Squidge, the Big Sister

Amongst the hardest few months we have ever lived, we can finally share the best news.

Ever since the day Squidge was born, I have known I wanted to do it again, to savour every moment and not be so scared this time. I have agonised many times and for so long over whether it is possible. But Mother Nature has stepped in.

We discovered I was pregnant 2 days after Kev’s mum went into hospital in December , some wonderful news to hang on to in the start of some hard times for us all. A beautiful surprise.

Baby #2 is due in August. Our lives are finally taking the best direction, because we know we’re going to be centred around our beautiful little family, that we’re going to be complete. Nothing else has to matter now.

Squidge has been fantastic the whole way through. She found out the news very early, because she wanted to know what kind of doctor a midwife was when I went to book in and I was too tired to lie quick enough! She helped us share the news with our families over Christmas, and even announced the “baby in Mummy’s tummy” when we bumped into friends at the hospital.

She has been so attentive and involved, asking every morning whether I have taken my vitamins and “fed the baby”. She tells me to be gentle when I move, because of the baby.

The first trimester has flown in all the stress of all the family hospital stays. I have waited for the niggles of SPD that were rooted in my hips at just 8 weeks along the first time around. Nothing. I am so relieved. I have been exhausted and ravenous, but am very proud of how I have coped.

With our first scan, we finally announced to everyone, although the news appears to have been a slow trickle this time because I haven’t been able to remember who knows and who doesn’t!

But look at this face, she’s so excited. She talks to my belly, giving kisses and whispering to “the baby”. I ask her every day whether I’m growing a baby brother or a sister. She seems quite set on a baby sister, but we will have to wait and see a few weeks more. I’ve loved being able to involve her and we talk about “our baby” a lot. We’re going to let her choose things for the baby, and make sure that the baby provides Big Sister with lots of toys and treats.

But in the midst of all our chaos, it has been so strange. We know there’s a baby, we’re thrilled there’s a baby. I even think I can feel movements a bit like bubbles popping. But it doesn’t seem real to Kev and I yet, however much we talk about it. We’re going to have another beautiful baby.

Squidge came home from nursery the other day with the first picture she has ever drawn of our family. I almost cried with love and pride.

Because while it seems so strange to the parents, to our little girl, our baby is already just what is, part of who we are. Already, we are all so keen to be a family of 4. What an adventure this will be.

Love Letter to my Little One vol. 3

Oh beautiful girl,

We are going through so much that I forget you are just 3 years old. Times have been tough for you & I, the world has barely stopped for 2 months now and shows no signs of slowing down. Nanny was unexpectedly in hospital and she and Granddad are such a huge part of helping us help you become the amazing young lady you are. It was hard. It was scary. We missed her lots. But Nanny came home for Christmas, we all took a little breath and hoped that her recovery would be kind and that 2020 would allow us to get back to normal.

But the world had other ideas and I’m so sorry for all that has meant for you Squidge. Your daddy, never ill a day in his life it seems, ended up in hospital for 3 long weeks like Nanny and I don’t think the shock has left us yet.

I’ve never had to be without your daddy, not in our 10 years together. I’ve never had to take care of you by myself. I’ve never had to worry about Daddy being poorly, or hospital visits or keeping on top of clean clothes and meals and work so that we have money.

I have never been so tired, so worried. Those weeks went on forever.

It has been one of the hardest times of my life and I am so sorry for every way it has affected you. More than I can even count, but this is why I had to get it all out.

Because in all of this, little one, you have been my rock. You shouldn’t need to be that at just 3 years old and for that, I am sorry. But I need you to know, I could not have faced any of it without you, much less survived it all. I genuinely think had I been on my own, your lightweight mother would have been in the pub every night, drinking wine to soothe her soul to sleep.

But you have been the motivation I needed. In all this time, when you must have been so confused and worried, you have never asked too much of me.

When you have seen me cry, you have wrapped your little arms tight around my neck and said: “Don’t cry Mummy. No more tears. I love you so much. Daddy will be better soon.”

You have shown empathy beyond your years as I have cradled you and let your warmth and love fill me up.

And if my tears still have not dried, you have wiped them away and hugged me again, as tight as you can squeeze, because you know squeezes make me happy.

You have become more independent. You will get yourself a yoghurt from the fridge, or ask to put the cheese inside your own sandwich. You’ve used your potty training step to climb safely in and out the bath so I son’t have to lift you and you have bravely shouted “Tangles!” when I brush your hair rather than crying through the knots.

