Better To Burn Out Than Fade Away

I’ve become a keen observer of my child’s behavior.  I’ll allow the “day late, dollar short” here, but I think I’ve said it before that a mother’s blinders are bliss compared with the gut punch of the MD diagnosis.  Moving along.  My kid has been picked up for physical therapy and occupational therapy now.   My life is flurry of therapy appointments and an inordinate amount of time in the hospital’s parking garage.  I’ve missed more work this year than I have in ever, excepting my two maternity leaves.  These are lean times for public educators, and I do fear that eventually my absences will come back to haunt me. Screw it.  (easy to say, but. . .)  Greater than gravity is my love for this kid, so I go.

Observing your child objectively is impossible, but observing (not directing) as the parent in therapy isn’t.  Watching him struggle to execute really, really easy motor tasks, well, easy for me and most of the population anyway, is a heavy sigh I wish on no parent.  Making him exercise feels like torture for him and for us.  It’s not the “hey, this is fun” kind of exercise either.  No, no.  How do you get your 11-year-old to truly, fully grasp that the exercises he’s starting now might allow him to beat the wheelchair for a month or two when he’s an adult?  How do you make him understand that we know it’s HARD, so unbelievably hard, but necessary to strengthen his core and calves because in about 20 years they’re all he’ll have left?  Those are for reals questions, by the way.  I don’t have the answers, and I’m not sure I want to consult Siri or Google.  Effing internet.  Anyone?  Anyone?  Bueller??

The OT (occupational therapist) asked him today what was it that he wanted to do better, what is hard that you wish you could do better?  He replied that he wanted to run faster like his friends, and not always be the first one out in foursquare or always be “it” in tag.  I’ve observed him not engage in play, but walk around his friends’ games and activities on the playground.  I’ve observed him sit himself out before getting or making an out, and I’ve observed him abandon an activity instead of getting chosen last.  I believe he feels there’s some element of control when he decides not to do whatever it is he declines, even when it turns out he really, REALLY, REALLY wants to do it.  I used to think his playground non-participation was because he was inward-looking or distracted, and that might ring partially true, but I think he’s known much, much longer than we have.  Better to burn out than fade away.


4 thoughts on “Better To Burn Out Than Fade Away

  1. Thank you for sharing so much of this journey. The big picture things and the every day, emotional roller coaster this all must be. I hope you find it cathartic. Love ya and am sending you as much strength as I can. Have a happy Mother’s Day, super mom!!

    Liked by 1 person

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