Clouds, May 2010

Clouds, May 2010

Thursday, July 28, 2011

"The pen is mightier than the sword" --Edward Bulwer-Lytton, 1839

We took Hayden to the M.I.N.D. Institute back in April (I may have mentioned this in an earlier blog post, at some point). 

The report was said to have been in the mail last month, around the time that we received a letter (per my request) to forward to the Child Study Team at Hayden's school. Now that the CST is out-sourced [insert gesture to Governor Christie here], I just wanted something in writing to reiterate the importance of maintaining Hayden's services moving forward...or something to that effect. Although the new case manager we had last year actually impressed me (and she had some shoes to fill like you wouldn't believe), unfortunately in September we'll have another new one. Again, a direct result of the CST being out-sourced [yay for budget cuts]. I don't know this new person yet, they certainly do not know Hayden, nor are they aware of HOW we got to where we are now. Or what he needs, and why. Lord willing I'll be proved wrong. Just in case, I requested the letter-- always better to have it before you need it. 

After a couple more follow-ups with our contacts at M.I.N.D., and a chain of emails, we learned that we should have already received the report. For whatever reason we didn't, so in the mean time, someone forwarded me an electronic copy of it at 2:00PM Eastern Time.

I read all four pages, twice, and then around half past two I went out for some air and some lunch. I put the windows down, left the AC off, and headed to Panera. I ordered a 'pick two' or whatever they call it: a 1/2 of a I-cost-as-much-as-a-wine-from napa chicken salad sandwich, and a 1/2 of a priced-like-champagne-but-we-only-include-the strawberry salad. 

I didn't know how distracted I was until I pulled my keys out on the way to my car, only to realize I was actually walking through the parking lot with a pen in my hand.

I got back to the office building, walked through the echo-y lobby, and stepped in the elevator (we're only three flights up, but what claustrophobic person doesn't love an elevator). The doors closed, but nothing happened. I was just about to enjoy a panic attack when I realized I never pushed the button to tell it where to go. 

That four-page report had completely monopolized my concentration. This is the latest piece of paper that I have to show for my 6yr old child. Not a kindergarten certificate, or some kind of camp award, or a sports thing, or whatever a typical boy his age might have earned. There is nothing in that report I didn't already live through, there is nothing in that report I don't already know, but everything in that report is nothing I like to be reminded of. 

The genuine-as-family specialists at M.I.N.D. are needless-to-say, beyond wonderful. I have no negative... anything... towards them. Quite the contrary. But when I see something in writing pertaining to Hayden-- good or bad, works both ways-- it can really hit me. 

About 4:00PM Eastern Time I was checking webmail and saw this message from someone at the National Fragile X Foundation:

"Thank you for submitting your "Tale of Self-Determination" in celebration of Awareness Day!  We are planning on incorporating some of the submissions into other upcoming NFXF activities.  Recently, a Fragile X parent approached us to ask for help with a fundraiser.  One of the activities she is planning includes photos of people with Fragile X along with 1-2 sentence captions.  We loved your photo and story on the Awareness Day Page and wanted to see if you are willing to let us use them as part of this fundraiser."

( This is the picture that accompanied our submission: )

There were 172 stories submitted (from June 28th to July 25th-- completely unrelated, but happens to be my sister's birthday). I commented on every single one of them. 172 submissions and mine is one-- not the one, but one-- that stood out. So you can probably get an idea of just how proud I am that Hayden never ceases to grab the attention of others.

That was several hours ago and I'm still beaming about it on the inside.

Yes, the written word is a powerful thing.

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