We need to talk about this more…

Miscarriage.
What a word.
For me, at least, it says: ‘My body failed me. In my most basic task of reproduction’.

All miscarriage stories will be different, but they all have some common themes: hope, fear and a loss of dreams.

Getting pregnant with Big was, well, uncommonly easy. Second try, there she was, a little blue line. As I panicked about the wedding in France we’d just been to (with its accompanying red wine and soft cheese) she grew fat and healthy and was birthed through the ‘sunroof’ when she utterly refused to be turned. My little breach baby looked at me, mewled, and was place on my chest.

But after that… my body turned on me. I could not get pregnant again. We wondered if it was the passing of time, added stress in our lives… and then… oh, oh, look, yes that one has held.

Six weeks in I miscarried. The care – a phonecall – was brief, the pain like a really intense period… nothing anyone could do, no advise given, you clearly can get pregnant so off you go again.

Roll forward six months and I am pregnant again. We are tentative, we don’t tell anyone, though the telltale signs of my not drinking coffee are there for anyone to see. Eleven weeks, nearly there… but I start to spot. We go to A&E.
It is the weekend. No scans are available.
What..?
Go home, rest, we’ve booked you in for Monday.

But good God that Sunday night. I bleed. Proper ‘I think we’re losing the baby’ bleeding. My brother is called in to come and sleep at our house so Big can sleep through. We blue light to the hospital with me trying to stay calm. All the while having, I later realise, a full on rushed delivery. My body is expelling our child.

Retrospectively, the care is appalling.

I am in the triage centre for ages as one doctor after another comes and tells me I am miscarrying.

I am finally transferred to a single room, and a nurse gives me an injection, no explanation given before she does it, to hurry the process along. My husband has to leave to be there when Big wakes up, explain where Mummy is. I am left, on my own, to see this through. There is no support from the nurses.

We still have the scan booked in in the morning, and so I sit, in pain, surrounded by other women here for their first, second scans. They are excited. I am nervous, frightened, sleep and food-deprived. And still there is more to come… and it is only when the D&C is done, that I am transferred to a proper ward, away from the pregnant women, away from the ward where they put everyone who doesn’t fit anywhere else… that I meet someone who takes time to care. She is the first kind member of staff I have met in this whole, unbelievable, 24 hours. Everyone else has done their job efficiently, but with no empathy.

I am sent home. Technically, there is nothing wrong with me anymore.

There was no follow up care. I spent 3 days barely able to get out of bed. I was exhausted, drained – both mentally and physically. I couldn’t talk to anyone when they asked how I was. I cried a lot. No professional came to knock on the door to see how I – how we – were doing.

Left to manage our own emotions, our feelings of emptiness, still look after Big, this was a really difficult time for us. We could have done with more help. I wonder if people think that because you haven’t broken your leg, or a ‘real’ child hasn’t died (possibly not, but they were real dreams, real hopes), that actually it’s not a big deal.

It is a big deal.

Miscarriage isn’t talked about. It’s still a little taboo. Perhaps we’re back to failure again. Or maybe it’s because it’s all a bit, well, messy.

When we missed our 12 week scan – hello? – we were called and admonished for not cancelling. I hadn’t really felt I should have to do that myself. Had, foolishly, expected a little joined up NHS thinking.

There needs to be a sea change here. There is a staggeringly high proportion of women who miscarry every year. They all need kindness. Compassion. To be talked to.

Follow on care.

To be treated separately to the women who are celebrating their soon to be babies. So we can privately mourn the not to be babies. Mourn the life not had. To be enabled to move on.

Hello Small. *waves*

Mumsnet is running a campaign to improve miscarriage care in England & Wales. You can read about it here:

http://www.mumsnet.com/campaigns/miscarriage-care-campaign

cafe

Caring about carers

I am a carer. Not just a parent, a carer. I know this. I know that all I do for Small – get him up (because he can’t get up himself), change his nappy (because he is still in them and won’t be coming out any time soon), get him dressed (because he can’t do this himself), take him down for breakfast (because he cannot walk), strap him in his highchair (because he doesn’t have enough sense of danger not to know that leaning out of it at a ninety degree angle might hurt him), feed him breakfast (because he can’t dig into his weetabix with his spoon)… you get the idea… is way above and beyond what I should be doing for a boy who is 4 next month. (4? I know..) And yet I do it, because it is what he needs to get through the every day and most times, I don’t think about it, it’s just what we do. But I recognise the extra strain it places on our life. The physical strain it puts on my body and the strain it puts on our day in terms of time it takes to get places, and the places and events that we can and cannot access. Picnic in the park? Thank you very much. Lunch in a cafe down a steep cobbled street? Thanks, but we’ll pass.

This is why I am so grateful to the other carers in our life who help to take that strain.

