Tuesday, November 29, 2005

ooich.

Ok, so it's been forever since I posted, and people were actually paying attention. Things have turned around enough in life that I'm not in so much of a funk, although it took a huge amount of work and bootstrapping. We bought a house, and are moving slowly, I'm going back to Mentoring childbirth classes after the first of the year, and Mirriam has a diagnosis. Of sorts. Technically it's unofficial, because we have to wait until the research paper is published, but it's been confirmed that she has a very rare version of Smith-Magenis Syndrome. She was tested for the classic SMS deletion over 2 years agon, and it came out negative, and for the microdeletion. But two different teams have found a mutation. Yay for cutting end genetic research, hmm?

So, hopefully, I'll remember to post more of my deep thoughts here.

2 comments:

rgmb said...

Children with challenges can be both emotionally and physically exhausting for loving parents. I'm not trying to ascribe your feelings as challenged since I don't know you so I hope you don't feel put-off by that statement. I do know that parenting is difficult under the best conditions though. But based on your description of being in a funk and reading a few of your posts, it seems that this situation is in part responsible. I wish you luck and hope that your daughter is doing well and that this diagnosis has given you and her some measure of help

Eleri Hamilton said...

not put off at all :) It took me a while to adjust to the fact that feeling overwhelmed was *normal* for parents of special needs kids. Having a month off, where she was in an inpatient facility, helped hubby and I catch up on taking care of ourselves, so that we could be there for her.