You woke from your nap as I arrived today, from a dream of us both in the studio. It was a new studio with a beautiful floor, perhaps our House of Dreams? You were watching me make a large dragon from fractal parts of different sizes, a blue dragon from a light material. Then you were walking down the stairs and I pointed to something, you turned around and saw the dragon flying behind you. You had a feeling lightness.
I brought you jonquils today. Lisa mentioned it was Saint David’s Day, the patron of Wales, who’s symbols are daffodils and red dragons. She thought of you, considering that you are in wooden dragon in Chinese astrology. Although there were not daffodils to be found today, there you were, meeting the dragon before the jonquils arrived.
Last night was a success! The syringe delivery of your smoothie caused no stomach cramps or bloating. All this time, we thought the slow speed of food delivery was crucial to minimise stomach trouble, but high speed delivery of homemade smoothie caused no problem at all. I suspect the whey powder was the problem, perhaps other suspect ingredients too, not to mention the lack of love in the highly processed bag food. After five and a half months, this is the first day that you only ingest homemade food, via mouth and PEG. This evening when you felt exhausted halfway through dinner, I suggested we ask your nurse to feed the rest of your soup via syringe through the tube, now that we know this is possible. It worked so well and brought you such relief. How can it have taken so long to figure this out?
You asked me to pick your nose and clean your ears today, which I did very thoroughly with cotton buds and paper towel. You had a phenomenal collection of stored snot and wax buildup. Fortunately I find this stuff far more fascinating than revolting. You even let me trim your ear hair and cut back your bushy eyebrows so they are no longer in your line vision.
These days together are infinitely more easy for you, to be tended to around the clock in good company and have relaxed support in feeding you. When I am here I am all yours, when I am home I am preparing things for you. I work in service of my wooden dragon.
Thank you to everyone who has donated to our Build a House of Dreams for Patrick gofundme, you have absolutely blown us away with an ocean of generosity. All donations, both on and offline have now been added to the gofundme page, pooling an astonishing 409 383 SEK. You are supporting us beyond our wildest dreams, while making them a reality. Thanks to all of you, we can continue building our home and centre for A R T I S T S in R E S O N A N C E this spring, now with the help of a builder. This gives us great hope.
In case you are new to this diary, Letter to my Love with your Brain on Fire can be read as a prelude.
Your comments, likes and shares are so warmly appreciated, even if it takes a while to respond… I promise we will eventually!
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