My little cheerleader

It feels so strange to say it, but this last week or so, I have been on top of the world. Tired, but accomplished and oh so proud.

Knowing that I struggle and knowing that I don’t want to hide forever, I have taught Squidgelet to say 2 phrases on demand:

“Take your time Mummy’

&

“Come on Mummy, you can do it!”

I love so much that she’s so willing to support me in this way because, whilst I confess I am easily overwhelmed, she remains the reason I do everything and her words calm and focus me so much.

We are home alone today and I was determined not to waste it slobbed out in front of Youtube. Despite how much the thought scared me, we got in the car and I drove. Somewhere new. And when I pulled perfectly into the space, Squidge declared: “Mummy did it!” I was so proud.

Today, for the first time ever, I took Squidgelet swimming on my own. She’s two-and-a-half now, with such amazing communication and empathy for her mummy. I have always been too scared, terrified I might fall.

But she listened to my every instruction, always looking back as she held my hand to make sure our small and steady steps on the slippery surface were keeping pace.

She splashed, she jumped, she kicked her powerful little legs and swam all on her own. It was almost as though, with her buoyancy vest on, she didn’t need me. But better than that, she wanted me there.

I struggle to pull myself up onto the side of the pool, but my beautiful girl pulled me the rest of the way by pulling my shoulders with all her might, so determined was she to push me in again.

I’ve never had so much fun!

I dreaded getting dressed again but kept my voice calm and we talked through every step together. I even managed to coax a hesitant Squidge into the showers. I have learnt everything is a matter of making time for it. No need to get annoyed. No rush.

And here is our #successselfie

My awesome little sidekick and me, all dressed.

I had some shopping to get so decided on lunch in Morrison’s 2 minutes away. Parked perfectly there too.

Squidge, very well rehydrated after swimming had an accident as I sat her in the trolley. Potty training is going really well so we’re at the stage of pants rather than nappies and we’re just starting to have dry days.

Related to the cerebral palsy I believe, I had bladder incontinence issues well into my teens that was resolved by medication in the end. I have never forgotten the shame or lengths I would go to to conceal the problem so I wouldn’t have to miss anything fun. I fully believe Squidge has the same excitable logic and I absolutely refuse to let her feel one iota of the shame I did. We carry 10 changes of clothes and handle everything with a “No worries.”

We got her changed and enjoyed lunch together

Pretty much as soon as this orange juice was consumed in one slurp, there was another accident. She waddled back to the toilets, but I praised her highly, remembering too well how uncomfortable it is to walk with soaked legs.

Quick wardrobe change and Squidge was back in the trolley, diligently ensuring all our purchases were well placed.

I adore her and didn’t care a jot when she admitted to “Poo!” as we were at the checkout. It’s much better to see the hilarity in heading back to the toilets for the third time in 2 hours and wondering how I hadn’t been questioned for shoplifting.

The freedom that my determination to show Squidge that there’s “No worries!” is immeasurable. It, and she, are doing me the world of good right now.

Mummy did it, Squidge!

I am too important

I fell over in the supermarket last week. It was not my fault. This I know – displays should not obstruct aisles to the point of injury.

And yet, as I sat on the floor recovering, flanked by 2 lovely strangers who stayed to check I could get up safely, familiar feelings crept in.

Embarrassment. Vulnerability. Shame.

The dull ache of whiplash and resultant stiff muscles ruled my weekend. I cried all weekend, so overwhelmed by misery.

I hate to feel useless. But I feel it more and more. My confidence, ever fragile, is destroyed by every fall. I am going out less and less. I can feel the independence I wrangled for creeping away from me, each of us withdrawing into ourselves. We’re separate again now, you see.

That’s not OK. I grieve every day. I was never allowed to recognise that process when I was younger. I was supposed to be grateful that I had legs that worked and that wasn’t worse. I have been haunted by “it could have been worse”.

I don’t try and deny that grief anymore. I think that by accepting it and letting myself say with the finesse of a child that it is unfair, I am saying it cannot overwhelm me.

Sometimes it still does, this weekend being a prime example. So overrun with emotions – shame and hatred among them – I was desperate to lash out at the body that fails me and punishes me in doing so. Rationally I knew it would achieve nothing, but I was so overrun with hatred for the body I can never turn away from or escape.

It gets so very lonely, being on the fringe of so many parts of society. I can be disabled… but I can walk; I can be a mum… but I walk funny. I’ve never been able to fit anyone’s view. And it has broken me. All I have ever wanted to do is fit.

But I will not. Denying my reality is causing me so much pain. I already have so much pain. I do not apologise when I say I cannot live like this anymore.

I cannot live with I can’t. All that makes me feel is that I can’t be society’s perception of what I ought to be. But I am learning that other people cannot validate what they haven’t come to understand.

