Comments on: A small taste of FX?

By: Umma

Umma — Tue, 12 Feb 2008 19:04:21 +0000

Kristie, I’m not seeing your submission to the webring yet, if you’re having issues let me know! You should have received an e-mail with a link to confirm your address. It might be in your junk folder if you didn’t yet receive it.

By: Kristie

Kristie — Tue, 12 Feb 2008 15:23:17 +0000

I signed up for the webring as well. I have felt the same way at times. I get the feeling like I have to get out of there, though. Immediately. My husband thinks it’s a little crazy. But it is the reality I live with, and even moreso for my kids with fragile X.

By: Umma

Umma — Tue, 12 Feb 2008 01:00:55 +0000

I’m really excited about the ring too! I know when we first received our diagnosis I was able to find sites about the medical side of FX but I didn’t find any families who were living with this until much later. There’s so much we can learn from one another and hopefully parents or grandparents who are out there looking for anyone who’s been there, done that will find us more easily.

By: Erika

Erika — Mon, 11 Feb 2008 22:02:40 +0000

I have been thinking about this exact same topic. It blows me away that my son is so happy when daily living is often so frustrating. So excited about the FX Ring. =)