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.

Lockdown Lessons

Lockdown life is hard

This one shouldn’t need too much explaining. I have been fortunate enough to be furloughed and Kev is now working compressed hours in order to support me with caring for Squidge. So, we don’t have financial worries, when so many do. But my worries are still valid. Because, what we have is a 3 year old whose life has been turned upside down without explanation, removed from loving contact with people she loves. Every day, she is left in the care of her pregnant mummy, whose balance is increasingly shot, hips increasingly painful.

My temper is short and I am not proud of it. My pain threshhold is even lower. But I refuse to shy away from either of these things, because for us, it is the reality of it. I am not a crafty mum, with play prompts lovingly set up and Instagrammed every day. I cannot do it, so Squidge is living with the same cycle of activities I am able to manage from a seated position. Anything else, requiring physical play or time on the floor needs to wait until Daddy clocks off at 5:30. So if it’s not board games or playdough or drawing here, then it’s pretty much not happening.

I can barely make a loop of our street now, I am so heavy. I caught sight of my reflection in a car window the other day and have only just realised that I do in fact have a sizeable baby bump now. I have in fact hidden it by pushing my bum out as far as my bump has grown to counteract its weight, so it’s little wonder my lower back and hips have in fact been hurting so much when I move. I’ve been living in an inverted “S” stance for months and I didn’t even realise, 2 pregnancies in! So Squidge’s daily exercise is another one for Daddy if I can’t convince her to let me count off 100 bounces on the trampoline.

I miss the routine of old

I have spent most of Squidge’s life lamenting that I am not able to do as much as I would like with her. Except, now that the “coughs and sneezes” (which is how we have explained COVID-19 to her) have taken away swimming, gymnastics, the park, play dates, play group, toddler group and soft play, I realise that actually, we were doing just fine, and I can’t wait to get it all back and appreciate it. I also want to get Squidge some swimming lessons when the world becomes normal again, because I so wanted her to have her own little world of skills and friends before the baby came. I am heartbroken that my best laid plans have been so disturbed for us all.

Screen time is not the enemy….

I am not a fan of screen time, but I use it like all of us do and Squidge has gotten a lot from it so I know it has benefits. I now have to use it to help me cope also, because there’s no way, without the respite of playgroup and nursery whilst I am pregnant, that I can physically cope with caring for Squidge alone between 7:30am-5:30pm. I so wish I could, but it is useless to struggle against what my aches and pains are trying to tell me, because no-one benefits when I try.

This pregnancy, on top of the stressors of lockdown, I am absolutely exhausted and when Kev has been able to get up for me in the mornings (and no word of a lie, my husband is a legend!) I am quite able to sleep for 11-12 hours at a time at the moment and I remember well that this is not going to be possible with a newborn. So instead, on days when Kev is already at his desk for 7am and Squidge wakes up, she comes into our bed with me and watches Ben & Holly or Paw Patrol until I feel able to move and face the day. There was a day this week when that was midday. I bought her snacks and juice to the bed and whilst at the time, I felt horribly guilty. But why? It’s entirely necessary I use the tools I have in order to be in good form for my little girl. So, even if there are days when Peppa Pig stops by for hours, it is not all that is in Squidge’s life, however repetitive it may truthfully be at the moment.

….but social media might be

I love social media as much as the next person, but it is so important to remember that all anyone puts online is their highlight reel. Even in these times, it’s rarely used as a wellness platform (as an aside, for that, I highly and absolutely recommend Headspace!). People share their good days to make themselves feel positive. So kudos to the mums with the nature walks and play prompts, that’s great if you can. But as I mentioned, I cannot. No energy, not a creative bone in my body. The fact I am not you does not make me a bad mum. Admittedly, that’s not on you. This is my perception of what you have posted, because I can only interpret the way it makes me feel. I have to own that.

I have been shielding for 9 weeks now. There have been some low, low moments, because having your liberty removed for the greater good is not a natural adjustment. I have berated myself for not being the energetic, always engaged mum with endless creative and educational activities lined up, because others are handling this so well, they make it look so easy. Or do they? Are they crying with exhaustion and guilt on the kitchen floor too? Do their bodies ache as much as mine? Probably. For different reasons but probably.

It does not matter if I have not made our meals from fresh ingredients. What matters right now is that we eat, that we sleep, that we show love. Highlight reels hide so many of the low days it is inevitable will be experiencing in these times and whilst I am guilty of it, I am also a firm believer that we should feel brave enough to acknowledge these days, because they exist. They are real and they are truth.

As an offshoot to this thought, I am a self confessed bargain hunter, wanting to be frugal and get the most out of our money because soon, lockdown or not, we’ll be on one income and we need to make it work for the sake of my sanity and health when I have the gift of being able to stay at home raising our two children. It has beeen interesting to see people report ways that they are saving money throughout lockdown. We are lucky enough to be in this group, because our childcare setting stopped charging us when lockdown hit, our cleaning service is on hold (but God, I miss it!) and our fuel bill is miniscule.

