I wish I didn’t have to tell you how much Mummy hurts

You’re still my baby. For all your confidence and independence, you are my baby and I am the mummy. It is my job and my privilege to take care of you.

My heart is happiest when we have days like this in the park… I wish you could know how beautiful you are my little sunshine.

But we haven’t made it to the park today. As I write, you’re napping on the sofa beside me, Freddie tucked up under your head. You’re so peaceful.

I’m not. Working from home without all the trappings of adjustable screen risers and chairs is taking its toll… one I didn’t even think to expect. That happens to me a lot now and I’m getting more and more frustrated. It’s horrible having no understanding of your own body. It’s so unfair.

My back has been in constant spasm. I didn’t even understand that I suffered muscle spasms at all until recently. My back has been constantly tense, my muscles feel solid and useless. Every little movement hurts today and it has made me feel a terrible mummy.

I couldn’t lift you up… even when you asked so politely with your please and thank you. You couldn’t understand why because you’re so small and you’re still learning. But the pressure of you asking continually made me burst into tears.

You understand what it means to cry now and tried to distract me with songs and games and shouts of “Mummy!” You have such a big heart, darling girl. I tried very hard to stop crying… for you.

But it breaks my heart that I will have to explain to you so many times and in so many ways as you get older all the things that Mummy finds hard… and harder.

I don’t want you to hate my differences. And the only way I can expect that to be what you learn is if I teach you. So I have to learn not to hate them either. But oh, when they sneak up on me like this, a nasty little reminder that I am not in control of my own body, it gets so hard.

So I’m so sorry if I shouted Squidge, or if I made you feel sad. Mummy is struggling today. Because I so wish I didn’t have to share this pain with you. Today I could not hide it.

I’m sorry we couldn’t go to the park.

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.

What CP is like for me

This is my contribution to a project of a new charity – Adult CP Hub.

Adult CP Hub

They are looking to bring awareness to how damn hard it is to age with this condition and I need to get behind it or I’m doing myself and my baby a disservice. I really look forward to seeing the finished film.

I wanted to share my video because it’s the easiest way to articulate some of the struggles I am having at the moment. This, right now, is me.

Please excuse my wonky eye… that would be my squint, I promise I am trying to look at the camera!

My Squidge, My Sunshine

So, it’s 7:38pm. Squidge took herself off to bed without a fight at 7:02pm. Winning. It’s midweek, so these are my 2 days at home with her and Kev’s working late both nights. Which means Mummy has to step up.

And honestly, Mummy’s not been doing so well recently. A very dark and heavy cloud has been taking me over. It’s so hard to explain anxiety, but it makes the smallest things the very worst things that could happen. It means you understand logic, but disregard it because the fear is all consuming.

I made the decision to take myself to the doctor and say that it was getting too much to have my head always full with worry. The doctor was very kind. She told me that I shouldn’t tear myself down because of the cerebral palsy and that, with or without it, all almost 2 year olds have the potential to be little psychopaths that put mummies on the edge. But she saw my anxiety (the anxiety that said I should just cancel the appointment because if Squidge wouldn’t put her shoes on, then I was going to be late, and what sort of mother is late? I know the answer is all of us, but I just couldn’t feel it at the time.) She is going to refer me to the Mental Health wellbeing team, which feels like a positive step. I hope I can learn to take care of me too. I don’t want to feel sad, or like my life is happening around me without me taking part.

Kev leaves late because he’s away late, and when we go to get Squidge from her cot and ask her if she would like a banana and yoghurt for breakfast she responds enthusiastically: “Ite! Ite!” Ice maybe? I ask her if she’ll sit on my lap to bum shuffle downstairs or if she’ll walk down on her own. Confidently, she says “Own” and counts to 10 flawlessly as she comes down. Yes, shameless mummy bragging, Kev couldn’t believe what he was hearing! When I put on nursery rhyme Youtube videos for her and listen to her sing along, I realise “Ite” “Ite” was in fact “I like to ite ite ite iples and baneyeneyes!” from Apples & Bananas. Quickly run upstairs and declare our child is a genius before returning to parenting for the day.

But, in the vein of taking care of myself, we’ve agreed that Squidge should join the local playgroup for a couple of hours on one of my days off, so that I get the chance to rest. (And, the way my back is feeling after today, get more regular massages?!) felt like such a failure when I talked it through with Kev, but he didn’t bat an eye, said it was a good idea. And I know it is. She’ll get to spend time with local kids as well as her day nursery. But my God, Mum Guilt really does seep into every pore.

I took her for the visit today. We were ridiculously early, so we say on the pavement outside, me in a dress that thanks to Storm Ali was allowing the whole damn town to see my underwear at the same time! It’s funny the things you learn not to care about. We played peekaboo and Squidge laughed her wonderful laugh. It’s addictive.

