30 things I have learnt in 30 years of being me

Yesterday I turned 30 years old. I am officially a grown up. I have been always been afraid to age physically but this has harmed me emotionally too.

Last year, in a shopping mall cafe, I sat and wrote out a list of berations. I wrote myself out to be a hateful failure. For all my blessings, I was miserable, trapped in this body and more so, my head.

This year, entering a fresh new decade of living, I am proud to report that with the much needed help of the Mental Health Team I have very much separated that negative voice and now I recognise how and when it tries to sneak in and beat me back down. I have made a conscious choice not to let it win.

These are the 30 lessons I have been so lucky to learn in the last year:

  1. I am a dedicated mum

  2. I am determined

  3. I want the best for myself

  4. I am stubborn

  5. I cannot read minds

  6. The Little Monster cannot be defeated, only managed

  7. My body is not my own just yet but we can learn to muddle along together

  8. Every facet of my identity is my own. They do not need explaining to anyone but me.

  9. The truth can be a friend. I will not spare people’s feelings anymore

  10. I needn’t be embarrassed by my disability on account of people’s lack of understanding

  11. To ask for help is empowering and positive

  12. Decisions taken as a result of my limitations must always be in my best interest

  13. Self care is vital – and allowed

  14. It is OK not to be OK

15. It is vital to be able to say I’m not OK. I have a wonderful husband who wants to listen.

16. I do not need to hide this disability away because I am “lucky enough to walk”. It is mine to own.

17. Not everything is my responsibility. Disability is something society should be accepting of outright. I shall tell it as it is and it should be and no more. My energy is too precious to waste.

18. When I ache, it’s time to stop and be kind.

19. Sleep is precious. Fuck it, napping is empowering.

20. I have brilliant friends who fully support my tendency to drop in and out of their lives, energy dependent. I wish it was different but thank you for loving me regardless.

21. Pain does not have to be endured. Painkillers are acceptable and often necessary

22. I do not need to wage war with a body that struggles anymore. This is a body that has done amazing things for me and made me forever part of the best little person I know.

23. Comparison really is the thief of joy. People are living their own lives to the best of their capabilities.

24. It is no-one’s fault my capabilities have their limits. Least of all mine.

25. I hate to say it but my mum was right…. comfortable shoes and a bag worn on two shoulders is the way forward. Sorry I doubted you Mum!

26. I know this body best. There is very little point in being bamboozled by the medical terms and still not getting the help I need. No more struggling on, I will continue placing the right people and treatment around me.

27. There is pride and achievement to be found in the smallest things. Put my own hair up? Great. Put 3 loads of washing away? Awesome.

28. I will not feel ashamed for repeatedly hitting rock bottom. It is my right to cry and say this life is too hard. Because it is. But I will always fight on for my little family.

29. I will not lie. I will explain each struggle to my beautiful girl so that she understands why Mummy must cry sometimes. She will not be afraid of tears. She will know they are healing sometimes and that Mummy fights on.

30. I will always remember my place in my little family with a girl who loves me and a husband who supports and cares for me in ways I have never afforded myself so that I can enjoy our life together. I will not forget how lucky I am to belong to you both.

Here’s to a very successful 30s!

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!

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.

Just for today, I AM Supermum

These days don’t come to me often, so please just let me have this one and share in my pride.

I’ve just put Squidge down for an early afternoon nap. It’s only 12:30, but she’s been up since 6am and had her morning nap already. Still went down like an angel.

I was up before her today. No point fighting it, might as well get on. I’d made a cup of tea, put chicken curry in the slow cooker and put a load of washing on before Kev brought her downstairs at 6:30, at which point, her morning bottle of milk was already in my hand.

Smashing it. Made her a cup of tea with half of mine, gave Squidge her yoghurt and changed her bum. No dramas. She even cleaned her teeth really well.

I put her down for her morning nap, mindful that we had to be at the bank for an appointment. Place the oline order for our food shopping to be delivered tomorrow. I even tried to register for my fourth module at uni, but have to text Kev to ask for help when I can’t decide between two.

When it was time to go, Squidge pushed the pram to the door for me and climbed carefully down our front step ready to be lifted in. She is so patient and helpful with me. It makes my heart happy, like we have a little understanding.

As it was, the bank wasn’t even open when I got there, so we pootled around the pound shop a couple of shops down. Got her some fruit puree pots (cheaper than in Boots next door, despite how obsessed I’ve become with Advantage card points… I never pay for nappy cream any more as a result) so this appealed to the frugal mummy in me.

Two new toothbrushes for Squidge because she munches the toothpaste off the bristles like it’s a snack and a tiny Milkybar Easter egg for her. This is cheeky of me, because I insisted that Nanny & Granddad shouldn’t buy her chocolate and instead they’ve replaced her winter coat for us with a beautiful sale bargain. I know, March and there’s still a need for a winter coat, madness right?

Popped back to the bank and Squidge makes herself popular with everyone, waving and loudly chattering “Hiya!” The advisor helps me set up a few more “piggybank” accounts. I have to have separate accounts for everything or I’m rubbish at being careful with money – and I really do need to be if there’s ever a hope I’ll be able to give up work completely, both for myself and a new baby in a few years.

