Tuesday, February 26, 2013

Untethered Blogging

So here we go: Being frank in this semi-anonymous form.  What our life looks like this week and where we are:

Yesterday, I took my youngest son to the neurologist.  I was slightly surprised to see a resident instead the doctor come in and take the recent history.  He did assure me that the neurologist would come in later, so I didn't think much of it.  Then, when the doctor did come in, he entered with a team of residents, including the first one.  The looks on their faces - excitement, anticipation, oh-boy-we-get-to-see-this-in-residency - I have seen this before.  I didn't pay them too much attention.  I know how it goes.  While I was almost in panic mode when I first saw those looks with my eleven week old first child, I'm old hat now.  I know that's part of why I'm in this position.  My children are a gift to the world, including the medical world.  It's an opportunity to learn and grow, and all they have to do is to walk around.  Well, and get up and down off the floor demonstrating the Gower Sign.  They got to see two brothers, one six and one two, presenting different stages of the same muscle disorder.  They got to see a calm, educated, assured mother.  Then, they got to hear the same mother discussing the younger child's unrelated trisomy which also presents with epilepsy.  They saw an appointment with initiating the formal diagnosis, and appropriate questions from the parent.  Ordering the EEG, and sending me off to the neuromuscular specialist - two fairly normal occurrences for future neurologist, but with a singularity!  This is a once-in-a-career opportunity for the young doctors and they get it in residency.  The neurologist himself knows how incredibly lucky he is to treat a rare - usually unsurvivable - trisomy paired with another rare, genetic muscle disorder.  So, I know the score.  Calm, cool, collected and professional are the way to play it.  I have a professional role here, too: professional mom, who is a burgeoning professional writer.  My job is to observe, remember, learn - and pass it on to you.

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