You have blown your Daddy kisses every night to his hospital bed and inquisitively asked to see his healing “owwies” regularly so you know where to be gentle. You give the gentlest hugs and kisses and always say “I will not hurt you Daddy.”

It has been so hard. But as ever, you have taken everything in your stride. I feel horrifically guilty, because I haven’t had the time or energy to take you out and do something fun in weeks. You don’t know how important it has been to Mummy to just sit on the floor and do Peppa Pig puzzles with you, or watch you fall in love with the Aristocats for the millionth time from under our “snuggles” blanket. I’m sorry I haven’t been able to give you more when you deserve the world.

Daddy came home this week and I was so relieved to have him back with us, so that the house didn’t have to feel so empty and so quiet, that I stupidly forgot that he is not recovered yet, that there is still a lot for you and me to do.

You are a wonderful little nurse, diligently helping Daddy count out his medication, or taking your Paw Patrol pups to his bed so you can play together. This is clearly the thing that you have missed the most and your Daddy strives to feel better every day so he can make you smile. THe first thing you did when Daddy came home was climb into bed beside him with the Thomas the Tank Engine story book we bough you on your birthday, which you have read to Mummy every night since Daddy has been in hospital. My heart was so happy that day, so happy to see you together and you so determined to be gentle, but close.

You got very cross with me the other day when I told you a nurse would be coming to check on Daddy whilst you would be at nursery. You wanted to know exactly how the nurse was going to take care of Daddy’s owwies and clearly felt like this warranted a day off so you could make sure she was doing it right. It made me laugh and I haven’t laughed much, so thank you. But it is important to give you back some routine, you have been through so much, you need your play time.

I know Mummy has not been the most patient of mummies recently and beautiful girl, I am sorry. I try to apologise every time and explain. But i’ve said the word “stressed” now so much, you often don’t need me to explain now. You are such a kind-hearted girl, and you often apologise to me, your head flopped lovingly on my shoulder. I feel pride and sadness in equal measure. Proud because you don’t want me to be sad, sad because you think you’re the cause.

My wonderful Squidge, you are too young to understand a lot, and yet you seem to understand so much. And so, this letter is here for you when you are older, to help you understand that in all the stress and pain and worry and tiredness, all of which you are hopefully too young to remember, you were what pulled me through. My little girl, with her heart of gold, her endless patence and the best squeezes in the world.

Truth be told, on the days you have not been here and I have found myself alone, I have felt lost without you. It has felt like I have lost an arm and I haven’t felt that way since I dropped you off to nursery that first time when you were such a tiny baby at eight months old. I miss you terribly and only make sense of myself in all of this madness when you are back here with me.

We will not be going through all this forever. When Daddy is better, we have lots of plans to spoil you rotten, because you deserve it so very, very much.

Just, thank you. Thank you for being here, for being my wonderful, loving daughter. Thank you for being you.

All my love for you my darlin’.

Mummy xx

My physical disabilities do not equal intellectual ones

The title of this post feels uncomfortably like a public service announcement. A few experiences these last few weeks tell me that, sadly, that’s exactly what is needed.

It took me my whole 30 years to accept that I must help myself in any way that will make living with cerebral palsy easier.

I am between physiotherapists at the moment and my muscles are feeling the strain. I booked an appointment at a clinic in the same building where Squidge enjoys gymnastics so I left her with her dad (and my shoes) in the gymnasium and went up to the appointment.

I was asked to explain my reasons for seeking regular physio and cited the cerebral palsy.

I explained that I needed someone to physically help me stretch because my husband couldn’t bear the brunt alongside every day life.

“Can you not wear shoes? Where are your shoes.”

“My daughter’s playing downstairs with her dad.” I explained.

“You have a daughter?!”

The surprise was not kept from her voice. It hurt.

“Yes…” I said, nodding slowly.

“It’s just, I’ve only met one woman with cerebral palsy but she couldn’t speak or care for herself.”

I felt a familiar dread creep over me. The need for people out there to see every disabled person as the same. Except, I didn’t expect to have to explain to a professional the range of cerebral palsy, the different types.

She also asked about my studies. I don’t know why it seemed relevant, but she was polite enough so I genuinely believe she was simply curious. But I have never appreciated being an object of curiousity in this world. It’s just not necessary. After all, I’d been astute enough to make the appointment for myself, to recognise that physiotherapy is important to my maintenance. When I reported that I’m currently studying for my degree, another look of surprise came over her face as she congratulated me.

