I am an association; but one day I hope to be a syndrome


The last moments of my vacation are unwinding.  Tomorrow it is back to the salt mine.

It has been a crazy week and a half.  One week of Disney and a weekend of VACTERL Association conference.

Both events were firsts.  Disney was OK, but I think the VACTERL Conference will stay with me much longer.

Going to the conference was a bit like the first day of school.  The first event was a mixer.  I am terrible at cocktail parties.  Small talk is not one of my strengths.  “Hey, how about those <insert local sports team here>.”  To make matters worse, the weather was nice.  The weather is never pleasant in Virginia.  It is my one reliable topic of bitching.

But Ethan was in his element from the moment we walked in the room.  We allowed him to bring his DS to the event and it turned out to be a good call.  A group of about 6 kids were in a cluster after about 5 minutes.  It was as if they were lifelong friends.  Actually, I would not be surprised if they became lifelong friends.  (Oddly enough, they did not compare scars.)

For me it was the first time I had the chance to speak with other parents who “got it.”  It was a bit awkward at first, but as the night and next day wore on, we started making connections.

It was too bad the conference was only two days long.  By the time I was comfortable chatting with people, it was over.  I did not get the chance to speak with some of the people I have met online.  There is just not enough time in the day.  The important thing is that I now have contact information for many new friends.  It is odd that I can basically share every detail of my life in writing, but in public I am shy.

I got one really useful piece of information that made the whole conference worthwhile.  Apparently the “cocktail” we have been using for the past two years can cause colon burning.  Now I wonder if the two months of illness Ethan has had this year were partially caused by intestinal burning and not EE.  I guess the only way to find out is give it a few weeks try.

Speaking of cocktails, we had drinks last night with a group of parents.  A little alcohol does wonders for loosening the tongue.  I got the opportunity to meet a really neat couple from the UK.  It was a challenge trying to explain the American medical system to them.  aye carumba!

Jenn and I gave blood samples to the NIH.  Our genome is apparently of interest to them.  We are trying to convince Ethan to take part in their ongoing study.  I think the price of his cooperation may be an iPAD.  But if they can find a root cause for this monster, that would be well worth the price.  Plus from what we heard from others, going through an NIH study is very thorough and they sometimes uncovers undiagnosed problems in the course of testing.  That is OK, the litany of bad news has been a tad mundane of late, time to mix up the liturgy.

Anyway, tomorrow I go back to being the uptight manager who occasionally blows his top for no apparent reason.

Welcome back real life.

BTW…the title is an inside joke between Jenn and I.  VACTERL is officially an association because there is not an established cause/effect relationship.  But if they ever do find a root cause, it will grow up to be an official syndrome…I’m just a Bill…

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