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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.