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.

Medical fatigue

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

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

But a new battle is apparent.

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

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

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

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

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

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

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

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

Medical fatigue is real.

My best friend

The loneliness of this life is real baby girl. I know a lot of mums feel this way, like they lose their identity a bit with their tiny human needing them more than anyone before.

Pause it there. It is so crucially important to me that you always know that I do not feel this way because I am a mum. Being your mum, Squidgelet, has been a transformation for me. You are my anchor, the sense of purpose I didn’t know I was missing before I met you.

My sense of identity has been eroded by CP. Fatigue is too fluffy a term for it. It just makes me think of damsels in distress, fanning their brow dramatically til the cavlry rocks up

You’re my cavalry Squidge.

When I was glancing wistfully at the well groomed mums at playgroup, wishing they’d be my friends, like I might be one of them (that is, capable of drinking gin AND holding a conversation circa 8pm) you snapped me out of it by wanting to build castles.

I feel so guilty. Like, all the time. It’s as though no matter what, I’ll never feel I’m good enough for you because I’m always so depleted.

This morning was a shouty one. God knows what next door thought of me as I tried to push you out into the rain. You were crying then but I just wanted to get to the doctors on time.

You walked so well. No complaints, so road aware, so helpful. I have so much love for you Squidgelet and this morning I didn’t show it. I’m sorry.

We’ve played all day. Soft play, gymnastics and even a sneaky chocolate biscuit in between for being such a rockstar – right down to nagging Mummy like your Granny used to, telling me to stand up straight to save my back ache.

I love so much chatting away to you as we make our inevitable trip to Morrison’s so you can push a little trolley. There are always so many people in the supermarket and I don’t need anyone but you. You make me laugh as we sing questions to each other or you burst out in a new rendition of Big Girls Don’t Cry. I played you Frankie Valli when you were in my tummy and I love so much that one of my loves stuck with you.

I am so proud that even at a time of your life when you’re wrangling with your own emotions, you always remember to look after me – holding my hand or picking up your toys so I don’t fall.

Being able to spend any time with you feeds my soul and brings me happiness I cannot put into words. It helps me feel right in a world where I just feel so overwhelmed and out of place. You give me that, just by existing. You amaze me.

Life is tough for Mummy right now which means it’s hard on you and Daddy too.

But more and more, I realise now, it doesn’t matter. Because whatever comes at us, you’ve already told me… “We’ll do it together”.

And that, darling girl, is truly all I need. Thank you.

Did I make you uncomfortable?

I’ve written before about earning the nickname of The Part Time Part Timer at work.

I made a flexible working request with my boss, who was brilliant and let me work from home as much as I deemed necessary without another word, so long as I was taking good care of my body and managing my pain.

It means I’ve been out of the office a lot more, seeing a lot less of even my colleagues on the field.

My boss tells me I should care about me and not what anyone else thinks of me, because my life is no-one’s business. He’s right of course, but I’m a born worrier.

I decided to try and take control of how rubbish the ill-informed jest made me feel. I know no harm is meant but that still doesn’t give such words the right to make me feel so bad.

So I decided to be honest. To share the details that would otherwise be missing from colleagues understanding about my absences from the office.

Someone asked me for some paperwork I hadn’t seen. I couldn’t find what they asked for. They said it was time sensitive and asked “Do you mind if I have a look? You might not have seen it…”

I moved back and started to say: “Of course not!” when they finished “…because you’re never here.”

My defense tightened in my chest. I knew they meant it in a light-hearted way but enough. I had the right to speak a truth they might not be aware of.

“Actually, I’ve had to work from home a lot more because I’m finding I’m in more and more pain.”

But they were talking again before I’d even finished the sentence.

“Oh, I shouldn’t have said that.”

That told me they weren’t really listening, batting my words away.

And why would they do that? I can only surmise it’s because the truth made them uncomfortable. I wonder if I’m supposed to feel apologetic. Because I don’t. My life, its ever increasing limitations make me uncomfortable every damn day. It’s only right to let that be the truth. I have to deal with it, it’s not my problem if others cannot.

Facing Fears

The pain I have been in and how useless it has made me feel these last couple of weeks came to a head on Friday night. When Kev arrived home at 6pm to bathe Squidge and put her to bed, I couldn’t speak, sinking into my sadness.

As Squidge requested that “Daddy read” her bedtime story, I ran a hot, hot bath hoping my muscles might relax. I climbed in and burst into tears.

I fell into an exhausted sleep at some point that evening but even then… the tears and the sadness didn’t stop. In truth, I think I cried for 18 hours straight.

I think I was grieving. Grieving for the mum I wasn’t capable of being, for the support and experiences my beautiful girl couldn’t have because of me.

Having no choice but to accept that I will always be sore. Maybe not quite this much, but always some. That the levels of pain will always have some level of control on what I am able to do. And that didn’t seem like much at all.

We had a wedding reception to go to. But I couldn’t face it. Told Kev I couldn’t face the crowds, the small talk, the exhaustion and feeling like an eternal party pooper.

And Kev was as understanding as he could possibly be and told me that was fine. Said Squidge should go to his parents as planned and I should take care of me. But I just cried harder, I felt lost. If I wasn’t going to go, then I wanted to spend the weekend giving my time and energy to our little girl because the pain had let me fail her.

But Kev was right when he said I had no energy left to give, that to try when I was running on empty would be to everyone’s detriment. And I felt awful. Because more choices were being taken from me, because I couldn’t be the mum I so want to be.

