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Friday, July 22, 2011

facebook-why it's awesome.

There are endless reasons people aren't fans, uh-addicts of facebook yet-"i don't get it" (neither did I), "i don't want all my stuff out there online forever" (this doesnt bug me as much as maybe it should), or "i dont have time" (believe me you will make time!). One of the main reasons people use is to say it has created this weird new universe where no one talks on the phone anymore, let alone, in person and is therefore ruining society for good. This may be slightly true. Maybe it does eliminate the need for an actual phone call but I for one have never been a real fan of the phone-it makes me a little edgy to hear it ring actually. I always feel like Im bugging someone when I call-you just have no way of knowing what is going on at the other end of the line and there are still people who will answer their phone when they are busy or whatever and its always just awkward for everyone. So I am a huge email/text fan. I know the other person will get it, read it, take it in, think a little and then respond when they have time. I like that-no pressure.
Then there is facebook. It's a total no pressure zone. Sure there are people who still post only bragging status updates (sure I have been known to do it from time to time but not EVERY time) that make you want to puke, (and make you feel pressured to keep us with the Joneses-or Zuckerbergs in this case) but you can put it out there and if someone wants to read it they can. If not they can hit "hide all posts from Erica" and everyone is happy. You can post a gazillion pictures of your kids and no one feels obligated to look-they look only because they want to-not because you sent them an email with 175 photos of one day in the life of your kid.
I think facebook is awesome.

I probably spend WAY too much time on it but it honestly has been a great support to me in the past couple years. I have gotten to know other moms/families dealing with rett syndrome all over the world. I have used facebook to raise money and awareness for rett syndrome. I have gotten back in touch with old friends, settled some long overdue disagreements and even been apologized to by a handful of people-made a couple apologies myself.

But, on to the reason for this post. Last month I was scrolling through the news feed when I noticed that a friend "liked" a page called VIVINT. I had absolutely no idea what VIVINT was so I checked it out. I found they are a home automation company-check it out HERE- and that they were accepting nominations for regional charities to win $250K. I checked to see if IRSF was listed in the Eastern Region. They were not. I sent in a quick nomination-and the next day noticed we were listed. There was a short endorsement period and the top 20 charities in each of the 5 regions would move on to phase two. IRSF easily made it to phase two and we are currently in 3rd place in our region and 4th overall. We have nearly 50,000 votes but are nearly 50,000 votes behind the leader. If we make it to first place by August 27th, IRSf will be awarded $250K. What does this have to do with facebook? You can only vote with a facebook account!

So, if you are already addicted to, I mean a fan of, facebook-then please please please use your addiction for good and vote for us HERE and then ask all your facebook friends to do the same. And if you aren't yet there-maybe just create an account and vote every day till 8/27. It may be just what we need to get to first place! Then when people say "Hey I thought you would NEVER get on Facebook??!!!" You can say it was for a very good cause-to get our girls closer to a CURE for Rett Syndrome. What could be better than that?

Monday, July 11, 2011

Half Full? Nope, spilling over.



It's a common theme when Rett syndrome enters your life: one day can be utterly unbearable and then next, just like that, is heaven on earth.

Avery's 5th birthday-a day I had been dreading a little bit more every day since she turned 4-arrived on Friday. Red had swung back by the house after his workout because he forgot something and he got to see her just as she had gotten out of bed. He and I sang Happy Birthday to her and she just smiled at us so sweetly. It was a heart-melter. The day started great and ended well. Well, it ended with me stressing fully about the party that was to happen the next day. Would we have enough snacks, pizza, cake, and most importantly BEER? (We did) Would Avery have a great time or would she be a squawking puddle on the sidewalk? (She did and she wasn't!) Would it be too hot? (It was perfect)

I won't drone on and get all philosophical about it because I am reminded of something I learned in a philosophy/religion class in college-it was something about how when you tell someone about a certain experience, it changes the experience a bit so that it no longer means what it once did. ahhh, philosophy. So, in that spirit I will just say-it was heavenly. Avery had a smile of pure joy on her face from the moment we arrived. Even while she waited in the car for us to unload all the party goods. She never squawked once-unless from pure delight. When she saw her friends Katie and Claire (who also have Rett) she was calm, smiled, giggled. She was in her element, so to speak-that element being WATER. She loves it. She goes and goes with her little Teva's on her feet and her Safe T Seal vest. She likes to go it alone. Luckily Red took her in most of the day b/c he is so much more relaxed with her than I am.

