Pastor John Van Sloten

This morning I said to my wife Fran, “Sometimes I think we forget how much it takes to parent a disabled child.”  Managing his money, vocational schooling, transportation, personal hygiene, recreation, clothing purchases, medication, etc…  it all takes time, and emotional energy.  This morning’s challenges were mostly clothing related.   It’s near impossible to find jeans that fit our uber-stout downy boy.  I’m not sure he ever feels fully comfortable in what he has to wear.  I know he especially hates having to do up that single hard-to-do button.  I remember, as a young kid, how challenging it first seemed; the hole was always too small and rigid, and the button had to be angled in in just the right way.  For Eddy it continues to be a struggle.  Combine his fine motor skill challenges with his unyielding stubbornness, and you’ve got a recipe for a 10 minute “Yes you will… no I won’t” dance.  Sitting on the couch, Edward contorted into every position possible just to avoid having to stand up and do his button up.  Finally, as I frustratingly admired Fran’s patience, he capitulated…  and he did it himself… and it was good…  the third day of the week.  Then I got to wait with him for his 1/2 hour late Handi-bus.  Most times I stew and frustratingly think, I’ve got work I’ve got to get to.  Today I just sat on the couch beside Edward, staring out the living room window with him, waiting.   Eddy leaned over and nuzzled his face into my neck and chest.  He’s so soft and warm.  And when he gives himself to you, nothing is held back.  It’s so beautiful.  And in that moment I feel again, what I’ve felt so many times over the years… a tearful sense of perfection, the knowledge that everything is just as it should be.