personal – A. L. Lester

#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!

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.

coming to terms with CTBP1

If you follow me on twitter and to a lesser extent here, you’ll know that Littlest has very complex needs and is classed as ‘life limited’. Well. Something has happened and I’m not sure how I feel about it, so where better to process my feelings than here, publicly?

Littlest is ten. She was born with pneumonia and spent some time in an incubator. She was very ill and on CPAP when she was eight weeks old and had swine flu the summer after she was born. She never met her milestones- rolling over, walking, talking. And as she got a bit bigger, everyone started to believe us when we said there was something not quite right about the way she was growing. Eventually we got referred to the bigger area hospital and then they referred us to Great Ormond Street. Lots of tests got done for rarer and rarer conditions and all drew a blank. GOS thought she was interesting and did a muscle biopsy and it turns out that the nucleus of her muscle cells are in the middle rather than on the edge as they should be, so her muscles don’t sproing properly and she’s underpowered. This presents similarly to Muscular Dystrophy, but it’s because she’s outgrowing her strength as she gets bigger.

So, she no longer walks at all, except in a walker. She is classed as having an unsafe swallow and is fed by tube. She can’t turn herself properly in bed. She can’t vocalize words, although she can make sounds. She communicates with sign, but that is getting harder for her as she is losing her fine motor control. She has a learning delay and is probably around about four intellectually. She can’t read but she recognizes some letters. She can count a bit. She understands pretty much everything you say to her and really wants to learn. She has a wicked sense of humor. She likes Peppa Pig and books and her iPad and any animals she comes in to contact with love her reciprocally.

We had no diagnosis. And therefore we had no prognosis. We were referred to the Children’s Hospice seven years ago. The criteria for a referral is that they think that the child has a fifty percent chance of surviving til they are nineteen.

This took some coming to terms with.

The thing I have found absolutely hardest to process, though, is the lack of certainty about it all. Four years ago I started having these stupid stress-related seizures, which were eventually diagnosed as ‘Functional Neurological Disorder’ or a learned reaction to stress. Mindfulness, relaxation and avoiding stress is the only way to manage it. It’s taken me years, but in the last twelve months or so, I’ve finally begun to live in the moment, appreciate what we have and just seize the day. Enjoy what we can. Live our life in the cracks of appointments with Littlest’s fifty-ish different professionals. Spend time with Talking Child. Fit friendships and self-care and tending to my relationship with Mr AL around the chaos.

And then. Yesterday. We had a letter from the 100,000 Genomes Project. We had had swabs and bloods taken years ago. I’d put it out of my mind as something that was yet another test that would be futile. A hoop for us to jump through that wouldn’t give us any answers but which might help future children and parents.

Littlest has a small alteration to the gene CTBP1.

We have an appointment on Tuesday at the area hospital to go and discuss it. Obviously in the meantime I have played Internet Misery Bingo (TM) and found a load of articles I don’t have the education to understand and also, a support group set up by a genetics study in the US, which has ONE (1) other parent on it, from the Netherlands, with a slightly older child who has hauntingly similar symptoms.

Mr AL and I are both a bit weepy and shocky. After so long and so much adrenaline, I have no other emotions left. How am I supposed to feel about this? Materially, it changes nothing. The sample size of children with the alteration is vanishingly small, so we are no closer to a prognosis than we were before.

All information is good, but I simply don’t know what to do with. A very long time ago I blogged every day about life, feelings, the usual introspective noughties stuff and it seems like that’s where I turn again when I need to process.

Thanks for listening, if you’ve got this far.

life chaos abounds

I missed last week’s post because life got in the way, I’m sorry. Littlest has been in plaster casts on her lower legs and feet for a fortnight after a botox injection in to her ankles. This is to help prevent her feet from curling under any more than they are and hopefully enable her to do standing transfers for a little longer, rather than needing hoisting all the time. The casts have meant the moving and handling we do on a daily basis has been much more difficult because you can’t get them wet. They are very hot pink though, which has caused some glee.

In addition we have had to update something called the ‘Advanced Care Plan’ which is basically setting out our wishes should she become very ill. It’s good to have in place, but flipping heck it’s grim to fill in. And Talking Child has had all sorts of traumatic appointments as well. We’ve collectively been sat on the sofa in a heap with our respective pants* on our heads. No writing was done and we all felt awful.

Since Friday, I’ve been clawing myself back up the slope and have written a handful of words – a few hundred – every day. Plus we managed to fit in a family trip to Longleat, where we fed giraffes, held snakes, watched giant otters sleeping and generally had a brilliant time. We have more trips planned over the summer holiday, starting with a weekend at the Children’s Hospice this coming Friday. I can’t wait.

Finally, I’m signed up to the SFF Book Bonanza giveaway this week – there are more than a hundred free SFF books and stories available for download for your reading pleasure should you so desire.

Next week: An excerpt from my work in progress, The Flowers of Time, which is cracking along slowing but steadily now, thank goodness.

*British pants, for maximum comedy value

works in progress: progressing, and that’s about all

I’ve done a load over the last month, but not much of it actual writing.

Because of the shenanigans with MailChimp pricing levels, I’ve ported my newsletter over to MailerLite, which I think will be a good thing long term, but was a pain in the neck to do at the time. And I’ve done the same for Mr AL, who has a much more complex set-up than I do, so it took ages. That done, I’ve also set myself up a proper Ko-fi page that will act as a sort of combination of things I blog here and exclusive content that first goes out to newsletter subscribers.

I’ve also committed to doing some posts for the Queeromance Ink Blog, about author-life in general rather than more bookish things. This involves me sitting down and actually writing them, but they’re coming together in my head.

Which brings me to actual writing! Inheritance of Shadows has another three thousand words, which went out yesterday – newsletter usually goes out on the first Tuesday of the month, barring disaster. If you’d like to get the monthly installments of Matty and Rob’s adventures, just hop on here. You will also be able to follow on Ko-fi as a supporter if you’d rather do it that way. I’m reading Secret Warriors: key scientists, code-breakers and propagandists of the great war by Taylor Downing as background, because Rob needs to know some stuff and I need to know the stuff before he can know the stuff. It’s fascinating.

Flowers of Time has had another few thousand words, but I’m still sidetracked by Katie Hickman’s She-Merchants, Buccaneers and Gentlewomen and feel like I need to get that under my belt before I write any more. I’m writing completely outside both my historical period and my geographical area and I don’t want to mess either up.

This month promises to be more of the same, hopefully with less opportunities for prevarication. Watch this space!