Another busy day. Funny I quit school and within a couple of weeks life has gotten better. I was accepted to get services at DRAIL (Independent Living Center). They are going to teach me money management and one on one cooking skills, they are going to come out to my house for the cooking and I think money management. My parents seemed pleased with that idea...and I think my Mom believes I'll be able to cook dinner for her more often so she doesn't have to after a long day at work (she's a special ed teacher)
Today I got the FISH test to see if I have a 22Q Deleation (VCFS). I'm trying not to get my hopes up but I really do want it to be that, that I have the 22Q Deleation or VCFS. It would answer so many questions. My parents and sister plus extendend family have been very supportive of me over the last 31 years. If it comes out that I do have VCFS or something like it my mom and I are going to try to start a local support group. In a city of a little over 300,000 there's gotta be a few others out there with this. I also am going to try to go to the conference that is in Salt Lake City if it turns out that I have this VCFS. I want to help people become aware of this. It baffles my mind that what 1 in 2,000 people are born with this and hardly anyone has heard of it? Crazy. If I do have VCFS I feel as though I have a responsiblity to those with young children who have it who don't know what to except when their children to get older they can see that their children will in some way be able to live a full productive life with support from family, etc.
Hi Emily!
I am really glad to hear that you are getting those services...Good for you! I am sure you and your mom are both very happy about that. You are quite a remarkable woman...going out and getting your own help. That is wonderful.
Well when will you hear about the results? And what happens if it turns out you do not have this? Be prepared for anything.
Thank you so much for sharing here...I always love to hear the latest goings on in your world.
Thanks!
I'm not sure when I find out about the FISH test results, might be a good thing though so I don't stare at the phone waiting for them to get back to me. It took my Dad awhile to be convinced I think that I could have VCFS I think he just didn't want me to get my hopes up too high then to find out that I don't have it (I think it's a male thing) but when the Dr's at UC Davis MIND started communicating with my Mom he came around he's always been 100% supporitve of me finding out though if it was going to make me feel better then he was for it. If the results come back that I do have VCFS I might attend the Salt Lake City Conference in July, we could actually drive from where we live in California but flying might be what I would do. I haven't really told anyone outside my family about it so I haven't mentioned it on facebook yet I will if the test results come back saying I have VCFS or something like that.