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 café 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.

“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.

“Mummy, I’m alright!”

This is Freddie. Freddie is the most loved Fox there ever was.

Freddie came into Squidge’s life when she was just a few weeks old, my own best friend introducing my baby girl to her own best friend. I love that. I love that Squidge loves someone else so much.

He comes with her everywhere at the moment. He came with us to the playground opposite our house. She pushed him lovingly back and forth on the swing until, inevitably “Freddie glide!” (Slide, of course!)

Squidge has always been so confident physically, very rarely is she willing to accept help. And I love that confidence, I want her to have it always.

But because she was so determined that beloved Freddie should enjoy the experience too and she would not let him go, she lost her previously confident footing on the suspended stepping stones.

I know every parent experiences the horror of slow motion. I saw her fall before she did and cursed my body for not reacting in time as she sobbed in shock.

I bundled her into my arms and checked her over, horror and tears coarsing through me. I had never seen her actually hurt herself before. I called Kev instinctively as I soothed her, convinced we’d be going to A&E.

As it rang, I asked Squidge where she hurt. She’d fallen forwards about three feet and I was terrified she’d say “head” or worse, nothing at all because I’d allowed her to be so damaged she couldn’t remember.

“Chiiiiin!” She wailed. I personally have split my own chin open twice so was terrified to look where she pointed. But there wasn’t so much as a graze. The sobbing subsided (from Squidge at least!) and Kev, thank God, was calm.

“I can’t even hear her crying.”

“She is!” I insisted as she wriggled out of my arms.

“What’s she doing right now?”

As I remained a tearful, guilty wreck on the floor, I dared to look up. And not only had our beautiful, brave, confident girl climbed back up onto the slide; when she saw me looking, she called out reassuringly “Mummy, I’m alright.”

And so Squidge and Freddie played on until she could be tempted away with an offer of tea and an episode of “Money” (aka Tipping Point) and I was amazed and humbled by the utter resilience in someone so small.

The guilt made my stomach wrench as my baby cried but that baby, she consoled me. Never have I been so reassured of the good job I am doing as a parent.

Mummy sees you’re alright Squidge. I think you’ve got this, baby one.

2019 – The Year of Self Care

So we’ve ambled into yet another new year. I won’t insult you with the salutation “Happy New Year” because honestly, I know for a lot of people, it isn’t. We put so much damn pressure on ourselves to make changes, do better, and is it really worth the emotional burden?

This year, I have decided not.

I have made resolutions, don’t get me wrong. With a view to being able to work less (because I ache, so much, so often) I want to make it a habit to save as much as I can, to make smart choices and not be wasteful. But that sentiment doesn’t just apply to money. It’s so absolutely true of energy too. Energy it turns out, is the most precious (read: lacking) of all my resources and I have wasted so much of it (even in years where I was so much less hindered by my physical state) wrangling with myself, being so angry at my failures or inabilities.

But it’s such a waste. To be so constantly exhausted makes me angry. To be so angry and embittered exhausts me. And round it goes. And I have to make the choice to break the cycle.

I have battled with negative self thought all my life. Mostly, I don’t like to be me. And it’s OK to say that. This existence is a battle and I don’t have to be ashamed of that because I’m still here, I haven’t given up. I’m too damn stubborn to give up, even when it feels like I should, just for the rest.

I don’t pretend I can just flick a switch, or that the nasty little voice in my ear will just be gone. It will take work. But I have chosen to accept that negative thoughts will happen, as they do to us all. I just need to be able to balance them with positive ones too. I think I need to hear myself say that I am doing well, to give myself chance to believe it.

And so far this year, I am doing OK. I have arranged play dates, I have spoken with friends and family. I’ve sat and made practical decisions like a portable screen riser so my poor neck doesn’t have to ache quite as much when I’m out of the house writing essays.

I even paid for a lovely hairdresser to come and show me how to do a ponytail. And what’s so daft is that I was so embarrassed to do it. I’m nearly 30, with awkward hands that just don’t know how to do the simplest things with my own hair. But maybe that’s not the fault of the hands. No-one ever showed me, because…. I don’t know, it was too hard? And how can I hope to know what I have never been shown? So I have taken that step. The lovely lady was probably 10 years younger than me, but she didn’t judge me for a second. I did, getting frustrated with myself when my hands wouldn’t follow her simple instructions.

