Category Archives: motherhood

The Bridge

I’ve been helping my daughter with her revision this week. Well, when I say helping, I mean that I have mostly been letting her get on with it, with occasional reminders to actually do some, rather than spending all her time reading and watching youtube or whatsapping her chums (with whom she is going shopping tomorrow). She has some more exams coming up next week and apparently she wants to do well (well enough not to throw herself under the bed in despair, anyway).

Today’s help mostly consisted of a chat over the dinner table about biology. She doesn’t like biology. I am not sure why. She says it’s not to do with the spelling; it seems more to do with her resentment over the study of the female reproductive system (why don’t we learn about boys bodies, why does it all have to be about girls and I don’t intend having children anyway ergh ergh) and the number of different hormones that have similar names but vastly dissimilar jobs. Funnily enough, she, and the nearly-19yo who hung around chatting after lunch, seemed to be quite interested in the whole reproductive thing – especially the bit about how although we are mammals and our bodies may be ready and wanting to reproduce, us humans do have some control over when and who with and we have done for considerable numbers of generations.

I mean, I guess there’s a limit to how honest you want to be with your own children about the reality of child-bearing and child-rearing. I mean, you don’t want them to feel guilty or anything, after all, their appearance in my life was a matter of choice for me, and, really, honestly, if those of us who have children told those who don’t the truth of the matter, I can’t see that anyone would have another baby ever again.  All that huffing and puffing and all those sleepless nights and you don’t even get a smile for the first six weeks; and that’s before we get to assisted conception, miscarriage, prematurity, things being not-quite-right with baby and a looooong way before we get to childhood illnesses and accidents and things that change the course of where you thought you were heading (not Italy). 

It’s a difficult balance to keep, is sharing this kind of knowledge. I was never one for reading the baby magazines; I had (still have actually, I don’t like moving books along) a Dorling Kindersley guide to having a baby (before and after) which I devoured in my late twenties in my quest to have all the knowledge. I’d bought a number of DK books to prop up my classroom, so I knew the brand, I liked the photos; I was obsessed with (scared of) the birth itself; anything else I glazed over. Sleepless nights, nappies, vomit, yes, yes, we all know about those, don’t we? I suppose it’s no surprise that when S turned up, extra chromosome in tow and I underwent a huge readjustment in everything, I felt a bit cheated. Why did nobody tell anyone about this stuff, I raged? Why was everything so glossy and clean and easy looking when motherhood and babies were anything but? Why was everyone bringing up the next formula 1 racing driver/olympic swimmer/champion or champions when we clearly weren’t? Why wasn’t anyone being honest? Was it all a big fat lie because otherwise none of us would ever take a reproductive chance?

Maybe it was, maybe it wasn’t, I don’t know. The leaflet I was given when S was born certainly pulled no punches. There was a whole array of things I was going to have to get used to – things I didn’t want to have to think about, things that frightened me. But here’s the thing. That was the day when I realised that these big, scary things like heart defects and language/communication problems, thyroids and funny teeth, they were all, in the end, things that didn’t matter (apart from the terrible haircuts and brown cardies – they will continue to matter because STANDARDS.) I remember the moment, as clear as if it was yesterday, the moment when I decided that I didn’t care. There he was, in his little Tupperware cot, hair fluffy and disappearing into his newborn Babygro (blue); whatever happened, whoever he turned out to be (so long as he wasn’t some sort of master criminal), I would still love him. Because this is the thing they DO tell you (and if they don’t tell you I will have Words). Eventually, you will love your child. Eventually, things will settle down, and all the things become bridges you will cross – or not – when – if – the time comes. And love, your love, will be the thing that carries you over. Don’t let anyone tell you anything different.

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.

We don’t need to be afraid

You know that thing where you wish you had a skill that you patently do not possess? I don’t often wish this – not that I am super skilled at everything, you understand, more that I am happy being me – but once in a while, I really wish that I knew how to make a film. I quite like making little movies of family life (I have a gorgeous one of baby A laughing), but the snippets I have collected over the years are only really meaningful to me. They don’t form part of any particular narrative and none of them are stitched together. They are simple snatches of time when I had a camera to hand, unusual in itself, especially when they were little. In the time it would take to find the camera and get it going, the moment would, nine times out of ten, be gone.

What I’d really like to do, I think, is make a film about our lives that people understand. Not that there isn’t any number of those kinds of films going round; I quite often write about them, after all. There’s the 50 mums, the young man whose brother is a soldier, the girl next door. These films are powerful and they tell parts of a universal story of love and life which we all recognise and yet they are subtly disruptive, which is, I guess, why I like them.

When I started this blog, I had originally intended it to go along in a linear fashion. To tell our story from the moment of his birth to now as a sort of autobiography. That is, until I got distracted by education and my plans went out of the window. Or, maybe, if I’m more honest and less covering my real feelings with a joke, as soon as I realised that revisiting painful experiences, parts of my life when I was really worried or didn’t know what to do, when I was overwhelmed by fear, I guess, was too hard to do. The process of writing a memory involves an immersion in that experience and that wasn’t helpful to me. Keeping everything on an even keel is quite hard work, after all.

The thing that I have managed, I hope, to keep hold of in terms of my original intentions though, is that I wanted it to be truthful. The more I’ve written about disability, the more I’ve read around and thought and looked at representations, particularly of Down’s syndrome, the more I see it. Two stories. The ‘high functioning’ (awful term), cheerful, loving angel and the other one. The scary one. The one that nobody seems to want to accept. Non-verbal. Mysterious. A living echo of a bygone age of institutions, an age we are supposed to have left behind. And the more I’ve thought and written about our lives, the more and more clear it is to me (and I hope to you, dear reader) is that the last thing our lives are, that he is, is a one dimensional caricature, one thing or the other.

One of the things I never thought I’d get to say in a professional context, and which I used to regularly say in the early days was that there was no such thing as a crystal ball. I can’t see the future, and neither can anyone else. It’s a good riposte to those who would prick my bubble of self-defence, you know, the one I continuously blow so that fear of the future doesn’t dominate my life. If I could have seen, taken hold of a spyglass and peered into 2020 back when he was born in 2001, the life we have now when I was a young mother with a fragile baby in her arms, would, I am sure, have been frightening.

But that doesn’t mean our story shouldn’t be told. It doesn’t mean I, or anyone else, should sugar coat the truth, that there isn’t dignity and love in the messy realness of disability, no matter what form it takes.  Life isn’t easy. But we need to tell the truth and keep on telling it, so that what was mysterious becomes part of the day to day. We don’t need to be afraid.

Please take the time to watch this beautiful exploration of the complexities of family life through a discussion by Alex Widdowson with his parents of his brother, who has Down’s syndrome.

 

 

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.