Mum friends have reported saving money on activities that their children have not missed since being at home, happy instead with garden play and crafts with the endless supply of Amazon delivery boxes. I am not that mum. I love a bit of money saving, but lockdown has taught me that money spent in pursuit of my daughter’s entertainment is very well spent. So whilst we are in lockdown, I’m buying paints and new board games, and any money I have left is going towards the long list of renovations we need to complete to make our house our forever home.

However, when Squidge’s blessed routine is restored, money saving be damned. It will be worth every penny to keep her busy and engaged and meeting new people. So we have plans for swimming lessons, a magazine subscription to keep her busy on quiet days and as many groups as I can realistically manage with the new baby in tow. We are also maintaining a list of the activities she has missed or would like to do, including gymnastics, soft play, swimming, visits to the farm, park and beach and friends and I cannot wait to indulge them all. A quieter, slower pace of life might be fine for now, but it cannot last forever and I for one, will welcome it. My little girl deserves her own little world back.

This pregnancy will not be the experience I wanted (& that’s OK to say!)

This has perhaps been the hardest realisation of these strange times. I had such plans for caring for myself through this pregnancy. It has taken my whole life to realise that I require, that I deserve a certain level of self care to be at my best. I was determined that this time round, I would make sure there was hydrotherapy and physiotherapy and regular pregnancy massages to ease the awkward movements and pains of a CP pregnancy. I was going to start an aqua natal class as soon as I felt those familiar pains. (This was pretty instant with Squidge, but did not catch up with me until after lockdown was imposed this time at around 16 weeks, which I suppose is a saving grace, but my God, it’s hit me hard thanks to the lack of access to remedies!)

After feeling so unprepared for my first pregnancy and ultimately let down by the lack of knowledge about mothers with cerebral palsy, I was determined to feel more in control and calm about the whole experience. Ultimately, I wanted to appreciate what a wonder pregnancy is, particularly for a hard-worked body like mine, and if I could, I wanted to enjoy the experience. As it was, my family’s feet has not touched the floor, between hospitalisations and now lockdown, I’m 6 months pregnant as I write this post and were it not for the kicks in my swollen tummy, I’m not sure I’d know there’s a baby coming. We’ve had no time to digest, be amazed and cherish the experience.

The other day, I cried for hours, letting out the grief over the fact that I will not get to experience my calm and measured pregnancy now. I am working on mindfulness to keep my stress at a minimum for the sake of the baby, but that does not minimise the fact that I am not able to feel the benefit of all the self care measures I planned, or the fact that antenatal care has been forced to scale back so much in the face of this virus that I’ll have gone literal months this time around without interaction from a midwife or my consultant (and my expectation that either of these people will be people that I have met before is long, long gone!)

I am lucky in as much as I have been through this before, so vaguely know what to expect from the journey and the repeats I want to avoid. This is a very difficult time to be pregnant, to be responsible for another life in the world, but I cannot imagine how scary it must be for first time parents.

With the lockdown restrictions as they currently are (May 2020) we are faced with the fact that Kev may well miss the birth of our second child in August altogether, because he’ll be required to care for Squidge. That is so heartbreaking, and we’re both praying that the restrictions can be eased in time, but we absolutely appreciate that if they cannot, then there are good reasons behind that decision. But my God, it hurts us both so much.

It’s A Small World After All

The world is a strange place right now. In the grip of a global pandemic that has the potential to threaten all of our lives.

The best advice is to self isolate, protect yourself, protect those you love and by virtue of sensible action, protect vulnerable strangers. To say a grateful prayer for the nurses, doctors and key workers the world over working with all of their heart and soul to keep us well, keep us safe and help us find a way out to the other side.

To not be one of the idiots clearing supermarket shelves, or taking your entire family out for a day trip in the aisles.

We keep hearing the phrase unprecendented times and though it might be starting to grate, it couldn’t be more true. The world has never faced something of this scale. We’ve survived World Wars, people have lived through nuclear war and terrorist attacks. And yet, we don’t seem to be grasping the sheer importance of staying home. Even in a week when Disney+ was launched, we seem determined to get out and endanger life, simply because we’re being told not to. We cannot be surprised a lockdown has been forced upon us and honestly, the stupidity and selfishness of people at large is starting to scare me more than the virus itself.

My family & I are personally 2 weeks into a suggested 12 week shielding isolation, because both my pregnancy and cerebral palsy apparently place me at a higher risk, so the three of us have bunkered down, basically for the sake of our two children. I don’t think the grade of my cerebral palsy puts me at increased risk because I am fortunate not to have any of the common secondary conditions, like respiratory issues, but we absolutely would rather be safe than sorry.