We went in and she was shy to begin with, knackering me out by wanting to be lifted and carried to be close to me (awww, but – my back!) But 10 minutes in, she was scoffing rice krispies from the sensory tray and trying on glasses in the play-pretend opticians, telling me that they go on your “iiiiiiii’s!” and that she looked like a “little baby duuuude!” (I take a lot of pleasure in teaching her daft phrases!)

I know she’s going to be fine.

We shared a shortbread from Greggs as a treat and I walked it off by going to collect my parcel from the post office. (Christmas shopping is nearly done people!)

Mum Guilt snuck into my ear again when I realised I hadn’t taken her to the playground like I promised. Made a mental note to take her after her nap to the one across the road. Make an appointment at the hairdressers for fringe trim (I will never ever ever touch Squidge’s hair myself… CP means shaky hands!) Make it late in the hope that the Little Miss will nap.

Take her home and she makes a happy mess of some chunky soup and after a onesie pitstop goes for her nap bang on schedule. Don’t know what this kid’s on, but it’s working. She’s been so good, lieing back across my lap to help me change her nappies, pushing her arms and legs skillfully into her clothes to help me dress her. She’s been playing peekaboo, singing out her nursery rhymes, offering me cuddles and kisses and lovingly calling: “Daddy, wherearrrooo?” before answering herself with “Daddy vork!” (See, genius!)

It’s tipping it down by the time she wakes up from her nap (still bang on time!) and she screams at me when I try and put the rain cover on, much like she did when I tried to put her shoes on. So there will be no trip to the park today. Mum guilt reminds me that the park is always first to go and I feel guilty about never doing anything with her. I have picked up a leaflet from the library though and she’ll soon be old enough for the next phase of classes, so I have some ideas.

She’s a drowned rat by the time I get her to the hairdressers in her socks and no raincover. I passed a lady on the street with a look in her eye that I was so ready for if she dared say anything. I never do say anything. I know I should, because no-one know your struggles unless you say. But she never said anything, thank goodness and Squidge was free to end up with a Mummy-esque sloping fringe because she kept batting the poor hairdresser away. Never mind, at least she can see again!

Curse myself when I realise I forgot to buy any veg and tell myself the corner shop will have it. What is it with corner shops having impossibly high steps and ridiculously heavy doors? I struggle on my own for a good 3 minutes before a lovely lady offers to hold the door. I do wonder about people sometimes, it’s not like no-one else could see me. It’s also a horribly inaccessible shop to boot, I’ll make sure I have my Iceland list next time, I’m normally so diligent about these things.

They have no veg that Squidge’ll eat. “Oh no…. what shall we eat?”

Quick as a flash (she must have seen them on the shelf somewhere!) “Beans!”

“Oh you clever girl, of course!”

She helps me make a cup of tea for us both (hers is of course, decaf!) while our dinner cooks and she dries off in her new onesie. It’s miles too big and she keeps asking me to roll it up love her, but she looks so cute!)

Now that Squidge can feed herself, mealtimes are enjoyable, because I can sit and eat with her and it’s a social occassion. She asks for “help” as soon as she needs it and always tells me when she’s getting up.

We play on the floor together. She’s upturned her alphabet bricks so we see what each of them is when we put them back in their tray. She’s so funny, not grasping that they’re all jumbled and she keeps telling me what the next letter should be. Clever girl.

We run her bath and she washes all the body parts she’s learnt from Head Shoulders Knees and Toes (and more besides) with her big sponge while we sing the Bath song (to the tune of Baby Shark, because what else is there for parents?)

I know Squidge is done when she decides to start putting the sponge and her ducks away and my God, on her tiptopes she can reach the shelf they belong on from the bath. She’s definitely going to be tall like her daddy.

We spend time saying “Bye-bye bubbles!” because it’s only proper and we put her nappy and onesie on to a Youtube video of lullabies in the clouds that she slept so soundly to as a newborn. Squidge is not the least bit impressed when I tell her this, and keeps shouting in the direction of the Google Home “OK Guggle!” because no doubt she wants to watch Baby Shark one more time to round it up to an even million for the day. But thankfully, we don’t have a Guggle Home so Mummy’s safe.

She climbs the stairs to bed without complaint and switches on her lullaby night light herself. She only cries (and what a cry!) when she realises Freddie Fox is not waiting for her in his rightful place in the cot. Freddie came in Squidge’s first ever parcel the week she was born from my best friend. I love that my best friend introduced Squidge her best friend. It’s quite beautiful.

I planned to fold mountains of washing before Kev gets home, but considering how low I’ve felt this week, really beginning to doubt myself in all areas of my life, I thought it really important to come say that

Today has been a good day.

Exactly as expected…

I saw the doctor for my 6 week postnatal check today. (Ha – Squidge is 12 weeks old today.)

As the title suggests, it went exactly as expected. There was nothing she knew of that could be of any help to me as a disabled mum. I hoped for it. But alas. Still feeling like the only disabled mum in the world.

