Clouds, May 2010

Clouds, May 2010

Wednesday, July 24, 2013

the 22nd

I had no idea that Will & Kate were formally known as William & Catherine Mountbatten-Windsor. Mountbatten-Windsor? (And growing up I thought Zamelsky was a mouthful.) That aside, since the royal baby was in fact born on National Fragile X Awareness Day... it is my humble opinion that somebody over there in that Palace should have at least given our FX community a shout-out. That would definitely help raise awareness! 

It would hardly take the birth of a Prince for me to remember "22"... that number has actually had significance to me for a long, long time. Right before I started Kindergarten we moved into house #22, & that is where my sister & I grew up. And not too long after my parents moved out of that house, my son entered this world on the 22nd of June.

And most recently I now know the 22nd of July as The official National Fragile X Awareness Day-- that day is actually recognized as such by Congress.

During the rest of Fragile X Awareness Month (otherwise known as July), the social media sites I use have been flooded with awesome & informative fragile x facts. I particularly love the photos of everyone within the FX community, & outside supporters alike, showing off their green fragile x attire :)

I joined the latest fundraising campaign as well, & although my page has unfortunately not met its goal (hint hint)... the New Jersey team as a whole has kicked some serious ass! The Fragile X Association of NJ is well in the lead of the Virtual 5k Event with more than $6,700 raised so far!

Personally I have been slightly distracted as far as raising awareness this month, with the sort of gusto I would normally exhibit.

June came & went on the most bittersweet note, with my son's 8th birthday being right on the heel's of my grandmother's passing... and... learning that my sister is expecting (which my heart has not stopped smiling since I heard the news)... truly <3

But in the moment this is back-to-back with the 4th of July holiday, & then began the annual surplus of July birthdays in our family...  including my mom who had of course just lost her own mom...

But she was also saying goodbye with barely any proper closure, to her entire teaching career... because as life would have it, her retirement was happening simultaneously...

And might I add, as Hayden's summer program began we've also been exploring additional childcare with much-needed consistency, so we can both balance work/home schedules better... translation: serious stress on me as I am coordinating services with a special needs agency, & learning to put my trust into a complete stranger...

And speaking of working with someone new, Hayden's school also assigned a Behaviorist to his case... & this person who is supposed to be part of his summer curriculum has so far only contributed with a complete inability to properly communicate, or adhere to scheduling.

I think that's about it.

Well, except for the incident with my eye last week, which I could not properly describe without its own blog post or something. But long story short, H accidentally poked me in the eye with a screwdriver. (It is going to be okay... the corneal abrasion has healed & the blurriness is clearing up a little more each day.)

So, no. I have not given Fragile X Awareness Month the attention it deserves. Not that any awareness should ever be limited to an occasion, but this does deserve the proper attention. I will attempt to make up for that.

I am going to begin by sharing a very personal letter to one of my beloved late grandfathers... a letter which has only previously existed in my mind. But it will explain things quite well.

To be continued tomorrow...


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