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.

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

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.

[/humblebrag]

I know it probably feels like I am bragging horrendously. Maybe I am. I apologise, that’s not the intention.

2019 has been a year of self care for me. Investing in CBT courses and private therapy because I did not feel at peace with myself, despite the enormous blessing of my family. It has been hard not to slip back into the lingering darkness that is depression. It has been hard to fight against the voice in my head, which I believe implictly to be myself, which seems so angry at me.

But it has been the most important battle. Highlights like the ones listed above show me how much I have achieved, when there was a time in my youth I honestly believed I wasn’t capable of achieving anything. It is so important for me to recognise the things I have done well, to recognise the invaluable support I have had from my family, whom I love so much.

More than anything though, as I took a deep breath on New Year’s Eve, I realised that I am worthy of each of these blessings. Some are made of good fortune and luck, but others I have seriously had to work at. I deserve happiness. I do. Because what is life without it?

Wasted. And in this body, with the challenges I have to face year in and year out, I really don’t have that much left to waste. And life itself will never stop challenging any of us will it? So why fight it? Why spend so much time feeling drained for battling against the things I cannot control? My energy is too precious, time is too damn precious.

2020 I shall strive to make the most of them both.

I sincerely hope you do too.

Happy New Year.

We Are The Champions

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

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

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

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

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

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

Twice.

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

*exhale*

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

# We’ll keep on fighting til the end #

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

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

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

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

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

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

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.

Love Letter to my Little One vol. 2

I am big girl, you would say. To me, you will always be my baby. You, baby big girl are my reason for everything, especially right now. I can’t expect you to understand just now, but I think you understand more than I realise. This is a note for the big girl you are becoming, to explain.

Just now, Mummy is broken. The culmination of the emotional trauma of the PIP forms, knowing we are not done and really struggling with the physical stress and deteriation of cerebral palsy have burnt me out. I am exhausted in every way. I have had a nervous breakdown and I am fragile. But I will not be ashamed to call it by its name. Your mental health is so important Squidge, please learn from Mummy never to neglect it.

I have felt depressed and frightened and lost before. But never have I felt so helpless and defeated and stuck. Previously, I would have wished desperately to be someone else, to make these pains in my mind, body and soul go away.

But the reason I am telling you all this, darling girl, is that even at my most vulnerable now, I do not wish that.

Because no matter how unchangeable all my struggles may be, neither my mind or the painful inevitability of my condition deteriorating can affect the fact that I have you.

For all the struggles of this life, it made me your mum. It is my most treasured identity. I understand what is needed from me. I couldn’t want to succeed at anything more. Thank you for giving me that precious anchor in a world that would otherwise consume me.

Your dad and I will not allow it because I have you and the promise of your future to live for. I’m not sure you’ll ever understand what that gives me.

It is so important that you know I am not your responsibility. I am your mum because I made that wonderful choice. You are my motivation. But one day, you will be an even bigger girl and I want you to have the world. Grab it with both hands and shake it in all the ways I never felt able or brave enough to do. You are not to stay and worry. I have your dad for that.

Mummy’s differences are not ever to impact the life you want Squidgelet. I just wanted to tell you that on my darkest days, you got me through. To me, you were remarkable. You were just being you.

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.