Feeling like that though, how on earth was I supposed to go and have a nice, relaxing day to myself? When, not only would I be letting my daughter down, but also friends who were expecting me to celebrate their most special day with them? The prospect felt hollow and oh so lonely. I knew that if I was left alone, the horrible grieving tears had no chance of stopping. I didn’t know who to reach out to, because who can understand all the facets of this life?

The lessons of my Cognitive Behavioural Therapy course were also ringing loudly in my ears.

Face. Your. Fears.

Avoidance only offers temporary relief.

So, I took baby steps. My breathing wasn’t quite regular even when I got in the car with Kev, London bound. I didn’t know at that point whether I could talk myself into going to the reception. But it didn’t matter. I didn’t have to be alone.

And I went. I went into a room in a dress that made me feel pretty, in shoes that didn’t make me wince (Calla are literal lifesavers… I never thought shoes could make me happy) and I enjoyed the small talk, I enjoyed seeing so many happy people in one room. There was always a glass of Prosecco in my hand and it took hours of propping up the bar before my feet started to ache. I tried desperately not to pay attention to the time, to not bring myself down by feeling like a let down.

As it was, I admitted defeat just before 10pm – a solid effort for me. Kev was equally triumphant on my behalf and came back to the hotel with me without a word of complaint. I was a warm and happy drunk and felt accomplished with it.

I’d listened to the CBT advice and accomplished something for me, faced my fear of social situations, feeling like I couldn’t fit in a roomful of energetic happy people.

And I went to bed and slept for a good long time.

Exactly what I needed. Well done me.

The Part-Time Part-Timer

This is the name I have gotten for myself at work. At first, it was playful banter. Don’t get me wrong, I work with a brilliant bunch of people and am fortunate enough to have the most supportive boss in the world, but recently, it has niggled more and more.

My life has always been in many parts. I can’t explain why I prefer to compartmentalise my “beings”, but I just find life easier to handle this way. And of course, my most important “being” without question is as a mummy.

So when I went back to work part-time in 2017, I smiled when the nickname arose. “I get to spend 2 days at home with my awesome baby girl, don’t hate me cos you ain’t me!” was pretty much my uber mature response.

When I was allowed to start working from home to ease my physical demands, I was in the office less, the nickname used more. Never with malice, this I know. Many people in my team are fulfilling much more complex roles than I am and all power to them. I work to live and I am not a career girl. I did not dream of climbing a big corporate ladder – I wanted to be a mum. So I am more than happy to muddle through on a part time job. I am fortunate enough to do so because my lovely husband is willing to shoulder more of the financial burden.

But it occurred to me, outside of my boss, who allows me to be very frank when I say how physically and emotionally exhausted I can get, no-one has actually asked what this new chapter of my life is like for me.

Not Social Services when I pleaded for help with my newborn, not the health visitor (who, by the way, still hasn’t called on us in the 18 months we’ve lived in this house, not even after our dash to A&E when Squidge decided to lick a washing tablet, but hey ho, just as well she’s fine eh?) I haven’t been asked about how my disability impacts my life since my days working in classrooms, when 10 year olds would inquisitively question what it was that made me walk funny.

No-one has asked me about this life in 4 long years.

And I suddenly feel that I want to tell them all, because they need to know.

They need to know that no matter where I am, I work all my hours (which, actually is 4 days worth, not 3.) I’m the first in and the last out. I’m not spending my days off on jollies, as much as I’d like to. Lunch dates are few and far between, because what I’m actually doing more often than not is catching up on sleep. Because I don’t sleep. Probably because my back was hurting from sitting in my office chair for nearly 11 hours, or because my leg muscles seized again and walking is too hard today.

I don’t just get to fill my days with trips to the park and evenings in the pub because there’s no work tomorrow. More often than not, I’m slumped half-dead on the sofa by 7:30. I daren’t make evening plans with a friend because I’ll inevitably cancel through exhaustion. (I last went out 6 months ago when I went to see Ed Sheeran. I gave myself almost a year’s notice, made myself nap for an hour that afternoon and still was exhausted by 10pm and Ed was nowhere near done!) I have very little hope of a social ife because I need to take care of me first. It’s so damn sad and yet, it remains all I get.

Work less hours then maybe? Well yes, but then how does the mortgage get paid? Do I not have the right to work and provide for my daughter? God forbid, I just become one of those “scroungers” on benefits. I detest that term by the way… do not judge it til you’ve lived it. And ironically, we’ve looked into it – I’m entitled to nothing from the state, despite the fact that I’ve paid in, or that I struggle to get through every day. And that would be fine were it based on any insight into my capabilities. But it’s not. It’s based on my husband’s income. Not even just my own. But his. And we’re too “rich” to ask for help, even though me having no income at all would probably put us on the breadline. It’s ludicrous, so work I must.

Give up on my degree maybe? I’ve thought about it, but this one thing is just for me. Something I work hard at, something I treasure, something I’m determined to show both myself and my daughter I can see through, that I am capable of anything. I’m determined to give myself better options for when the life I’m living now is no longer sustainable.

I’m giving this life my all and if you knew me well enough to ask, you’d realise that far too often, I’m left with very little to give.

And even on those kind of days, you’ll still see me at my desk. I’ll already have been there for hours by the time you come in at 9am. I’m not judging you, am I? I sincerely believe in work-life balance and think everyone should work to rule and get the Hell out by 5pm to go and live life, to be with your family. If you don’t agree, fine. Go get that promotion by next year if that’s what will make you happy.

But please, don’t call me a Part-Time Part-Timer. Yes, I work part-time hours at this job, but, my God, I am full-time everything else.