July 22, 2015

A look back at January 1st, 2012

Miss her every day. The picture of my mother below was taken one and a half years before she passed. She had already lost the ability to speak half a year previously and could no longer walk. But she could still laugh and nothing was quite so important to her as bringing out joy and laughter. She laughed a great deal, despite a really tough early life. Despite her illness. Towards the end she was reduced into kindred, mirror images of my son; paralyzed and speechless, fed through a gastrostomy tube, pain on the outside. While inside the same strength and kindness continued unabated.

July 15, 2015

For the summer issue of Inner Tapestry, Carolyn Murray wrote an article about Segev and myself. You can read the issue online here: Caregiver Diaries




Inner Tapestry

July 05, 2015



  I kiss his hand.
It is damp as he flickers in and out
of consciousness.
Do you understand?
I'm here, watching him,
watching over him.
He seems everywhere, in everything
and yet I must keep him
in this tiny little life where anything
is everything.

Both by lack of choice and by choice, the hours that I am with Segev both as father and caregiver, present unique challenges. The accumulative affect both strengthens and weakens me; being able to see a positive change in his condition, though momentary, is a collusion of Giri-Ninjo that both elates, giving hope but also deepens darker feelings.
Possibly the main challenge I face each day is that I ask myself, how can I love him more? Some days I even wrestle with the issue, while other days I prefer to retreat to my shell.  What? What is that you say? How is it possible to love him more? Because love is bottomless, endless.