My little cheerleader

It feels so strange to say it, but this last week or so, I have been on top of the world. Tired, but accomplished and oh so proud.

Knowing that I struggle and knowing that I don’t want to hide forever, I have taught Squidgelet to say 2 phrases on demand:

“Take your time Mummy’

&

“Come on Mummy, you can do it!”

I love so much that she’s so willing to support me in this way because, whilst I confess I am easily overwhelmed, she remains the reason I do everything and her words calm and focus me so much.

We are home alone today and I was determined not to waste it slobbed out in front of Youtube. Despite how much the thought scared me, we got in the car and I drove. Somewhere new. And when I pulled perfectly into the space, Squidge declared: “Mummy did it!” I was so proud.

Today, for the first time ever, I took Squidgelet swimming on my own. She’s two-and-a-half now, with such amazing communication and empathy for her mummy. I have always been too scared, terrified I might fall.

But she listened to my every instruction, always looking back as she held my hand to make sure our small and steady steps on the slippery surface were keeping pace.

She splashed, she jumped, she kicked her powerful little legs and swam all on her own. It was almost as though, with her buoyancy vest on, she didn’t need me. But better than that, she wanted me there.

I struggle to pull myself up onto the side of the pool, but my beautiful girl pulled me the rest of the way by pulling my shoulders with all her might, so determined was she to push me in again.

I’ve never had so much fun!

I dreaded getting dressed again but kept my voice calm and we talked through every step together. I even managed to coax a hesitant Squidge into the showers. I have learnt everything is a matter of making time for it. No need to get annoyed. No rush.

And here is our #successselfie

My awesome little sidekick and me, all dressed.

I had some shopping to get so decided on lunch in Morrison’s 2 minutes away. Parked perfectly there too.

Squidge, very well rehydrated after swimming had an accident as I sat her in the trolley. Potty training is going really well so we’re at the stage of pants rather than nappies and we’re just starting to have dry days.

Related to the cerebral palsy I believe, I had bladder incontinence issues well into my teens that was resolved by medication in the end. I have never forgotten the shame or lengths I would go to to conceal the problem so I wouldn’t have to miss anything fun. I fully believe Squidge has the same excitable logic and I absolutely refuse to let her feel one iota of the shame I did. We carry 10 changes of clothes and handle everything with a “No worries.”

We got her changed and enjoyed lunch together

Pretty much as soon as this orange juice was consumed in one slurp, there was another accident. She waddled back to the toilets, but I praised her highly, remembering too well how uncomfortable it is to walk with soaked legs.

Quick wardrobe change and Squidge was back in the trolley, diligently ensuring all our purchases were well placed.

I adore her and didn’t care a jot when she admitted to “Poo!” as we were at the checkout. It’s much better to see the hilarity in heading back to the toilets for the third time in 2 hours and wondering how I hadn’t been questioned for shoplifting.

The freedom that my determination to show Squidge that there’s “No worries!” is immeasurable. It, and she, are doing me the world of good right now.

Mummy did it, Squidge!

It Doesn’t Have to be a Nightmare

So I thought that first fall was my worst nightmare come true. I never counted on feeling worse than that, even though I know it was unavoidable that it would happen again.

On Thursday night, Kev went for a run whilst I agreed to bath Squidge alone. I wrapped her in her towel and lifted her into my arms, doing well so far. I tried to pick my steps back into the lounge carefully, she is precious cargo after all. But I kicked one of her boots that I’d stupidly left on the floor and we keeled over together. I wanted to throw her away from me, but the only direction she could land in the split second that we fell together was towards our glass coffee table and I just couldn’t make myself let her go. So in that instant decision, I had no choice but to land on her. I moved off as quickly as I could, but understandably she cried.

The guilt coursed through me and I cried too, checking her over again and again, even when she’d stopped crying as soon as I’d adminstered ‘magic kisses’ to where she said her arm hurt. But oh, I felt like a monster, a careless monster. After all, I should have known to pack her shoes away before undertaking bath time by myself. I called Kev in an instinctive panic and he came home as quickly as he could. The rest of the evening passed just as normal, though I’ll admit I did have a glass of wine for medicinal purposes!

