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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