family – Page 2 – A. L. Lester

#TheWeekThatWas

I’ve ground to a halt. Those of you who read my newsletter will have seen on Tuesday that Morris the Dachsund was very unwell. He injured his back a fortnight ago, we think jumping off the compost heap after a rabbit or a rat. He was improving, with rest. And then on Monday, he jumped off the sofa rather than using his steps and he damaged his back so severely he paralysed his hind legs.

We took the decision to have him put to sleep on Wednesday morning. He was four.

Also on Wednesday, Littlest had an appointment about her tendon-transfer. We have been talking about this for two years now…she needs it to hopefully correct the posture of her feet and get her standing again. COVID has meant everything has been on pause, but now we’re looking at the procedure happening in the spring. It involves a general anaesthetic, which is tricky for her, given her condition. However, although this is so-say ‘elective’ surgery, if it’s not done and she doesn’t resume standing transfers etc, it means she’s more likely to develop lung problems and scoliosis later on. So ‘elective’ is a matter of gradient, really.

And then, finally, for reasons, Talking Child has been in trouble at school and been excluded for a day. The reasons are completely reasonable and Mr AL and I are mortified and furious. We have to do the Parent Walk of Shame on Monday morning to discuss what happens next with her head of year. We’ll obviously also be addressing the atmosphere of identity-based harassment she’s dealing with as well–school are tackling it and we’re all working as a team; so in a way it’s positive to have this opportunity to talk things through. TC is mortified she’s let herself down and is currently cracking on with the work school have assigned her. She’s grounded for a month.

I’m done with this week. Just, completely and utterly done. I was going to write a Halloween short story and have it out before the end of the month…in time for Halloween in fact, quelle surprise. However, that’s gone by the board and in between crying about the dog, managing Littlest’s birthday yesterday–she was thirteen and god knows, we never thought she’d get this far when she was born with pneumonia–managing hospital appointment and vaccination bookings and dealing with Talking Child’s misdemeanours I’m not doing author-things at all.

That’s it. That’s where I am.

#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.

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

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.