Mummy’s medicine

Pain is a huge part of ageing with cerebral palsy. Whilst its omnipresence is unavoidable, the levels of pain I wake up with every day are unpredictable and draining.

The impact on my emotional wellbeing is getting larger every day.

Yesterday I woke up with very painful tension in my neck and shoulders. Movement was too hard and I was reduced to slumping on the sofa.

Kev climbed in behind me and began to massage the tension. I cried out in pain.

When she was younger and Squidge’s saw that, she pushed Kev away, shouting “No Daddy!”

Yesterday however, Squidge saw and heard my pain and climbed into my lap. She wrapped her arms around my neck. “Ohhh!” she sang empathetically.

But I struggled to hold her as Kev continued apply the necessary pressure to my stubborn muscles.

“Oww!” I whimpered, unable to hold it in.

Squidge pressed her hand tenderly to my face, stroking my cheek as she asked: “You OK Mummy?”

My heart swelled as she worked so gently to distract and soothe me. I didn’t want her to think that her daddy was hurting me so encouraged her to climb into Kev’s lap and feel the tension for herself.

She knew what the solid lump was as soon as Kev helped her feel it with her little hands. “Mummy ow!”

“Yes baby. And Daddy is helping take the ow away for Mummy. It is Mummy’s medicine but Mummy is not very brave, so Mummy say ow.”

“Do you want to help Daddy give Mummy her medicine?”

“Yes.” she said, hands poised in the same position as Kev’s and bless her, she started pushing gently on the lumps.

Kev’s pressure increased, needing to use his elbows. So Squidge climbed down.

“Ow!” I cried out loudly.

But Squidge frowned, telling me sternly: “No Mummy. No ow. Mummy’s medicine not ow.”

We laughed together. Our wonderful girl had listened so well. She knows that medicines exist to make us better. Therefore, we have already taught her it is useless to give into pain.

I like that. Our parenting means thst she already knows that pain is there to be pushed through.

We’re not going to be defeated. Mummy must take her medicine.

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!

I am too important

I fell over in the supermarket last week. It was not my fault. This I know – displays should not obstruct aisles to the point of injury.

And yet, as I sat on the floor recovering, flanked by 2 lovely strangers who stayed to check I could get up safely, familiar feelings crept in.

Embarrassment. Vulnerability. Shame.

The dull ache of whiplash and resultant stiff muscles ruled my weekend. I cried all weekend, so overwhelmed by misery.

I hate to feel useless. But I feel it more and more. My confidence, ever fragile, is destroyed by every fall. I am going out less and less. I can feel the independence I wrangled for creeping away from me, each of us withdrawing into ourselves. We’re separate again now, you see.

That’s not OK. I grieve every day. I was never allowed to recognise that process when I was younger. I was supposed to be grateful that I had legs that worked and that wasn’t worse. I have been haunted by “it could have been worse”.

I don’t try and deny that grief anymore. I think that by accepting it and letting myself say with the finesse of a child that it is unfair, I am saying it cannot overwhelm me.

Sometimes it still does, this weekend being a prime example. So overrun with emotions – shame and hatred among them – I was desperate to lash out at the body that fails me and punishes me in doing so. Rationally I knew it would achieve nothing, but I was so overrun with hatred for the body I can never turn away from or escape.

It gets so very lonely, being on the fringe of so many parts of society. I can be disabled… but I can walk; I can be a mum… but I walk funny. I’ve never been able to fit anyone’s view. And it has broken me. All I have ever wanted to do is fit.

But I will not. Denying my reality is causing me so much pain. I already have so much pain. I do not apologise when I say I cannot live like this anymore.

I cannot live with I can’t. All that makes me feel is that I can’t be society’s perception of what I ought to be. But I am learning that other people cannot validate what they haven’t come to understand.

I don’t want to waste away here, resenting the safe haven of my home. That is not enough for me. But I do need to feel safe. And so I have finally decided to invest in a walking aid. The thought even as I write that makes me shudder with the embarrassment teenage me felt so acutely when I rejected the option.

But it cannot serve my pride in this way any longer. If I stop living, Squidge misses out too and even if I have to accept a decline so young, I will never accept its effects on my darling girl.

So I’m going to safeguard my independence however I can and teach Squidge that all expressions of emotion are OK, are healthy if they are being processed.

I fully expect that one day she may not want to be seen with her mum and a walker and that’s OK. I have to deal with the disability whatever, so there will be nothing I can’t deal with in her honesty.

But for now, I choose to let this decision empower me. After all, if it helps me carry on, then that’s all that matters. A wonderful friend said to me today “It is not for all the time. Often, it is just a visual reference to inform others you need more time.” Disability is not the either/or scenario I have always imagined. We can work with it. I hope. It feels positive to feel even that.

