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)?

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'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!