May 2019

You not see me.

Today’s Nick story is just plain funny.  We were watching a recorded singing competition TV reality show and although the show wasn’t over, it was time to put Nick in bed.  With a typical kid response, he said, “No I go to bed.”  And also typically as parents we said, “At the end of this

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Finding my tribe.

18 months ago I walked into a hotel in Orlando wondering if it would make a difference.  It was the night before the 5th Lennox Gastaut Syndrome Foundation International Conference was starting and I had been invited to meet some of the other attendees ahead of the event. I usually shy away from meeting perfect

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