Sunday, July 23, 2006

Update from Anaheim

Mr. WG and D. are in Anaheim at the annual Sotos conference. They have professional childcare, split by ages, and the caregivers are equipped to deal with all sorts of special needs kids. Mr. WG dropped D. off at the start of the Saturday sessions -- he said it was hard to leave him there, because D. was crying, but he knew he had to do it.

In the afternoon. he took D. back and set him up for a nap. He stayed till D. was just about asleep and then snuck out. He returned at just past 4 p.m. and peeked in the room. D. was sitting on a chair with his backpack on, clearly just waiting to GET OUT. When he saw Mr. WG, he just burst into tears.

How much do I miss my kid?

Mr. WG says he's getting lots of good information at the conference and really enjoying it a lot. In the Sotos 101 session, he learned that there are several genetic presentations of Sotos -- there's a deletion of the gene, and several forms of the mutation. In one mutation, there's a single letter that's out of place. In others, there's a "stop" in the middle of the sequence -- which basically tells the "program" (Mr. WG put it all in software developer terms) to just... stop, and ignore everything afterwards. And then there are massively jumbled mutations. Mr. WG thinks that what he understood is that the stop is a milder form, and that that is what D. has, but he will have to clarify that in his private consult today.

I tell you, the enormous waves of guilt that wash over me when we discuss D's genetic mutations -- dude, it sucks. It just makes me feel so horrific. I realize this makes no sense. But how do you not feel guilty about creating a child with a genetic mutation?


Lisa said...

I understand the guilt. I often think about how if J. has bigtime problems in life that it will be because we ignored nature and persisted with ART to have her. Just as absurd and illogical but there you go.

3MGA mom said...

I have to admit, I'm super jealous that you have a community of people to meet with, a Sotos 101 class... of course, not that I wish any illness on anyone. But even at the Organic Acidemia Association, HMG seems to be rare among the rare.

I'm glad Mr. WG learned so much. Pete's a programmer, too. Small world :)

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