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.


Colleen said...

I think that noticing the sun rising and setting is a great place to start! Regardless of whatever any of your kids are, you are special, period. xx

Tanis said...

Thanks for this post. I sometimes feel very alone in this Rett adventure seeing as I haven't been able to find anyone else in my city with a daughter with Retts. So reading this pot, knowing that our days seems to be identical really helps!
I totally agree about the deciding to enjoy the sunrise/sunset is our own. Over the weekend Melia was sick, and when she is sick she gets quiet and cuddly, and I know I probably should 'enjoy' her being sick but I did. There aren't many times when she isn't screaming or grinding her teeth or just fraying every nerve in my body so I chose to enjoy the few days when she wasn't!!

Kim said...

great book, great quote! (did you read her first glass castle???) anyway you are meant to be avery's mom and it does suck not getting to do the things with her that you planned and want (i know!!!) but look how much you are helping other families! your open honesty makes such a difference in people's lives. we all know our secial kids are blessings, but it is also nice to know that it is a hard pill to swallow at times. you are fabulous and i seriously hope we can meet in person one day!

Tina said...

I don't think your job that you had with a girl with Rett on your caseload is weird. It's God's hand at work. He was preparing you the best He could. I believe the same with me and learning about special ed. laws in my job before I had kids. It wasn't a job that I chose, rather the superintendant of school district I wasn't working for at the time sought me out for the job even though I was teaching computer classes at the time. Learning about special ed laws prepared me so that I can be an advocate for Bo. Now I know all the laws and how to make them work best for him.