Paying Attention to the Children, Not Their Diagnoses

This week, we haven't had a doctor's appointment at all.  All week, we've only had therapies.  On Monday we toured a private school for the second and possibly the third child.  Instead of reviewing all the symptoms and signs of problems, we've had what for us appears to be a normal week.  Five therapy sessions might not be quiet for some, but for us, it's down three from the usual schedule.  Add in an absence of doctor's visits, and we're sailing through the week.  We've had lots of playing in mud puddles, walking through the grass in bare feet and examining seedling sprouting from the earth.  We've had time to smell honeysuckle on a nature walk.  It's wonderful.  For us, we've come much closer than we typically do to normal family life.

I've had time to look at my kids through a mother's eyes instead of a case manager's.  It's better for them, and more accurate I believe than where we've been.  I see boys who are growing up and getting stronger.  I see their spirits and their motivation.  I can see where they'll be going to school.  I know that the assessments that others have put on their medical condition is too limited for fairness.  I turn then to other points of view, including the primary care physician.  These kids are out on their own path.  They have their own song to sing.  As a family, we are a harmonic voice.  We won't be pigeon-holed by unfair limitations.  I started out that way as a first-time mother, and was derailed by too many opinions along the way.  I refuse to cower to the tyranny of low expectations.  We won't conform to the conventional approach.  We're going to walk our own path and be true to ourselves.  This means that we won't earn respect from those who only respect following the crowd.  We won't be esteemed by those who prioritize conformity.  But for use following the crowd and conforming was never really an option.  Following the crowd meant identifying their birth defects prenatally and terminating their pregnancies.  Never giving them a chance would have been the recommendation of physicians had I followed convention then.  I'm not going to be swayed by those opinions now.  Not when they don't even know what they are missing.