I do think she was trying to be sincere, but it is so easy to stray into patronising. And I wasn’t there to be patronised, just wanted someone to help me stretch. But she didn’t seem to understand when I explained that very little movement would translate to my left side. The response over and over was:

“Well, try!”

It was at that point that I absolutely knew this was not the professional to help me. I intend to make other plans.


It also took me my full 30 years to admit that a walker would help with my mobility and confidence. I still hate that I am in a place where I need to use it, but I certainly appreciate its presence more and more. I very rarely go further than the end of my street for some milk without conceding I will need the walker for support.

This weekend, I was walking to the library in town, my laptop bag strapped into the seat of the walker so that I had all my study material. There’s a pelican crossing halfway down the hill. I will always stop and wait for “the green man”. In her vulnerability, I fully expect Squidge to stop and wait. In recognising my own vulnerability as a disabled woman, I now appreciate that I must lead by example and do the same. I must not endanger myself. I have been reminding myself that a walker is a sign of such vulnerabilities. Anybody that sees me can rightly assume I have some difficulties.

So imagine my surprise when a driver with a learner plate on stopped at the lights, honked his horn at me and impatiently waved me across.

I stood fast. Firstly, as someone who is an anxious driver anyway, I would never insist that another driver, or indeed a pedestrian should move on my say so, much less as a learner! Out on the road, your life is in your own hands, you make your own decisions. So I made my own choice, knowing that the crossing signals backed me up and it wasn’t safe to go.

I wondered, what made this learner driver think that his course of action was helpful, or even appropriate?

The only conclusion I was able to draw was a sad one. Seeing a young woman with a walker didn’t signal to him that I might in fact have difficulties crossing the road in good time before the signals. What it in fact signalled to him, was that I did not know how or when to cross without his indication. But his action was not driven by concern for a vulnerable woman, it was driven by his own impatience and the assumption he knew better than I did, even though he clearly didn’t both to check the pedestrian signals I governed my movements by.

I struggle to walk. That realisation is hard enough. As I get older, I am more and more things I am not comfortable with. I am slower, more tired, more dependent. But one thing I am not as a result of having cerebral palsy, is intelletually disabled. Some CP warriors do have these disabilities, but some is not all. We are not all the same, our challenges are different.

I am perfectly able to be outside my home alone, to cross the road safely at a time of my choosing, to attract a marriage partner and to make the decision to have children. It is no-one’s place but mine to make any other assumption.

It really does concern me that in this day and age, any of my life actions have the power to confound and confuse others.

I was a person before I acquired any of my disabilities. I so wish that people felt more able to see the person I am before making judgements about what I am able to do.

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 rosé 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.

Medical fatigue

I don’t know if it’s an actual thing but I bet any disabled person would recognise the frustration and the impact of medical fatigue. That is to say, having your life run by a never ending cycle of appointments meant to maintain you.

I have spoken a lot about the impact that the deterioration of my condition is having on my mental health. I feel fragile often, overwhelmed regularly and cheated pretty much always. But I choose to own my feelings. I will not deny them because I finally agree that I am important.

But a new battle is apparent.

I cannot live my life how I, as a person, a mother want to live. I am not afforded that level of control.

Because even when I am able to stop working, maybe have another child and cherish my family, I will always be beholden to an ever growing roster of appointments.

At the moment, I am still trying to maintain my hours at work because know, money’s useful. But actually at the moment, I’m averaging 3 hours a week on appointments, not even accounting for travelling in the first place. The two together is draining me.

Yesterday was podiatry to talk through my hip pain when walking. Didn’t get much from it really. So instead I need to go back to the Functional Electrostimulation clinic and see if they have anyone that can support me. (Their little box shocks my weak leg into pulling straight. Using the leg as it should be after 30 years is strange and pain is to be expected I’m told!)

Today is physio and then counselling. Both absolutely necessary, the former of which takes 6 hours because I have to get the train because I can’t safely drive the distance. This results in less time with Squidgelet cos I have to swap my days off to accommodate.

Then there’s massages which constitute my most peaceful hour of the week. I wish it could be more often.

I know they all have vital functions but my God, can there just stop being things I must do.

I’m starting to feel more like a condition than a person. That has a real emotional toll. And so round and round it goes.

Medical fatigue is real.

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.

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.