Monday, October 1, 2007

More Raising Fragile X Awareness - You'll never believe what I did!

So...long story short...

Back in July, the lovely people from the National Fragile X Foundation contacted me and asked if I would make an appearance at a golf outing fundraiser that a NJ Mayor was having to raise funds for FX.

Hmmmm, I remember thinking....letting people see my newly surgically enhanced face? Not a HUGE fan of speaking in public (thank-you fragile x) and super nervous around new people (again, thanks fragile x for providing me with so many carrier traits I don't need in my life). I tell myself, that it's the LEAST I could do.....and I commit to it.

Well, I didn't hear anything until a couple days before the event (9/28) from the Mayor of Haledon, so I'm thinking they replaced me or I contact the NFXF just to let them know..and turns out that they WERE expecting me, and wanted me to talk about FX, help out with raffles they were having, mingle with the 75 golfers, etc.... I didn't get the story from the Mayor's assistant as to exactly who it was that is affected by FX, which I thought odd, because I assume it's his child and that's why he's having this outing.

So I go....but let me just tell you about how it all went down....I am in the office Fridays, and as it turns out, the golf outing which was held in Franklin, NJ was about 40 miles NW of Morristown, so I was lucky that my boss just told me to leave at 1 and go, no questions asked when I told her where I was going. I get there at 2pm.

The event was great....I met Mayor Stampone, his wife and his mother-in law. Turns out that the Mayor's MIL has 4 daughters...all carriers of FX (like me). Those 4 daughters had a total of 8 children, and one of them, a 5 year old boy is the only one affected with Fragile X. There are some carriers among the female grandchildren, and there is another grandson who is autistic, without FX.

OK, so the Mayor is Uncle to a nephew with FX. I made the connection. And he's having this highly organized golf-outing.

Me? I have 2 kids, a brother and sister affected...OMG, what is WRONG with me? Yes, we had a letter writing campaign in 2005 and raised a nice amount of $$ for the NFXF....but OMG...the guilt set in as I made the 100 mile trek back to my home during rush hour on Friday...only to run into the house, kiss my mom and the boys hello and change my clothes to run to my baby-sitters Sweet 16 which I was meeting Anthony at in Staten Island...thank-goodness for Cuginetta and family....they picked me up so Anthony and I wouldn't have 2 cars there and could go home together. And it was LOVELY and we had a great time!

I digress....why aren't we as a family doing more to raise awareness and funds for Fragile X?

Poor was all I could talk about over the really LOUD music....and he promised me that we'd talk about it over the weekend and we could do whatever I wanted, he'd support me. with this fire in me, Iget home at 12:30, up at 7, shower and leave to go to a MK skin care class on Saturday morning at 9...again, lovely, my hostess lives on the water in Toms River, and it was so nice there.

I rush to the Marlboro Rec. Center (1:15), meet Anthony to get Ben so he, Matty and the soccer team can take team photos...go home with Ben....change and we're back on the soccer field for their game at 2:15...til about 4pm.

We ALL come home and crash.....all 4 of us, we wake up and go out for a great dinner...turns out we were supposed to have company that cancelled that afternoon, which turned out to be a good thing...we were all sooooo tired.

Notice: we still haven't had a moment to talk about fund raising....

Sunday...up early, soccer at 10 for both kids....come home at 12, get them lunch, do laundry, straighten up the house, about 2 hours of paperwork, family bike ride, dinner, kids showers, bed....let's not forget football too...and it's 9m before you know it....and I'm out like a light!

Notice: we still haven't talked about fund raising.....UGH!

Now it's Monday...and I'm working (albeit at home, which is nice, but not glamorous in ANY way)...this is going to be a LONG week.....
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