Friday, May 13, 2011


i had started a new post and then blogger went all nutty and now its gone. and im so bummed. ill try my best to recreate it...

back in january I posted THIS. i had decided to stop taking my prescription medication that i had been taking off and on for years to make me feel like myself. after a few weeks, i started to experience what were probably slight withdrawal symptoms and went on a new medication. that was even worse. so i had an idea. i remembered that when I got pregnant with Avery, i was able to go off whatever medication i was taking at the time and i was fine. just fine. hormones i guess. so, maybe birth control would work. the bad side effects of the pill were how i was already feeling-irritable, crying easily, tired, and just generally pissed off. so maybe it would have the opposite effect on me?

i am about to finish my third month and i have to say, im different. i’m much more calm, patient and just generally happy. weird right? i’ve gained a few pounds but if thats the price i pay for happiness, ill take it.

could be because of the pill. or maybe it’s Avery’s new medication. or maybe a combination of both. we started Avery on lexapro about three weeks ago. weaned her off prozac-because they are the same class. there has been some success seen in a few girls with rett using lexapro and we are hoping that once we get to her full dosage we will see great results. so far so good. she is happy, much less tooth grinding, tons of “happy noises”, more giggling and big smiles. she has become awfully hands-y and is doing some hitting but im hopeful that when she settles in, things will calm down. she is also making lots of new sounds and noises-”talking” a ton. all very encouraging!

so, im happy right now. i still have my moments of “why us”, and “how is this my life”-recently i was even daydreaming about what this life would look like minus rett syndrome. what would be different? what would our demanding and sassy almost five year old be telling us to do? what camps would I be signing her up for? would we be planning a trip to disneyland? (yes, Im happy, but dont think typing this didnt bring a tear to my eye)

but lately, im just enjoying more sweet moments with my kids and being able to see the beauty in life. just tonight, in the car at a stoplight, i glanced to my left and saw how gorgeous it is out there. the trees and the sun shining. now that i think of it, the same thing happened yesterday. i saw the flowers. i saw the perfection in them and it even made me think about god. and if you know me, thats so not me. but its getting tough to see what nature has to offer without thinking that there is something behind it. whoa, this is getting deep.

i digress. all of this makes me realize that i have grown so much over the past 10 years. and i guess thats the point of life-to grow and evolve. i do think things happen the way they are supposed to happen. i know i was supposed to meet and fall in love with my husband. i know that for sure. the effect he has had on me has been monumental. can’t even put it into words really but all the good he holds has rubbed off on me in a major way. i have much more of a capacity to go with the flow. i know who i am now and am not as concerned with what other people think. i still have many things to work on. many things. but im getting there. and i have a feeling i will get there. this is progress.

Saturday, May 7, 2011

too much~its gonna be a long one

you got a minute? or sixty?
usually if there hasn't been a post in a while it means one of two things: not enough to say, or too much. this time it's due to having too many thoughts and things to update-coupled with a broken down laptop that took about a week to figure out. thank you apple store geniuses.

we had a very successful egg hunt here the day before easter. avery did amazing. unfortunately i lost (hopefully they are still here somewhere) most of my photos when the laptop died and had to be brought back to life. lucky for me i hijacked a friends camera and got a few good ones of Avery.

Nolan had a blast too. here he is in full glory on the swing set with the other kids.

and here are some pics Red got on his phone

look at all them kids!
by the time that was all over i didnt have it in me to make the kids easter baskets. i was up to my eyeballs in easter candy. maybe next year. nolan is now obsessed with candy, cake, cookies and all things sweet. the "i need a pink chocolate" and the "i need a blue chocolate" requests are just now starting to die down.

for easter we went to gramma's which is always so nice. the kids love it there and it's good to catch up with everyone. i'm so lucky we all get along so nicely. with my brother so far away and my parents gone, i really do cherish the family that red has given me by choosing me as his wife. (whoa that was sappy) but im serious.

the following weekend we attended the 8th annual dwight house dinner. a wonderful tradition. a great group of guys from Cal (plus their better halves), a steakhouse, and some fine wine makes for a night i definitely look forward to each year. sometimes i get a tad bit freaked out by 12 people all eating steak (just too much meat), but this year it didnt bother me. probably because we played golf beforehand and i downed a couple really strong margaritas (red won the golf match so we didnt have to drive). it's so easy to be with this group and i'm so lucky to have these people in my life.
Here are the boys

and their better halves (sorry about the poor pic quality-i cannot figure out my new camera)
the next day i headed down to san jose to see one of my rett mommy friends for dinner. we had some delicious food at pizza antica and had a great chat as usual. its always so good to talk to a mommy who completely understands what it's like to have a daughter with rett. not even the typical little girls in all directions got to us! it's so worth the hour long drive! next time i see her will be at the airport heading to the rett conference in boston...can.not.wait.

mid week i had a night out with three fabulous ladies who all happen to have been red's friends first but now i am proud to call them mine. the cream of the crop. mmm that cheese was divine.

this past weekend was a busy one as well. on saturday with the help of some amazingly wonderful and generous people, we put on the IRSF Family Fun Day BBQ at our local park. we had free burgers and dogs, chips and watermelon. we had a bounce house and face painting. we had a fire truck. and, we had a raffle. i have never done a raffle before and wasnt so sure it was going to be a hit. but it was. partially due to the fact that reds brother and his girlfriend, who had already offered to be the raffle ticket sales people, came fully dressed in their Derby finest. they were on their way to another party that day and it just worked! no one could turn them down and no one even cared really what the prizes were. we sold something like 600 tickets and made about 800 bucks (including some extra donations). as i was counting the money i got so emotional...there are many causes out there and the fact that people choose to give to this one that is so personal to us, it just touches me. many of the people helping out and in attendance i had never met before. we educated many about rett syndrome that day. i had a few people tell me they would pray for us (and yes, i appreciate it very much even though im not the prayin' kind of gal). random strangers at the park gave us money and it was fun. there were three other rett families there and it was just a great day. of course i was too busy to take any good pics. but red got a few...avery was so into the jumpy house-she had a huge smile on her face all day. the day was basically made possible by my friend Sarah and her Dad Rod. they are rock stars and should be given awards. so giving of their time, money and energy. it blows me away...
here is avery zipping around in delight

and nolan in the fire truck-he had tiger face paint and was diggin it.
then mothers day. had it here again. i got to take the morning to myself which was nice even if i was just running errands. called my amazing grandma in florida to wish her a happy day. she is living alone now since my grandpa passed away several months ago and i worry about her. but, she is so well taken care of by so many of her neighbors and it is wonderful to know that. she is so funny and sharp as a tack so it is always fun to chat with her.

we had red's parents (john and kasie), barb (very close family friend), franny (his grandmother), his aunt marilyn, his cousin michael david, brother mt and his girlfriend Sarah and brother charlie with his fiancee Kelly and their daughter rowen. it can be so tiring getting ready for it all and i over stress myself. but once everyone arrives its so worth it. there were moments last night when just thought, this is so great and im so glad we can do this. here is a shot of all the ladies in attendance-we missed tara who had to work. and don't anyone go getting any ideas-i only LOOK pregnant!