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!

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.

My Worst Nightmare

Yesterday, I lived my worst nightmare.

I fell over in the road holding onto my little girl’s hand.

I always have this moment where I know I’m about to fall, so try and prepare my body for the impact. I remember clinging to Squidge’s little hand and praying to God she didn’t fall too. I hit the road with a thump – it still really hurts to sit down – and heard this panicked shriek of “Mummy!”

I immediately folded my body around my little girl, guiding her to the kerb. She’d fallen with me too. I’d struggled too much to keep up with her eager little step and pulled her down. But even in that confusion, she didn’t cry. We’d be walking round the corner to playgroup and were literally one kerb away from the door.

Another of the mums saw me fall and came running over to make sure we were OK. I’d barely even registered that it was me that had fallen, or how much pain I was in. I just folded myself round Squidge, told her we were OK. Because that was what she needed to know. She wasn’t crying from her own pain. The very first thing she did was look back for me – she didn’t even let go of my hand on impact.

My little girl is a star. This was out first fall. I felt so guilty, have always dreaded the first day that this would happen and wondered how she would cope with the realisation that Mummy cannot always keep her safe. But I’m proud to say my instinct was to do just that – and that it seems Squidge’s was the exact same.

#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

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?

“Next time, bring her in leggings! “

Squidge had her 8 week jabs yesterday. She’s 11 weeks old on Wednesday but that’s another story. I hate needles though I hope the number of needles that were necessary through pregnancy cured me somewhat. I didn’t want her picking up on my anxieties so I had a lot of questions. 

How many injections? 

5 and oral medicine.

Can I feed her to distract us both?

No. By the time you get her on the breast-

I’m not breastfeeding  (and lady, you shouldn’t assume)

Still no. Put the pram here and sit there.

I had to carry her across the room. When I do that, I need a second to safely plot my course around the room. I wasn’t even allowed that second. I tried to sit in the nearest chair – the nurse stepped into my path and pointed me to a seat further away by the window. 

I’m sure she was just being efficient. After all, there’s always lots of babies that need vaccinating but in not giving me time – time even to explain why I needed time! – I felt rushed and stressed. 

It didn’t get better. Squidge’s cry at the first jab was her first ever one of pain and broke my heart. The nurse simply spun her round to get to the other leg and then give the oral medicine. It all happened so fast that I didn’t have time to try and support her head to receive the latter, even though the nurse was asking me to hold Squidge’s head up for her. It made me feel useless.
I’d dressed Squidge in a zip up sleepsuit. They’re the easiest thing for my hands. I’d exposed her legs for the jabs as requested but the nurse couldn’t find one of the legs on the suit to dress her again.

“This is no good. Bring her in leggings next time!”

I felt angry. I wanted to be able to explain about my disability but the whole experience so far just told me she wasn’t going to afford me time!

I managed to splutter: “It’s all I can manage.”

But of course, it wasn’t my notes she was reading,  that meant nothing to her and I was herded out for the next baby.

As I walked home I realised that dressing Squidge in a two piece was no good either. My stork-parcel lifting technique only works with sleepsuits. So no, I won’t be bringing her in leggings next time. I’m her mother, you can support my damn needs and decisions. 

As it turned out, most of the mothers I know said they dressed their babies the same way as I did for their jabs. So I wasn’t in the wrong. 

But of course, there will not be time to say all this “next time”. It’d be much better to wear a sign. I’M DISABLED… PLEASE GIVE ME TIME TO CARE FOR MY BABY. The absurdity of that would make them pay attention wouldn’t it?

Not that anyone seems to care. Squidge is almost 11 weeks old and I still haven’t had my 6 week postnatal check. Apparently that only covers my contraception choices. But I desperately need to use it to get pain relief and maintenance remedies like acupuncture.

Managed to book it for next week.  Fully expecting the nice qualified doctor to stare at me blankly when I ask or try and make me make another appointment. I hope I don’t lose my temper because I know I’ll burst into tears and probably get told I’m depressed. 

But I’m not depressed. I love being Squidge’s mummy.

I ache all the time.

I just want someone to help me.

I was in a fair bit of pain when we got home. I put sleeping Squidge straight to bed to rest and went back downstairs to put the pram away.

My whole body protested at this. I got the frame wedged in front of the open door’s edge and couldn’t close it without taking the frame down from the wall again.

I dropped it on my head. It hurt. I felt helpless and sobbed to myself at the foot of the stairs.

I’m in too much pain to take Squidge to baby massage today. Prepaid so I’ve wasted nearly a tenner and feel like I’ve let her down.

I know she doesn’t care really. She just wants me to hold her and feed her and tell her she’s beautiful until she goes to sleep.  I love doing all of these things.

But she is going to need me every day. Of course there is no let up with children. But that means there’s no recovery time and pain will build on pain. How am I supposed to live like that?

And will anyone believe that my frustration and desperation isn’t because I’m struggling to be a mum? Will anyone help me or just write me off as a mental case that shouldn’t have had kids in the first place?

I just want someone to help me manage my pain. That’s all. Someone to understand and not rush me.

But until then, I still need to get through the day. To provide for my beautiful girl.

And it’s so damn hard.