Nurture 20/21

It seems like a very long time ago since I started writing a looking-backwards-looking-forwards post and I almost wasn’t going to write one this year; however a lot can change in a day and here we are. After a very dry year of blogging, two in a two-week period (it must be the holidays).

Last year I didn’t write one. Instead, I wrote something about wellbeing. You can read it here if you like. I can’t remember why this was; it certainly didn’t have anything to do with some sort of foresight. In fact, last year saw me not write very much at all for a whole bunch of reasons including not having either the time or energy. To be fair, I haven’t got much energy today (the young people in the family are determined to stay up til at least midnight on NYE and I haven’t yet reached that stage of my life where I am prepared to go to bed before them unless I am ill) so I’m going to keep it short and sweet.

Good things and Gratitude

One teatime in the summer we made a list together. Everything was getting on top of A – the anxiety, the enforced stillness, the nothingness to do – so we sat, after the tea had been eaten and before we tackled the washing up and made a list of things for which we were grateful in the face to trying circumstances.

They included:

• Clear air
• The garden
• Gaming with friends
• Home made curry and naan bread (this is fast becoming an institution)
• Online bingo
• Daily walks
• Lack of traffic
• Family time
• Bike rides
• TV series watching (Merlin, Dirk Gently, I-Zombie, Agents of S.H.I.E.L.D., Warehouse 13, Battlestar Gallactica) (we have yet to find another one we like as much as we are back to Merlin)
• Different zoom backgrounds 
• Fixing up the house (that was R)
• Social distancing (that one was me)
• Seeing more of friends – I suspect I am not alone in ‘seeing’ more of my far-flung friends this year than I have for years.

It was a good thing to do, when everything seemed a bit much, and helped us to focus on the things that we have, right here, right now, instead of the things we lost. The only thing I have to add is that I am thankful that, so far, we are well.

2021

At work, I have developed a mindset called ‘Steady as She Goes’ which I am taking forward into 2021. When I say it or think it I imagine a steam ship shuddering into darkened waters, not knowing what is ahead, only that it won’t be easy. There might be rocks upon which the great vessel may founder, or a storm or a tidal wave. No-one knows the details except that there is peril that might or might not be avoided. There is a certain relentlessness suggested in it that, for me, captures well how it has been and how we know it will be before the spring comes and we can breathe freely again.

It’s hard for me to look too far forward, which is something I have become, strangely, used to. When the future looks scary I have learned not to examine it too closely and I try not to spend too much time fretting over the difference between what ought to be and what isn’t, even though I fail sometimes and start thinking about the difference between my experience at 17, at 19 and theirs.

So that’s it. We are where we are and all that. Control what you can and try not to worry (or get too angry) about the things that you can’t etc. Better days will come (we hope) and when they do then we’ll see.

What I Learned at School

One of the things I’ve been struggling with lately is forming my thoughts into something coherent. I’ve been caught up in a vortex of fear and work; it’s not pleasant, I can tell you. Sometimes, everything feels OK and we all carry on much as we do every summer (it has helped that the weather has been so lovely), with the added advantage of having daddy around. Other times, like last week and this morning, I, and the kids, feel like we’ve hit a wall. We want back the things we enjoyed. A takeaway. A hug. A chat and a giggle that just happens and doesn’t have to be organised and filtered through a screen. Movement. Someone different to the same five faces.

Most of the time I can almost persuade myself nothing much has changed. Over the years I have become used to periods of isolation. I’ve lived most of my life away from my parents and sister (funnily enough I am seeing more of them now than I have in a while). Chicken pox, nits, fevers and the, shall we say, digestive nature of many childhood illnesses have been good training for weeks of being housebound. I gave up going to church at Christmas some years ago – and my health at that time of the year has improved dramatically as a result. So far, so same old, same old.

This strange time has highlighted some of the sadnesses that are easy to ignore when you are all busy, beetling about, doing all the things. My younger children are hanging on in there with the support of friends on Whatsapp and Discord, but S…he has a phone but noone has helped him put a friend’s number on it, and I can’t because I’m not there where his friends are. Like many disabled children and young people, he is doubly lonely, the barriers to friendship amplified by this lockdown, a sinister foreshadowing of his future if we aren’t careful.

And mortality. I mean, I’m not saying that I forgot I was mortal, but I kind of did. Giving birth to S was the last time I had a proper brush with death, and that was nearly twenty years ago. It’s easy to pretend we will go on forever and fail to plan for the fact that we won’t. My biggest fear is that the hubs and I will be carried off and A will be left with the responsibility for both his older brother AND his younger sister. It isn’t to be borne, it really isn’t.