There were many moments when I looked around and saw our closest friends and family and thought-wow-this moment-this day-is awesome. We have a wonderful life. Both my kids were having fun without much effort on our part. We had so many people willing to help. It totally overwhelmed me when it came time to sing happy birthday-I got choked up for sure. Avery was all smiles and it felt NORMAL.

After that, Avery had about a zillion popsicles. I swam with her a little and we had fun. It was just the best day. I thank everyone who was there for coming and supporting us-especially Claire and Katie. It felt so good to have you all there. We all felt so loved-still do.

Our glass was no where near half empty or half full that day, it just filled up and overflowed. So full.


Wednesday, July 6, 2011

Half Full or Half Empty?


People are always asking this question, to try to label you as an optimist or pessimist, like there is only one answer (HALF FULL!!!). But the truth is it's always both. It's half full and half empty and couldn't be one without the other. At least that's how it feels in my life these days.

Tonight around 7:30 as Im getting dinner ready I look outside and see my almost 3 year old son playing catch with his dad on the deck. Nolan is wearing only pajama bottoms. Just as I peek out they exchange a high five and I smile to myself. It is such a special moment and Im glad to have seen it because its a "half full" moment. Then I remember my nearly five year old daughter is already asleep in her bed because she has to take medication to fall asleep. In fact she takes three medications daily. She should be out there with them playing. But she can't. Half empty. But still I stare out the window and that half full moment is still there. so, see? It's both.

This weekend we once again headed out to the fantastic party the golf club we belong to puts on every year. We have been going since before we were members and before I started playing golf this party was a major deciding factor when we joined. I dont remember if we went when Avery was 2, but Im sure we did. I know we went at nearly 3 because I have some pictures of her having a blast by the bounce house eating ice cream. Last year we had our amazing sitter ready to come pick her up after we go there if she wasnt doing well. As soon as we got out of the car, she lost it. We almost had to drag her up the hill to the registration table. I made the call and once her sitter arrived, she was fine. I was bummed she couldnt stay and enjoy the party. so bummed. half empty. But Nolan had a blast. He ate ice cream and bounced the bounce house to death. half full.

This year, we had the same plan. I wanted Avery to come with us as a family and enjoy the party. At least get some ice cream. But as soon as we got out of the car-lost it. again. As we are walking through the parking lot in the 100 degree heat she is pulling on my arm screaming and Im sweating. She is sweating. We dont even make it to the registration table. Avery has thrown herself onto the sidewalk squawking. I text the sitter and she is on her way. Again, once Avery sees her she is fine. I go in to the party to find Red and our family and friends. I cry a little behind my sunglasses. I get some good advice then I get a beer.

We had a great time. Nolan had so much fun. He was red in the face within minutes from the bounce house. He waited in line for a balloon animal. He danced his little tushy off. He ate a pretty good dinner. He got cotton candy. He loved the fireworks. We had invited some friends this year and sat with them on the golf course to watch the fireworks. Its a great show and so close to where we sit. There is nothing like it. So, Im laying on the grass surrounded by some of our closest friends, my husband and my son. The weathr I look back at Nolan's face which is just pure wonder. The weather is fantastic and the fireworks are beautiful. And my heart is so full. My life is so wonderful in that moment. But then, Avery is not there. Again, half empty.

Im not sure if it's because my heart has been broken so badly by Rett syndrome that I can appreciate these tiny moments so much more, or if it is just what happens when you become a mom. But there is almost no in between these days.

I do experience half full moments with Avery too. There are many of those. Many moments when we are so proud that we unexpectedly laugh and cry at the same time. And times that surprise us-like when she did just fine at the 4th of July parade and laughed when she got candy thrown at her.

I just hate that she can't be a part of it all, all the time.