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:
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
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.
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