Thank You For Being A Friend

You’re halfway across the world right now. You met a boy and moved halfway across the world to be happy together. The day you told me you were going, I smiled and hugged you goodbye, full of happiness for you for the adventures you would have that I’ve never been brave enough to dream of. But as we waved you off on the coach that day, I burst into tears and said to Kev “She’s my best friend and I’m never going to see her again.”

You haven’t come home yet, but you’ve also refused to fade from my life as I feared you would. Not through any fault of your own of course, your priority has to be the life you’re building now in the sunshine. I feared it would be down to me, never managing to keep up with time differences, struggling to think of constantly positive things to say, even when they existed, because I was struggling so much. I didn’t want to blacken your new life by being honest about the extent of my struggles, even though I knew you were one of few people on this earth I could share them with completely.

I struggle to do that with a lot of my able friends but you’ve never tried to advise me, like it could come from a place of knowing. Your face hasn’t ever contorted into nauseating sympathy. Instead, you’re the friend who I trust implicitly to say “That’s shit. Let me get you a drink.”

I so need that in my life. I need you. That true friend that normalises me because it’s never occurred to you to treat me any differently. Thank you.

Because of you, there are beautiful blooms here with me for Mother’s Day. From all the way across the world, you decided to celebrate my greatest achievement with me. Because you absolutely know that that is what Squidge is for me. You’re not obliged to value that in any way but you do because you know I give it my all.

These beautiful flowers will meet their inevitable end in my hands because I’m terrible at remembering to water them. But I know you know that about me. The fact you thought about me is enough to make me smile every time I walk past them. I like having a little bit of you back with me. The note that told me what an incredible mum you know me to be to my precious girl made me feel like you were stood next to me, chatting away. It made me happy.

So, even if I am inevitably rubbish at checking in, know that I love you. You are the best friend all this growing up gave me. You are, as I discovered yesterday the only woman besides his wife and mum that Kev has ever deemed worthy of buying dinner for. That is to say, we know how lucky we are to have you in our lives (and if he didn’t pay, he bloody well will when you’re back on these shores!)

I love you, darlin’ girl. Thank you for always being my friend from everywhere you are.

30 things I have learnt in 30 years of being me

Yesterday I turned 30 years old. I am officially a grown up. I have been always been afraid to age physically but this has harmed me emotionally too.

Last year, in a shopping mall cafe, I sat and wrote out a list of berations. I wrote myself out to be a hateful failure. For all my blessings, I was miserable, trapped in this body and more so, my head.

This year, entering a fresh new decade of living, I am proud to report that with the much needed help of the Mental Health Team I have very much separated that negative voice and now I recognise how and when it tries to sneak in and beat me back down. I have made a conscious choice not to let it win.

These are the 30 lessons I have been so lucky to learn in the last year:

  1. I am a dedicated mum

  2. I am determined

  3. I want the best for myself

  4. I am stubborn

  5. I cannot read minds

  6. The Little Monster cannot be defeated, only managed

  7. My body is not my own just yet but we can learn to muddle along together

  8. Every facet of my identity is my own. They do not need explaining to anyone but me.

  9. The truth can be a friend. I will not spare people’s feelings anymore

  10. I needn’t be embarrassed by my disability on account of people’s lack of understanding

  11. To ask for help is empowering and positive

  12. Decisions taken as a result of my limitations must always be in my best interest

  13. Self care is vital – and allowed

  14. It is OK not to be OK

15. It is vital to be able to say I’m not OK. I have a wonderful husband who wants to listen.

16. I do not need to hide this disability away because I am “lucky enough to walk”. It is mine to own.

17. Not everything is my responsibility. Disability is something society should be accepting of outright. I shall tell it as it is and it should be and no more. My energy is too precious to waste.

18. When I ache, it’s time to stop and be kind.

19. Sleep is precious. Fuck it, napping is empowering.

20. I have brilliant friends who fully support my tendency to drop in and out of their lives, energy dependent. I wish it was different but thank you for loving me regardless.

21. Pain does not have to be endured. Painkillers are acceptable and often necessary

22. I do not need to wage war with a body that struggles anymore. This is a body that has done amazing things for me and made me forever part of the best little person I know.

23. Comparison really is the thief of joy. People are living their own lives to the best of their capabilities.

24. It is no-one’s fault my capabilities have their limits. Least of all mine.

25. I hate to say it but my mum was right…. comfortable shoes and a bag worn on two shoulders is the way forward. Sorry I doubted you Mum!

26. I know this body best. There is very little point in being bamboozled by the medical terms and still not getting the help I need. No more struggling on, I will continue placing the right people and treatment around me.

27. There is pride and achievement to be found in the smallest things. Put my own hair up? Great. Put 3 loads of washing away? Awesome.

28. I will not feel ashamed for repeatedly hitting rock bottom. It is my right to cry and say this life is too hard. Because it is. But I will always fight on for my little family.

29. I will not lie. I will explain each struggle to my beautiful girl so that she understands why Mummy must cry sometimes. She will not be afraid of tears. She will know they are healing sometimes and that Mummy fights on.

30. I will always remember my place in my little family with a girl who loves me and a husband who supports and cares for me in ways I have never afforded myself so that I can enjoy our life together. I will not forget how lucky I am to belong to you both.

Here’s to a very successful 30s!

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.