I See You, Mummy

This is the most loving thing my daughter could say. For one reason or another, be they my physical reasons or my emotional and mental reasons, I have spent much of my life feeling invisible. Invisible, inadequate and never enough. But through my daughter’s innocent and loving eyes, I know I have a place and a purpose.

When I was in cognitive behaviour therapy at the start of last year, my counsellor recommended that I write letters to myself, addressing my sadness and my struggles. I call the series “Dear Me, Who Is”. There are instalments like “tired”, “trying hard”, “part of a family” and it helps me speak kindly to myself, as if I were another person. I have spent much of my life wishing to be another person, but being able to separate the “selves” that I have battled against allows me the chance to examine and ponder without quite such harsh levels of criticism. In fact, the letters often serve as nice reminders that I am, even in times of stress, doing well.

I don’t know why, but I write them with a photo of me attached. I think it was because I began to notice in the memories that all photos portray when I was sad, when the world felt dark. I could read what my smiles were hiding, when my eyes were dull. Equally, I could be reminded of the times that I was genuinely happy, happy to be me. Again, not looking at myself with a critical eye, but with empathy and kindness.

Kev likes to put all of our photos onto a loop on our TV. Squidge loves to see them too, to remember the places she has been, the fun she has had and how big she has grown. Some of them I struggle to look at for the reasons I have outlined above, because I know what I was feeling in each image and I am acutely aware that I haven’t always been very good at sharing those feelings, so Kev might not know how sad it makes me to revisit certain memories.

In times of lockdown, almost into my third trimester of my second pregnancy, I am increasingly feeling inadequate and not enough. This time last year, that would have had me turning in on myself, to an ugly degree. I would have blamed myself, I would have hated myself. I have long been my own worst enemy

Yet, yesterday, as I watched the photos flick through on our TV screen, I felt different. I don’t know why, but I was so relieved that I did.

This photo was taken on our 4th wedding anniversary, during our first family to Newquy in September 2019. There was a lovely view, so we braved the fierce wind and walked outside to a bench to admire the sea, something that always makes me feel peaceful.

What I used to see

The fact that my hair was a mess. That I have hands that can’t get my hair out of the way so I don’t alays have to look a state. I really used to get annoyed at myself

What I see now

The fact that the wind was whipping our hair – mine & Squidge’s! I can feel the force and chill of it on my face and it reminds me that we were happy that day. We were together, we were laughing and smiling at the wind being out of control. That’s what you want your mum to be isn’t it? Laughing and smiling. Not caring about her hair!

This photo was taken on another day of our Newquay holiday. I didn’t think I’d actually seen it before, but when I saw it yesterday, I didn’t think about how much I hate my nose, or how static my hair was. I was glad my mind didn’t go straight to the negative.

What I see now

I can see my family, my world, smiling. We’re all together, we’re having fun. My eyes aren’t hiding any sadness, they’re happy, glad not to have to think of anything other than the fun we will have.

I’m actually impressed I managed to get my hair up this day. I tried not to care too much about how I looked when we were on holiday, because we were going to have fun together whatever. But I did try and practice the instructions a lovely hairdresser had given my awkward hands for putting up a ponytail and in this photo, I can see I did a good job, given that it’s hard for me to do.

Even my skin looks pretty clear. I don’t look like the tired, frightened little girl I am so used to seeing. I look like a happy mum

This photo was taken when Kev & I were on holiday together in Cuba in 2018. It took a lot for us to get there. We were originally supposed to go there on honeymoon in June 2016, but the Zika outbreak and Squidge’s imminent arrival meant that it was off and in fact, it took Kev being made redundant from a job he worked so hard at to provide for us all in order for us to be able to go again.

I hadn’t wanted to leave Squidge, almost 2 at the time, but once there, it was the most enjoyable, peaceful week of my life.

What I used to see

Again, I used to look at this and think “Why am I such a state? Why couldn’t I have done my hair? Or gone on a bikini diet for the holiday? God, I’m so fat and lazy and I always use my CP as a barrier to taking care of my appearance! So it’s my own fault I can’t look better.”

What I see now

Me, at peace. I’m happy. That smile is real. I’m wearing one of my favourite dresses and actually, I look in pretty good shape for someone that spent their entire lives convinced their legs, incapable of working as others do, were repulsive. My hair might be frizzy, but God, there wasn’t any stopping that in Cuban humidity, why would I waste precious holiday time caring about that? I am a tired, hard-working mum, I deserved to enjoy this holiday. This was a holiday my wonderful husband planned for years and I am so happy to be there with him. I am a happy wife and I’l go home to Squidge a happy mum.

I like who I am in this picture. I have grown. I am not a frightened little girl. I am a calm and happy woman. I can feel sun on my skin. I am having fun with the person I love most in the world. I deserve this. I will savour it.

These photos have helped me see myself as my daughter and my husband see me. I have never really been able to do that before. The hatred inside of me for the person I thought I was has always been so sure that they are the ones who are blinkered, that they see me wrong.

Amongst all the struggles, the darkness and the self-hatred, I am slowly able to see who I truly am. I may not be this person every day, because sadly, sans lottery win, not every day can be a holiday, but I see who I really am to the people I love. I see the woman I have become. I feel how happy she was in these moments when the little girl that came before her never thought there were days like this out there to be lived.

I see that I will be OK.

I see that I am enough.

I see you, Mummy.

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.

The Dangers of “That’s life!”

Today is World Mental Health Day. When we have to recognise a potentially fragile and neglected part of ourselves or someone we love, or barely know at all, and promise to do better at nurturing and protecting ourselves because we agree that we deserve it.

