all special education so we were still protected by the bubble a bit. Bubble no more!

Over the summer, at least once a week, we drove by her school, and through the parking lot and I would tell her " sissy, this is your new school. Your class will be right down there-with Ms Carol. You are going to Kindergarten and are going to have so much fun!" And I would turn around and see her looking at it all and then I'd see the dimple. The dimple is a good clue that she is pretty stoked on whatever you are saying. So that was good.

Last night as I tucked her in, I whispered to her about the bus coming tomorrow and her new friends and her new teacher and she smiled as she drifted off to sleep. I had to wake her up this morning to get her ready and fed for her big day. She waited patiently for the bus and when it came-a huge grin and a gallop down the driveway! Plus lots of screams for her driver and the other two poor stunned kids on the bus!

When she got home, she was a happy girl. I asked her a million yes or no questions: did you like your aide (YES) did you like your teacher (YES) did you use your Tobii (YES) did you meet new friends (YES) do you want to go back tomorrow (YES).

I went through her backpack and it totally hit me-my kid is in elementary school! She is a Strandwood Roadrunner! And she already has a reading assignment-well more like one of those contests where you log your reading time and turn it in for a prize. I was happy to see that the SDC students are included in this school wide contest. Very cool.

Im looking forward to getting to know a new team and making some serious strides this year. Im going to come in soft and friendly-hoping to start pushing for time in the regular ed class. Stay tuned. Tomorrow, back to school night/date night!

Tuesday, August 16, 2011

wine and lunch for a good cause

On saturday the 6th we were so lucky to be included in a fantastic lunch/wine tour and tasting with great friends. This day was donated to the auction at Erika's Dream 5 this past February and our amazing friends "won" this unforgettable day in wine country. What a day.
It began with a champagne filled limo ride, at 11am.
Then we arrived here.
Align Left
Rubicon winery, owned by the Francis Ford-Coppola. Previously known as Inglenook Winery and soon to be know by that name again. The whole story was explained to us but by then I had had plenty of sparkling wine and cant recall all the details. The place was gorgeous. We were brought in to the building and poured some Sofia blanc de blancs which was lovely.

We were then brought around back and met by the head chef who gave us the most amazing behind the scenes, amidst the vines tour. They even had some chilled Chardonnay waiting among the growing vines for us. I typically dont love chardonnay, but this was amazing. The weather was ridiculous and the we couldnt have been surrounded by lovelier people. Ill drink to that!

Immediately following the tour we were led back inside and upstairs to a lovely private dining room above gigantic barrels of wine. The food and wine was so good it was silly. My favorite was the heirloom tomato, baby basil and burrata salad. But it was all so good.

Here is a group shot of all of us. We were missing one lovely lady who was sick with the flu-we missed you Lis!
And, of course, a shot of my fave dish.

After our meal, which included a lovely dessert and coffee, we went off to a few more wineries. Here is the gang at Rutherford Hill.

What a beautiful place. And beautiful friends. thank you!