Saturday, October 29, 2011

The Journey, Oct 28, 2011

Our journey with ALS  has been long and hard. ALS has  lived up to its reputation.

I  have, by choicem  been immersed in silence for several days.
I sat, watched the lake and breathed in and out. It was my first time alone in the house in a long time. I have had a health care worker  here everyday for the last 5 months. My space has not been my own.

Yesterday I woke up and realized it was Friday and I felt a need for community..  I yearned for  shabbas dinner with friends. I needed to hear  the words of the  prayers to wash over and soothe  me. I also  craved a big bowl  of  Kathy Gordon's delicious  lentil soup. She makes a vat each fall and  brings me enough for several meals. I make it too, but it is never as good as hers. Unfortunately she lives in Buffalo, so I could only taste it in my imagination.

At  9 am  Friday morning, I phoned my angel team  and invited them to dine with me at Hospice  House. Fortunately 10 people were available to  honored  my request. Veg  Catering Service did the rest.
We gathered first  in Neil's room to light candles. As we encircled him and blessed him, I could see
 the  love/sadness reflected in everyone's face. It mirrored the feelings of my heart.

 After the candles were lit, we adjourned  to a  private dinning  room, said  kiddish  over the wine,  blessed the challah (which Lori and Steve Steinlauf made, their first attempt ever, a work of art and  delicious)!  As we sung the blessing over the challah,  we held the hand of the person on either side of us so that our circle  of blessing and love physically connected us. An  electric current of love went through me  as we created this circle of holiness.
We had  a sumptuous feast. Baba ginoush, humous, toubelh, spanakipta... etc.  Neil's favorite foods; he would have loved this gathering, this gathering to honor him and bless him on his journey home.

Thank you Angel  Team, although I realize not all of you could come at the last minute, in so many other ways  you have enriched our lives and made  our journey so much more bearable. You allowed  Neil an audience and let  him  entertain you. You listened to his stories, his jokes. He so looked forward to your visits and the  milkshake brigade delighted  and nourished him.. The gift of your presence made our house  a holy place.

A few days before it was decided that it would be in Neil's best interest to be in a state of sleep, he said to me quietly one morning, " I see  your mother floating above you.." She came to comfort you, he said..
Thank you Mom, you knew I needed you and you came. Sorry I could not could not see you, I  would have liked that. I miss you. Please take care of Neil for me until I get there.
Cheryl

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