The next day, playing on the floor with Squidge, she playfully pushed me back on the rug, wanting to climb and lie on me and play. That’s usually a good way for us to play together, because there’s nowhere else to go if you’re already on the floor, it’s pretty safe. But this time, I fell back on her big toy drum with quite some force and I cried out in pain when it dug into the tense muscles of my shoulder.

Squidge stopped dead, frowning in concern and confusion as Kev moved to help me get up.

“Mummy ow.” I explained when I was sat down safely.

“Mummy ow the drum.” she replied.

About half an hour later, she threw herself down on the floor, striking her back on the drum in the same fashion I did, looking over at me as she shouted: “Immy ow!”

In that second, I was heartbroken, realising she was imitating my fall, repeating my pain as if it was a normal aspect of the life we live together. In the next second, I was impressed that she had understood the whole incident. After all, imitative play is how children develop an understanding of their world and whether I’m comfortable with it or not, falls and pain are a regular and undeniable part of our life.

I got down on the floor and said gently: “Oh darlin’, Immy doesn’t have to ow. Mummy ow cos Mummy fell over.”

“Immy and Mummy fell over.”

Then I realised she was connecting the two incidents, as if it was she thought she had to fall because I did, because we’d fallen together the previous night. Again, heartbreaking. After all, I am her mum. I am alive to be her greatest protector and yet from my arms, she had felt pain, however fleetingly. I felt so guilty, although given how much I worried about this exact incident when she was a tiny wriggly newborn, I suppose there was a need to be proud that it had taken me over 2 years to get to the dreaded moment.

But still, it showed how clued in she is. That made me very proud too. She shows such a great level of understanding and empathy.

“We did fall over darlin’, but only because Mummy has tired legs. Immy has clever legs, you don’t need to fall.”

I showed her where on my body I had hurt myself on the drum, let her feel the tight tenderness in my shoulder.

“I don’t want you to ow like Mummy, when you have clever legs!”

“Clever legs!”

“And what does Mummy have?”

“Tired legs.”

I think this is the start of explaining Mummy’s differences. In the simplest terms I can. And so far, my beautiful Squidge’s head and heart are keeping up. I really hope this won’t be so bad after all.

“Mummy, I’m alright!”

This is Freddie. Freddie is the most loved Fox there ever was.

Freddie came into Squidge’s life when she was just a few weeks old, my own best friend introducing my baby girl to her own best friend. I love that. I love that Squidge loves someone else so much.

He comes with her everywhere at the moment. He came with us to the playground opposite our house. She pushed him lovingly back and forth on the swing until, inevitably “Freddie glide!” (Slide, of course!)

Squidge has always been so confident physically, very rarely is she willing to accept help. And I love that confidence, I want her to have it always.

But because she was so determined that beloved Freddie should enjoy the experience too and she would not let him go, she lost her previously confident footing on the suspended stepping stones.

I know every parent experiences the horror of slow motion. I saw her fall before she did and cursed my body for not reacting in time as she sobbed in shock.

I bundled her into my arms and checked her over, horror and tears coarsing through me. I had never seen her actually hurt herself before. I called Kev instinctively as I soothed her, convinced we’d be going to A&E.

As it rang, I asked Squidge where she hurt. She’d fallen forwards about three feet and I was terrified she’d say “head” or worse, nothing at all because I’d allowed her to be so damaged she couldn’t remember.

“Chiiiiin!” She wailed. I personally have split my own chin open twice so was terrified to look where she pointed. But there wasn’t so much as a graze. The sobbing subsided (from Squidge at least!) and Kev, thank God, was calm.

“I can’t even hear her crying.”

“She is!” I insisted as she wriggled out of my arms.

“What’s she doing right now?”

As I remained a tearful, guilty wreck on the floor, I dared to look up. And not only had our beautiful, brave, confident girl climbed back up onto the slide; when she saw me looking, she called out reassuringly “Mummy, I’m alright.”

And so Squidge and Freddie played on until she could be tempted away with an offer of tea and an episode of “Money” (aka Tipping Point) and I was amazed and humbled by the utter resilience in someone so small.

The guilt made my stomach wrench as my baby cried but that baby, she consoled me. Never have I been so reassured of the good job I am doing as a parent.

