Friday, 17 October 2014

with intent

B and I have been off in Wales for a five night break this week. Ma and my sister had the children and we slept and slept and slept. And watched superhero movies and ate and then slept some more. It was blissful. Over the course of the week I have felt myself gradually unfolding and coming back to myself.

The couple of weeks before we went was very tough. N has had a long period of waking up between three and six times a night and we were both beyond exhausted. I had confided in the hospice how awful I was feeling, which triggered an off-the-cuff visit from N's disability social worker and advice to B that he should not leave me alone with N over the weekend and that he should make sure I got plenty of sleep.

A few days after that, we had a scheduled review meeting with N's Disability Social Worker, staff from the hospice and the Community Nurses. Everyone updated everyone else with N's state of health and how we were coping. We spent a couple of hours on it. The hospice people had travelled an hour and a half in each direction to attend.

We currently get four hours respite a week, which we save up and use roughly every other Saturday - N's carer takes her out and we try and spent some quality time with L. We wanted some overnight respite, so that we could both get some sleep at the same time. One night a week or fortnight.

At the end of the meeting, the social worker said that she was sorry to tell us that they were unable to give us any more respite. They had various reasons to justify this - but essentially they were just that - justifications. They said that in their opinion we are coping; we have respite support from Ma (despite her age); there are two of us and we can take it in turns sleeping on the sofa to make sure that we get a good night's sleep; that we already have respite from the hospice and they take that in to consideration in their assessment; that they are concerned that if they give us any more support it will lead to an 'escalation' and we will need more and more; and that waking between three and six times a night is normal in a child of six. It was clear that they had made the decision before they came and the meeting was just a rubber-stamping exercise.

I was so angry and upset - and distressed -  that I asked them to leave. And B pretty much shouted at them, which is about the sixth time I have ever seen him get that angry in the seventeen years I have known him.

It's taken me all week to get enough brain-power back to work out what's going on. I keep coming back to what a friend of mine told me a couple of years ago, when we were first nose-diving in to this alternative life. She said "Until you are in this situation, you think that there is some sort of safety net for when this kind of thing happens. And there isn't". This week, I have realised that I had forgotten that. I had started to believe what Social Services were saying about being there to support us and that support is available when families need it.

I realised that the reason that I had got so, so distressed when they said they weren't going to give us any additional help was that they were judging us. They were looking at our situation and saying that we should be able to cope with the support we have in place. They were saying that in their opinion we are failing because we are crap - crap parents, crap people, crap carers. That with the level of support we have, anyone else would be coping.

That is what upset me so much.

And a bit of sleep has provided a bit of perspective, because actually, that's bollocks. We aren't failing because we are crap. We aren't even failing. We are managing an emotionally untenable and physically draining situation in the best way that we can.

A very long time I learned over a period of years that actually, when it comes down to it, you can't rely on anyone but yourself. Other people can give you a hand, but when the shit hits the fan, you can't rely on them to be there for you. This is for a variety of reasons, often good reasons, not just them being flakes. This goes for people and it goes particularly for institutions.

So this week I've decided - the swingeing letter I sent to our social worker and cc'd to our MP not withstanding - that I am done with begging for help from institutions. B and I are in this together and we are going to have to deal with it by ourselves. I'll take the four measly hours a week we're getting through the Direct Payments Scheme and I'll take the hats and footwear and the school transport. But I am done with fighting with people who are judging me for wanting help for my daughter. I am done with justifying myself to them. I am done with trying to explain to people who don't have a fucking clue about our life, that actually, it's a bit crap and we could do with more support than we are getting.

I am going to find someone to come and sleep in one night a week so that at least we get that respite. I have no idea how we're going to pay for it - I'm going to have to sell a metric fuck-tonne of eggs and a couple more chickens a week I guess, or finish my novel or get a paid-for column in a newspaper.

And I'm going to stop wasting my time on people and institutions that don't actually want to help us, just protect their own position - this includes L's current school.

All that time I am not fighting, I will have to spend with the children, with B, on my business and with my friends.

It's a huge relief, having made that choice. Now I just need to stick to it.

Thursday, 9 October 2014

in need of a SHIELD

Dear Person-who-is-not-really-Phil-Coulson. I realise this is weird and slightly stalky and I do promise that I am not going to turn up in your kitchen with a rabbit in a pot. Or at least, not a pet rabbit in a pot. Maybe a skinned, jointed, lightly sautéed rabbit with some shallots and a few carrots and lardons. But definitely not a pet rabbit. Really. I promise.

I have a lot going on in my life at the moment and I have decided that obsessing about the Avengers and SHIELD is as good-a way as any to practice avoidance. Because, you know. Other people's issues are so much easier to deal with than your own. And large, scary monsters and over-large, competently characterised superheroes are about as far away from my own experience as can be at the moment.

I wish that all our issues could be solved with a robotic suit, or an arrow, or a hammer or a widow's bite. I wish that there could be some sort of logical progression of a story, clearly defined roles, an enormous dust-up and a happy ending. I wish that the professionals who I need to rely on to sort things out for me to get on with my job were all as quietly competent and as quick to find solutions as Coulson.

I wish there was a group of superheroes around me that would bail my arse out of the fire when I need it and who would help me get things straight regardless of the odds.

More than anything, I wish that coming mysteriously back from the dead against all the odds was really possible.

You see, my six year old daughter has a non-specific, progressive, neuromuscular condition. We have no diagnosis. She is fed by tube four times a day. She has calipers and a walking frame and an electric wheelchair. She's prone to respiratory infections. She wakes needing turning between three and six times every night. My husband and I haven't had a full night's sleep for months. We've got a lot of good medical professionals giving us support and helping. But when it boils down to it, B and I are on our own in the middle of the night, listening to her breath and wondering if she's going to keep going or stop.

I spend my days trying to juggle all the normal things that need doing as a parent of a young family, managing a small smallholding and dealing with my daughter's professionals. This week we have had an unsuccessful go-round with social services to try to get overnight respite and I have emails and phone calls coming out of my ears. Last month, I spent time trying to get her orthoses sorted so she could walk – she was off her feet for three months because the order was wrong. The month before, I spent trying to get school transport sorted to take her and her electric wheelchair to school and back.

Sometimes, I want out. I want to live in a tower with a multi-millionaire who can throw money and a brain the size of a planet at my issues and have magical screens that pop up and down with a gesture and know I have invincible people at my back to lean against regardless of what monsters are coming out of the walls.

Sometimes this is all too hard and an imaginary world is so much less painful than the real one.

So, Person-who-is-not-really-Phil-Coulson, I owe you thanks for the space you give me inside my own head when I put that DVD on. That possibility that actually, the people behind the superheroes are real. That the dramatis personae bleed through in to real life and somewhere there is a group of people who do actually have each others backs and give each other support and I can pretend – and I promise, I do known it's pretend – that I could have that too.