I do wonder what the medicine of fear will do to us all. In the short term it is keeping us safe, but there are side effects. Will we be able to function in the workplace when we feel breathless with anxiety about being there? How will I reassure everyone else who leans on me if I can’t reassure myself? And the children. Mine are older, but they are still young. How will this caution we have drummed into them – and I know we have because S doesn’t know what to do when he sees a stranger – affect their friendships? Will they judge friends who took a different approach to theirs? Social media has been great – but the FOMO is still strong and maybe even stronger now. Will they be afraid?

I’m not one for wishes and I don’t believe in luck, but I wish it was the summer holidays. I wish I didn’t have to cut myself in two, ignore my precious loved ones, in order to work from home. I wish that we were already at that natural break. I wish the economy that we have created, the giant hamster wheel we all seem to be trapped on, hadn’t taken advantage of the second wave of feminism and ensured that a household of expense needed to be serviced by at least two people working – and pretending that their familial commitments were managed by someone else.

I don’t know how we are going to get back to school, to some sort of run of the mill, humdrum, ordinary existence (I’m avoiding the word normal), but what I do know is that we need a plan. And more, it needs to be simple, clear and created together. I learned that at (specialist) school.

Just About Coping

There’s a meme that pops up on social media every so often, entitled ‘just about coping’. It’s a lovely space where (most often) parents of children with Down’s syndrome get to advertise the joy that an extra chromosome 21 brings to their lives, how their families aren’t so different from typical ones in the face of overwhelming pity and the tacit societal understanding that life with a disability/disabled child must be rubbish. If you want a smile, search for the hashtag. I promise you will be uplifted.

This post, however, has nothing to do with that. This post is actually about the reality that is just about coping. With work, with life, with money, without money, with parenting, with disability parenting, with getting older and your kids growing up and everyone having different expectations of you and you finding that, instead of somehow being apart from the patriarchy because you disapproved of it, you are just as trapped within it as everyone else.  Life in 2020 doesn’t look like it’s going to get any easier any time soon (sorry), so if, like me, you have a demanding work life and an equally (if not more so) demanding home life and you haven’t got any time for wellbeing because you are, in fact, just about coping, this post is for you.

I haven’t written a wellbeing post since this one; and this one isn’t so much about physical (wash your hands when you get home, EVERY TIME) as mental health. Not that I am an expert, but if you feel like this and you are weighed down with a heavy mental load in both your personal and your working life, then these are the things that (sort of) work for me.

1. Ditch everything you can. I have successfully ditched the making of the packed lunches and the doing of the weekly menu and internet food shop. It does mean that I have to eat stale bread sandwiches with fillings that don’t go to the edge, but as far as I am concerned, this is a small price to pay. The way to achieve this is to just not do it. That way, someone (else) has to step into the breach or there isn’t any food. It has NOT been a successful strategy as far as the disability paperwork and meetings are concerned, nor does it work with personal care or ironing, but I refer you back to the first sentence of this point. Ditch the things you can.
2. Related to the above is to identify the things that drag you down and stop doing them (if you can). I hate cleaning with a passion. I hate it and it drags me down. I resent spending my spare time doing something that I dislike so much. I’ll do it if I have to, but it’s not something that brings me joy. I’ve got a really good cleaner now, to whom I am pathetically grateful, and it helps. My house is, as she tells me, getting better, and that makes my life more pleasant in general. If you’re in a job where people treat you badly, keep your eyes out for a different job. It can take a while.
3. You don’t have to agree to everything. There are things you can say ‘no’ to. You can say no to things in your personal life and at work. It’s OK. You don’t even have to have a reason. You don’t have to be extraordinary to live a good life, to be loved and to love in return. You can just be you.

You may have noticed that there is a theme to my reflections; that of taking away rather than adding, of simplifying rather than increasing the complexity of an already complicated life. There are things you can’t avoid (here’s looking at you, bills) and things that you can’t avoid that lay you low (here’s looking at you social care and I can see you trying to get out of the way, Mr Mortgage); there are always unpleasant things in life that you can’t get away from that have to be got on with. Sometimes taking your brain out and giving it a rest is an excellent option. Sometimes carving some time and space out for yourself is an impossible task.  Sometimes all you can do is grit your teeth. Cope, just about.

