Category: family

#TheWeekThatWas

If you follow me on social media, you might have noticed that I’ve been quieter than usual over the last couple of weeks. I’ve been a bit poorly with lots of seizures, the kids have required back-to-school organising, Mr AL has been a bit peaked and so has my Mama.

The Week That Was

I’m scheduling this post in advance on the Saturday before you’ll read it, because as of Monday, Mr AL and I will hopefully have left the kids and the zoo with our brilliant carer and run away together for a whole five nights break. We’ve picked a pub on the coast in Devon which has a HUGE terrace overlooking the sea, my thinking being that we can sit out there for meals even if it’s raining and avoid other people.

We’ve already had one close-contact covid scare with a child on Littlest’s school bus testing positive at the beginning of last week. Littlest has had a proper PCR, which hasn’t yet come back–good news as apparently they prioritise contacting positive cases–and we are all getting negative lateral flow tests daily. No symptoms at all, so big yay! I can only hope the other families are doing the same thing. A school of clinically vulnerable kids is not the place to muck about with this sort of thing. Today is not the day and I am not the person, as they say.

Talking Child has had a rubbish time nearly every single day this past week with identity-based harassment kicking off at breaktimes. We’d really hoped it would be old news this term, but apparently not. School are on it, but it’s like whack-a-mole, the minute one gets the mandatory in-school exclusion another one pops us. TC is coping very well, but it’s really unpleasant to have to deal with on a day to day basis and it’s a big mental health drain.

All in all, here at The Towers we’re a bit flat. I’ve been sticking rigidly to my to-do list in order to try and keep some sort of routine going, because I feel as if once I start to let one or two things slide, the whole lot will go. I’m really hoping that by the time this post is published you’ll have seen some cheery pics on my various social media feeds and I’ll be able to write a brighter post telling you all about the lovely things we got up to while we were away!

Publishing Delays

wood desk laptop office
Photo by Pavel Danilyuk on Pexels.com

As those of you who follow my newsletter know, the last couple of weeks have been a real nightmare here at Lester Towers.

Littlest had an accident at school and broke her nose, which has caused all the fuss you’d expect, plus worry that she’d have to have it re-broken and re-set to ensure it’s still possible to naso-gastric tube her in the future if necessary. This has, thankfully, turned out not to be the case, but it’s taken ages for ENT to decide. I’ve had a visit to hospital for a minor procedure which was more tedious than worrying, Talking Child has been stressed about school and her sister and me. And finally Mr AL has put his back out lifting Littlest, which has caused our whole family raft to list alarmingly to one side.

So, we’re struggling, basically. Writing itself and my somewhat intermittent early morning writing sprints with my Office Colleagues, Ofelia Grand, Nell Iris and J. M. Snyder have been what’s keeping me going.

The cherry on the top of the disaster-Bakewell tart however, has been that my dear friend and editor has been hospitalised with covid. She is home and recovering now, which is an enormous relief, but as everyone knows, it’s a long haul.

The result of all this non-writing stress is that we are pushing the release of The Fog of War back until 16th August. I’m very sorry about it, but there it is, people are more important than stories when it comes down to it. The Starling story (which still doesn’t have a name, this is clearly my brand) is puttering along but again it’s all a bit up in the air.

School breaks up for summer in the last week of July, so I have no idea what my writing schedule will be over the weeks after that–last year I did quite well getting up before everyone else and getting on with it. The plan is to release the Sylvia trilogy three months apart, and I’m still hoping that will work, although I’m starting to wonder whether I’ve over-faced myself. Time will tell!

Anyway, that’s it. We’re all okay, but it’s been a tough few weeks. I hope you’re all doing all right too in these uncertain times.

the week that was: The Year of Hell

The Week That Was

I haven’t done one of these for a while so it seemed time for some personal stuff. It’s not really a #WeekThatWas, more a #YearThatWas. It was one of the formative years of my life, if not the formative year.

Mr AL and I have a year that we describe as The Year Of Hell. Partly because we are Star Trek Voyager fans. And partly because, well, it was.

We had Talking Child in autumn 2007. It was all rather unexpected. We’d just completed the rigorous two year adoption procedure and were about to be matched with potential children. When we discovered I was knocked up, we were delighted on the one hand and on the other a bit confused, because we had put all that work in to getting ready for a family in one way and now it was happening in another.

So, TC arrived and that was great. And because I was knocking on a bit, we thought it would be a good idea to try to ride that alleged post-pregnancy fertility and go for Littlest. To our surprise, this worked when Talking Child was three months old. Go me. Yay. At age thirty-seven, at the beginning of 2008, when I’d resigned myself to never having a tiny baby, there I was, not only with a tiny baby, but with another one on the way. I was exhausted, pitifully sick and with awful, awful post-natal depression. Retrospectively I have NO IDEA why any of it seemed like a good plan. But eh, hormones.

At the time, Mr AL and I were working together in the audio-visual industry, mostly doing work for conferences. It came as a genuine surprise to me that no-one would let me climb ladders whilst pregnant or with a baby strapped to me in a sling. Mr AL still trotted off to work for days at a time and left me in rural Wales with the baby, climbing the walls. He couldn’t understand why I was virtually bonkers each time he came home from a tour.

And then, because the post-natal depression was so debilitating, I didn’t keep track of who had paid us and who hadn’t. A big customer that we trusted screwed us over. They got us to do a second large job for them before they had paid us for a large job a few weeks earlier and then they went bankrupt. They knew it was coming and they hung us out to dry, owing us about thirty grand. They opened up under another name a few weeks later and we had no recourse. That left us with a small baby, me unable to work because of small baby/pregnancy/depression, and an enormous mortgage on our idyllic rural house.

And then there were the deaths. My Pa died. He was elderly and it was expected. I was still devastated. I nearly went in to labour in the Chapel of Rest when I went to say goodbye. Then the mother of a dear friend died. That was unexpected and terrible. And two friends in their forties died out of the blue, one from a brain aneurysm and one from a heart problem.

We lost the idyllic house in our own bankruptcy, three weeks before the second baby was due. We found somewhere to live, but it was a very near thing. Mr AL crashed the new-to-us car Ma had given us money to buy and wrote it off. In the autumn, Littlest was born with pneumonia and at eight weeks old was on a ventilator. We spent the winter going back and forth to hospital in ambulances, with her on oxygen. We fell out with Mr AL’s parents in a comprehensive and horribly damaging way.

Littlest, back from hunting, with her walking frame, rifle and camo face paint.
Littlest, May 2013, back from hunting, with her walking frame, rifle and camo face paint.

If I had to have a do-over for a year, it would probably be that one. But having said that, I don’t know exactly what I’d do differently. I feel very strongly that what happens to you forms you as a person. I love my life and my beautiful family as they are, despite the difficulties we face.

Plus, that was the year that did a great deal of the excavating of the inner me. I don’t take bullshit from people as easily these days and I am more cautious who I trust. If someone lies to me, I cut them out completely. I am more vocal and I stand up for my family more quickly and perhaps too aggressively. When you’re under that amount of stress, friends you thought were close turn out to not be so close. People you weren’t close to become closer.

I don’t think any of those things would have happened as they did or in the same way if The Year Of Hell hadn’t happened. So, 2008, you sucked. But good things came of you, so you can stay.

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 Pexels.com

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.