Mummy sees you’re alright Squidge. I think you’ve got this, baby one.

Facing up to the reality of stress

Months ago, I took myself to the GP and told her that I was overwhelmed and sad. She referred me to the Mental Health team who have in turn, given me the opportunity to attend some Stress Controll and Fulfilment classes.

I went to the very first session of the Stress Control Group yesterday. I was anxious about it all day, nerves writhing in my tummy. I couldn’t concentrate and got very little work done. So a stress course was essentially stressing me out, making me feel guilty for not applying myself to my paid work. Ironic isn’t it? But I walked to the venue, I walked through the door. Three people in the queue ahead of me asked to be directed to the same place, so I didn’t even need to feel daft and just walking into that room felt like such a big achievement. I was after all, there to help myself.

There were so many people in that room. It was amazing. You always think that you are the only one, when in fact, stress is as common as can be, causing so many related issues for us all, like constant physical pains. Who knew, right?

I felt quite panicky just being sat there and could feel myself losing my sense of “being in the room”, spiralling off into my own panic. I wanted to cry for all the struggling people they talked about in the case studies, I wanted to get up and run. It was hard to listen, though I laughed to myself when the course leader said exactly that – that concentration is always poor when we’re stressed and anxious. But she also kept saying that I was in the right place and it made me feel braver, safer.

I can’t pretend I listened well for the whole two hours because I know I didn’t. But some snippets really resonated with me.

We all have stress in our lives.

None of us can change what has gone before, so why waste emotional energy overthinking what you cannot change? What’s ridiculous is, I of course, know this, but hearing someone, a professional, say it out loud, the little monster that lives in my ear unclenched a little bit and stopped dead. Because it’s so true. You have to go on. And in spite of everything I have told myself I am not capable of, the one thing I know I am capable of is going on – nothing has killed me yet.

They told us that stress feeds itself on all your other stressors. So if you spend a long time feeling stressed and overwhelmed, chances are the thing that stressed you this week is not the thing that set off the stress of last week. You have to find ways of cutting the little monster off. And hopefully, that’s what these courses will enable me to do, to find happiness in the little things and to feel real pride for all my achievements.

And here’s my first one:

Our homework was to draw out our “vicious circle of stress” – all the things that stress us and how they manage to keep themselves going, so that we could try and work out ways of starving the stress. Now, I didn’t get that far, because honestly, my circle was far too busy to be a circle. A list of stressors came pouring out of me. And when I read it back, I realised that for years now, I have been dealing with a lot!

I haven’t necessarily dealt with these things well, these are things I am looking to learn, to help myself. But nevertheless, I am constantly dealing with a lot, even outside the standard “marriage, child, house” that it’s likely everyone else in that room was dealing with. I have pain, I have limitations, which in themselves need a lot of work on acceptance before the anger wins. I have uni, I have long-distance relationships to maintain and a lot of memories to process that have hindered my sense of independence and self-confidence.

And suddenly, I felt proud of myself for being able to carry on. I’m going to give myself less of a hard time. I never feel proud of myself. Me, myself & I have pretty much always struggled to get on, so honestly, this was a great start.

The mantra of the stress control course is something like “Face your fears. Be more active. Watch what you drink.”

Avoidance is a huge crutch of mine and the course already recognises that avoidance does work to control stress in the shor term. But avoiding your fears just builds them up into a more deep rooted problem longer-term and to be honest, I think therein lie a lot of my problems. They’ve gone unfaced for too long and have become a horrible, stubborn part of me that I hate, but that really has quite a grip on me.

So I’m trying to take the mantra to heart already, even without realising it.

The day before the course, I walked Squidge to playgroup. She needs constant bribing to get in the pram now because she’d rather walk, but we did OK.

She was patient, she listened (she even collected the Deep Heat lotion for me that morning when I was on the floor complaining that my “neck ow!” She handed me the container saying “Mummy medicine neck ow!” I was so blummin’ touched. She went into playgroup without a backward glance when previously she’s refused to go in without clinging to me. Well done Squidge, my big, brave, grown up girl.

