Happy 2020 – 10 years in review

Another year has rung in. Everyone on social media is doing the #10yearchallenge to contrast (and hopefully celebrate) the decade gone by.

But it’s more poignant for me. At the end of the month, (January 30th to be exact) it will be 10 full years since, a bit worse for wear, I met a man outside my favourite nightclub. We didn’t know it then, but I would become this man’s wife and I would become the mother of his children.

In the last 10 years, I have hit so many milestones, so many I never expected to, because I just didn’t believe I could.

But that’s OK, because Kev did.
In the last 10 years, I have

fallen in love

With a wonderful man that loves me too, when I never thought it could be possible

🏠 moved out of my family home

🌆 moved cities (twice)

I hate moving. I’m very glad to call South Wales my adopted home now.

💍 got engaged

👰 got married
It will be our 5th wedding anniversary this September. I have absolutely no idea where that time went, but am so pleased to report we are still very much where we belong. Together.

👩‍💻 started my OU degree

This is one of the things I am proudest of. I started my six year course 4 weeks into married life, because I’d finally run out of excuses as to why I couldn’t, and so I knew I had to try. This is the one thing that is simply for me, and I am on course to graduate next year. I don’t know how the time has gone so fast, but I love it so much.

gone to Disneyworld

Here I learned that if you’re sat in a wheelchair (because walking hurts when you’re 3 months pregnant and have CP to contend with) most of the employees assume you’re deaf and mute and just talk over you! It made me feel so sad.

🚄 gone to Paris & the Moulin Rouge!
I have wanted to go to Paris since I was young, after falling in love with the film Moulin Rouge. I finally made it there with my best friend in the world when I was 5 months pregnant and snuck Squidge some prosecco during the show. Not gonna lie, she loved it – and so did I! A total bucket list weekend and I’m so glad I had a friend that was determined I would live it – even if it meant her pushing me in a wheelchair up the hideous inclines of Parisian hills.

👶 met Squidge and finally understood what I am for 😍
What can I say? After the trauma of our birth story, this little girl is my greatest gift.

🏠 bought our forever home
Not going to lie, in places it is a shambles. But like I said, we’re never moving again without a lottery win, so we’re determined to spend our lives making it our own little peace of heaven. I love having somewhere to feel safe that is all mine. I never thought it would happen and credit one incredibly hard working husband that I am incredibly proud of.

🚗 got my driving licence after 7 years
Hardest won fight of my life I think. I can’t say I enjoy driving and I am not confident and even a year later only go where I have to. But that doesn’t have to matter does it? The point is, I’ve given myself choices, because someone believed in me enough that I indeed proved I can.

🏝 gone to Cuba and swam with dolphins
I’d recommend Cuba as a holiday destination to anyone. I have the beaches at sunset as my background on my work laptop for when I need a bit of peace. I was so scared to leave Squidge for the first time, but I swear, that island was paradise, and in contrast to Disney, I couldn’t believe how attentive the locals were to my CP. They didn’t know what it was. They didn’t ask. They just looked me in the face and asked if I wanted their hand. It was wonderful to be treated like a person, to feel the beautiful sun on my skin. If you ever get the opportunity to go, go! You won’t regret it.

👨‍👩‍👧 took Squidge on her first family holiday

A week in Devon contrasted against Cuba somewhat. But it was Squidge’s first holiday and it was honestly heaven. We were just a family. Time was a concept that went out the window and I felt so peaceful. Squidge took the lead on our activities and we showered her with attention and it was bliss. It taught me that my family is the centre of everything for me, and put me at peace with the idea that work will have to end soon, because my body demands it. I have so many much more enjoyable days at home to look forward to.

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I know it probably feels like I am bragging horrendously. Maybe I am. I apologise, that’s not the intention.

2019 has been a year of self care for me. Investing in CBT courses and private therapy because I did not feel at peace with myself, despite the enormous blessing of my family. It has been hard not to slip back into the lingering darkness that is depression. It has been hard to fight against the voice in my head, which I believe implictly to be myself, which seems so angry at me.

But it has been the most important battle. Highlights like the ones listed above show me how much I have achieved, when there was a time in my youth I honestly believed I wasn’t capable of achieving anything. It is so important for me to recognise the things I have done well, to recognise the invaluable support I have had from my family, whom I love so much.

More than anything though, as I took a deep breath on New Year’s Eve, I realised that I am worthy of each of these blessings. Some are made of good fortune and luck, but others I have seriously had to work at. I deserve happiness. I do. Because what is life without it?