But she saw that in me and was so kind, arranged to come back and show me the next step in short bursts. And I’m fortunate that messy ponytails are in, because that’s what we’ve got. I finally managed some semblance of a ponytail, all by myself, and mixed in with the embarrassment was a tinge of pride I am determined to hold on to. I’m going to push myself and I’m going to learn 1 way, 2 ways, maybe even 3 ways to do my own hair, so that I might look a tiny bit different for the first time in forever, to make me feel good. Why on earth shouldn’t I ask for help in doing that, if it will make me happy?

This will be the year of investing in me, of giving myself a good talking to. So it won’t just be “You didn’t bother to do x, y or z today Jo”, it will be countered with “Yes, but today, I needed to rest/do nothing”. It’s OK to take care. No-one else will do it for me.

And that’s OK too. I like to feel in control, of feeling like I know how to get the best out of this year.

I really hope you do too. I have no doubt that you deserve it.

Today, I am my own hero

What you probably don’t know about living with cerebral palsy is I am constantly robbed of choices. If I have to get up and go to work (the bills won’t pay themselves) on the morning when the screaming pain in my hips says I won’t walk without agony today, then I can’t see that friend I’ve missed for months. I can’t play with Immy. I can’t go buy the milk. I am constantly robbed of my hard won independence and it’s simply not fair. It’s actually damn frightening.

But today, I can say for the very first time in my life, I am my own damn hero.

I have been blessed with a kind, helpful and inquisitive daughter who never questions why it takes me more than one go to do pretty much anything. She has made everything possible for me.

Yesterday I was limping everywhere, terrified I’d have to let down my dearest friend… who incidentally understand this life more than anyone else I know. I was so angry the choice might be taken from me. But we made it.

And today, I’m home alone. It’s all on me which isn’t normally the case. I was so worried. Immy knew, so she slept in til 9:30 to make this day easier on me than yesterday.

I’ve driven to the supermarket, I’ve carried the bags in one hand and held Immy’s hand proudly in the other. I’ve cleaned, I’ve tidied, I’ve cooked… all things I have to stop and check for niggling aches or pains that say it’s too much, that I’m not capable. They haven’t come.

I bathed Immy by myself. A job I avoid because I’m terrified I’m a danger, that I can’t protect her. I washed her hair (a job I NEVER do) and then I sat on the toilet seat with her wrapped up in my lap, brushed her hair and her teeth and got her ready for bed. She read 5 story books to me and flopped her head down on me, stroking my arm and whispering “Awww Mummy” before she took herself up to bed.

Today, I have been nothing but Mummy. I haven’t had to struggle through this day like all the others.

This is the day I’ve wanted to live since the day she was born. To just be Mummy.

Still so full of pride

I am currently full of a lot of mum guilt.

I feel like I am not giving the Squidgelet any time at the moment. I’ve spent my days off either working on my uni essay (submitted 3 weeks ahead of time to compensate for our holiday in 2 weeks) or ill and therefore avoiding her.

And germs. Let’s not forget the germs.

Week before last I had norovirus, so the in-laws came and rescued Squidgelet before I could infect her. I woke the poor love up with my vomiting in the bathroom next to her bedroom at 6am. It’s hard to console the concerned calls of “Mumma? Mummy?!” between retching. I was better in time for my big sister’s wedding and Squidge had a blast, running around, dancing to Baby Shark and eating her bodyweight in cake,

But last week, I had physio, which is miles away, very expensive and therefore cannot be missed. It takes nearly a whole day. I recently changed my days at work with good intentions and then realised my physiotherapist is only available on a day I’ve agreed to work. Now, I only go every 8 weeks (see, expensive!) so my boss is not bothered by an infrequent swap but it does mean a day less with my girl every 8 weeks.

And now, just in time for my very first Friday off with Squidge, I’ve caught someone’s cold. I am an absolute germophobe and am enraged by ill people coming into the office. Work from home you selfish [insert favourite swear word here]. So instead, we’re £45 out of pocket sending Squidge to nursery for the day so I can concentrate on sweating out the lurgy in time for the weekend.

Mum guilt sucks.

I feel terrible about going on holiday even. We’re finally going to Cuba – the honeymoon destination Kev picked out for us 3 years ago that was scuppered by Squidge’s very presence in my belly and the threat of the Zika virus. I am really looking forward to it, as it is to be our last “grown up” holiday before we give in to ten years of Butlins and theme parks. Yes, I’m a terrible mother who’s leaving my baby behind. But I’m being very measured about that of course. Not. I’ve reiterated to another of my big sisters that I want her and her partner to raise Squidge alongside their daughter if the plane crashes out of the sky.

