The (Rubbish) Week That Was

Last week was rough. I think I had a bit of a post-vaccination slump, but also, Littlest is so, so bored that things have become untenable. She doesn’t understand why she can’t go to school and she’s fed up with being at home with us all the time. Twice a week a carer takes her out for a couple of hours for a walk round in the woods—rain or shine, she’s a machine. But it’s not enough.

Every single moment of every single day, Littlest needs someone there with her. Unless she’s plugged into her iPad—but at the moment, she doesn’t want her ipad, she wants either my phone or Mr AL’s. If I need to use the phone she tugs at my arm and screams incessantly whilst I’m making the call, unless Mr AL is there to either occupy her or give her his.

Currently she is sat beside me in her wheelchair feeding Morris Skips. He’s delighted. She’s delighted. But when she runs out I’m either going to have to pacify her with my phone, or stop work and go and do an activity with her. But nothing holds her interest…a story, colouring, stickers, dolls house, brushing the guinea pigs, video calling with grandma, cutting things up, glitter, feeding the hens, duplo, music. You get about twenty minutes concentration for each activity, max. As much as we can we are trying to involve her in the household processes. ‘Helping’ pass laundry to fold, unloading the dishwasher—she can manage to hand someone the cutlery and some of the smaller plates, hoovering is hilarious, so is dusting. She sometimes plays Dora the Explorer or World Zoo on the Wii, but she does find that tiring.

Once she gets bored, she starts throwing things on the floor. Her doll’s furniture, DVDs, TV and Wii remotes, books, toys from the toy shelves. Cutlery. Crockery. We have tried sending her to her room for some quiet time, which at least gives us a break, but it doesn’t change her behaviour. We can’t leave her alone with a book any longer because she has begun to rip pages out.

There is nothing to bribe her with like I can with Talking Child—there’s nothing she overtly wants. And threatening to remove internet privileges etc. is pointless. She has no concept of punishment and reward.

This is on top of all the usual tube feeding, personal care, making-sure-she’s-not-choking-on-her-own-secretions, physiotherapy, phone-calls with professionals, ‘ordinary’ stuff.

My seizures are through the roof. Mr AL is randomly falling asleep mid afternoon like I remember doing when I was pregnant (he is not pregnant).

I have spent the last week finding out about vaccinations for Extremely Clinically Vulnerable children. There is apparently an expectation that there are between 1,500 and 2,000 children between the ages of twelve and fifteen who are fragile enough to need the Pfizer vaccine although the clinical trial for that age group is not yet completed. I have found a document with criteria from the NHS that strongly suggests Littlest falls into that category. A handful of Mr AL’s friends on the SWAN (Syndromes Without A Name) facebook group have kids under fifteen who have had it, their paediatricians working in tandem with Great Ormond Street.

I have phonecalls in to her two leading Paediatricians.

Regardless though…we have arranged with school that she is going back in on a Tuesday and a Thursday from the end of this week. Mr AL is going to take her rather than the school bus. Her class has six children and they don’t interact with the rest of the school. The teachers have all had their first vaccine dose, as have we and as have her carers.

We have kicked it around with our palliative care nurse, with school, with the children’s hospice, with other parents and we have made the decision because she’s clearly jumping out of her skin…her mental health is rubbish and Mr AL and I are going to snap before long—it’s happened before, before we got help with her care, a few years ago, and I recognise the signs.

I hate this shitty, shitty situation. I know everyone else does too, we are all in the same situation on one level or another. But I guess I needed to vent…and if you feel like this too, you’re not alone.

We’re here with you.

Personal post: it’s a lot, folks

I’m genuinely struggling to know what to post about this week. I’ve got all sorts of things going on–Littlest had another COVID scare in the week and had to go in to the Children’s Ward to be tested and my Mama had her radiotherapy orientation yesterday and has her fortnight’s treatments scheduled to start in a week’s time and both kids have needed bloods taken and we’ve all had flu-jabs.

open book on table
Photo by Polina Zimmerman on

Then…Morris got out whilst Mr AL was taking Littlest in to the ward on Wednesday and when I went to collect him up, he wouldn’t be collected (because badger setts are more interesting than people, doh) and I ended up having a mahoosive seizure in the middle of a ploughed field a quarter mile away from home, in the dark, in the rain. Without my locator-watch gadget, which meant that poor Talking Child, the passing Lovely Jogger, my sister and my friend–both of whom I managed to call in a garbled fashion before I went full-on kipper–spent quite a while searching for me. I’d just got out of the bath and was in my nightie and house-trousers and unsuitable shoes, and I’d semi-fallen in to the ditch whilst trying to jump from one field to another.

Morris Dachshund of Lester Towers, Badger-Hunter Extraordinaire. Butter wouldn’t melt, obvs.

I felt pretty grim on Thursday–I get a sort of hang-over after the siezures–and that was made even worse by feeling so useless with everything else that is going on. Mr AL will be driving my Mama the ninety minutes up and down to the hospital, with my sister. It’s more comfortable and less tiring for Ma to travel in her powered wheelchair in our vehicle rather than transfer in and out of my sister’s and take a folding chair. I can’t participate in any of that, because I can’t drive any longer and no-one wants me to ride along only to have a fit in the middle of Mama’s appointment.

In addition, it’s not really safe for Littlest and I to be on our own without supervision. She’s a choking risk and I’m a fitting risk and if those two things happen simultaneously, well, that’s not ideal for her. This has been the case for quite a while and we work round it, making sure we always have oversight.

But after Wednesday, my nearest and dearest are having a conniption fit about me being alone at all.

Littlest, when she was in hospital for something-or-other earlier in the year. Honestly, we lose track.

I’m really, really pissed off about it. I relish my time alone and need it to recharge. Being stuck with a carer in the house is horrible, however much I like them personally. It’s not that I want to hoover naked or turn cartwheels in my underwear; but that possibility doesn’t exist at all if you have someone else in the house. And if they are pottering around unloading the dishwasher and changing the beds…both of which I am massively grateful that they help with…I feel guilt-wracked sitting on the sofa watching them and not helping.

In addition to all that, we have lost our usual support from the Children’s Hospice. Because of bloody COVID, they have had to change the way they look after their families. Usually we all go for three or four nights every three or four months, Littlest gets twenty-four hour care and we get looked after too. There are people to talk to and discuss different care approaches, there are comfy sofas and a nice garden and lovely food and we have a real rest. Now though, they are only open for end of life care for children (both COVID and other ‘normal’ conditions) and emergency stays for children when families are on their knees. Littlest went in the summer when we were doing really badly and she didn’t enjoy it as much as she usually does–it was all a bit different, the main parts of the house were shut off, she couldn’t interact with everyone like she usually does and of course all the carers were in scary PPE. They have us on the emergency list again, but it’s not the regular respite that we have been relying on.

Plus I’m bricking it because although we’re in a relatively low-incidence area COVID-wise, it’s on the rise everywhere and if we get locked down again we will have to cut back on some of the carers we have coming in to the house, just to keep everyone safe. That will mean we get progressively more exhausted–Littlest needs help in the nights. And there’s the risk to Littlest on top of her general respiratory fragility. And the risk to my Mama, with the lung cancer.

My mental health is for shite, basically, and not really because I’m becoming extra-depressed, but because there’s so much going on.

I’m trying to crack on with the rewrite of The Hunted and the Hind, but I’ve stalled a bit. All I want is to be in an alternate fantasy world, to be honest. Somewhere I have control over, unlike here. But I’m not sure that makes for good writing.

That’s it. That’s the blog post. Tomorrow is another day, we’ll laugh about this later etc..

It’s just a bit tiring, is all.