As We Adjusted

Dora is cross and needing attention. Rafael is in Paris for the night, all grandchildren go with my parents on turning 7. Mum commented on his receptiveness to French culture. Dora muttered; "he's probably saying pret a manger over and over."
Ruben is soul searching now. ' I thought God was my friend...'  Why would I get this. He's angry with God. I read him my sermon for Kol Nidrei. I had spoken about him and my commitment to random suffering and strengthening  oneself to cope.    I wanted an intimacy with the community.   I think he liked it. Rachel Burns visited with home made biscuits and he spoke to her about goodness and deserving pain;
  'I know the Holocaust is bigger than Rubens lymphoma. But ....'   We were touched.  He's working through it. He called the 'Lymphoma Help Line' asking for a buddy. Our specialist nurse found us one. Henry was thirteen and one month when he was diagnosed. Ruben can't wait to to meet. He continues to have less energy for friends and wants adult company.This feels bigger than I've wanted to accept.
My beloved congregant died in the hospice hours before Yom Kippur. Her funeral was very hard for me. As was Rabbi Sheila Shulman's just last week. Beautiful but hard.

I feel at times numb.  But there is much to do. Huge new medication regime. Sometimes as many as 20 pills a day. I'm rarely away from him and at night it's like a new baby, I wait for him to wake and he usually does. I have suspended my own disbelief for the daily ordeals of hospital and sickness, and endless episodes of Modern Family, and Dora and Rafael's sense of neglect. They've taken to sleeping together, 'while Ruben is not so around'. Rafael wakes up distressed regularly, Dora is cross. I try and not talk about him all the time in front of them, but people ask in the playground, at Shul, everywhere and it's so kind. That's another thing the language. I marvel that I'm using words like chemo and flush in my sentences. I used to find abbreviations an affectation, until now, when I have to mention it so often, and can't believe it's in my lexicon like this.
First year without a sukkah for the kids. I should have but couldn't. But we were happy for Simchat Torah. But it was also the day Ruben's hair started to fall out. The preparation doesn't prepare you for this most unnatural occurrence.
I eat the food of friends with continuing gratitude. Fish pie, frittata,cake and soup. Dora asked tonight if I'll ever cook again. But Ruben now is scouring BBC Food, suddenly enthusiastic to cook as the nausea loosens it's grip. So chances are I will. FPS is being so kind and giving me space fom operational management of the synagogue.  I feel a bit quiet and empty at times, but our ongoing connection with and services for the community keep us going in an important way.