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

πŸŒ† moved cities (twice)

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

πŸ’ got engaged

πŸ‘° 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.

πŸ‘©β€πŸ’» 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.

πŸš„ 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.

πŸ‘Ά 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.

πŸš— 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.

πŸ‘¨β€πŸ‘©β€πŸ‘§ 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.

We Are The Champions

Full disclosure: I fucking adore Queen. The ability to time travel would put me front and centre at their Live Aid show. If you cannot comprehend this adoration, then I am not your kind of person right now. And that’s OK.

Full disclosure 2: This post was written by a thankful wife in a happy rosΓ© induced haze at the request of a deserving husband. I cannot be sorry about that.

This morning the dreaded brown DWP envelope arrived. It was due. In fact it was late so hardly a surprise, but oh how we dreaded the outcome.

# I’ve done my sentence, but committed no crime #

I tore at the envelope and under Kev’s watchful gaze, scanned for the words “cannot award”

Instead what I saw were the words “enhanced rate”.

Twice.

I have received the maximum award on both elements of the Personal Independence Payment for the maximum length of time.

*exhale*

It’s more than we could have hoped for. But even I know it’s not undeserved.

# We’ll keep on fighting til the end #

I didn’t fight. I didn’t have it in me. I couldn’t face the reality of my diminishing capabilities, especially for money. Even though we need it, it seemed so cheap and crass.

So Kev wrote the reality down for me, determined I should have a chance at what we needed to survive.

And they listened. I never could have expected that, the system is such a shambles. The relief is indescribable because right now, it isn’t real.

I no longer have to push myself to work. I can choose to devote myself to my family. I don’t have to feel guilty about forcing a financial burden onto my husband. I don’t have to push through chronic pain to make ends meet anymore.

For the first time in such a long time living with this condition, I have choices. That is everything.

And if you are suffering in yourself the way I have these last few months thanks to this travesty of a system, I beg you to hold on. If for no other reason than I know you bloody well deserve to.

Priorities vol. 2

Whenever I have been faced with needing to make changes, to practice acceptance of my changing capabilities, my wonderful, loyal, supportive husband has only ever asked one thing of me. “I’ll support you in whatever” he says. “You are living your life, you know best. But please, don’t make any decisions based on your emotions.”

Yesterday, after a very long day at work (all-day conference in the city), I fell over in the dark street having just got off my bus. I got up slowly from the ground and felt a familiar pain coarsing through my arm. I’m still not over my most recent bout of whiplash, so it feels like the aches, the pain and the limtations have been lingering for weeks. I called Kev, and asked him to come get me, as I was just at the end of the street. He raced down and as I saw him coming, I burst into tears. Because I knew I could now, that someone was here to understand.

We walked to the next corner and I lost my balance coming off the deep kerb. I screamed. Not because of pain. Kev caught me, I was fine. I screamed like a wounded animal. Because I feel more and more that I cannot be safe, that I am not allowed, I am not able to carry on with the threads of life I am trying (too) hard to hold onto. I fell over yesterday exactly at a point where I was allowing myself the thought “I am doing well. All these treatments are allowing me to keep up.”

I screamed because it felt like my body had heard the thought and just decided “Let’s remind her how wrong she is.”

Kev was worried that neighbours would come into the streets, wondering about the woman screaming in such pain. He tried to shush me. I stood in the road, clinging to him for my balance and sobbing. Sobbing about how unfair it is, how useless my body feels and how much I don’t want to live like this anymore.

I know the way I have to live cannot change. I grieve for that fact every day and I do not apologise for it. But sometimes, I am just too tired. Tiredness is the precise reason I was able to fall in the first place. I’m not sure it used to be and it makes me so sad.

The sound was awful. I knew it was me and yet to hear it, to have it be so desperate to escape from my chest and throat, it was like I was listening to somebody else. All I could see through the tears was the blur of the street lamps, and all I could hear was this awful sound. That poor woman, I thought, she sounds in so much pain.

Because it always changes. Part of my experience with disability and depression has always been, rightly or wrongly, that if I am depressed, I cannot be caught off guard when the depressing times or events come. It cannot impact me, they were expected. I don’t mind admitting it’s a horrible way to live. But that’s always been my rationale.

This weekend, I had what I call a peaceful moment. A realisation of true peace, calm and contentment. They are very rare to me. In fact, I cannot remember any outside of the 4 years Kev and I have been married. I’m sure this is not a true representation, but it does show what an amazing impact my husband has had on me as a person.

The first one was the day after our wedding. We’d booked a nice spa hotel for a mini-moon, to let us adjust to married life. Spas are ridiculously important to my physical maintainence and I remember just climbing into the warm jacuzzi. The sun was setting, sending beautiful red streaks across the sky as we looked out onto the Welsh hills. We held hands, our new wedding rings shining on our clasped fingers. There was nothing to do, no-one else to worry about. All we had to do was be.