I don’t want to waste away here, resenting the safe haven of my home. That is not enough for me. But I do need to feel safe. And so I have finally decided to invest in a walking aid. The thought even as I write that makes me shudder with the embarrassment teenage me felt so acutely when I rejected the option.

But it cannot serve my pride in this way any longer. If I stop living, Squidge misses out too and even if I have to accept a decline so young, I will never accept its effects on my darling girl.

So I’m going to safeguard my independence however I can and teach Squidge that all expressions of emotion are OK, are healthy if they are being processed.

I fully expect that one day she may not want to be seen with her mum and a walker and that’s OK. I have to deal with the disability whatever, so there will be nothing I can’t deal with in her honesty.

But for now, I choose to let this decision empower me. After all, if it helps me carry on, then that’s all that matters. A wonderful friend said to me today “It is not for all the time. Often, it is just a visual reference to inform others you need more time.” Disability is not the either/or scenario I have always imagined. We can work with it. I hope. It feels positive to feel even that.

I am making a choice. I am important. I will shout for what I need. I will teach my girl to shout too. We will muddle through. As Squidge would say (to)”getha”

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.

Facing Fears

The pain I have been in and how useless it has made me feel these last couple of weeks came to a head on Friday night. When Kev arrived home at 6pm to bathe Squidge and put her to bed, I couldn’t speak, sinking into my sadness.

As Squidge requested that “Daddy read” her bedtime story, I ran a hot, hot bath hoping my muscles might relax. I climbed in and burst into tears.

I fell into an exhausted sleep at some point that evening but even then… the tears and the sadness didn’t stop. In truth, I think I cried for 18 hours straight.

I think I was grieving. Grieving for the mum I wasn’t capable of being, for the support and experiences my beautiful girl couldn’t have because of me.

Having no choice but to accept that I will always be sore. Maybe not quite this much, but always some. That the levels of pain will always have some level of control on what I am able to do. And that didn’t seem like much at all.

We had a wedding reception to go to. But I couldn’t face it. Told Kev I couldn’t face the crowds, the small talk, the exhaustion and feeling like an eternal party pooper.

And Kev was as understanding as he could possibly be and told me that was fine. Said Squidge should go to his parents as planned and I should take care of me. But I just cried harder, I felt lost. If I wasn’t going to go, then I wanted to spend the weekend giving my time and energy to our little girl because the pain had let me fail her.

But Kev was right when he said I had no energy left to give, that to try when I was running on empty would be to everyone’s detriment. And I felt awful. Because more choices were being taken from me, because I couldn’t be the mum I so want to be.

Feeling like that though, how on earth was I supposed to go and have a nice, relaxing day to myself? When, not only would I be letting my daughter down, but also friends who were expecting me to celebrate their most special day with them? The prospect felt hollow and oh so lonely. I knew that if I was left alone, the horrible grieving tears had no chance of stopping. I didn’t know who to reach out to, because who can understand all the facets of this life?

The lessons of my Cognitive Behavioural Therapy course were also ringing loudly in my ears.

Face. Your. Fears.

Avoidance only offers temporary relief.

So, I took baby steps. My breathing wasn’t quite regular even when I got in the car with Kev, London bound. I didn’t know at that point whether I could talk myself into going to the reception. But it didn’t matter. I didn’t have to be alone.

And I went. I went into a room in a dress that made me feel pretty, in shoes that didn’t make me wince (Calla are literal lifesavers… I never thought shoes could make me happy) and I enjoyed the small talk, I enjoyed seeing so many happy people in one room. There was always a glass of Prosecco in my hand and it took hours of propping up the bar before my feet started to ache. I tried desperately not to pay attention to the time, to not bring myself down by feeling like a let down.

As it was, I admitted defeat just before 10pm – a solid effort for me. Kev was equally triumphant on my behalf and came back to the hotel with me without a word of complaint. I was a warm and happy drunk and felt accomplished with it.

I’d listened to the CBT advice and accomplished something for me, faced my fear of social situations, feeling like I couldn’t fit in a roomful of energetic happy people.

And I went to bed and slept for a good long time.

Exactly what I needed. Well done me.

What does it mean to be a grown up?

I am *gulp* 30 this spring.

I have always been someone that thought those 5-10 years older were the coolest and totally had their lives and identities figured out. As it is, I’m not even sure it’s cool to label someone as “cool” anymore. But the point is, when I was 7, I thought 11 year olds were the best. When I was 11, 15 year olds were all I could ever want to be. When I was 21, 25 year olds around me seemed to have picked out their careers, loving partners and beautiful houses. They knew what they were doing.

But as I’ve gotten older, I’ve realised that age is simply that. The wisdom that the older generation informed us came with age is distinctly lacking with my fellow millennials. We’re all frantically paddling underwater, as it were. No-one has a bloody clue.