I didn’t have to go through the rigmorale of taking Squidge with me in the pram thank God. Kev had the day off to take the car to the garage, so I didn’t need to steel myself to drop the damn frame on my head again.

Other mums had warned me that the postnatal check was just to inform me that I am fertile again and to protect against any more baby Squidgelets. Hormonal medications have always messed with me, so that pretty much only leaves condoms, which thankfully Kev is fine with. I always find the idea of discussing contraception odd though. I think it’s because it’s so easy to get a hold of. I genuinely don’t understand how anyone in the world doesn’t understand that being a fertile human, you have sex, you will get pregnant (and die – Mean Girls.)  I don’t understand how people rock up on Jeremy Kyle every morning utterly bewildered by these, the mot basic facts of life.

I had far more pressing things to discuss in my precious time in front of the doctor. Literally sat down and as soon as the words “postnatal check” were out of her mouth, I literally said: “We’ll be using condoms. Now please help me with the pain I’m in.”

Pain in itself is not a new thing for me. It’s existed within me at some level my whole life. In fact, it stopped being pain a long time ago, it’s just another feature of CP. But in the last few days, my right arm has been hurting, from my shoulder down to the bend in my elbow. I get frightened when things start to feel wrong in my stronger side. If my stronger side is buggered, then what exactly can I rely on?

I explained that I thought it was coming from the strain of only being able to lift Squidge’s weight with my right arm. I didn’t mention my stork lifting technique, although now I think about it I can’t think why, maybe I feared being told that was a stupid way to do things. But this doctor was kind and patient and sympathetic at least. These attributes helped me understand why she was running 25 minutes late – what doctor is afforded time for her patients these days?

She studied the range of movement in my shoulder and told me I have an inflammed rotator cuff and that taking pain killers as I am is probably the best course of action and that stronger treatments like steroid injections were not really options until way off in the future should I tear. I’m not entirely sure if that means I just have to carry on until I have done myself that level of damage. It worries me. I kept saying that Squidge couldn’t rightly stop growing or getting heavier or needing me to care for her and that I didn’t know what to do.

Her suggestions were logical but impractical – essentially get someone else to lift her when I feel I cannot. But when Kev works full time?

Neighbours? *shudder* How intrusive. Besides which, we’ve only recently had a rip-roaring alcoholic moved on from our street and I’m pretty sure our downstairs neighbour work full-time, as well as English being their second language. What do I do? Ring their doorbell, thrust Squidge at them pleadingy and just retreat upstairs?

She asked about the charities. I explained about there being no provision for adults, never mind parents and how alone this made me feel. I mentioned my health visitor’s work to involve social services and the doctor said she’d try and chivvy this along when I said how anxious I was about an unsupported and unlimited wait. 

Next she asked me about my mood. I felt my voice waiver, tears threaten and probably overstate my love for my little girl. “I love being a mum. I couldn’t be more in love with her… but I worry I can’t physically be enough for her. She will get bigger and stronger and I can’t match that. Nobody seems to know what to do for someone like me. I’m just not bad enough but that doesn’t mean I can do this. Nobody knows what help there is to ask for. I feel like the world is laughing at my choice.”

She put her hand comfortingly on my arm and said “You absolutely have the right to a child.’

Nice sentiment Doctor, but it doesn’t seem as though the world agrees with you.

“I just want to be able to take care of her. Feed her, hug her like she deserves…. she didn’t ask for me to be her mum.”

“Don’t say that. I’ll do what I can.”

Problem is, as kind as she was, that consultation ended with “If you don’t hear from me, assume I found nothing.”

Well quite. But why is it this way?    

Apparantly the pain in my shoulder could affect anyone, disability or none. Apparantly, my concerns about being good enough for my daughter are the concerns of every mother.

I can’t quite appreciate these sentiments either. Because not every mother faces the challenge of parenthood with the disadvantage of existing pain as I do, or not knowing how to adapt when new ones arise to compound a situation that is never going to change. Apparantly, I should find it physically easier when Squidge is more mobile because she won’t need lifting or carrying.

I smile. I agree.

But she’s wrong.

For when Squidge is mobile, I’ll likely not keep up, or I’ll trip over her, or she’ll pull me over when I’m trying to keep her safe at the roadside. And realistically, we’re a long way off my little girl understanding why her mummy is different. I hate that I have to make her not only understand this, but be accepting of all the limitation I will place on her life too as her caregiver.

Apparantly she will adapt to me. Maybe.

I shouldn’t be thinking so far ahead. But how am I supposed to cope, or know how if I do not pre-empt?

There’s no call coming from the nice doctor to make this easy on me. 

And even if Squidge’s coming independence was enough to do it, she’s 12 weeks old for god’s sake – what do I do for the year or more before she is there? No-one understands that day to day struggles are just that. Here all day, every day.

Sympathy only goes so far.

And honestly, I’m sick of so called professional telling me how it will be. Almost apologetic, it’s always able bodied people telling me how I will be affected. Really, what can they know?