Acceptance seems like the holy grail of spirituality and I understand why; it’s opposite is resistance, and as we all know, what is the point resisting something we can’t change? It’s only going to make us suffer.

I’m not even sure it has to be one or the other, black or white. Maybe there are shades of grey whereby I’m not accepting or resisting but stuck in some limbo state in between the two.

Only that, too, equals suffering.

Today I had to go down to the local government office to sort out a financial mess on my son’s behalf. I was told my son needed to accompany me so they could see him for themselves and verify that he lacks capacity to handle his own affairs. Due to his level of need, two male carers had to escort him, so we were quite a group heading into the building. I knew my son wouldn’t cope for very long and he didn’t; he became agitated and vocal, catching the attention of everyone else in the room, until the carers took him out for a walk while I spoke to a representative. I’m relieved that he at least didn’t lay on the floor which is what happened elsewhere in public last week, and he didn’t hit anyone, which is always a massive concern when he has a meltdown. No small blessings there.

The stress of the very short visit – in total, it probably took around half an hour, most of it on my own as my son had already been taken out by the carers – left me feeling so weighed down and hopeless. It reminds me of my desperation as a young mother trying to control my son who, as a six year old, ran riot around a restaurant gabbing food off people’s plates. Those times have gone. I don’t have to – and I simply couldn’t – manage him on my own anymore, but the same stress, the same heartbreak, remains.

I wonder if anyone who does not have a severely disabled son can even imagine what it is like. Children play up, especially when they’re young, but in time you can reason with them and loosen that all-consuming hold on them as they start to grow and value their independence. I have never lost that hold on my son. He is all consuming. He is unpredictable. He is terrifying. You never know what he is going to do. The only real way I have learnt to cope is detach myself. Not in the sense I won’t do all I can for him because I will always do that – but emotionally draw back, because otherwise the pain is too much to bear.

Maybe this is what I mean about being in limbo – not quite accepting, not quite resisting. This is my life and I cannot say I accept it. I often think about how it could have been. I grieve for the child I never had and never will have now. I grieve for the child – now adult – that I do have. I can’t imagine a day where that grief stops. I long for simple conversations with my son, Facebook comments, texts – the kind of stuff most parents take for granted. I long to see my son grow up and become independent – drive a car, go to university, get married. He will never do any of those things. He doesn’t have any concept of those things. I’m the one who wants them. I’m the one who feels the loss.

Am I resisting? If so, who wouldn’t? I don’t know, there are much better parents out there than me who devote their lives 24/7 to their disabled kids because they feel that depth of unconditional love and it’s second nature. I’ve never been that person. I’ve been ill all my adult life with chronic illnesses that nearly destroyed me. I simply never had the capacity to give my son that much of myself. I did the best I could. I still don’t know if it was enough but I know it was all I had.

I guess I’m only hurting myself by constantly thinking ‘what if’? But it’s impossible to stop. Maybe my acceptance lies there, in accepting this is where I am and how I feel and that life is so plain hard because I didn’t ask for this. I don’t have to be all saintly and spiritual about it if I don’t want to be. I don’t have to pretend. I can say to God that I wish things were different. I can feel God’s love for me and for my son and remember that Jesus was crucified in the flesh and in our own unique ways so are all of us in living a human life.

Anyone who copes with similar and has found a way to cherish their relationship with their child and their life as it is, I truly admire you. I journey on.