My sweetie

My sweetie
at school

Saturday, 6 August 2011

Changed By A Child: Companion Notes For Parents Of A Child With A Disability by Barbara Gill

I discovered this book in a Barnes and Noble on the upper West side when I was still living in New York City. It is a profound guide. It always sat on my bedside table and once when Lueza spent many weeks in the hospital I ordered about 15 of them to give to all of her doctors.

Here is page 24.

All sorrows can be borne if you put them into a story or tell a story about them.  ~Isak Dinesen

You hear the sound of your voice explaining what has happened, describing the events in painstaking chronological detail. The person listening wants you to jump to the end. In his tensed body you can hear the questions: So what happened? What's the point? But you need to lay it all out, to say, Well, first his blood pressure was high, but the doctor said not to worry. And then we noticed he was sweating a lot and drinking all the time. He seemed to eat constantly, but he was very thin. By now it was September. I made an appointment for a physical and we couldn't get in until October. October 12. I remember because it was Columbus Day. And then...
   You need to hear your story out loud so that you can make sense of what has happened and what is going on now. You are like a spider, your words the filaments of sound, lines you are spinning to attach the web of your experience to a corner of the world. In this way you connect the thin gauze of this new, incomprehensible event to the solid wall of what your life has been until now. In this way, telling your story heals you.

(written by Barbara Gill)

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