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.

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.

#inthisforme

#inthisforme is my little mantra. My reminder of the fact that whilst everything I try to do is to show Squidge that she can do anything, it is important that I know it of myself too. It is something I have really struggled with all my life, but thankfully has never been something Kev has been willing to accept as part of me.

And in July, I had two epic wins, all for me!

1) A distinction

I’ve just finished my 3rd year of my Open University degree. I’m doing it part time to fit around work and the baby, so I’m actually only halfway through. But this year is the first year that has counted towards the eventual degree classification I will receive in 2021. And I’ve worked hard, pushed myself and really enjoyed the year. The subject was Childhood and I just find kids in general fascinating, so I got stuck in, tucking myself away in coffee shops and doing my best to learn from the feedback I got through the year. I wrestled with my first 3,000 word essay for months or so it felt – but it paid off – 83% and a distinction overall.

Really looking forward to next year!

2) My driving licence

This one has been a longer time coming than even my part time degree will stack up to.

A whole seven years after finally agreeing to get my provisional licence at 22 and some very on and off tuition, I passed my driving test in July! It was my 4th attempt since November 2017 (though we’re counting it as 3rd in my house because the 1st one was the old style test now!) and I finally passed… with only 3 minors as well.

I could already hear the examiner telling me “I’m sorry to tell you….” so when I actually heard “I’m pleased to tell you you’ve passed!” I barely believed him! I couldn’t have ever got there without Kev coaxing and encouraging me to get out in our car. It is a very big responsibility, especially now that I’ll be able to put Squidge in the car, but it’s so exciting that I’ll be able to get out there – all by myself. Going to build myself up to that though…. don’t want nerves getting the better of me like they did for all those tests.

I went for the automatic licence in the end – so much less stress on my weaker left side.

We went out and bought my very first car – so exciting. We’ve worked out that fatigue limits my driving to about 45 minutes a time and that’s fine, I only ever want to get to work and Squidge’s nursery 20 minutes away, or maybe zip up the M5 to see my family. That amount of freedom alone is priceless. I drove Kev & Squidge out for dinner 10 minutes down the road last night…. Kev was so excted to not be the designated driver for the first time ever. And tomorrow, Kev will jump in the back and I’ll drive to work and nursery for the first time.

Honestly, if I can do it after all this time, I promise anybody can.

Be #inthisforme

Becoming herself

In case you haven’t guessed by now, I am completely in love with my little girl. She is so many things to me; so many things that every other parent in the world would insist their precious ones were to them. But, somehow, I truly believe that Squidge means more.

She doesn’t yet know that she is the reason I get out of bed. She is the reason 6am starts with a head over the cot shouting “Hiya! Hiya! HIYA!” down the corridor is fine; even when all you wanted was to have the first wee of the day in peace. I love the structure and reassurance she brings into my world with her very existence. I know who I am with Squidgelet, what’s expected of me and I take pride in doing it all well.

Seriously, all of it. Getting her a cup of milk. Making sure she gets her 5 a day. Making sure she goes outside and sees our little corner of the world to call home. Making sure she smiles every day.

Although these things may seem simple, sometimes, they might as well be the hardest tasks in the world. Keeping house and raising happy healthy babies are jobs so many of us undertake. I often wonder how anyone could do it alone. Kev comes from a single parent family. I know he sees his mum as a beacon of integrity and accomplishment. The lady did good.

And of course, I’m lucky enough to have Kev. I’m equally lucky to be a part time working mummy, so I’m the one that gets to have days at home with her. And sometimes, those days can be lonely, because it feels like all the responsibility is mine. But also, sometimes, I look at my baby and realise, with a mixture of absolute pride and complete nostalgia, that she is a baby no more. I’ve been saying this – and believing it too – since she was about 6 months old. But it is so very true now. My baby can do so many things now.

  • She climbs up and down the stairs herself – or she’ll copy me and shuffle down on her bum
  • She’ll sweep the floors with a brush
  • She’ll put every nappy in the bin
  • She’ll lift her arms to help me dress her
  • She’ll take my hand and take me to her cupboard full of snacks and toiletries – normally for a biscuit, but she’ll go and collect her toothbrush at bedtime
  • She’ll take the washing in and out of the machine on demand for me
  • She’ll grab the milk out the fridge, flick the kettle on and put the tea bag in the cup
  • She will unfold her nappy for me, lying back on the changing mat.

She is so helpful, so capable.

And I am loving it. Because being her caregiver is getting easier and so much more enjoyable. She’s so engaging, scrambling up my lap to eat her toast at teatime, or bringing me her shoes because she’s ready to go out.

I am so enjoying the days I get at home with her now, especially with the nice weather when we can just pootle into town or go to the swings.

Because of her, I have developed a concept that helps me recognise how well we’re doing together.

#mummywins

Mummy won last week when for the first time, I took her to GymTots by myself. Gymnastics softplay, and when she’s a bit older she’ll be able to actually start gymnastics class. I’m so excited for her to start trying different things and finding the things that make her busy and happy. At Gymtots, she tears around on all the mats and play equipment. When she was smaller, I was so scared I wouldn’t be able to keep her safe. But she loved it, climbing up the slide over and over. Then we went to the shops.

Today, we did the same and I even managed a proper conversation with another grown up. That’s a big deal for me, I get so shy and stressed out. So not only did I manage to get Squidge out on time to attend a class, I walked us there and managed to be sociable! Major wins for me.

Yesterday, it was raining, so we got on the bus and went to the supermarket. I always deliberate try and leave a couple of things we need from the shop so that I have to get her out. Poor love got rained on a bit and by the time we were done it was lunchtime. And truthfully, I was dreading waiting for the bus home with poor Squidge getting hungrier and hungrier and more irate. All we had yesterday was time. And so, I made the decision to buy us lunch in the café.

That’s the first time I’ve ever felt brave enough for us both to eat out. It was a different situation when all she needed was a cuddle and a bottle. She needs constant supervision with her food now and I get so swept up in running round after her needs, I often forget my own (plus side of that is I’m grabbing lots of fruit on the go and have lost a few pounds!)

But she was brilliant and it was such a lovely time to spend with my poor drenched girl. I am so grateful to have this time with her, because it is so awesome to spend time with this little person. That’s what it is. Not just caring for her. But sitting across the table from her, letting her steal bites of my lunch and asking if it tastes nice, hearing her go “Mmmmm!”

I am having so much fun being Squidge’s mum. And I feel so proud of myself each time we get out of the house. Between us, we’re gettig this. And that’s why #mummywins