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 Have you ever read, “Flowers for Algernon?” I remember reading it in middle school. “The story is told through a series of journal entries written by the story’s protagonist, Charlie Gordon, a man with an IQ of 68 who works a menial job as a janitor in a factory. He is selected to undergo . . . → Read More: Balancing hope.  Every day, he makes me laugh. A dozen times a day he says something to make me laugh and I think…I don’t want to forget this, I should blog this. Yet, I’m too busy soaking up his awesomeness…filling up my tank…just in case. Just in case… We haven’t started titrating down yet. We may . . . → Read More: Every day…  Hey everyone, if you’ve missed it, the fragile X parents have been blowing up social and traditional media talking about the sudden termination of the STX209 extension trial we are participating in. We have our date to visit our clinic, turn over our supply of medication and get a titration package…it’s so nice to . . . → Read More: Fragile X and Autism Families for STX209  It turns out the whole world hasn’t been hanging on my every word! Who knew? What follows is a short version of how we got to where we are at the moment… On May 15, 2013 Seaside Therapeutics, Inc., the sponsor of a drug trial my 9 year old son Caleb is participating in, . . . → Read More: How did we get here? (A short-ish summary.)  This last week has been the most painful of my life. We began with the ending of the STX209 trial, worsened with the news that Grampy (Eric’s grandfather, who lives downstairs) had broken two vertebra in his back during a fall…a fall he took when we were visiting Eric’s mother, who is recovering . . . → Read More: And now…now I am angry.  If you were me, if you had this most amazing child…this sweet, funny child…this handsome, clever child…what would you do to keep him whole? What would you do to save his voice, his sly sense of humor, his joyous personality? Would you sit quietly while pieces of him slipped away from you? Would you . . . → Read More: What would you do? 
 Yesterday, Caleb turned 9. He had a party at school to celebrate and he loved it. Yesterday, I was looking at pictures of my smiling happy boy with his friends. Yesterday, for the first time, I didn’t meet one of his birthdays with a feeling of dread. Yesterday, I was not scared that . . . → Read More: Today, we start again.  Caleb, Dude. Are you aware that you are 9? NINE! I’m not going to whine about how fast the time is going because you keep showing me how awesome you are becoming with every passing day. I just can’t get enough. Every time I turn around you’re doing something new and amazing. Something that . . . → Read More: Happy birthday, dude! |
Melissa, Eric & Caleb |
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