I am making a choice. I am important. I will shout for what I need. I will teach my girl to shout too. We will muddle through. As Squidge would say (to)”getha”

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.

Please, Ask Me What It’s Like to Be Me

This is written from a place of emotion. CBT tells me that I shouldn’t always listen to my emotional voice. It’s loud and often angry. Mental equilibrium is achieved by letting the rational voice in, to quieten the emotional voice and calm the mind.

But, what I have realised is, my mind cannot be calmed if it cannot believe it is in charge of my body. It doesn’t. I don’t. So, this comes from a place of struggling, of raw pain. Of wishing there could be just a little more understanding.

I offered some insight into my life to a hard-at-work author today, who wants to portray someone, like me, with mild CP in his book. I haven’t seen many such characters (though maybe that’s on me to widen my reading, I get that). But talking to him, telling him my truth was strangely cathartic. I was glad I did it.

See, a lot of my historic experiences have shown me that society believes (and the media often expects) that one disabled person can speak for us all. For me, that figurehead seems to be Tanni Grey Thompson. A very accomplished woman. I will not insult either of us by calling her inspiring. To me, she is just a woman living her life as best she can. After all, that’s all any of us can be right? But to the media, she is the person to (literally!) roll out to explain any disabled related issue to the rest of us. I got sick of the sight of her on TV to be honest and the poor woman has done nothing wrong. But the point is, she does not speak for me, even on the occassions when our opinions align. For starters, we have very different conditions. Tanni has spina bifida. I do not. She uses a wheelchair. I do not. Not all the same see?

I cannot speak to the life experiences of every disabled person, or even every person with the exact same condition as me (spastic diplegia cerebral palsy, in case you wondered). Cerebral palsy has many types, on many spectrums and effects each life differently.

I spent my teenage years, my physically better years pretending it wasn’t there. I’d cry everytime I caught sight of my scissor pattern staggering in shop windows, because that wasn’t the person I was in my mind’s eye. To me, so long as I cou;dn’t see it, I was the same as everybody else.

Except, now, I know this is the wrong approach. The physical toll has worsened. I live in a body worn to an age about 20 years above my documented age. Now, I live in fear of aging. I will not die any sooner as a result of my condition. But at 60 years old, I will likely feel as most people do physically towards the end of their lives. I will be facing, statistically, another 15-20 years, a gift I’m sure. Except, what does 20 years past the end of life feel like? No-one can know can they? I am terrified.

And that’s not what people want to hear. People want to tell me I’m strong and brave and quite frankly, I’m sick of it. Those are token words, they are not what I feel, not by a long shot. I’m not living this life because I’m strong or brave, or (shudder!) an inspiration. I am living this life because I have a family and dreams to live for. Because to not live this life takes away the pride I feel at belonging to them all. I live this life simply because there are people too important to not be here to love and enjoy.

I suppose the argument I have with myself, rightly or wrongly, is that people hide in these platitudes because they cannot know what it is like to be me. I get that. But please, please don’t be afraid to ask. If I’m having a good day, I’ll say it is what it is, that my husband, my daughter are all the reason I need to be OK with being me. If I’m having a bad day, I will probably cry. I will tell you I’m sick of being constantly sore and I’m too tired to do this anymore.

I realise how awkward it might make you feel. No-one really knows how to fix another do they? And I know I cannot be fixed. I long for it and I will not apologise for it. But I know in my heart that it is not a realistic expectation and am moving to take positive steps in self-acceptance, because I feel this is something I really need in my life when the prospect of living a long life has the power to frighten me so much. I have a lot to live for, but that doesn’t make the act of living any less hard.

So, if I’m in tears, if I can’t do this anymore, please don’t shy away. These limitations can be incredibly lonely. I don’t expect the world to fix me. I just need someone to ask, to wear an empathetic/sympathetic face. You don’t need to tell me I do “so well”. I need you to recognise that this is hard, to tell me that the constant struggles are rubbish and unfair. Everyone understands how hard life can be? How unfair?

Please don’t be afraid to ask. To hear. I will always fight on another day. I have things to fight for.

But sometimes, I just need someone to join me in a beaten heap on the floor, someone to help me get ready for the fight again.

#mummywins

I try to do my best by this one every day. Every parent does. But sometimes, I am so physically wrecked I can’t lift her for the cuddles I so want to give her and sometimes she settles instead for gently stroking the bruises that appear everywhere from my falls. “Aww Mumma!”

And sometimes we have days where #mummywins

Today, she helped me put the washing on, she flicked the kettle on, got the milk out the fridge door and put a teabag in a cup for me.