Happy holiday everyone!


Mummy madness aside, today, Facebook memories threw up this perfect little gem from one whole year ago.

I never knew pride like it. She’d been cruising and holding our hands from about 8 or 9 months old, but we were just playing on the bedroom floor and she got up and she just did it, like she was made for it. Her confidence (unlike my immune system it seems) has gone from strength to strength.

Squidge really is flourishing. We have a playground on the opposite side of our road and I’ve been bundling my gorgeous girl up in the big warm, winter coat from last year that she’s grown in to and we’ve been kicking and crunching the autumn leaves, I’ve been listening to her shriek with delight as she runs around shouting “Ready! Steady! Go!” at the top of her little lungs. She is so “‘appy!” (That’s our current favourite Squidge-ism!)

She’s been really getting to grips with her alphabet, throwing her alphabet bricks around the lounge when the mood takes her, or calming handing them to you one by one and more often than not, correctly declaring the letter on it. (My favourite is “Ah-oh-woo!” – W!) She did the whole thing flawlessly the other day – Kev was staggered.

And so, while I sit in a million layers, sniffling in front of the fire and feeling sorry for myself, I can take absolute pride in how my little Squidgelet is coming on in the world. And maybe the guilt can lessen a bit because this one is her own person and she is doing just fine. So it’s OK to take care of me too – I’ll be back crunching leaves in no time!

My Squidge, My Sunshine

So, it’s 7:38pm. Squidge took herself off to bed without a fight at 7:02pm. Winning. It’s midweek, so these are my 2 days at home with her and Kev’s working late both nights. Which means Mummy has to step up.

And honestly, Mummy’s not been doing so well recently. A very dark and heavy cloud has been taking me over. It’s so hard to explain anxiety, but it makes the smallest things the very worst things that could happen. It means you understand logic, but disregard it because the fear is all consuming.

I made the decision to take myself to the doctor and say that it was getting too much to have my head always full with worry. The doctor was very kind. She told me that I shouldn’t tear myself down because of the cerebral palsy and that, with or without it, all almost 2 year olds have the potential to be little psychopaths that put mummies on the edge. But she saw my anxiety (the anxiety that said I should just cancel the appointment because if Squidge wouldn’t put her shoes on, then I was going to be late, and what sort of mother is late? I know the answer is all of us, but I just couldn’t feel it at the time.) She is going to refer me to the Mental Health wellbeing team, which feels like a positive step. I hope I can learn to take care of me too. I don’t want to feel sad, or like my life is happening around me without me taking part.

Kev leaves late because he’s away late, and when we go to get Squidge from her cot and ask her if she would like a banana and yoghurt for breakfast she responds enthusiastically: “Ite! Ite!” Ice maybe? I ask her if she’ll sit on my lap to bum shuffle downstairs or if she’ll walk down on her own. Confidently, she says “Own” and counts to 10 flawlessly as she comes down. Yes, shameless mummy bragging, Kev couldn’t believe what he was hearing! When I put on nursery rhyme Youtube videos for her and listen to her sing along, I realise “Ite” “Ite” was in fact “I like to ite ite ite iples and baneyeneyes!” from Apples & Bananas. Quickly run upstairs and declare our child is a genius before returning to parenting for the day.

But, in the vein of taking care of myself, we’ve agreed that Squidge should join the local playgroup for a couple of hours on one of my days off, so that I get the chance to rest. (And, the way my back is feeling after today, get more regular massages?!) felt like such a failure when I talked it through with Kev, but he didn’t bat an eye, said it was a good idea. And I know it is. She’ll get to spend time with local kids as well as her day nursery. But my God, Mum Guilt really does seep into every pore.

I took her for the visit today. We were ridiculously early, so we say on the pavement outside, me in a dress that thanks to Storm Ali was allowing the whole damn town to see my underwear at the same time! It’s funny the things you learn not to care about. We played peekaboo and Squidge laughed her wonderful laugh. It’s addictive.

We went in and she was shy to begin with, knackering me out by wanting to be lifted and carried to be close to me (awww, but – my back!) But 10 minutes in, she was scoffing rice krispies from the sensory tray and trying on glasses in the play-pretend opticians, telling me that they go on your “iiiiiiii’s!” and that she looked like a “little baby duuuude!” (I take a lot of pleasure in teaching her daft phrases!)

