What doesn’t Kill you makes you stronger!

This is an odd expression and I am beginning to wonder how true it is. This has been a really hard week for our family, in terms of managing and working on just a couple of hours of sleep a night. Clearly it has not killed me , yet, but I am not feeling physically strong : my knees are wobbly , my eyes sting and I have had some dizziness too. But I am feeling emotionally strong and fully ready for any fight that presents itself, so maybe it does make sense.

I recall very clearly when my sister-in-law came to visit Joshua in Special Care in the early traumatic days of his life. She tried to reassure me by saying ‘ Babies like this, only come to parents who can cope with it’. I can remember stewing on that over the next few days and getting crosser, as I felt the injustice of what she had said. So, strong couples and personalities are tested more, is that it? how is that fair? But now, as we have adapted to bring Joshua up as best we can , I can appreciate , 14 years later, that there might be some truth in that . But then that does not explain all the many couples who separate under the inevitable strain of having a disabled child nor the fact that Joshua’s challenges have certainly impacted on my own mental health over the years, so maybe I am not as strong as I like to think.

This week I have fought for what we need from our council, respite care and more absorbent pads, and I have fought a clean fight but a persistent one. I have resorted to emailing my MP and Director of Social Services in the middle of the night, when Joshua has woken me up, to prove that I am not exaggerating the extent of the problem. One friend suggested that I also resort to sending them my wet bedding and pyjamas due to the inadequate nappies, but as I said, I am fighting a clean fight. I have threatened to expose this scandal of neglect – for that is what it is in my eyes – to the local media, but so far it is only a threat.

Another thing that makes us stronger is numbers, so if you are someone or know someone, who is facing the same issues as we are, then please put them in touch with me. Surely we can create a Mum’s Army to get justice for our ignored children who deserve better?

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