Wasted. And in this body, with the challenges I have to face year in and year out, I really don’t have that much left to waste. And life itself will never stop challenging any of us will it? So why fight it? Why spend so much time feeling drained for battling against the things I cannot control? My energy is too precious, time is too damn precious.

2020 I shall strive to make the most of them both.

I sincerely hope you do too.

Happy New Year.

Priorities

Earlier this month, we took Squidgelet away for a week, our first family holiday, to a caravan park in Newquay. It was one of the best weeks of my life. We were determined not to be constrained by time or routine. We were going to do whatever we wanted, whenever we wanted. It was bliss. Squidge loved having her own room in the caravan. The light switch was right next to her bed and she was determined that it would always be day time, so she could go and play. We told her to knock on our door each morning and we’d talk about what she wanted to do that day.

The first morning, she knocked on the door: “Mummy! Daddy! I want tea!” As we looked up from under the duvet, she was holding her swim nappies in her hands, having swiped them from her suitcase. “We go swimming.”

We all laughed, it was so nice letting Squidge take the lead, having all the fun she wanted to. She has become very matter of fact and straight talking, which I just love.

We spent our days at the beach or park, riding trains, going to the on-site soft play or pool, always going to bed via the penny falls. Squidge even dunked the 1000 point skeeball where Kev and I failed.

She’d go to sleep and we’d sit on the outside steps listening to the sounds of people glad to be on holiday, talking about how happy we’d made our precious girl that day.

Coming back was hard because I had my PIP Assessment to dread. I’m not going to elaborate yet because this stressful journey is not over for me or millions of others. Suffice to say, I despise that I am made to fight so hard just to live.

Emotionally it’s a terrible position to be put in. As ever though, Kev was my saviour. We went straight out, back to the hotel we had our wedding reception in 4 years ago.

This was how we celebrated our wedding anniversary whilst we were away:

But we’d always said we’d go back to the hotel each anniversary, to our favourite corner of the bar. Our spot.

He let me soothe myself with cocktails with daft names then I went off for a massage I so needed. Then off to the lovely Italian restaurant we ate in the night before our wedding. Two bottles of rose down and I’m laughing, my head hurts less from always being so busy.

I honestly thought I might cry after the assessment, through relief or pent up anger. I was truly surprised when I didn’t. Instead, I was taken aback when I suffered tension headaches and dizziness for the rest of the week. I honestly think it was all the stress begging to be released.

I didn’t enjoy returning to work either. I know no-one does after a holiday but oh, I just wanted to be with my girl, to lose the concept of time and stress, to enjoy.

So whilst financially it may not be time, I think I have shown myself I am done with working. In comparison to my family and feelings of peace, my ability to financially contribute means so little. I really don’t care to sustain it at the cost of my own health and happiness, when once I was sure I had to.

But my priority now is this wonderful family. It’s a relief to know that for once, all of me is in agreement. Life is for living after all.

“Look Mummy, who’s that?”

Yesterday, I walked with Squidgelet to the end of our street and purchased a walker.

*exhale*

My teenage self is disgusted with me. Scoffs that I have given up.

My 2 year old daughter didn’t bat an eye.

That morning she walked halfway to the library for Rhymetime holding onto the pram. All I had to do was tell her where to hold.

“No let go of pram” she promised me faithfully. There was no question that she would. She understands she needs to listen.

I showed her where to hold the walker. It was exactly the same. I was so proud of her.

I text Kev to say it had been bought. He told me he was proud of me for making such a huge step for my independence even if my pride was hurt and my 14 year old self sulking indefinitely.

“I know it’s a good thing…” I typed, “…but I feel so defeated and defined by it and it breaks my heart.”

It felt unnatural to rely on it, even if I know it’s not for all the time. It felt, rightly or wrongly, like my capabilities came in second after this unsightly lump of metal.

I started to cry, as softly as I could. I couldn’t help it. I was grieving, letting my teenage self let out her disappointment. After all, I never knew this is where I’d be at 30 years old. I don’t know what I could have expected when the medical profession and support services stayed tellingly silent. But I never thought being 30 would look quite like this.

Squidgelet frowned when she saw me wipe my eyes. “Mummy ow?”

“No darling. Mummy not ow. Mummy sad. What would you like to watch? Wiggles?”

She pondered it for a moment. “No Wiggles. Photos.”

All our photos slideshow on our TV.

Looking at me, photo after photo, she asked “Look Mummy, who’s that?”

With her beautiful big heart, Squidgelet distracted me from my tears.

Mummy proud, Squidgelet. Mummy so proud of you.

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”