She held up her feet while I changed her nappy, stretched out her arms slowly to help me dress her and went to get her shoes.

And so today, I felt brave. I took her to a gymnastics soft play down the road. All by myself. I’ve always been too scared to go alone… scared I’ll be in too much pain to chase her, unable to keep her safe.

But she clambered up the ladder of the slide before I could even ask if she needed help. Look at her 😍 She deserves every second.

I have such an independent, helpful understanding girl. I am so ridiculously proud of her and so happy when we can share days like today.

Today, Mummy wins.

Image may contain: 1 person, sitting, child and table

Image may contain: 1 person, sittingImage may contain: 1 person, child and indoor

Being gentle with Mummy

In the last 48 hours, I’ve fallen over twice. I don’t fall much, but when I do, I do it spectacularly and more often than not, give myself some degree of whiplash which makes it hard to use one of my arms because of the pain in my shoulder.

Yesterday, stood in the hallway coming in from my driving lesson, I kicked the box that contained our new blinds. I hadn’t moved them since taking them from the postman the day before. I went sprawling, sobbing even before I hit the floor I think. Pain coursed through me, shock making the tears come thick and fast.

What’s funny (not haha funny!) is that I always have a half-second where I’m very aware that I’m falling and try my best to protect myself on impact. In the next half second, I’m always so angry, like I can be surprised that my body has let me down again. So angry, pummeling the floor as I sob in pain and fear (of the pain, what a hideous cycle this is!)

Normally, I get up onto all fours and just get up. But my knee is throbbing (it’s now four different colours of gross) and I can’t. So Kev has to help me as gently as he can. I don’t move much for the rest of the day, it’s OK. Sit in a coffee shop writing notes for my next essay. A few twinges in my shoulder (I didn’t drive because I couldn’t turn my head all the way to do blindspot checks) but hey the pain is a lot less than I’d reckoned on.

Today though…

I have piles of clothes on the floor and we have many rounds of Squidge’s clothes in soak because she’s had some loose nappies recently and we never know if her sheets are going to be baby-poo free each morning (three mornings now, not so much… ah the joys of parenting) so I decide I must get some washing on.

I try and lift the tub with the clothes in soak down to the floor so I can put them in the washing machine. But my shoulder doesn’t quite make it and so I drop the tub, sending a river across our tiled floor and I know I’m going down too. I really struggle to get up even with Kev’s help because it’s so damn slippery I can’t plant my feet. Being me, I don’t have many options with how I’m able to do things like that.

I sob for an age. Kev has to go and get me dry clothes and I can’t even bend down to put them on because my shoulder hurts and my balance is rubbish. Cry harder about how I just want “to be able to do something… have clean clothes and lift my baby… not be a useless lump.”

Kev helps me dress. I feel so incapable but he tells me I mustn’t waste my energy, or be surprised it was hard to lift something heavy when my shoulder’s already hurt. I know he’s right. He is. But it still takes a long time to stop crying.

Kev goes and gets Squidgelet from her nap. She clambers over me on the sofa because Kev has his phone in his hand and of course, she wants to play. She normally struggles to pull her legs up behind her on to the sofa.

“Kev…” I start. “I can’t… I can’t lift her.”

But before either of us have to make moves to try and help her… she’s done it. She’s put her hand on my bruised knee and I wince.

Kev says: “Watch Mummy’s knee.”

Squidge is learning that if she has anything to say sorry for, she must stroke the person softly to apologise. We (all) call it “Awwww!”

My beautiful girl looks at me as I tell her “I know it looks strange at the minute baby, that’s because it hurts” and then she gently strokes around the shape of the big ugly bruise on my knee with her finger, saying “Awwww!”

I love her so much. She is such a kind little soul.

She brings me her shoes when I ask for “Immy’s shoes?” and even puts her arms up against my neck so I don’t need to put my back (or more importantly, neck) into lifting her on to my lap to put them on.

Kev’s taking her to Nanny & Granddad’s so I can finish my essay notes in peace. But Squidge takes my hand and leads me to the door to the hallway. She looks back at my feet, carefully watching what they do, as if she’s checking I won’t fall. She gives me a kiss goodbye when I ask and then carefully walks herself down the front step with Daddy, shouting “Bye-bye!” back to me with a wave. I love that in my rubbishy days, when all I want is a different body, this little girl reminds me why it is OK to keep being me.

Her nan said to me the other day, having watched Squidge bring me her shoes on request: “She’s learning you’re a little different isn’t she?”

“Yes,” I said with a smile. “She’s so helpful.”

And so thoughtful too. She is beginning to know when I need her to be gentle. And that might be a lot to expect of a 15 month old, but she’s taking it in both our strides. She knows what it is she needs to know with me as her mum