I know she’s going to be fine.

We shared a shortbread from Greggs as a treat and I walked it off by going to collect my parcel from the post office. (Christmas shopping is nearly done people!)

Mum Guilt snuck into my ear again when I realised I hadn’t taken her to the playground like I promised. Made a mental note to take her after her nap to the one across the road. Make an appointment at the hairdressers for fringe trim (I will never ever ever touch Squidge’s hair myself… CP means shaky hands!) Make it late in the hope that the Little Miss will nap.

Take her home and she makes a happy mess of some chunky soup and after a onesie pitstop goes for her nap bang on schedule. Don’t know what this kid’s on, but it’s working. She’s been so good, lieing back across my lap to help me change her nappies, pushing her arms and legs skillfully into her clothes to help me dress her. She’s been playing peekaboo, singing out her nursery rhymes, offering me cuddles and kisses and lovingly calling: “Daddy, wherearrrooo?” before answering herself with “Daddy vork!” (See, genius!)

It’s tipping it down by the time she wakes up from her nap (still bang on time!) and she screams at me when I try and put the rain cover on, much like she did when I tried to put her shoes on. So there will be no trip to the park today. Mum guilt reminds me that the park is always first to go and I feel guilty about never doing anything with her. I have picked up a leaflet from the library though and she’ll soon be old enough for the next phase of classes, so I have some ideas.

She’s a drowned rat by the time I get her to the hairdressers in her socks and no raincover. I passed a lady on the street with a look in her eye that I was so ready for if she dared say anything. I never do say anything. I know I should, because no-one know your struggles unless you say. But she never said anything, thank goodness and Squidge was free to end up with a Mummy-esque sloping fringe because she kept batting the poor hairdresser away. Never mind, at least she can see again!

Curse myself when I realise I forgot to buy any veg and tell myself the corner shop will have it. What is it with corner shops having impossibly high steps and ridiculously heavy doors? I struggle on my own for a good 3 minutes before a lovely lady offers to hold the door. I do wonder about people sometimes, it’s not like no-one else could see me. It’s also a horribly inaccessible shop to boot, I’ll make sure I have my Iceland list next time, I’m normally so diligent about these things.

They have no veg that Squidge’ll eat. “Oh no…. what shall we eat?”

Quick as a flash (she must have seen them on the shelf somewhere!) “Beans!”

“Oh you clever girl, of course!”

She helps me make a cup of tea for us both (hers is of course, decaf!) while our dinner cooks and she dries off in her new onesie. It’s miles too big and she keeps asking me to roll it up love her, but she looks so cute!)

Now that Squidge can feed herself, mealtimes are enjoyable, because I can sit and eat with her and it’s a social occassion. She asks for “help” as soon as she needs it and always tells me when she’s getting up.

We play on the floor together. She’s upturned her alphabet bricks so we see what each of them is when we put them back in their tray. She’s so funny, not grasping that they’re all jumbled and she keeps telling me what the next letter should be. Clever girl.

We run her bath and she washes all the body parts she’s learnt from Head Shoulders Knees and Toes (and more besides) with her big sponge while we sing the Bath song (to the tune of Baby Shark, because what else is there for parents?)

I know Squidge is done when she decides to start putting the sponge and her ducks away and my God, on her tiptopes she can reach the shelf they belong on from the bath. She’s definitely going to be tall like her daddy.

We spend time saying “Bye-bye bubbles!” because it’s only proper and we put her nappy and onesie on to a Youtube video of lullabies in the clouds that she slept so soundly to as a newborn. Squidge is not the least bit impressed when I tell her this, and keeps shouting in the direction of the Google Home “OK Guggle!” because no doubt she wants to watch Baby Shark one more time to round it up to an even million for the day. But thankfully, we don’t have a Guggle Home so Mummy’s safe.

She climbs the stairs to bed without complaint and switches on her lullaby night light herself. She only cries (and what a cry!) when she realises Freddie Fox is not waiting for her in his rightful place in the cot. Freddie came in Squidge’s first ever parcel the week she was born from my best friend. I love that my best friend introduced Squidge her best friend. It’s quite beautiful.

I planned to fold mountains of washing before Kev gets home, but considering how low I’ve felt this week, really beginning to doubt myself in all areas of my life, I thought it really important to come say that

Today has been a good day.