As far as my own identity goes, that’s always been a bit of a muddle too. I was very forunate to meet my husband at a very young age, to know I’d met someone that so wanted to understand everything I am, to support me in discovering everything I could be. Being with Kev has given me experiences I couldn’t have dreamt of had I not left my hometown. Before the big 30, I have a collection of Very Important Papers – our marriage certificate, Squidge’s birth certificate, the titles to our home and my driving licence. In just those few, I realise I have more than some people ever do.

Equally however, some of those people have something I am still grappling with: self assurance.

I have always wanted to be one of those millennial lifestyle bloggers; you know the type – work hard, play hard, has had a favourite wine picked out since their early 20’s that they can drink by the gallon on a Saturday night, chased up with flaming Sambuccas as they happily get to know a dozen new people in a heaving bar, probably somewhere in London where said wine costs £15 a glass.

I waste so much of my waning energy berating myself for not being that person. Except, what with the journey of self acceptance I am on thanks to the support of the Mental Health team, I have to realise I cannot hope to be who I am not. I have to realise that I am OK.

Admittedly, I feel very out of place sometimes, like I haven’t managed to learn things about myself that other people have by my age. I don’t wear make up for example, because at 29 years old, I physically can’t apply it. I don’t have a signature lip culour or a go to perfume, or a protective face I can paint on to make myself feel safe or beautiful. I am just me.

I can’t style my hair. This one I am looking to tackle because I’d like to look a little different. But I really don’t think I could be bothered to waste time on ever-changing make-up trends when I could in fact be sleeping. Sleep is very important to me, to my abilities and my sanity. My Sleepstar eye mask has been one of the best purchases I’ve made so far this year. No flaming Sambuccas over here!

I think it is safe to say I am not living the life of my peers. I work from home more and more now, to manage my need for sleep and increasing hospital appointments for physical pains and mental struggles. There are no grand plans for travelling or holidays. Instead, there are savings to enable us to renovate our house into our forever home, for us to eventually become a one income family. I feel such a responsibility to contribute to all of these things before I am unable to contribute at all.

To me, being an adult is about having a pension plan, pension contribtions, shoes that don’t make me want to cry in pain. My sense of fun has waned in their favour as my energies and capabilities have left me. But I feel positive, for the first time in a long, long time. The Mental Health courses, in the first instances are allowing me to identify what the struggles are and what strategies are best employed to confront them.

I suppose, being a grown up is accepting that not being like everybody else is a good thing, that uniqueness should be appreciated and celebrated. Knowing that I don’t have to like gin, or avocado, or hot yoga (genuinely do not understand any of these concepts. I do like (cheap, sweet) rosé and sitting around surfing eBay and enjoying terrible 80’s films. (Grease 2 is on in the backgound as I write this and people, I’m not even sorry. It’s so awful that it’s brilliant). That to take advice late is better than taking none at all. (I’ve only just started using skin cream this year and I’ve switched from regular to camomile tea to better manage my anxiety.)

It’s being able to utilise good advice and routines. I recently began using Headspace as a tool to calm me down through guided meditation and breathing exercises. I can’t recommend it enough. It gives me somewhere to go when I need to destress, something I am doing to help myself. And I feel the benefits in my sleep alone.

There is a long way to go on this journey, as there is for all of us. But if there’s one thing we all need, it is hope. Hopefully some kind of aceptance comes along with that eventually, but for now, it feels good to be hopeful. I think I am ready to be a grown up.

Just in time right?

Facing up to the reality of stress

Months ago, I took myself to the GP and told her that I was overwhelmed and sad. She referred me to the Mental Health team who have in turn, given me the opportunity to attend some Stress Controll and Fulfilment classes.

I went to the very first session of the Stress Control Group yesterday. I was anxious about it all day, nerves writhing in my tummy. I couldn’t concentrate and got very little work done. So a stress course was essentially stressing me out, making me feel guilty for not applying myself to my paid work. Ironic isn’t it? But I walked to the venue, I walked through the door. Three people in the queue ahead of me asked to be directed to the same place, so I didn’t even need to feel daft and just walking into that room felt like such a big achievement. I was after all, there to help myself.

There were so many people in that room. It was amazing. You always think that you are the only one, when in fact, stress is as common as can be, causing so many related issues for us all, like constant physical pains. Who knew, right?

I felt quite panicky just being sat there and could feel myself losing my sense of “being in the room”, spiralling off into my own panic. I wanted to cry for all the struggling people they talked about in the case studies, I wanted to get up and run. It was hard to listen, though I laughed to myself when the course leader said exactly that – that concentration is always poor when we’re stressed and anxious. But she also kept saying that I was in the right place and it made me feel braver, safer.

I can’t pretend I listened well for the whole two hours because I know I didn’t. But some snippets really resonated with me.

We all have stress in our lives.