Enjoying her soup before Wednesday’s playdate

I pottered round town, buying all the bits we needed and then I went back for me. She wolfed down some soup and went for a nap in preparation for a park playdate we had with a friend. But she wasn’t ready for me to wake her an hour later and howled like I was beating her whenever I made moves to get her dressed. She clung to me, sobbing, only comforted when I rocked her like I did when she was newborn. I felt awful, that my baby was so upset, that I couldn’t dress her, that we’d be late, what my friend would think.

As it was, we were only ten minutes late and my friend couldn’t have been kinder – and Squidge couldn’t have been more delightful, cooing over her baby boy and guzzling her babyccino like a pro.

Face your fears – I didn’t allow myself to cry off and let a friend down, or let myself feel terrible for doing so, like I didn’t deserve friends. I told myself (and Squidge!) that she was getting dressed because I knew we’d (both!) appreciate the experience much more when we were there.

Be more active – Two walking trips to town and back. Well done me!

Watch what you drink – I got a 12 bottle box of wine at cost price from work for Christmas, so I’m not gonna lie, I have been caning the rosé (which for a lightweight like me means 1x large glass, so only just topping my 14 units/week (maybe?) I’m probably not drinking to medical excess even now, but I know it’s still more than I really should. So yesterday, I had a small one.

See? Wins all round!

And today, I met up with another friend and her little girl at mine & Squidge’s favourite soft play and then they came up to play at the playground by our house for some outdoor time. They ran off to the basketball court together to run about and when they came back out, they were holding hands like the best of friends. My heart felt so huge with love in that second, I felt so happy.

Playing with her lovely friend on the “tee-taw” today – and absolutely not looking at Mummy’s camera!

The lovely mobile hairdresser came round too to check how I’d gotten on with the ponytail tuition and would you believe – I actually did it! Even with my weak hand, I got my hair up higher than I ever have before, so I have the skills there now. Just more practise and then I can learn a messy bun to go with my messy ponytail. (So relieved these are in fashion because these are what comes naturally to my wonky hands too!)

I am very proud of me. Because in these last 3 days, I have done a lot to benefit myself, which in the end can only mean the best of all things for Squidge. A little less avoidance from now on. Let’s see what the best of me looks like!

Today, I am my own hero

What you probably don’t know about living with cerebral palsy is I am constantly robbed of choices. If I have to get up and go to work (the bills won’t pay themselves) on the morning when the screaming pain in my hips says I won’t walk without agony today, then I can’t see that friend I’ve missed for months. I can’t play with Immy. I can’t go buy the milk. I am constantly robbed of my hard won independence and it’s simply not fair. It’s actually damn frightening.

But today, I can say for the very first time in my life, I am my own damn hero.

I have been blessed with a kind, helpful and inquisitive daughter who never questions why it takes me more than one go to do pretty much anything. She has made everything possible for me.

Yesterday I was limping everywhere, terrified I’d have to let down my dearest friend… who incidentally understand this life more than anyone else I know. I was so angry the choice might be taken from me. But we made it.

And today, I’m home alone. It’s all on me which isn’t normally the case. I was so worried. Immy knew, so she slept in til 9:30 to make this day easier on me than yesterday.

I’ve driven to the supermarket, I’ve carried the bags in one hand and held Immy’s hand proudly in the other. I’ve cleaned, I’ve tidied, I’ve cooked… all things I have to stop and check for niggling aches or pains that say it’s too much, that I’m not capable. They haven’t come.

I bathed Immy by myself. A job I avoid because I’m terrified I’m a danger, that I can’t protect her. I washed her hair (a job I NEVER do) and then I sat on the toilet seat with her wrapped up in my lap, brushed her hair and her teeth and got her ready for bed. She read 5 story books to me and flopped her head down on me, stroking my arm and whispering “Awww Mummy” before she took herself up to bed.

Today, I have been nothing but Mummy. I haven’t had to struggle through this day like all the others.

This is the day I’ve wanted to live since the day she was born. To just be Mummy.

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.

The Battle for Baby #2

I mentioned earlier that I have been suffering with anxiety and feeling overwhelmed by the sheer number of elements in my life.

Last week, like a kick in the chest, I suddenly was able to give these anxieties their unspeakable name.

“I’m not sure we should have another baby.”

