Wednesday, 1 April 2020

Day 16.

Our ‘fridge and freezer are heaving again. Such luxury this; being able to pick and choose and not have to juggle to keep variety. The baguette we had delivered was definitely past it’s best (oh, trauma) but we made garlic bread which was such a hit, we had it for lunch and tea.

In sharp contrast to many people’s schools, A’s school have emailed to say please don’t worry about the work which has been set; if your child needs to keep school and home separate then let them and concentrate on life skills. Still learning, still educational. Wise.

D has a Nove-Chat 8 on a month’s trial. He’s mostly been ignoring it, so yesterday I wrestled with the instructions to add a few of the buttons he likes from his QuickTalk. And he promptly ignored all the new buttons, but proved he has been watching us model it for him, by grabbing it and hitting Play on the main screen to access the Bubbles button on the next screen across. This we like.

And, exciting times, there has been a change of policy, and we are to have care visits again. Hurray! Starting tomorrow, a carer will arrive in full PPE gear to somehow shower A whilst fully gowned and masked. I’m thinking the best place for D and I during this shower will be a socially distanced 2m away, which handily takes us into my bedroom with a front row view. Awesome. We will be having greatly reduced visits, and will be fully reliant on just one carer, who will have us and only us as her clients too. That’s probably about as safe as we can make it, and for all our sakes it will be necessary and massively appreciated.

We should have had a Spina Bifida MOT  this afternoon. A full afternion’s Clinic, visiting, in rotation, orthopaedics, neurosurgeon, urology, bowel surgery, ultrasound, x ray and bloods. The last three we’ve had to skip, but the doctors all called home to check in on how things were going. Side note: it’s disconxerting enough having people calling me Mum in clinic, but multiple phone calls also calling me Mum definitely made me wonder if I’d mislaid some of my children somewhere and forgotten about them.

Another day done. Silly giggles from all three of us. We can find happiness and meaning in the tiny things, a welcome distraction from this silent invisible toxic cloud hanging over us all, lurking behind the doorway.


mq cb said...

Sounds like a good day all round.

Ann said...

Glad you have a carer coming to give you a little break!

Also glad that you have expanded menu choices again, with a stocked fridge. We have just two grocery stores in our area (and they are both over a mountain and about fifteen miles away). One is a superWalmart, which is offering curbside delivery. You have to sign up for a time slot, though, and for days the two days ahead they allow have been fully booked. I was finally able to get a slot by staying up until 2:30 AM. Then we had to compile our order, of which most items were out of stock. We will find out at 8 PM tonight if we get anything on the list. Unfortunately, there was NO fresh meat or chicken, but we are hoping for some eggs, milk, and a loaf of sandwich bread. And it appears that we will continue to have creative (and, often, somewhat unusual!) meals out of what's still in the fridge and pantry for a while longer....

What an interesting time this has been. How kind and generous many are being, though. Hope that continues when (if?) we get back to "normal."

Stay well, you three,



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