None of us can change what has gone before, so why waste emotional energy overthinking what you cannot change? What’s ridiculous is, I of course, know this, but hearing someone, a professional, say it out loud, the little monster that lives in my ear unclenched a little bit and stopped dead. Because it’s so true. You have to go on. And in spite of everything I have told myself I am not capable of, the one thing I know I am capable of is going on – nothing has killed me yet.

They told us that stress feeds itself on all your other stressors. So if you spend a long time feeling stressed and overwhelmed, chances are the thing that stressed you this week is not the thing that set off the stress of last week. You have to find ways of cutting the little monster off. And hopefully, that’s what these courses will enable me to do, to find happiness in the little things and to feel real pride for all my achievements.

And here’s my first one:

Our homework was to draw out our “vicious circle of stress” – all the things that stress us and how they manage to keep themselves going, so that we could try and work out ways of starving the stress. Now, I didn’t get that far, because honestly, my circle was far too busy to be a circle. A list of stressors came pouring out of me. And when I read it back, I realised that for years now, I have been dealing with a lot!

I haven’t necessarily dealt with these things well, these are things I am looking to learn, to help myself. But nevertheless, I am constantly dealing with a lot, even outside the standard “marriage, child, house” that it’s likely everyone else in that room was dealing with. I have pain, I have limitations, which in themselves need a lot of work on acceptance before the anger wins. I have uni, I have long-distance relationships to maintain and a lot of memories to process that have hindered my sense of independence and self-confidence.

And suddenly, I felt proud of myself for being able to carry on. I’m going to give myself less of a hard time. I never feel proud of myself. Me, myself & I have pretty much always struggled to get on, so honestly, this was a great start.

The mantra of the stress control course is something like “Face your fears. Be more active. Watch what you drink.”

Avoidance is a huge crutch of mine and the course already recognises that avoidance does work to control stress in the shor term. But avoiding your fears just builds them up into a more deep rooted problem longer-term and to be honest, I think therein lie a lot of my problems. They’ve gone unfaced for too long and have become a horrible, stubborn part of me that I hate, but that really has quite a grip on me.

So I’m trying to take the mantra to heart already, even without realising it.

The day before the course, I walked Squidge to playgroup. She needs constant bribing to get in the pram now because she’d rather walk, but we did OK.

She was patient, she listened (she even collected the Deep Heat lotion for me that morning when I was on the floor complaining that my “neck ow!” She handed me the container saying “Mummy medicine neck ow!” I was so blummin’ touched. She went into playgroup without a backward glance when previously she’s refused to go in without clinging to me. Well done Squidge, my big, brave, grown up girl.

Enjoying her soup before Wednesday’s playdate

I pottered round town, buying all the bits we needed and then I went back for me. She wolfed down some soup and went for a nap in preparation for a park playdate we had with a friend. But she wasn’t ready for me to wake her an hour later and howled like I was beating her whenever I made moves to get her dressed. She clung to me, sobbing, only comforted when I rocked her like I did when she was newborn. I felt awful, that my baby was so upset, that I couldn’t dress her, that we’d be late, what my friend would think.

As it was, we were only ten minutes late and my friend couldn’t have been kinder – and Squidge couldn’t have been more delightful, cooing over her baby boy and guzzling her babyccino like a pro.

Face your fears – I didn’t allow myself to cry off and let a friend down, or let myself feel terrible for doing so, like I didn’t deserve friends. I told myself (and Squidge!) that she was getting dressed because I knew we’d (both!) appreciate the experience much more when we were there.

Be more active – Two walking trips to town and back. Well done me!

Watch what you drink – I got a 12 bottle box of wine at cost price from work for Christmas, so I’m not gonna lie, I have been caning the rosé (which for a lightweight like me means 1x large glass, so only just topping my 14 units/week (maybe?) I’m probably not drinking to medical excess even now, but I know it’s still more than I really should. So yesterday, I had a small one.

See? Wins all round!

And today, I met up with another friend and her little girl at mine & Squidge’s favourite soft play and then they came up to play at the playground by our house for some outdoor time. They ran off to the basketball court together to run about and when they came back out, they were holding hands like the best of friends. My heart felt so huge with love in that second, I felt so happy.

Playing with her lovely friend on the “tee-taw” today – and absolutely not looking at Mummy’s camera!

The lovely mobile hairdresser came round too to check how I’d gotten on with the ponytail tuition and would you believe – I actually did it! Even with my weak hand, I got my hair up higher than I ever have before, so I have the skills there now. Just more practise and then I can learn a messy bun to go with my messy ponytail. (So relieved these are in fashion because these are what comes naturally to my wonky hands too!)

I am very proud of me. Because in these last 3 days, I have done a lot to benefit myself, which in the end can only mean the best of all things for Squidge. A little less avoidance from now on. Let’s see what the best of me looks like!