So there’s no more nursery for Squidge, no playgroups, no gym, no trips to the park. Kev & I are working from home and Netflix & Paw Patrol are babysitting a lot. I feel a lot of guilt, but it’s almost comforting to know we’re not the only ones facing this. I do feel sorry for Squidge most of all, the lack of routine is not fair to her. I will be glad to get that back.

But, I am learning a lot.

There’s not been enough work to work my full days so the childcare has in the most part fallen to me. Kev comes down to play with Squidge and share meals as often as he can. It is so nice to be able to have breakfast together every day and it is certainly something I will want to maintain for our weekends.

It has been so lovely to sit with Squidge and play games, to draw rainbows for the windows, to count all the Stay Safe rainbows out in the community on our daily walks.

I am home a lot anyway given that I worked from home before all this to maintain my health and my world already existed within a small radius of our town, so that I could feel confident and independent. It may not be everyone’s choice when the world is at a normal capacity, but it works for me. Now that the world has been forced to slow down for the greater good, I guess they’re seeing more what my world is like. I mean, I can’t say that everyone appears to be enjoying it, but it’s more of a reality now.

Suddenly, I don’t need to feel so guilty for living in my small world. The whole world is suddenly small. My own personal universe is required to exist within the walls of my home, extending on sunny days out to our backyard, all for the good of ourselves and others.

It’s kinda nice not being able to be frivolous. I mean, I try to be savvy anyway, but there’s nowhere to go right now! I’m not going to lie, I did get a wholesale box of chocolate delivered, so please think of me when I go in for gestastional diabetes test in a few months! It’s nice to have more money in my pocket, so I’m overpaying our mortgage a little more. Like most people, we’re probably being forced to spend more money on our groceries, but that’s pretty much all, but suddenly you learn all the things you already have, the things you can make do without. It no longer makes a difference if I get my hair done every 3 months. In fact, I’m letting it grow out during the isolation so that there’s less work to do when the world goes back to normal. I’m about to be a mum to 2 children, possibly whilst still under all the necessary restrictions of this panemic. My roots are going to be the last damn thing I care about.

Part of me hope that a lot of people out there are reassessing what’s important. This isn’t a lecture, I’m a consumer like the rest of us, but in a time when it’s getting harder by the day to name the positives, it’s nice to know the environment is being given some kind of breather whilst we’re forced to be at home. My home is important, because it is my own and I am lucky to have it. So, whilst it’s possible, the mortgage is important. My nice fluffy blankets are important. My Headspace subscription is important. Clearing the house out ready for the baby is important.

Very few things outside of my little world (besides extended family and the restoration of Squidge’s routine) will continue to be important when some level of sanity and calm is restored in the world. That in itself feels very freeing.

I am almost 20 weeks pregnant now. In some ways, that’s a relief, in other ways it makes me sad. When I dreamt of having a second, I wanted to prioritise myself, my health and enjoy a calm pregnancy. In fact, two of the most pivotal people in my family have had extended hospital stays and now the whole world is at risk from a virus I have to hide from for the sake of them all.

Next week, I will be forced to attend my scan alone, because partners are not permitted to minimise the risk of coronavirus spread and even then, Kev would not be able to attend because we have no support network since Kev’s parents went into isolation for their own health at the same time as us, hence there will be no-one to care for Squidge. There is nothing to be done, but we are both gutted. We wanted to discover our baby’s gender together. Now, however, if it can be determined, I will find out before the father and sister of the baby, the two most important people they will ever know. I have arranged gender reveal surprises for them, but out of necessity rather than anything, because I really dislike the conceit surrounding the tradition of reveals. But I don’t expect anyone to care about the news other than Baby’s family.

My hips are starting to ache a little more and I feel a bit more vulnerable when moving, but I keep remembering the struggle of carrying Squidge and I am thankful most days that my physical self has withstood this pregnancy, especially with all the emotional challenges we have faced instead. I fully intend to single-handedly keep both my physiotherapist and massage therapist in business when my isolation is able to end, because I miss them terribly, as do all my muscles!

I sincerely hope that everyone in a similar position to me is prioritising themselves, taking care of themselves and remembering to breathe. I forget this often and as stress build, my God can I feel it translate in my body. This is an entirely new scenario for us all to live amongst, but remember that that’s true for us all. That means you’re not alone. Keep busy, but take things slow. Much like I wanted my stay-at-home mum lufe to be, there is no sense of time anymore, there is literally no rush. Right now, all we have is time. Use it to look after yourself and make yourself your priority. If we’re not looking after ourselves, we’ll not be able to do our best for others, those who probably need us more than ever whilst the world is on its head.

So let’s go for the little things, the simple pleasures and let the rest fall away. The world will speed up again, it will get big again. Let’s take some comfort in the peace of this small world. It cannot last forever.

Stay safe.

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.

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 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.