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.