I’ve stashed Squidge’s money box in the pram. We make ourselves pay her a pound whenever we leave the stair gate open and she has the chance to bolt up the stairs! I lift her up to shake the pennies in. I enjoy myself. I really do want each of my days to be like this, to feel so accomplished.

We walk back home and stop off at the playground in our street. She looks so beautiful and happy.

Look at that cheeky grin. Everyone she meets tells me how happy she is and it makes me so proud that even I for all my pessimisms and anxieties cannot deny it. I watch her play and fall ever more in love with her. The sheer capacity I have to do this amazes me. I honestly didn’t know I could love someone so small so much. It is infinite which is probably a daft thing to say to parents, because there’s obviously no other way it could be. But I truly didn’t know. This girl makes me so happy.

“If you say 3, we’ll make 3!”

Finally, good news!

The one recommendation I managed to find on Google for some kind of parenting aids was

Retired

Engineers

Making

Anything 

Possible

They have volunteers nationally, so please do check them out!

Anything I could think of that’s not available on the open market, they’d have a stab at making. Music to my ears.

I asked for a sling built into a top, so that I didn’t need to faff with straps whilst Squidge was half asleep or screaming for a bottle, to enable me to carry her safely. I waited for them to say it was impossible, that I’d just have to cope.

But no. Roger of REMAP Newport and the lovely lady he bought with him nodded at my description and by way of reply were describing what they could create for me – a smock style top designed so that Squidge can sit forward facing with her legs dangling down in the frog position. All in one piece, worn straight over the head, no straps.

It seemed too good to be true.

“How many do you need?”

“Oh I don’t know, babies are messy aren’t they? 2, so we have a spare?”

“If you say 3, we’ll make 3.”

The lovely lady whose name I can’t remember (REMAP insist on bringing chaperones when they visit you at home, just for peace of mind!) coo’ed over Squidge – even asked for a cuddle. Squidge loves meeting new people – anyone that is willing to tell her she is beautiful, which of course she is. 

They were full of compliments for her beautiful auburn hair (God forbid you call it ginger in front of Kev!) 

I was full of praise and thanks. So far, they are the only organisation that hasn’t made me feel like me and my little girl are out in the cold on our own.

They didn’t mind talking with my babbling Squidge while I slung her nappy in the bin.

I asked if they had many requests from disabled parents. Apparantly they do, lamenting how woefully undersupported we are as a demographic. I’m relieved to know I’m not the only one out there – I was genuinely beginning to feel like it!

Wonderful people. They made the whole thing seem so easy and straightforward which to be honest is exactly what I needed at this stage in my parenting life.

I can’t wait to carry my girl safely around. I might even manage to dart over the road for a pint of milk rather than having to wait for Kev to come home.

And all from retired engineers up and down the country. They want nothing from me, other than to make my life easier because they can.

Right now, they feel heaven sent. Squidge and I are not alone! 

Well, it’s out there now!

First and foremost, thank you to everyone that has shared and supported the idea behind DisABLEd Mummy in the last 24 hours. It means the world to me!

Welcome to Sunday. I normally hate Sundays, as they’re normally just the lead in to another long week at work. It’s really not been too bad since I’ve been on maternity leave. In fact, I don’t think I’ve ever been so busy!

Not a great night’s sleep last night, couldn’t settle in bed. I tried to get some sleep on our couch and even for 5ft3 me who has always liked sleeping in the foetal position, it’s a bit snug. Shoulders, back and neck aren’t thanking me today. I made Kev swap and given that he’s 6ft, that was very mean of me, but I can’t do without sleep. Seems like I’m always on edge waiting for Squidge to wake up.

Ironically, she didn’t stir all night. Don’t worry, I’m not one of those smug mums you meet at classes who seem to have it together – little Cressida has been sleeping through since 4 weeks, oh, I barely notice the difference – the first time Squidge ever slept through, we thought she was dead(! Yes, we’re nervous parents!)

This is only the second time ever. She’s normally up around 2am & 6am for a feed. But we put her to bed at 8:30pm last night and she didn’t stir til 6am! Go Squidge! Now to get her to give us advance notice so we can plan to stay up past 7pm like rebels!

I’m having a good day if I’ve gotten dressed (bonus points are available if said clothes are clean!). But we’re all alone now – Kev’s parents have gone home to Spain – and I’m determined to keep my own clothes clean and cook my own dinner now. And Squidge, bless her, was very helpful in this endeavour. Fed and changed her by 7am and she promptly went back to sleep thanks to her full belly – I was practically a domestic goddess by 10am!

I recognise I am bragging (like the greedy sleeper mummies!) but only because I’ll likely never give myself cause to do so again, so please humour me. For day one, on next to no sleep, I feel pretty good about it.

  1. I wiped down the kitchen surfaces
  2. I put away 2 loads of washing
  3. I put away the ironing
  4. I put the next load of washing on
  5. I put chicken casserole in the slow cooker (the only way to cook when you can’t bend to the oven and are too damn shaky to pick up a knife!)
  6. I made breakfast sandwiches and tea
  7. Fed and changed Squidge again

 Only took me three hours. Result.

I’m off for a nap in preparation for our Sunday ritual of the Four in a Bed marathon!

Have a great weekend everyone!