Wednesday, November 18, 2009

It's been a while....

Hello!

It's been so long since I sat down to write something to blog. Lucky for me, that there has been so much information out there on the research and clinical trial front, that I have been able to keep the Fragile X awareness spreading alive!

But, it was time to write something. I have been feeling so blessed lately, yet my everyday life has been harder and busier than ever. My husband and I both have jobs, we have health insurance, our sons are happy and healthy. Really, what more matters?

My Fragile X involvement is increasing at lightening speed...parent resource groups are partnering with local "FX clinics" to provide broader and better services to families. I feel like I will have some "help" finally in having a place where parents can go and meet other parents and professionals and get services for their children.

The Board of Education position has proven to be a challenging one. I was elected 6 months ago, 17 months into contract negotiations with the teachers union that is now 23 months old. To say it has been a big learning curve is an understatement. It's a huge time commitment for a thankless elected volunteer position. The morale and the emotional climate in town is deteriorating at a warped speed, as any negotiations at this point in the statutory process are via a 3rd neutral party, so there's not even any communication between the two sides, very sad. I am not on the negotiating committee (thankfully) nor would I ever want to be,

I am in awe of elected political officials. I don't care what side you root for, I don't care what party you're affiliated with, but I just want to say thanks to all of them.

Being elected to any position sort of opens up a door where people feel entitled to say or do anything to you, even though, they don't even know your last name. The misinformation that travels around is pretty scary too. I have been accused of so many things in the past few weeks, it's pretty shocking.

Anyway....so the Holidays are right around the corner! I don't really look forward to it all. It reminds me that my children will never fully understand the spiritual or commercial aspects of it. We put up the tree, we do the Santa thing, take holiday photos, we go to church....it just all seems lost on them. I don't think they really care either way. They do like seeing family and spending time together with others, so that's the focus of our holidays, time spent with others.

It's sort of like when you first get a diagnosis that your child isn't "normal" and you have to grieve for loss of the child that you thought you'd have, and nurture a different child. There are events that remind you of that grief you walk around with, like holidays, whether it's Halloween, Thanksgiving or Christmas...it doesn't matter, my holiday is very different from most people I know. Sometimes it's miserable for me, and sometimes there's nothing I can't do and I move forward.

Can you tell what kind of day I'm having?

That's my resolution for 2010....to spend more time with others. I need to take a step back from trying to change the world and make it a better place, and take my kids out more. I need to move forward from the grief that rears it's ugly head at any given moment and stay focused on the positive.

I need to remember that my boys are more precious than most, that my husband is a rare gem who supports everything I do, no matter what. I have to remember that we're healthy and we have each other, and that not much else matters.

Thanks for listening!
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