Friday, September 13, 2013


First, this week has been remarkably better than last week in regards to Matthew's behavior.  We modified our afternoon routine, which now allows for him to take an abbreviated nap, and it has made all the difference.  I recently watched this video about talking to kids after school and it reminded me of Matthew last week.  He just didn't have the brainpower to use logic or have coping mechanisms or do anything but use his primal brain. 

Also this week, I was struck by the starkness of the dividing line between Houston and Austin.  As Matthew walked into school earlier this week, one of his teachers asked "How are you this morning?".  First, he shook his head but when prompted, voiced an approximation of the word "good".  I marveled at how awesome that was-- Matthew said "good".  We worked, and worked, and worked-- hours upon hours upon hours of speech therapy-- when he never said a word.  Those therapists never got to see the fruits of their labor.  And his teachers now, though excited for him and his efforts, have no idea that they just witnessed a miracle.  A miracle I feared never was going to happen. 

This starkness is happening a lot right now.  As we meet more and more people, those that meet Matthew now see him very differently than those who have followed his journey from the beginning.  Right now, you see a walking, talking, vibrant little boy who may look or act just a little bit different.  What you don't see, what can't be conveyed even through words, is Matthew's journey to this point.  We didn't know if he'd smile, or laugh, or sit up on his own, or crawl, or eat on his own, or walk, or talk, or even make it to today.  He almost didn't-- we almost lost him from intestinal surgery, heart failure, heart surgery, skull surgery, and a bowel obstruction. I have a hard time remembering that some moments and some days, how can someone who sees Matthew today see just how amazing he is, what a fighter he is, that the 'normal' they see is really a miracle?   

Hmmm--wondering if you've read this before?  This isn't the first time I've thought these thoughts, it is just the most recent. Here's a similar post from a year and 3 months ago. 

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