Clouds, May 2010

Clouds, May 2010

Thursday, September 11, 2014


Someone recently emailed me a flyer about an upcoming fundraiser-- I know who it came from but I do not know them well, & only knew this person for a short period of time. The fundraiser is a social event at a restaurant, so a portion of the proceeds will benefit a particular foundation. It's an organization which supports research for a rare genetic disorder that their relative has; a relative of the person who I barely know in the first place. (The genetic disorder, by the way, happens to not have anything in common with Hayden's.)  

Although I do respect the fact that there was a personal message, on the other hand, I don't love what it says:

I know you understand the need for research for genetic disorders. Please share this flyer with your contacts."

That rubbed me the wrong way from the get-go. This person is making an assumption that I should be interested in a cause of some kind, & furthermore, no "Hi, How are you?" or "How is Hayden?" or anything... & then asking me right off-the-bat to pass it on when I don't even know what it is.

Following a paragraph summarizing how this person's relative has handled their experience, the email concludes with,

"My [relative] wants to give back to the organization that has helped [them]. I would greatly appreciate it if you would attend the fundraiser and/or make a donation in [their] name.
[First & last name of Sender]"

We met one another through the local school district. For a short period, this individual was in an appropriate position to address my concerns (during one of the many times I was advocating for Hayden). My input seemed well-received & our conversation productive. I expressed my gratitude, just as I am always grateful for anyone who is receptive to the proper support for Hayden.

However I would eventually learn that none of my concerns were even followed through, despite the reassurance communicated to me. There happened to be a change in staff, but we are adults & that shouldn't make a difference. We have responsibilities even when we're passing them on to someone else-- especially if you work within the education system & this is solely for the benefit of a student. Furthermore a young child, & even beyond that, one with special needs.

When I initially saw the email I wasn't sure why I was mad... was it because I felt let down? Does that make it okay to say this person had no nerve to ask me for support? That seems mean on my part or at least unreasonable.

The truth is my standard answer when solicitors call, for example, is always the same, "All of our donations go towards foundations which support a genetic disorder that our son has." My wording may vary but the thought never changes. 

Despite the fact that I've always felt these calls are rude, I used to often send back at least a little money if I received a request for donations in the mail. I feel those are less obnoxious. Of course after I became a mom & then ultimately learned I was a parent of a child with special needs, you could say my global charitable desire sort of dwindled. My energy focused on one.

I felt, & still feel compelled, to put all of my efforts there... to the fragile x community... because my son is that community... my friend's children are that community... & if you include associated disorders my mom is that community, my aunts are that community, & (unbeknownst to him) my late grandfather was that community too.

Fragile x became a steady part of our conversations, & our lives as a whole, when I was 31 years old & my only child was 17 months of age. 

I had a lot of hope back then that there could be a cure one day. I started to learn just how big our little community is (if you know what I mean), & that our impact is actually widespread. Our future potential even more so. It's a simple equation: awareness adds up to dollars which add up to research funding, & we all know what that equals.

A part of me does not necessarily have hope for a complete cure anymore, but I do believe that the medical community will continue to discover treatments. And ultimately one that is effective enough to significantly improve the lives of people affected by fragile x syndrome.

I don't want to promote any ideas that we shouldn't support one another-- of course we should. I, myself, have encouraged people to donate to the fragile x community even if they're not literally a part of it.

After all, contributions are like handing out hope. But I guess I am reserving mine for Hayden.


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