Category Archives: moving, breathing, feeling

Jun2

Jacob

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jacobPhoto:  Derrill Bazzy

He’s fourteen now.  My beautiful godson.  I have not seen him for nearly six months.  Too long, too long.  What is an autistic fourteen year old like?  Like an adolescent?  Like an autistic person?  I don’t honestly know.  I can only tell you about this fourteen year old, this precious Jacob.

Every day is different.  Every day has its own map.  In the maddening sameness of the “isms,” if you look, if you listen, if you are willing to be present, are the differences.  If you can see beyond the swing spinning, the ball juggling, the repeating topographic form of the surface behaviors, there are the differences.

Jacob is not the “isms.”  He is not the behaviors.  He is not the absence of language. He is, in part, to be found in the differences:  the little shadings of movement, engagement, sound and play that form the underscore of his day, and ours.  But really, he is not defined by those either.

Maybe this is why I love him and my times with him.  His cannot be captured by any definition or category, not even autism.  He is pure being, and to be with him, really with him, that is what we have to become as well.

Is it exhausting?  You bet. Humbling? Absolutely.  It is like sitting in meditation ALL DAY.  Rigorous, demanding, sometimes painful.  Because WE DON’T UNDERSTAND, not really, but we have to keep practicing, keep our bottoms on the cushion, so to speak.  Breathe in, breathe out.  This is his gift to us, and yes, ours to him.

 

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May27

ready, set, go . . .(in just a minute)

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Screen Shot 2015-05-14 at 8.08.05 PMfrom “The Traveler”

We are on the cusp of launching our bold Indiegogo campaign.  Just putting on the finishing touches, polishing up our perks and getting ready to invite you to become a part of Little Fictions, Ragged Memoirs, my most ambitious dance theater project yet.  Watch for it!  (We will let you know, of course)

May20

Jules

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Last night we lost our beautiful Jules.  He was diagnosed one week ago with an osteosarcoma in his front left wrist.  We thought we had more time.  But last night the leg shattered and the screams echoed through the whole valley.

We were blessed that he could die at home, surrounded by his family and even his other mother, Bimala  was there via Facetime from Korea.  The love of his life, Guinnie, was by his side the whole time.

Jules had a sweetness and innocence that you would not guess from his 90 pound body, his fierce racing tears around the pen and his big, deep bark.  He was a major racer, retiring at 41/2, which is a long career in the greyhound world.  But he was a tender boy, a honey boy, and my most favorite thing was to lie with his back pressed into my front. That was my way of earthing.  I was not the only one.

Last night, his death brought in a roiling, muscling storm – wild slicing lightening, blasting thunder and winds that tore the rest of the lilacs from their stems.  This morning, the wind is there and so is a deep burgundy iris, the first of the season.  Jules.

This morning, before I was awake, a hummingbird fluttered outside Pam’s study window, darting here and there and then staring at her intently through the glass.  Jules.

Jules – always beloved, always present, always in our hearts.  Thank you beautiful boy.