There Are No Words – September 3rd
Daughter Days
I spent much of the day with Livé in 2015, and all of the day with her in 2016.
2016.09.03 – Microscope, Ice Cream, Buskerfest
Estimated Energy Budget: 75¢
The plan:
- Quiet morning at home.
- Walk dogs while playing Pokémon GO, with Livé’s new character set up.
- Go for ice cream with Diva.
- Ride / scooter to Buskerfest for the afternoon.
- Home for dinner.
- Movie or Supergirl on TV.
This is not how it played out.
After the microscopy and Pokémon GO + dog walking, Livé couldn’t stop yawning. We ended up taking a rest. She strongly resisted any intimation of napping so it took quite a while for her to pass out. After that I couldn’t wake her up for nearly two hours.
Getting Livé to nap tends to not be fun for either of us. She’s very happy most of the time when she’s tired-drunk, and usually very well behaved. She can be very sullen and cranky though, especially if things are not done exactly as she wants them to be done. And just like anyone else in that state of dirty-brain-juice, she loses her situational awareness and impulse control. In the past this has meant behaviours like yanking her hand out of mine and running off into a crowd of people. I didn’t want to bring her to a huge festival with thousands of people and ample opportunity to get lost or hurt when she couldn’t stop yawning and was stumbling with mental tiredness.
The two hour nap eventually happened when I stood silently in her doorway for ten minutes or so. She was lying quietly with her eyes closed, but peeking at the door every minute or two to check if she could sneak in some keep-myself-awake activities. (She used to hold her arm above her head so she would smack herself in the face to stay awake. Now she tends to wriggle around a lot, and to twist herself into uncomfortable positions.)
The timing post-nap didn’t allow for that ride up the waterfront trail, but that was fine. We walked to Ed’s for some ice cream first, playing Pokémon GO, of course.
After that the TTC took us to Woodbine Park with some good hunting on the way. The first stop was the crazy kid’s park, where she was a fearless monkey. I even had the energy to get the thing spinning a few times, and to hang on and swing.
We wandered the buskers, including a Silver Lady, a Brass Band, a Dancing Stilt Clown, and a Forest Nymph With Crystal Balls. Then on to the rides. She seemed to delight equally in a very slow kiddie train and a tilt-a-whirl zooming speed thing. The last ride was the Ferris Wheel, as Livé had declared it would be so.
By the time we got home we were tired, hungry, and happy. Livé had been uninterested in any of the food options at the fairground – not even French fries or roasted corn – so we had PBJ at home, and then to bed.
2015.09.03
I went of my painkillers as a temporary measure to get a new baseline for how much actual pain I was feeling.
10:00AM
Pain is a 3 – bearable, if a little distracting. Discomfort is a 5 though. The itching and that weird numb anti-pain-ish itch across my dissection are much harder to ignore than mere pain.
Lunchtime
Livé spent part of the day with me on this Friday. There were various experiments, including how to eat grapes with a straw.
12:45PM
The pain didn’t get too bad, but the itching was maddening. The itching is still maddening, come to think of it.
About once every two weeks I try to get a sense of what the pain is like without meds. I’m not in excruciating agony or anything, but I know I tend to creep upward in self dosing if I’m not careful. That’s why I take meticulous notes about when I take (e.g.) Tylenol. I’m pretty much done with baselining today; I’ve settled in at 2 for pain and 5 for discomfort. I’ll go back to my scheduled doses for a while and test again next week.
Lori Silverman advised that:
When I used to do patient education years ago, we discouraged patients from invoking pain by discontinuing meds. It’s often harder to go back to managing it once it appears than keeping it at bay once it’s regulated. However, I know you dance to the beat of your own drummer :))
4:00PM – Living La Livé Local
Livé, my daughter, will turn 5 in three weeks. She’s 117cm (46") tall, about to start senior kindergarten french immersion, and profoundly melodramatic. (She’s much more, of course, but those are salient to this visit.)
We have missed each other over the last month. The normal sleepovers have stopped for now, and I haven’t been over on Monday evenings for dad-daughter time. So today, she built a modelling-clay volcano (the Mark II), watched They Might Be Giants videos (much dancing), and had tickle fights. She also watched me clean my LaryTube and stoma. She claimed to be frightened, but based on her actions she just thought it was weird.
We had a few discipline times too of course, because it’s daddy, right? She was very upset when lunchtime ended before she was done eating (a regular occurence). We talked about school and what happens when the bell rings – which she understood – but also when it’s ok to cry and when it isn’t. She has taken to tears to manipulate people, and if we can help her avoid earning the title Crybaby her SK year will be much more pleasant. She got the idea, but it will take time for it to sink in. Toward the end of the visit though, we had a VERY serious talk about pitching fits and throwing tantrums. She started yelling at Glynda about something while I was upstairs, and I descended like a wrathful God. No child in my care gets to treat anybody like that. Not ever. Nope nope nope.
Then we had a snuggle, played more, and carried on having a wonderful visit. Just before Livé was heading out to the Treehouse with Glynda, my CCAC nurse (Heather) dropped in for a hello. It was nice for Livé to meet her now; Heather’s going to be a part of our family for a long time to come.
Last but not least, while Livé was lunching, I was trying to record a video thank you to my friends at OLG. They sent me a wonderful get well card and a beautiful arrangement of plants in a windowbox. Livé saw me recording, and rushed over to photobomb me three times. I finally got her to just watch me record, and sent off the note.
Enjoy being bombed. :)
I don’t have a lot to add to that.
