Bending without breaking.

It seems to me, at times, that a good portion of my life in the last 6 years has been spent exploring the question of just how far I can bend without breaking. I’d like to say I have an answer but the experiment is still in progress. Please stay tuned.

I have had this feeling for a while that my life is on the razor’s edge and that I must be very, very still and quiet or I will fall. But standing here, holding my breath, is still slicing me to shreds. There is no winning solution yet, that I can see, but I’m still looking. I have begun to think that the answer may be that I need to fall, that this place I’ve found myself is simply a dead end. I’m working up the courage to jump.

In the short term, my approach has been bury myself in work, in planning our conference, in making over Monkey’s room. Don’t knock it works! There isn’t space to ponder the bigger issues, the real issues, lurking beneath when you’re obsessing over just the precise hue of red to put on your 7 year old’s walls. Sure it comes across as being slightly obsessive and your friends might start poking fun at you but that is a small price to pay!

The problem is, I can see the end of all of my distractions and I’m starting to worry about what to do next1. I’m creating a mental list of “Things That Must Be Done” to stave off the inevitable2 slump that I will descend into as soon as I no longer have 80 gazillion things to ponder instead. I know I am not the only person who does this but, in what I like to believe is an improvement in my mental state, I can see how maybe this isn’t a good long term strategy…that maybe I should try to, you know, cope.

I would love to hear from anyone who has successfully stepped off this hamster wheel…

  1. Yes, I DO worry about what to worry about next. That is normal, right? []
  2. in my mind []

These things don’t just put themselves together?

A year or so ago, Eric and I spoke with the Fragile X program at Children’s Hospital about putting on a conference geared towards professionals. After a few starts and stops, it stopped. It turns out it takes time and effort and more than one single brain cell1 to put together a conference! Are you surprised? No? Are you surprised that I was surprised? That’s what I thought.

Then Eric started thinking again, which never bodes well for me. A phone call and a couple e-mails later and TADA! We’re putting on a conference. I’m still wondering how the heck it happened but I’m also super, duper, wildly excited about it!

The very first conference we attended, about 6 months after our diagnosis, featured Tracy Murnan Stackhouse and Sarah Sharfenaker (better known as “Mouse”) and now we are bringing them back to New England for a one day conference. They are amazing presenters and, if you come, you will walk away with your head positively buzzing with ideas.

Plus, you can meet some of the coolest fragile X families around. We are doing catered boxed lunches to keep lines to a minimum and mingling time to a maximum, we really, really want the attendees to get to know each other a bit and make some connections!

This is the conference brochure with details: 2012 Fragile X Conference Brochure.

Please see the conference website for additional details: 2012 Fragile X Conference Website.

I REALLY hope we get to see you there!

 

 

  1. all I’ve got to spare most days. []

I only show up when I need something!

I’m not sure where my writer’s block is coming from, it’s incredibly frustrating to have so much to say and no way to get it from my brain to the screen. Perhaps more wine will help? Or perhaps less? HAHA! Ugh.

Anyway… I need something *SHOCKER*, I know.

I would like to ask each and everyone of you to go to the link below and take 30 seconds to fill it out. It will generate a letter to your members of Congress, asking them to keep the current funding, in the NIH, CDC and DoD budgets targeted at fragile X research, in place for another year.

This is the money that funds research towards a cure. Research, by the way, that is showing promise in treating Autism, Alzheimer’s and Parkinson’s. This is the money that keeps the National Fragile X Foundation operating so that when a family, like mine, has their world rocked to the core…there is someone to help them figure out how to find a new normal.

I’d like you to take one minute and look at your child. Imagine for a moment that he or she has Fragile X Syndrome. Imagine for one moment that you DID THAT to him or her. Imagine for one moment that there is absolutely NOTHING you can do to fix it. You can fight the school and insurance company for therapy and it will help, it will help a lot, but it won’t FIX IT. Nothing will fix it.

Now, tell me why, when we are getting close to medications that can FIX IT, you won’t send a letter telling them not to stop short of the goal line?

Send a Letter!

UPDATE! As of 11am we have…2,220 letters total (That’s up 175 letters from 9 AM!!) 82 Senators and 255 Reps (almost 60% of House) have heard from us. We need more letters especially in ID, LA, HI, UT, VT, MT (we only have 1 from each) and DE, AK, NV (we have 0 from these states).

Please write a letter even if your state isn’t listed here…we’re still missing some Senators and Reps from other states!

If you don’t know what to write for the Personal Statement you can say “I have friends who are affected by fragile X syndrome.

2012 Fragile X Conference in Worcester, Massachusetts

We have a ton of things going on here at home and work and soon we will be jumping on a plane and heading to Washington, D.C. for Advocacy Day. Even knowing we had all of this going on we decided we had time for one more *little* event…

On April 14th our LINKS group and the Western MA group will be hosting Tracy & Mouse of Developmental FX. Eep! I swore when we started this group that we would not be doing a conference. Mmmm…yum…eating my words now. We will have lots more to share very, very soon but in the meantime please save the date for us! It will be a full day conference!

Check out the announcement on the LINKS blog:

April 14, 2012 – Fragile X Conference in Worcester, MA.