That elusive emotional middle ground

I am struggling this week. And I am struggling to understand why I am struggling. But I have decided to stop thinking about that. I just haven’t got a cubic cm of struggle space left in my head.

This week I cannot cope. With the broken promises. With the endless list of things that have ordered but not arrived for Boo. With the things that have arrived broken or unusable. With the lies people tell you.

Come to think of the number of times I have had to confront every single one of these things this week alone, then maybe I can’t cope because it would be unreasonable to do.

Some weeks I get frustrated by everything but manage to shrug it off. This week I just can’t. I am more tired than I thought it was possible to feel. I feel in a stupour. I can’t remember the simplest things like whether I have eaten or been to the toilet in the past four hours. I know this isn’t normal. I feel semi-conscious. I am worried about myself. For my children if I get ill.

I feel like I’m breaking.

This week already, I have already had four meetings about Boo. Four. In three days. The first was with yet another of the nice, well-meaning people whom our local authority shuffles around (she has been in post for 8 weeks on maternity cover and is moving to another position again next week). Just as I was beginning to like her. She was appalled by some of things that have been said to me in the past week about Boo’s transfer to EHCP and possibilities for schooling. I kept my cool throughout the meeting, but was pointed and forceful. I worried I was being too forceful.

I felt the need to apologise (goodness knows why: I was polite, even toned, didn’t raise my voice). The words came out before I even realised what I was going to say: ‘You must dread meetings with me. I’m sorry. I have to stay angry in situations like this. If I didn’t, I would just break down and I made a decision a few months ago after a meeting in which it looked like I was going to lose Boo’s nursery place and my job and home that I wouldn’t allow myself to be that person in front of professionals any more’.

She looked so sad. She told me I was not alone. That she cared. That she could see we were being treated shabbily. I’m sure she does feel and think those things. But it won’t help us. She will be gone next week. Moved to another job within the service.

My words hit me hard and took me by surprise. I hadn’t realised how hard I had been trying to keep it together for the past few months. No wonder I am struggling so much at the moment.

I hadn’t realised either just how much I want to find an emotional middle ground I have long-since lost. The ground between frustration (not with Boo, not with cerebral palsy but with the systems and services that dictate his quality of life much more than CP does) and utter sadness. There has to be a place between anger and tears. I need to find it badly. I just don’t know where to look right now.

4 thoughts on “That elusive emotional middle ground

  1. Complicated Gorgeousness

    Gosh – you have been so let down by services no wonder you are at breaking point. I have asked for nothing from them for years as I hate how it makes you feel when they come up with a no for something you desperately need. We are trying again for some help via direct payments at the moment as Gabe’s feeding needs are a struggle but it is sad I am not holding out any hope. It’s so wrong xxx

  2. NewMummyJ

    I’ve just come across your blog whilst researching on Cerebral palsy. Myself and my partner are just starting out journey with our daughter who has been diagnosed with CP. We’re lucky that we’ve been diagnosed early ( 2 weeks old we got her MRI results back). I seem to find comfort in listening or reading people’s experiences of having a child with complex needs as I know that this isn’t going to be plain sailing at all.
    Been reading your blog for nearly 3 hours now and can’t seem to stop but I probably should as we have a baby who’ll need to be fed in a couple of hours. Time to get some sleep in before x

    1. mrboosmum Post author

      Thanks so much for reading the post and for your comment. I hope you are all doing well. Boo was 18 months or so when we got our diagnosis, but we knew from before his due date he likely had CP. I won’t lie and say it’s easy. But it does get easier to deal with the emotional side of things in my experience. And Boo is such a delight. I don’t hate cerebral palsy, even though I wish his life was easier sometimes. Not that he cares. He is so happy and loving. It’s dealing with all the services and bureaucracies that I find hard. There are so many things wrong with the systems that are supposed to help our kids. But you are not alone and it’s great you are reaching out to people now. Through the blog I have met the most amazing families and I never feel alone. I feel very lucky indeed. Keep in touch! x


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