Wednesday, March 16, 2011


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We're two weeks past Ayden's diagnosis today. The title of this blog says exactly how I'm feeling, but not all in a negative aspect.

I'm overwhelmed first because of the information flow I've been receiving. For those geeks out there, it's much like I imagine Neo felt the first time he was hooked up in The Matrix. Definitely not a bad thing, I want to sponge all this up not only for Ayden, but also for my other family members affected by FXS.

Second, I'm overwhelmed because of the outpouring of support from the FXS community. I am definitely a social networking person - facebook, blogging, twitter - you name it and I probably do it. I have a ton of friends online that I've never met in real life, and some that I met online and HAVE met. I started by adding this blog to the Fragile X Webring and then went to FB. I added at least 10 new people to my friends list just yesterday and had conversations with almost every one. I'm SO EXCITED at how amazing the people are I've met so far and how willing to help they are as well.

Third, I'm overwhelmed because I'm filling out forms for Ayden's FXS clinic visit and DON'T REMEMBER ALL THIS STUFF. Again, not bad, but mildly frustrating. I need to get more organized so I can just go to my files and find the information I forget. (my large stack of papers on my bedroom floor disagrees!!)

On top of all this - I'm planning my other sons's 2nd birthday party, still dealing with some fallout from our crazy January (I SO need to remember to call the insurance company), and oh yes, dealing with what I call a 'developmental spurt' from Ayden. Much like a growth spurt, I find Ayden has times where he will just start doing a bunch of new things at once or as in this case, start understanding a lot more at once. It's great, but in this case causes an influx of screaming, whining, and frustration as he is again dealing with being unable to communicate with us. (for both of us!)

1 comment:

  1. Overwhelmed is pretty much where we stayed for the entire first year after the diagnosis. Not only were there so many new things to do (evaluations, therapy, transition to school) but there were also so many new worries (I don't have to list those, you know them yourself, I'm sure).

    I can offer you one tip, when you finish filling out that evaluation and get all the dates and stuff in there...keep a copy so you don't have to go through it all over again next'll see the same questions again and again and :-)