Now, permit me to be clear…. Being Squidge’s mum has shown me what my purpose is in life. I was terrified to become a mum, so scared of failing my baby, but I loved her from the first second I put my hand on my belly on the way home to tell Kev I was expecting. She is mine, she is the light in my life.

I want nothing more than to go through the experience again. I feel as though I know more what to expect now, and I want to appreciate the miracle that pregnancy is, I want to take the time to appreciate the amazing things that my body, normally wrecked and ruined, can do.

But….

Parenting is hard. It is so very hard. I am so tired, scrabbling to find the energy for other aspects of my life that I cannot let give yet.

Work being the first example.

I honestly believed I would work forever, just as everyone else my age is condemned to do these days. If I needed money, I needed to work, simple as. But it took Kev looking me dead in the face and saying: “You realise you can’t do this for much longer, don’t you?” to realise how damn tired I was. And he’s right. It’s not worth giving up the quality of the rest of my life to be able to bring in a wage. People survive every day.

And so, we mutually agreed that I should phase my working hours out. I like working. It gives me a sense of normality and of self worth. It wouldn’t do anyone much good for me just to quit working outright. And who knows, we might strike a beneficial balance along the way.

I am very lucky that I now have a very understanding boss, who, in his own words “lives in the real world” and always tells me to take care of myself and that I must “tell me how it needs to be, you don’t need me to tell you you come first.” He knows how hard I find the second point because I so desperately don’t want my condition to affect my productivity at work. But he hasn’t seen a decrease and so refuses to dictate to me. I really like that and I really enjoy working for him.

He already knows that it won’t be forever, but he too is determined to help me find that balance. He also knows I envision another maternity leave in my future at the company.

But can it really happen? Childcare alone prices me out of being able to work and enjoy the miracle of 2 children. Kev’s income currently is diminished by the amount we would need to survive as a one income family and my God, I already watch every penny I spend.

And so, I put the question of income to the wisdom of the internet, trying to bring our expenditures down. I explained about my condition and the need to stop working no matter what happens, and the want we so have for another baby.

I mention to the internet how I have aspirations to do my masters after my degree. Someone asks: “Why, if you can’t work?”

And I bristle, feel myself get defensive. “Why not?” I fire back. “How else can I invest in my self worth if I’ll be at home through no fault of my own with no job and no much wanted baby to care for, because it’s for the best?” I tell this lady about my aspiration to become a play therapist and that is most likely to be sessional work rather than a 9-5, which will suit my physical health better.

She replies: “If you’re adding to your skills, your financial worries won’t last forever. Good luck.”

BAM! She’s right. I’ve never realised it before. I have always been determined to see through my degree and the masters to show Squidge that no matter how long the road to get there, dreams are obtainable. I never even thought about the fact that if I keep going, I’m not simply crashing out of having any uses, or contributions to make. I’m simply taking my time to get there. Such a simple and powerful concept, but one I’ve never allowed myself to realise.

I have spoken to Kev about all of this. I was apprehensive when I asked to sit down, so fear ful that I will make him sad, squashing another of his dreams. I already negotiated Kev down from 3 children for my physical limitations, and we were set on 2. Having to let that dream go would break my heart. To break his would be a million times worse, like I’m punishing him for loving me.

But he said he was proud of me for being able to come to him in a measured way and lay out my worries. I didn’t feel very measured. I sobbed out my guilt and stress. I so, so want another baby. Not until Squidge is at school, operating a little more independently in her own little world, but I want to do this again.

And maybe we won’t, says Kev, but how can we know that now? Why am I allowing myself to get so overwhelmed by guilt I don’t even know yet that I have cause to feel?

And he’s right too. If we don’t, then, as heart breaking as it is, it’s for the best – and there are so many children out in the world we could help in one way or another. If we do, then it will take a lot of planning, and there can be no baby before we’re ready and happy with the plan in place.

So there is money to save, care to take of myself and time to take. Because it will be hard, but thanks to the lady on the internet who made me remember that those tough times have a time limit. They cannot, and they will not go on forever. It could well be 2 or 3 years before I give up work completely. By then, my BA will be in hand, Squidge will be at school. And if I choose to pursue my masters, we might be in for 5 hard years. And that won’t be fun. But at least it has a number, like the sadness and anxiety has a name.

That is so much better than the unknown. I need to remember that.