The second was a weekend away around the first anniversary of my dad’s death, when work had been hectic and my grief heavy. It was to the city of St. David’s, which is in fact this beautiful little village. It was pouring down with rain pretty much the entire time. So all we did was walk between the hotel, the little chocolate shop and the pub with a roaring fire. It was as if the world couldn’t touch me there.

The third was the perfect day we had in Cuba, swimming with dolphins and eating lobster, drinking rum on a catarman as the sun set. An experience in a beautiful part of the world I could never have imagined I would get to see were it not for the husband so determined I deserved to see it.

The fourth was our first family holiday, where nothing mattered other than our little girl’s happiness.

The fifth was just this weekend. We went for a nice autumnal walk in one of our local parks, me wanting to crunch leaves underfoot, Squidge wanting to play in the park. There was no rushing, no clock watching. We went for hot chocolate at the cafΓ© and I looked at them both, my husband and daughter, and I was so peaceful, so content. Right in those moments, I had everything I need in the world.

And I think that’s why it hurt me to hear myself so distressed over a fall. Because I know it was because I was tired, a reult of wanting to work too hard. It is not my fault. It is not what matters most. Yet still, I get so absorbed in what people must think of me, all these shortcomings that make me so pitiful and abnormal. Except, I am slowly realising, those are not the opinions of others. It is me, projecting my own. And I don’t want to waste my precious energy on being so angry with myself. What use can it possibly be when I had that moment in the park, that wonderful moment of knowing I have everything I need?

My family is everything. They are what ground me and who make me feel whole. I refuse to care any longer about whether I am working hard enough, or how much longer I can work to put coffers in the pot. A job is not what I want. My family is. I would like nothing more than another baby and I am determined not to wear myself down working. I know too that Kev would adore another child. So much so, that he refuses to wrangle with himself as I do over the finances. “If it’s something we want” he says (he knows it is) “then we will manage.” I have spent a lot of time and energy arguing with him, but what for? To see if I can make him as worried as I have been? It’s useless. The two of us are too determined in our aim. And what a beautiful aim it is.

The idea of managing has always stuck in my throat, like it cannot be enough. But I don’t care anymore. Somewhere safe and warm to sleep, with food in our bellies and love for each other. That’s all we need and we have all of that. I don’t want to struggle anymore. I want walks in the park, at my own pace, not having to think about what the rest of the world needs from me. Because what I have to give is not for the rest of the world, it is for my family. It is for that poor broken woman whose screaming is still ringing in my ears.

My best friend

The loneliness of this life is real baby girl. I know a lot of mums feel this way, like they lose their identity a bit with their tiny human needing them more than anyone before.

Pause it there. It is so crucially important to me that you always know that I do not feel this way because I am a mum. Being your mum, Squidgelet, has been a transformation for me. You are my anchor, the sense of purpose I didn’t know I was missing before I met you.

My sense of identity has been eroded by CP. Fatigue is too fluffy a term for it. It just makes me think of damsels in distress, fanning their brow dramatically til the cavlry rocks up

You’re my cavalry Squidge.

When I was glancing wistfully at the well groomed mums at playgroup, wishing they’d be my friends, like I might be one of them (that is, capable of drinking gin AND holding a conversation circa 8pm) you snapped me out of it by wanting to build castles.

I feel so guilty. Like, all the time. It’s as though no matter what, I’ll never feel I’m good enough for you because I’m always so depleted.

This morning was a shouty one. God knows what next door thought of me as I tried to push you out into the rain. You were crying then but I just wanted to get to the doctors on time.

You walked so well. No complaints, so road aware, so helpful. I have so much love for you Squidgelet and this morning I didn’t show it. I’m sorry.

We’ve played all day. Soft play, gymnastics and even a sneaky chocolate biscuit in between for being such a rockstar – right down to nagging Mummy like your Granny used to, telling me to stand up straight to save my back ache.

I love so much chatting away to you as we make our inevitable trip to Morrison’s so you can push a little trolley. There are always so many people in the supermarket and I don’t need anyone but you. You make me laugh as we sing questions to each other or you burst out in a new rendition of Big Girls Don’t Cry. I played you Frankie Valli when you were in my tummy and I love so much that one of my loves stuck with you.

I am so proud that even at a time of your life when you’re wrangling with your own emotions, you always remember to look after me – holding my hand or picking up your toys so I don’t fall.

Being able to spend any time with you feeds my soul and brings me happiness I cannot put into words. It helps me feel right in a world where I just feel so overwhelmed and out of place. You give me that, just by existing. You amaze me.

Life is tough for Mummy right now which means it’s hard on you and Daddy too.

But more and more, I realise now, it doesn’t matter. Because whatever comes at us, you’ve already told me… “We’ll do it together”.

And that, darling girl, is truly all I need. Thank you.

“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.

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.