This is the exact thing I swore to work on this year. To be honest and raw and to let myself feel my own strength and feel deserving of each happiness.

It can be so hard knowing who to trust with the everchanging state of our mental health, especially when we’re not to grips with it ourselves.

Even now, all these months later, I can barely get past the recognition of “I don’t feel well.”

They are just 4 words. And yet they are just 2 words out there that I have heard with alarming frequency recently. Two words that can keep me from ever being honest with you, when I might most need your help. They stop me trusting you.

“That’s life.”

Many things Are. Life.

Births. Marital squabbles. Your Amazon parcel being delivered 10 doors down. The car breaking down.

All normal things I accept are happening to all of us every day.

But please, I beg you, never brush off anybody’s concerns with a “That’s life.”

Because if I am feeling brave enough to share with you the worries and fear that keep me from sleeping, or feeling like a fully functioning human, then that fear, it is consuming me. I am losing a battle with darkness and I cannot feel the ground under my feet. I am lost and frightened. I am reaching out to you, for a hand to steady me.

It may be life. But in uttering a word of my concerns, I am acknowledging I cannot cope alone. “That’s life” dismisses the nerve I had to work up and worse, it leaves me alone still in that darkness.

Rain makes puddles in my kitchen. That’s life.

Except I’m now not safe in my own home. Which means now that nowhere feels safe and I live in constant fear of slipping or falling, because so long as it’s wet outside, it can’t be fixed.

CP has finally claimed my ability to work. I accept I am made too tired to carry on. That’s life.

Except without my salary, I don’t know if we’ll be able to fix the broken bathroom floor I worry about tripping on, or fixing our patched up electrics.

Worse, without my salary, I don’t know if we’ll be able to afford a much longed for second child.

That’s life right?

Except being a mother has given me the only peace this world, this body has allowed me. It is the only way I hav been able to make sense of myself or stand the pain I live with everyday.

If I cannot do it again, I will be heartbroken and though he’ll never say, so will the man I love more than anything.

It may be life, but it’s so unbearably hard. I would never presume to understand the life any one person lives. We will have experiences in common by virtue of human nature.

But it is so dangerous to presume that this life, anybody’s life is bearable everyday. It is not simply made so because “That’s life.”

Mummy’s medicine

Pain is a huge part of ageing with cerebral palsy. Whilst its omnipresence is unavoidable, the levels of pain I wake up with every day are unpredictable and draining.

The impact on my emotional wellbeing is getting larger every day.

Yesterday I woke up with very painful tension in my neck and shoulders. Movement was too hard and I was reduced to slumping on the sofa.

Kev climbed in behind me and began to massage the tension. I cried out in pain.

When she was younger and Squidge’s saw that, she pushed Kev away, shouting “No Daddy!”

Yesterday however, Squidge saw and heard my pain and climbed into my lap. She wrapped her arms around my neck. “Ohhh!” she sang empathetically.

But I struggled to hold her as Kev continued apply the necessary pressure to my stubborn muscles.

“Oww!” I whimpered, unable to hold it in.

Squidge pressed her hand tenderly to my face, stroking my cheek as she asked: “You OK Mummy?”

My heart swelled as she worked so gently to distract and soothe me. I didn’t want her to think that her daddy was hurting me so encouraged her to climb into Kev’s lap and feel the tension for herself.

She knew what the solid lump was as soon as Kev helped her feel it with her little hands. “Mummy ow!”

“Yes baby. And Daddy is helping take the ow away for Mummy. It is Mummy’s medicine but Mummy is not very brave, so Mummy say ow.”

“Do you want to help Daddy give Mummy her medicine?”

“Yes.” she said, hands poised in the same position as Kev’s and bless her, she started pushing gently on the lumps.

Kev’s pressure increased, needing to use his elbows. So Squidge climbed down.

“Ow!” I cried out loudly.

But Squidge frowned, telling me sternly: “No Mummy. No ow. Mummy’s medicine not ow.”

We laughed together. Our wonderful girl had listened so well. She knows that medicines exist to make us better. Therefore, we have already taught her it is useless to give into pain.

I like that. Our parenting means thst she already knows that pain is there to be pushed through.

We’re not going to be defeated. Mummy must take her medicine.

I really needed that

This is the walker. Squidge loves it but there are versions of me that despise the fact I need to use it at all.

Today was not a day when that fight needed to matter. I had slept horribly on my shoulder and every movement hurt. Today I needed its help.

I dropped Squidge off at playgroup and was already in tears from the pain. I felt so lost and overwhelmed.

And then, walking through town, an elderly couple approached me, joking about not texting in charge of a vehicle.

The lady asked me outright what I needed it for, curious, not accusatory. It felt strange. But her kindness allowed me to a bit more honest.

“My balance is shot.”

This lovely stranger squeezed my hand and said “Good for you. You’re doing the right thing then.”

I really needed to hear that. For once, there was no judgement, no eyeing me up as a fraud because you can’t see my pain.

I went on to my massage. The therapist was so kind and understanding. She knew of cerebral palsy, was unsurprised when I mentioned my muscle tension, or the need to have a bit longer to get undressed. She even offered to help. And I didn’t allow myself to feel patronised. I felt supported.

She worked tirelessly on my muscles and tension. I felt the pain subside, the muscles loosen. By the time I collected Squidge from playgroup I felt human enough to agree to a play in the park.

After the emotional turmoil of constant pain and stress these last few weeks, it was nothing short of miraculous. I’m allowed to be important too. I think I really needed to be told that today.

“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.

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”