To the nursery workers who sit with him to make sure he interacts with activities as much as he can, who get him outside to enjoy the fresh air and the sunshine and who slowly, slowly makes sure he eats. Small loves loves his food, it just can take a mind-numbing while to get it in.

I am grateful to our initial respite worker who recognised that I was on my knees, could not see a way through my life and just took Small overnight, let me sleep, uninterrupted, and find a way to get all our lives back on track. Every other week she took him into her home, made him a part of her family. It was clear how much they enjoyed having him and clear how much he enjoyed being there. Society sees our children with disabilities as a bit of an irritating burden sometimes I think, but Small gives so much back in his laughs, and his cuddles and his enjoyment of just being In The Room (as someone so bluntly, but accurately, put it: ‘he’s a lot more ‘here’ isn’t he?’ Yes, yes he is…).

I am grateful to our current respite worker, who has taken him on, got to know him, worked with us to get to know who he is… so I can sleep easy knowing that he is safe, and cared for. And when he is away my head has time to empty out. I can hear quiet. So there is room to fill it up once more when he returns.

I understand that all these wonderful people do this as a job, they are paid. But I cannot believe anyone would put themselves into a caring role if they did not care. I see them go the extra mile and I know that they do. They care.

There is a man walks down out street… he’s about 40, I think. Every day he is ‘walked’ – no better word – twice a day by people who I assume must be his carers. He walks with an awkward gait, makes guttural noises as he walks and wears the helmet of someone who fits, or faints, for no reason. Every day, come rain or shine, off they go, round the park. This could be my son in 40 years time.

When I am dead and gone I hope, I so hope, that there are still people around who want to be Small’s carers, who will take him out, walk him, bring him out into the open to be part of the world. His sister will not be able – and should not have to – deal with it all by herself. This is what our ‘big’ society is for. This is what makes us human – the connections we make with, and the support we give to – other people. Otherwise, why are we here?

Some just need it more than most.

Next week is #CarersWeek. Shout it out, support it. These people, these incredibly people who do it through necessity or through vocation, they’re worth it.

You can find more information on Carers Week here: http://www.carersweek.org/

Parallel Lives

When I became pregnant with Big, I realised how I saw the world, and reacted with it, would never be the same again. I hadn’t somehow allowed for that. I would cry at everything, even if it had no relation to parenthood; news stories, films, adverts… suddenly these things that I had previously interacted with on something of a purely transactional basis – somehow were now affecting my core. A seismic shift if you like. Parenting pulls us out of that wonderful self-centred bubble and propels us towards connections…

And so it is with being the parent of a disabled child. Only in ways I hadn’t anticipated either.

In hindsight, going to watch ‘The Curious Incident of the Dog in the night-time’ probably wasn’t the best choice of a night out for OH and I. Our local theatre has linked up with all things NT Live, so off we went, excited at a night out. No children. Wonderful babysitter.

If you’ve not read the book it’s essentially the story of a boy who is on the spectrum – though this is never talked about explicitly – investigating the murder of his next door neighbour’s dog.

We had both read this book in those carefree hedonistic days of pre-children that I mentioned earlier. And we’d both enjoyed it, found it a fascinating read. I remember finding Christopher, the protagonist, interesting, enjoyed being allowed in to his headspace to see how he thought and reacted with the world. I smiled, indulgently, at the way in which he coped with the day to day.

But seeing this on stage, hearing the words lifted from the page… Watching him curl up in a ball to hum in order to block out the policeman talking to him… counting up prime numbers in order to stay calm… the way in which he Would Not let anyone touch him. This pulled on every single maternal strand I had. I empathised with his parents not knowing quite what to do, their frustrations with life turning out the way it had, their overwhelming love and need to protect their child… and I saw my own fear at Small getting bigger and how our life could change too.

Some of this world is my world now. And it turns out that I can’t watch it played out in front of me.

What broke me, made me suggest we didn’t come back for the second half was this…

Christopher is describing another child at school. This child, he says, isn’t even as clever as the dog who has died. This child he says, has to be fed with a spoon. He would never be able to fetch a stick even.

The audience laughed. Not horribly, but they laughed.
In a previous life I probably would have too.
But this child he was describing? He could have been my son. My son in whose achievement of being able to eat off a spoon I am immeasurably proud.
And so there was this divide between me… and the rest of the audience.
Who did not know this world.

This is not a critiscism of the play, or the audience. This gives us an insight into Christopher, how he thinks, where he ranks himself in the world – against other people – as we all do. But it made me sad. I didn’t find it socially unacceptable, just personally unpalatable. There is a difference, I think.

At the interval we departed. We were That Couple. We went to the pub, drank wine, and deconstructed the awfulness of not knowing if we should ask the other ‘Can we leave?’ but so pleased that we had. In a mark of how far we as a couple have come… we did not cry… it did not ruin the evening… no-one berated the other for a shocking choice made… we just recognised that: when we go out, all things disability are off the menu.

head facing away
What about Godzilla next time, Dad…?