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.

Squidge, the Big Sister

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

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

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

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

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

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

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

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

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

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

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

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

Love Letter to my Little One vol. 3

Oh beautiful girl,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All my love for you my darlin’.

Mummy xx

Priorities vol. 2

Whenever I have been faced with needing to make changes, to practice acceptance of my changing capabilities, my wonderful, loyal, supportive husband has only ever asked one thing of me. “I’ll support you in whatever” he says. “You are living your life, you know best. But please, don’t make any decisions based on your emotions.”

Yesterday, after a very long day at work (all-day conference in the city), I fell over in the dark street having just got off my bus. I got up slowly from the ground and felt a familiar pain coarsing through my arm. I’m still not over my most recent bout of whiplash, so it feels like the aches, the pain and the limtations have been lingering for weeks. I called Kev, and asked him to come get me, as I was just at the end of the street. He raced down and as I saw him coming, I burst into tears. Because I knew I could now, that someone was here to understand.

We walked to the next corner and I lost my balance coming off the deep kerb. I screamed. Not because of pain. Kev caught me, I was fine. I screamed like a wounded animal. Because I feel more and more that I cannot be safe, that I am not allowed, I am not able to carry on with the threads of life I am trying (too) hard to hold onto. I fell over yesterday exactly at a point where I was allowing myself the thought “I am doing well. All these treatments are allowing me to keep up.”

I screamed because it felt like my body had heard the thought and just decided “Let’s remind her how wrong she is.”

Kev was worried that neighbours would come into the streets, wondering about the woman screaming in such pain. He tried to shush me. I stood in the road, clinging to him for my balance and sobbing. Sobbing about how unfair it is, how useless my body feels and how much I don’t want to live like this anymore.

I know the way I have to live cannot change. I grieve for that fact every day and I do not apologise for it. But sometimes, I am just too tired. Tiredness is the precise reason I was able to fall in the first place. I’m not sure it used to be and it makes me so sad.

The sound was awful. I knew it was me and yet to hear it, to have it be so desperate to escape from my chest and throat, it was like I was listening to somebody else. All I could see through the tears was the blur of the street lamps, and all I could hear was this awful sound. That poor woman, I thought, she sounds in so much pain.

Because it always changes. Part of my experience with disability and depression has always been, rightly or wrongly, that if I am depressed, I cannot be caught off guard when the depressing times or events come. It cannot impact me, they were expected. I don’t mind admitting it’s a horrible way to live. But that’s always been my rationale.

This weekend, I had what I call a peaceful moment. A realisation of true peace, calm and contentment. They are very rare to me. In fact, I cannot remember any outside of the 4 years Kev and I have been married. I’m sure this is not a true representation, but it does show what an amazing impact my husband has had on me as a person.

The first one was the day after our wedding. We’d booked a nice spa hotel for a mini-moon, to let us adjust to married life. Spas are ridiculously important to my physical maintainence and I remember just climbing into the warm jacuzzi. The sun was setting, sending beautiful red streaks across the sky as we looked out onto the Welsh hills. We held hands, our new wedding rings shining on our clasped fingers. There was nothing to do, no-one else to worry about. All we had to do was be.

The second was a weekend away around the first anniversary of my dad’s death, when work had been hectic and my grief heavy. It was to the city of St. David’s, which is in fact this beautiful little village. It was pouring down with rain pretty much the entire time. So all we did was walk between the hotel, the little chocolate shop and the pub with a roaring fire. It was as if the world couldn’t touch me there.

The third was the perfect day we had in Cuba, swimming with dolphins and eating lobster, drinking rum on a catarman as the sun set. An experience in a beautiful part of the world I could never have imagined I would get to see were it not for the husband so determined I deserved to see it.

The fourth was our first family holiday, where nothing mattered other than our little girl’s happiness.

The fifth was just this weekend. We went for a nice autumnal walk in one of our local parks, me wanting to crunch leaves underfoot, Squidge wanting to play in the park. There was no rushing, no clock watching. We went for hot chocolate at the café and I looked at them both, my husband and daughter, and I was so peaceful, so content. Right in those moments, I had everything I need in the world.

And I think that’s why it hurt me to hear myself so distressed over a fall. Because I know it was because I was tired, a reult of wanting to work too hard. It is not my fault. It is not what matters most. Yet still, I get so absorbed in what people must think of me, all these shortcomings that make me so pitiful and abnormal. Except, I am slowly realising, those are not the opinions of others. It is me, projecting my own. And I don’t want to waste my precious energy on being so angry with myself. What use can it possibly be when I had that moment in the park, that wonderful moment of knowing I have everything I need?

My family is everything. They are what ground me and who make me feel whole. I refuse to care any longer about whether I am working hard enough, or how much longer I can work to put coffers in the pot. A job is not what I want. My family is. I would like nothing more than another baby and I am determined not to wear myself down working. I know too that Kev would adore another child. So much so, that he refuses to wrangle with himself as I do over the finances. “If it’s something we want” he says (he knows it is) “then we will manage.” I have spent a lot of time and energy arguing with him, but what for? To see if I can make him as worried as I have been? It’s useless. The two of us are too determined in our aim. And what a beautiful aim it is.

The idea of managing has always stuck in my throat, like it cannot be enough. But I don’t care anymore. Somewhere safe and warm to sleep, with food in our bellies and love for each other. That’s all we need and we have all of that. I don’t want to struggle anymore. I want walks in the park, at my own pace, not having to think about what the rest of the world needs from me. Because what I have to give is not for the rest of the world, it is for my family. It is for that poor broken woman whose screaming is still ringing in my ears.

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.