February 14, 2022

February 14th. Valentine’s Day. Three and a half weeks left. This might have been the last day I didn’t have to force myself to feel even the tiniest bit of hope.

I don’t know why, but in the morning, I had the idea of “why not bring him a Rubik’s cube?”. He loves stuff like that, and we’d had a jigsaw puzzle, which he also loves, but he hadn’t asked about his unfinished puzzle in weeks. He seemed bored and listless a lot, but… was that actually being bored and listless? Was it the strokes? I guess there was a way to find out… bring him something fun to do. Worst thing would be that he’d ignore it.

These are days

These are days you’ll remember
Never before and never since
I promise
Will the whole world be warm as this
And as you feel it
You’ll know it’s true
That you are blessed and lucky
It’s true that you
Are touched by something
That will grow in you, in you

I brought Tim a Rubik’s Cube this morning, and y’all, I wish I’d had my phone out when he saw what I pulled out of my bag because his face LIT UP! He’s spent so much time playing with it in the last 45 minutes that he’s knocked himself out cold, exhausting his poor unused hand muscles. I know almost how he feels – when I broke my hand a few years ago breaking up the dog fight, it was months before I could knit more than half a row without my hands being too tired for more.

So, other than the Rubik’s cube excitement…. Nurse Taylor (day four!) says that the night nurse said he was pretty restless, and didn’t sleep much last night. PT/OT will be here later today, and since his heart rate stayed level yesterday they’re hoping for some time in the chair. That’s all Taylor knew, but I imagine they’ll want him walking or something, if they can get him up.

Also, Speech will be in later today! They’re going to start talking to him about the next trach size down, the one that will have a speech thing in it, telling him about exercises to do to get ready for that.

These are days you’ll remember
When May is rushing over you with desire
To be part of the miracles you see in every hour
You’ll know it’s true that you are blessed and lucky
It’s true that you
Are touched by something
That will grow and bloom in you

BAHAHAHAHAHAH! So, Nurse Taylor has her little baby duck today, and she was pointing at Tim’s feeding tube and explaining to the baby nurse how to clean it, and when Taylor stuck her hand close to it, Tim pretended to try to bite her finger! She whipped her mask down and was like, “SIR!” (but was clearly laughing) and Tim just grinned and grinned – Taylor and I started laughing, and that got Tim laugh/shaking, and another nurse ran in becasue she’d seen on the computer outside that Tim’s rates were all changing. She thought he was having a problem, but it was just that he was laughing! Taylor was like, “I see you, Tim, I see how you’re going to be today. You get ONE TOY and you get all feisty!” hahahaha. That was wonderful on so very many levels!

When I went back, months later, to bring them a gift basket and to make sure they knew that Tim had died, Nurse Taylor was the one I got to talk to. I didn’t really remember having her as often as I’m seeing, in going over all these. I thought we’d had her once or twice and she just made an impression because she was so cheeky and fun. But apparently we had her a lot! Why did I go back, you might be wondering. One thing I heard from almost every nurse, while up there, is that… they never hear the end of the story. Patients check out of their ward and… that’s it. They rarely hear anything else. Did the patient live? Did the patient die? They almost never know. So I went back to tell them. To let them know the end of the story. Taylor cried with me a bit when I came, and laughed, and thanked me for coming. But… that’s later. This is still now. Or as I’m writing this, that’s the past.

Anyway, where was I….? I think that’s it. PT/OT, and later, Speech… that’s about the only thing they have planned for him today that Taylor knew about.

In other news….? So, somewhere, some place in the house, somewhere, Tim has about a dozen Rubik’s cubes. I could only find one of them. At the risk of sounding mercenary, I’ve put some new cubes for Tim up on my Amazon wish list. If any of his friends or family who’ve been wanting to help or do something, felt like tossing a new Rubik’s cube Tim’s way, that would be lovely, and very much appreciated. The nurses on the floor are already thrilled with the idea of these for him, as he absolutely loves them (I could find a bunch of those metal ring/nail puzzles, but he’d already solved them, and I have no idea how to fuck them up again so he can solve them). They’re great for physical dexterity, that will help him gain back both muscle AND coordination, he loves them so they make him happy and elevate his mood, and they’re good for getting the neurons firing. I have a handful of jigsaw puzzles waiting in the wings for when he can sit up for longer periods of time, but right now he’s not elevated enough, long enough, for jigsaw puzzles. These, though? That he can just set on the bed next to him while he naps, and pick it up again? Fucking perfect!

Anything else….? Have some pictures! And thank you, thank you all so much. xoxo

I wish, writing now, that I had more positive things to say about this day. This and the next couple of days were… I started to think maybe he was going to get out of this. I was afraid he wouldn’t, afraid it would be a long fucking haul, but also …. it might work. He’s clearly willing to work himself, with different therapies, to get better. If he only gets one percent better every day? That’s better than not better at all.

I think it was about this time I spoke with someone (I don’t even remember who) who said something along the lines of wishing there was some kind of miracle, some kind of divine intervention. And let me tell you…. I don’t really get into bed with organized religion. And even if I were the praying type, I’d more likely pray for … well, like Gingerbread Husband asked to pray with me on the very first day of this. He prayed that God wouldn’t let me go. That during all of this, he hoped God would help me find the light. He didn’t pray for a miracle to make Tim better. He didn’t ask that my prayers would be answered. He asked that I be able to not lose strength and peace during all of this. And do you know what I had? I had my friends. My friends were my miracles. My friends helped me to be strong. My friends helped me to bear everything. And another thing; if God made all of us, then God made the inquisitive doctors who tried to get to the bottom of all the mysteries. God made the nurses who were caring and patient and still came to work every day even after being shit on by people during Covid. If there’s a God, she did help. She made the people who were all there for me. People are miracles.

These are days

These are the days you might fill with laughter until you break
These days you might feel a shaft of light
Make its way across your face
And when you do you’ll know how it was meant to be
See the signs and know their meaning
It’s true
You’ll know how it was meant to be
Hear the signs and know they’re speaking to you, to you

Lyrics by Merchant / Buck
There Are Days