Such beauty amidst sadness

It's been quite a week.

Both Danielle's mom and dad have been here, and her brother is here too for a couple days. (I don't know if he knew he was getting himself into helping pull his sister's pants up/down to go potty, but so far he's been a real trooper. 😜) It's really great having the whole fam-damily together with her. I'm happy to wipe my wife's bum, but there's no way I could transfer her to/from the bed and commode by myself. My parents have continued helping with Torin (more him below). We have so much support, it's crazy. I mentioned it last post, but I want to reiterate that I really feel for the families going through something like this that don't have this kind of help coming out of the woodwork. I am able to focus most of my energy on Danielle (and some on work when she's sleeping), and I feel sooooo lucky, and so loved, for that.

Aside from immediate family, many friends and well-wishers have been offering us meals, and I generally turn them away if I can, because we're chock-a-block with good eats. A few sneaky people have brought/sent us food anyways, and I am very grateful (and it has all been very good food), but for cereal, we're doing okay on that front. 😀

Torin started daycare (which we also call playschool) on Wednesday. So far I have really loved the place. Torin has a good time, and though he gets upset at first when being dropped off (which we're told is normal at first), he calms down and gets straight to playing once he's in the classroom. All his grandparents and I have an app that is updated throughout the day with notifications about his meals, activities, diaper changes, et cetera. They even send occasional pictures and videos in the feed! And I can message directly with the teachers to let them know things or ask questions. It's super cool. Back in my day, we got dropped off at a stranger's house and our parents hoped we did okay.

The timing was good (read: amazing) because, as advertised last post, my sister gave birth to Torin's cousin, a wonderful baby girl. I can't wait to meet her, and, understandably, my parents couldn't either, so they dropped Torin off here on Tuesday to go meet their second grandbaby. With both of Danielle's parents here, wrangling a baby while we cared for Danielle was doable, but markedly more stressful. My parents picked Torin up from school on Thursday and, after a brief visit back here, took him home with them again. Today they brought him to school and back home again (with yet another brief visit here to see us). One less thing to worry about.

As for Danielle... she's hanging in there and is in (relatively) good spirits. The changes continue, though, day by day instead of week by week now. She's cognitively slower, has degraded short term memory, and has become extremely difficult to understand verbally. Today she was trying to describe to us an idea for a DIY contraption to help us get her into the car, and it was so heartbreaking to tell her that it was just too complicated a notion for us to communicate about. We've been coming up with signs and symbols to help with common concepts, often borrowing from ASL. The ASL sign for "I love you" is sorta like the rock 'n' roll "devil horns" sign (only with an extended thumb), which I personally find to be pretty rad. (As an aside, I think it'd be cool if they taught ASL as a secondary language in schools, alongside Spanish, French, et cetera. Maybe they do in some places, but it certainly wasn't an option for me growing up.)

Thursday, the lawyer I had been talking to for a few weeks came by with her notary pal and we signed our wills and power of attorney papers. Danielle is left-handed, but she can't move the left side of her body, and she's only so-so with the right. To top it off, she was really sleepy. So her signatures (which had to be repeated on every. single. page. of the will) were pitiable little scribbles. But she did her best, and I was really proud of her.

Today... Danielle has officially entered hospice care. It was a tough decision, but one that has been made easier by her accelerated decline. I knew it was inevitable, with the only question being when. The biggest loss is that she is now completely cut off from the U of M health system and all the care givers she's had for years and years. (Not because UMHS would do so, but because insurance won't cover anything except what comes through hospice, once you've entered it.) It also means that we give up access to some of the expensive (to insurance, not to us) treatments she's been receiving. We had to weigh the very small chance of those treatments giving her more time against the definite help we would receive by entering hospice. We're currently doing okay without these other folks coming in to help, but we're rapidly approaching a point where we won't be. So I'm glad that we're set up now and won't be scrambling for help when we truly need it.

Last night, Danielle indicated to me (through trial and error) that she wanted to record a video with her phone. What followed was one of the most wonderful, beautiful things I have ever witnessed in my life. She recorded a goodnight video for Torin, complete with singing "You Are My Sunshine", which has been her night-time song for him since he was an infant. Her voice was more coherent than it had been in days, and I could tell she expended a lot of effort to do so. I plan to play it every single night for Torin, when she's gone. I'm crying right now, writing about it, and I cry almost every time I think about it. I could barely keep it together while it was happening. As it happens, most of my tears this past year have been induced by thoughts of Torin growing up without his mama, who loves him so, so, so much.

Torin gives real kisses now. (And blows kisses too!)

I took our boy to the neighborhood park after his first day at playschool.

Torin's first art project at school! To me it looks like a dinosaur with two footprints on the left.