As ever, this day has snuck up on me and I’m late to reflect on it.

I’m not on social media much anymore, at least actively. My doomscrolling bought it back into my consciousness and it is interesting that even attention on a day of awareness seems polarising.

There seem to be those, like me, that deal with a life of cerebral with hard truth and dark sarcasm. I saw somebody had posted a t-shirt with a review of CP, with something along the lines of “Hard to manage, came without instructions, would not recommend.” Made me chuckle. Relatable.

The comments however, were full of “God only gives us what we can handle” & “I don’t agree with this sentiment, CP makes us special.”

Now, this is an opinion piece, so it only features my opinion.

Disability of any and all kinds does not make anyone special. It just takes us to the limits of strength that a massive proportion of the world’s population are so damn lucky they will never have to consider. Disability is not a gift. It is a lifelong challenge, an interloper that asked no damn consent before taking over your whole life.

I think I’ve ranted about this before, but to absolute Hell with the people that characterise the “only” disability as a bad attitude.

Maybe I have a bad attitude. I won’t deny this. But I do not judge anyone that lives with CP for any perceived “bad attitude” they may have. Because this life, no matter where on the spectrum you are living, is damn hard. The pain, the inaccessibility, the frustration can not be assuaged at the word of influencers.

My girls are now 9 and 6. I am actively grieving the toddler phase, when I could hold my aching body up on the handle of a pram or trike and still kid myself everything in my body was normal as we went about our day of rituals at the hectic speed that two and three year olds default at. I miss feeling capable.

I am ageing. I’m currently 37 years old, but really, under a lifetime of wear and tear, how old is the body I live in? I’ve always wondered but no-one in a position to investigate this for me has ever bothered. But I’m using my walker more, having to admit that working is physically beyond me now and quietly grieve all the people I can never be.

I do not regret the person I am. Once, yes, but not now because this life, this body made me Mum to my daughters and I would trade them for nothing. But that doesn’t mean that to have been more able bodied wouldn’t have given me more choices, more paths to other opportunities it is simply not possible for me to consider in this life. I do not pretend that some of this isn’t down to the nurture I received growing up, as well as the nature of the body I was born into, but neither of these aspects change the person I am. 

In a different body, I could have been more confident and brave.

In a different body, I wouldn’t feel as if my daughters had outgrown me.

Not just in the way that all children become independent. I have worked hard to instill independence in my daughters from a young age, purely because I was not trusted to develop my own independence as a disabled child.

Except, my girls are able-bodied. They’re not me – and that is so hard, because I am my own, only example of how a child is raised. It just doesn’t fit for my girls, or represent what I want for them.

My girls have capacities and capabilities at 9 & 6 that I never did. They dance and climb and scoot and Gabby can even do the splits 2 different ways. They are so many versions of themselves that I was not given the time or space to even dream of. My mum did the best with the capacity and resources she had, which were a lot fewer than we have access to in this digital age, but I was never made to feel “big” or capable.

My two go about their lives in all these wonderful ways because I have given them the opportunity. It was always really important for me to do so, so that the gaps from my own childhood were filled. But I did not account for my own (perhaps inevitable) physical decline alongside it. Often, I feel relegated, watching on from the sidelines because I am not a physically active parent. There’s lots of things that wouldn’t be safe for me to attempt now on a restructured foot. And I am incredibly sad that no version of me, young or old will be in a position to try. Sad that my daughters will go on without me. I do not feel like a “fun” parent.

I had a very profound realisation about this, realising I was holding myself back from my children because so many versions of me were dealing with the sadness of being left behind. Not because anyone is doing anything wrong. Everyone, including me, is doing what’s right for themselves. But my place on the periphery is not where I want to be. I am going to share the discussion I had with Squidge via letter in a later post, because even though it sounds like I’m wallowing, my daughter’s empathy deserves its own recognition.

So this World Cerebral Palsy Day, I am saying that everything goes. Because it has to. Because the internet will not desist in telling me I am only disabled by my attitude. My sore, overworked but doggedly determined body not-so-respectfully disagrees – especially if you don’t live in the relevant body. You can be glad to be winning your battles on the daily and I will be glad for you – right up until the second you tell me I’m special or strong or worse, should thank God for my strength in this, frankly, God awful battle I maintain I never asked to be part of.

Cerebral palsy affects limbs, movement, sometimes speech. It also affects my children. It affects how we are able to relate to each other. It affects how many demands I have to make of them each day because the world is not really set up for any of these struggles.

But we with CP go on anyway. Not because of strength or determination, although I concede we have both in spades, it’s not through anything as important as choice.