Happy Cerebral Palsy Awareness Month

No, it’s OK… you don’t actually have to be happy about it. This month, I do not celebrate cerebral palsy because the notion is ridiculous. I celebrate the determination of those I cherish as friends, of myself to live a good life in spite of it all. It’s not easy… It’s never bloody easy. But everything I have is mine. And I am embracing the Month for the first time ever to begin, with a full heart, the lessons I am charged with teaching my little girl about (in)equality, diversity, struggles, acceptance and self love.

I would swap my spine, my hips, my legs in a heartbeat. I am not ashamed of that and whole-heartedly believe there is no one alive with the right to chastise me or tell me I should believe otherwise.

You see, the untold trials of cerebral palsy may be taking me over long before I gave permission but it is not all I am.

This is Kev. My husband. The person that holds me when all I can do is sob and hate every inch of my ruined muscles. Kev who tells me I amaze him because I haven’t allowed myself to drown in these tears in 30 years. Because I stubbornly insist on carrying on.

He is the man that told me there was nothing I couldn’t do, nothing I couldn’t be, if I’d just let myself believe I could do it.

He is the reason I ever left my hometown. The reason I made home be somewhere new.

He is the reason I ever got behind the wheel of a car, the reason I kept going for 7 long years before that little pink licence was in my hand.

He is the reason I am only 2 years away from graduating with a university degree all of my own. I am the reason I started 8 years after all of my friends, but he is the reason I ever took that first step. Because he knew I could when I didn’t.

He is the reason I am a mother. The most sacred of all of my identities.

Mummy to this one. The most precious girl in the world.

This is Immy Squidgelet. 2 years old now and every inch herself. Funny, bright, helpful, inquisitive, loving, sweet… stroppy like her mum.

I never knew I could love someone so completely. That I could craft and meet part of me and think she was the best person ever. This little girl took part of me I never knew I had to spare and she made the best little human out of it, as if just to show me what I really can do. She amazes me every day. I still cannot believe I belong to someone so wonderful. I still look over at Kev and say “I’m her mummy. She’s mine!” The pride I feel whenever I get to say “my daughter”.

This little girl taught me why I must love myself. I am not there yet but she shows me why I must. If I cannot learn to accept the things that make me different then I cannot reasonably expect her to either and that’s just not going to work. I will not have my daughter so negatively affected by something she hasn’t asked for.

She is my reason for fighting on. There are days upon days where I just want to slump on the floor and give up and this one…. she need only come to me and say “Cuggle Mummy” and I have everything to live for. I will not let the part of me I didn’t ask for affect the part of me I am proudest of.

And so believe me when I tell you, I am very Aware of Cerebral Palsy Every. Damn. Month. But it aside, I can be proud of myself. I cannot hope for new body parts and so I must appreciate that I do in fact, have everything I need.

Immy and Kev…. you will never, ever know how proud and grateful this CP warrior is to belong to you both. I thank whoever is up there every day that I have you both and for giving me somewhere to belong. For showing me that CP is not all I am. For not letting me be alone with this. I love you both endlessly.

2 thoughts on “Happy Cerebral Palsy Awareness Month

  1. Thank you for putting this out there. It is really encouraging to find another mom out there with CP determined to make it work. I am 22 weeks pregnant, and reading this is just what I needed today.

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    • I cannot tell you how amazing it is to know there are other CP mums out there… I honestly thought I was the only one! I guess so far we ARE the information out there (I found nothing either and I honestly never expected that in the 21st Century so from that perspective it’s been pretty lonely. Please get in touch if you ever need an ear!

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