One-Eyed Monarch

Anniversaries, news and events this week have reminded me how much pain, devastation and heartache there has been, and continues to be, in the lives of so many of my friends and family. I therefore want to start this post with a big hug and best wishes to those suffering in any way as I don’t presume to be the only one, even though a public blog about my trials might make it seem that way.

Members of the support team are starting to drop like flies around me due to a chesty cough and cold doing the rounds. For some reason, it doesn’t seem to go very well with tiredness and emotional angst. Who knew? So far, I’ve managed to stave off the lergy but, for obvious reasons, I’m not expecting to be crowned in this land of the blind.

Crash and Bairns

Thursday brought me an early start, an adrenaline surge in readiness for rocket surgery and then a comedown. It’s probably no great surprise that Friday was mostly sponsored by exhaustion. Today has been much the same and that was after a good sleep last night. I have still managed some super special interludes with the bairns:

  1. Leo called me “Mama” for the first time yesterday (he was basically complaining that I wasn’t feeding him quickly enough, but I’ll take what I can get!).
  2. I had my tea last night with Jennifer sitting on my knee eating her tea while I was feeding Leo his yogurt. In other words, for a brief time, I felt like a normal mother: I didn’t have time to eat my tea while it was still warm. I couldn’t have been happier to eat cold shepherd’s pie.
  3. I sat on the floor and played with both kids for the first time in over four weeks. I’m not yet ready for pony rides but I can do limited ball games and play with cars and garages on the carpet. It’s the most interaction and fun I’ve had with Leo since August.

On a day-to-day basis, being physically unable to play with the kids as much as I’d like has definitely been the hardest thing about living with the Squatter so far. When I was in hospital, I didn’t see much of them and I missed them a lot, but it didn’t feel frustrating so much as sad. Ironically, I feel a greater sense of frustration now that I’m with the kids more because, mobility wise, I think I’d be able to play a lot more if I didn’t feel so flipping tired and need to rest so much! Still, I’ll take the frustration over not seeing them, and am expecting to regain some energy as I recover from my non-craniotomy.

It’s also frustrating and upsetting to have gone from being (as at 8.30am on 1 September) Leo’s primary carer, who knew his routines and needs more than anyone, to someone who is often little more than a bystander when seeing him. I think I’m grieving for the starring role in his life that I’ve lost so suddenly, particularly as I’m not sure if and when I’ll be able to look after him on my own again.

On the other hand, I’m grateful that both kids have so many people in their lives who love and care for them. It means that I don’t have to worry about them in a practical sense, which is a massive relief. The Immigrant hasn’t stopped either Jennifer or Leo coming on leaps and bounds; they have each coped so well with the massive changes in their routines; and, Leo’s settled in brilliantly at nursery.

Jennifer obviously doesn’t understand exactly what’s going on with me (although, to be fair, who has managed to get their heads around it?) but she seems to be coping magnificently. I understand that, at school a few weeks ago, her teacher asked if everyone was happy and put her thumbs up. Jennifer was the only child who put her thumbs down and, when asked, explained that she wasn’t happy because her Mammy was in hospital.

I’m pleased that Jennifer was not afraid to be different from everyone else by showing thumbs down and was able to articulate her feelings (and the reason for them) without getting upset or acting out. Given the chance, she still chooses Grandma for bedtime duties most of the time so I’m confident that Jennifer must feel pretty secure in the “new normal”. She’s an example to us all.

Sparks and Mensa

Since Friday morning, I’ve felt sparks and twitches in my right foot, particularly my toes. I think they’re similar to some twitches that preceded the first millimetre’s toe movement returning a couple of weeks ago, but it’s hard to remember exactly what they felt like to compare.

Over the last day or so, I’ve definitely had more downwards movement in my toes when I’m able to move them. The problem remains that the new communication lines that my brain is commissioning are still unreliable and have limited bandwidth. My brain therefore has some way to go before it can join the infrastructure-rebuilding equivalent of Mensa. Stronger signals are reaching my toes, and I’m walking better, so there’s definitely been a Breakthru when judged by the Royal test.

I’ve had some similar, but not identical, feelings in my right hand. My hand’s movement hasn’t felt hindered for a few weeks, it’s just not been back up to full strength. Over the last day or so, there’s been a very slight tingly feeling but no apparent change in mobility or strength, so we’ll see how that pans out.

Hodgepodge and Hedgehog

My official wound and scar photographer took an updated photo on Thursday. As it’s not remotely gory, and you can barely see a scar, it has a PG rating and I’m comfortable posting it. However, I confess that I did think twice given the worrying shades of grey of the hedgehog-like spikes coming through after my borehole biopsy. I’m told that it’s not actually as grey as it looks on the photo. Although I’m not totally convinced that this wasn’t just a fib to make me feel better, as it’ll be getting shaved again soon anyway, I figure “what the heck?”:


While I’m posting one scar update, here’s another. Over four weeks on, these are the remnants of the nasty blisters I got when Seizureville struck and my foot lost a fight with the bathroom floor:


When I recover enough energy to write it up, I’ve got a cracker of a Tumour Humour story for you, so look out for that in a future post!





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