I’ve decided it’s time for some cold, hard truth. Apologies if that is not what you came here for. But so many things have struck me about this life I’m living recently and I’ve decided it’s best not to hide from them anymore and instead live my best life in the face of the truth.
Fact 1 – Squidge is the very best thing about my life. The first 27 years were aimless in comparison to everything being Squidge’s mummy gives me. She is the reason I am me.
Fact 2 – Having cerebral palsy is the very worst thing about being me. It is too unpredictable and professionally abandoned.
Having cerebral palsy is not fair.
There, I said it. This life is unfair.
Having CP is nobody’s choice. Not being aware of just how damn hard it is to be alive with this condition (dear world: please note, I do not have a disease) is the most unfair thing I have ever experienced. I did not ask for it, I am not “grateful” for it (saw this quote online and nearly had an anuerysm!) and up until the point I met my daughter, I would have given anything to be anybody else and be “normal”. Squidge only changed my mind because I will not allow her to grow up to be ashamed of who she is. So I must try not to be either. But I hate it, make no mistake about that. No apology either. It’s OK to say that this sucks.
I can’t do this either
I am not brave.
Dear God universe, please stop being so bloody condescending.
I do not need to see you do the sympathetic head tilt and tell me how brave I am and how you “couldn’t do” what I do. I smile, but really, I want to punch you in the face. Have you stopped and wondered why I do what I do? If I didn’t, I may as well curl up and die! I’m not down for that. This is the only life I get. All I’m doing is living. There is no other choice. And you know what? You could do what I do, because if you were me, you’d have no damn choice.
Don’t call me an inspiration
I really, really hate it when people call me an inspiration.
I am many things. I am a daughter, a sister, an aunt, a wife, a mum, a friend. But I am not an inspiration.
The whole point of DisABLEd Mummy is to enable disabled parents, i.e. people that had the exact same simple dream as me, to not feel so damn alone as they raise their awesome humans. Because that journey is hard enough for anyone, without the challenges of a disability thrown in with no damn let up.
In talking to a fellow CP warrior (this term I like because you know what, we wake up to fight the latest unknown every damn day) I’ve come to realise that lauding disabled people as inspirations is just a way for the rest of the world to make themselves more comfortable around our misfortunes. I can understand that, really I can. But please God, don’t patronise me with it. I’m just a person, getting on with the life I’ve built in spite of it all.
Credit: Stella Young
This is not happening to you
Your advice is not required. Tea and empathy are welcome.
I cannot count the number of times people have said to me “It could be worse”. Yes. Yes it could. I know that because I am living it. But I refuse to be ashamed of the fact that it could be a million times better too. It should be better. People with CP deserve better, damnit. I won’t apologise for being enraged by the outrageous.
There should be services out there that can at least guess how much my body will have altered in 10 years and know how to manage my pain.
There should have been doctors able to tell me how hard pregnancy and birth would be. Social Services should have been able to help me when I asked instead of looking the other way and pretending I didn’t ask. It’s 2018, the notion of a disabled mother should not be confusing.
There should be ways available to take care of my ever aching muscles that don’t cost me 20% of my take home pay to do privately. It shouldn’t be the case that this is my only option.
The Government shouldn’t be penalising those with no hope of improved health or mobility. The disability benefits I get are spent on clinicians the NHS won’t give me access to…. will that become a luxury? Is me working myself to exhaustion to maintain a part time job a luxury too? Will it mean that I’m miraculously not disabled anymore?
The NHS shouldn’t be ignoring those with CP simply because they’re older than 16. (I mean, really, what are all those children meant to do besides grow up?)
Google informs me that 1 in 400 births results in CP. 775,000 babies (including my own Squidgelet) were born in the UK in 2016. Which means 1,900+ babies were born in 2016 who will grow up to face the frustration and uncertainty that I am. God forbid they are forgotten as I have been.
I don’t like talking to my able-bodied friends or my family about how hard my life is becoming. I know they are all full of love for me, as I am for them, but I can’t expect them to understand. Hell, I say the same to Kev, but as my husband, he sees it as his duty to try and share this pain with me. But it remains difficult, even with the person I love most in the world because it’s happening to me.
The aches, the pains, the frustrations, the limitations – they happen to me. Please, don’t try and pretend you know what this is like. Don’t try to make our lives a competition. I’m dealing with enough as it is.
Two of my oldest friends do have CP and thankfully, with them, I can be real. We can cry and swear together and feel hopeless without judgement. It shouldn’t be this way, but I’m done with pretending that it isn’t. It’s time to be real.