Christmas is A-coming

There is a lot about Christmas-time that I don’t like. I don’t like the being ill. It’s a rare year when one of us hasn’t got some sort of hideous virus; before I gave up carol services, it was a tradition that, having learned all the parts, I wasn’t able to sing them. And the dark, dark mornings. I actually hate those. I hate having to drag my still sleeping body out of the warm cocoon of my bed, force feed it some breakfast and then drive to work. It’s torture.  And I don’t like doing it to my kids, either. The everything on top of everything else you usually do. That said, there are many things about Christmas that I do like, not enough to make it my favourite time of the year, but certainly enough to have it up in the top ten. The lights, the decorations, the ultimate in thumbing your nose at the darkness as we gather together and make our own light. The topsy-turveyness of the whole thing. I like that.

There is an inevitability about Christmas that I have come to respect. I don’t really have time to write this (I should be wrapping the final presents, ensuring that the number of gifts is equal for each child, I should be delivering parcels to beloved family members, washing my hair), even though I have taken some steps this year in an attempt to avoid overwhelm. Last year I limped my way to the Big Day, chucking out anything that wasn’t essential (gingerbread houses – gone! Red cabbage a la Nigella – nowhere to be seen! Cards? What are they?); this year, by doing some things ridiculously early (the lady in the Post office actually rolled her eyes at me during half term) and refusing to do some others, I have managed to carve myself some time to think and – strangely – today, I have given myself permission to write them (some of them down).

So, without stopping to think too much (if I do that, I won’t write anything because of Fear of Repercussions), here goes:

• Working full time with three kids, one of whom is disabled, is very, very hard, and there is an extent to which I wouldn’t do it if I weren’t caught in an economic trap along with the rest of the world. There isn’t much time for anything else and every day feels like a treadmill and every weekend is not long enough. It impacts on my ability to maintain ANY social connection beyond working relationships, which, in turn, means that every day feels like a knife edge with no backup plan. Thank goodness no-one has been properly ill (yet).
• When an acquaintance of mine who works in school improvement for a local authority told me one hot afternoon the summer before last that it would take two years before I saw change in my workplace after taking on the role of leader, and that those two years would be not unlike climbing an excessively high mountain the most difficult way imaginable, she wasn’t wrong.
• When a wise woman said, ‘don’t try to change anything!’, she wasn’t wrong either. It takes a while for trust to build. People have to see you work, and work well. You have to learn your job. This takes time. Turning up every day can be enough.
• Leadership is lonely. Disability parenting is isolating. There’s a reason so many people use social media.
• There’s a difference between being a leader and being a manager. You can be a leader without being a manager; you can get people thinking and change their minds from behind the protection of a computer screen, but doing it up close and personal while checking that everyone has logged their sick leave correctly is entirely different.
• You cannot allow work to take over your life. There has to be something else other than work. Yes, it’s good for my kids to see that I work too, that I do not exist to service their needs – but I do need to be there for them at the end of the day. It is I who should dry their tears, not they mine.

And so I am back to the inevitability of Christmas, the forced stop and do something else, something that isn’t work, that isn’t dreaming about work, thinking about it, writing about it. This year I am grateful for it.

Happy Christmas.

An Apology

Apologies for the silence. I’ve been a bit busy. I’ve been busy working, stretching myself thinly and growing fat on oven chips and posh pizza (we don’t like cheap pizza with its fake cheese topping and cardboard bottoms). It’s alright when it goes alright, a logistical Heath Robinson Affair, ready to topple as soon as someone runs out of leave. At least I haven’t got any marking to do, even if I have the report writing, the phone calls and the emails, so many emails on a continuous running stream throughout my working day.

And then there’s the appointments. Squeezed in between the school run and the supermarket delivery, I have to log in and use a password and it’s not even for me. I have to explain (again), cajole and question; is that blood test really necessary? Will it make any difference? Is there really no-one to coordinate it all? No paediatrician for a grown up boy? It’s me? Are you certain, are you sure?

And the meetings. The number of strangers touching our lives is growing daily and yet we can’t find anyone to spend the personal budget on. Economic migrants, we haven’t got a social network; we haven’t got time to form one. Even if we had, there’s no reason why anyone we knew would want the job. No-one wants an itty bitty job that pays peanuts, and I don’t know about you, but I can’t shift that sneaking feeling that there’s an element of motherblame that still hangs around us, whispering, poisoning.

Slowly, so slowly, ‘inclusive’, ‘inclusion’ has shifted its meaning. Slowly, so slowly, we depart, softly wrapped up and separated into a lonely little isolated world and I can’t help but wonder, as I sit in front of the fire in a haze of relief and slight bogglement that the weekend is finally here and tomorrow I can sleep beyond the alarm, who should be apologising to who.