Wednesday, July 1, 2009

Know What I Wish?

I was thinking the other day about how I wish that I could meet all of you! How great it would be for us all to be able to meet in one place (I'd opt for anyone living in Australia).

I got a call the other day from someone who's son was recently diagnosed with Fragile X. She got my name through a friend of hers who knows my sister, and therefore knows about my situation. As I talked to her, I found myself wanting to just talk and talk and talk. I'm not sure I was even much help to her, but it all reminded me of when we got our first news. All the emotions, uncertainties, questions, etc. I told her one of the most important things to me was getting in touch with others who were going through the same thing. That's how I got questions answered, resources, and just knowing that the feelings I was feeling were okay and normal. I felt like I truly ached for her. I found myself praying for her marriage and family, knowing what a toll it can take on couples.

Anyhoo, then I started wishing this wish....especially as I got responses from those of you I requested information from via email. I've loved having you all rejoice with me in the little things and feel compassion for me in the not-so-good things. And I've loved feeling a part of each of your lives as well. So, thank you! And who knows, maybe one day........

5 comments:

Sarah said...

I wish we could meet, too! We'll most likely be at the conference next summer. Maybe then??

SB said...

I love meeting other moms with FX kids. I remember the first time I was at a conference and standing in a room full of carriers was a bit wild. It was like looking at myself over and over.

I would gladly meet up with other moms :) Maybe we should all book a cruise.....(after we win the Lottery)

FXSmom said...

i know what u mean :) I've met only 2 moms with fxs kids in person and it was AMAZING!!

Vicki Davis said...

I totally know where you are coming from. I am lucky to have another FX Mom in town, and another I have talked to on the phone in LA. I was jealous of the LA Group, as they have a Movie day each month, and a lot of memeber who attend there events. Even though the foundation is here, and the MIND, I haven't met too many other FXer's. I know of one girl who went to the college I worked at, but she dropped out, and I never met her.

Anyhoo... it sure would be fun to meet everyone, I feel like I know you all, and your my "friends" I sometimes recount a story I read, saying, this happened to a friend of mine, as its how I feel even if we have never met in person.

Stephanie said...

I look forward to getting to know you (as I type I'm bawling my eyes out...SCARED!!!). This entry really hit me and made me realize...I'm truly scared and feel so alone (even though I know my husband will support me) He just doesn't worry about something until we are faced with it and to him we aren't faced with anything. I'm at the begginning of this journey. I have no babies yet but I'm consistantly worry about the what-ifs, since I am a carrier of FX.