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Six

Yesterday was World CP Day. Any half decent special needs blogger would have had a post prepared, but I didn’t feel much like saying anything. Or doing my part to raise awareness and educate others.

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My last day with a bump instead of a baby

The last time 6th October fell on a Saturday was the last day that Ted was safe and happy in my body.

I’m not going to say that it was the last time that all was well in my world. It sounds dramatic and while it might keep people reading, it simply isn’t true. To say that would be doing Ted a huge disservice.

But 6th October 2012 was the last time he didn’t have cerebral palsy.

That Saturday night that my waters broke, starting a birthing process that would turn our lives upside down much more than the typical first baby does…. and that’s saying something.

Although the rawness of what happened to us during Ted’s birth has subsided, I still wake up a little out of sorts around this time and having the dates match up with World CP Day, really hasn’t improved my mood much.

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Today, Ted turns six. I wish I could be all ‘Six! SIX! Where does the time go?!’ but actually, it feels like six years ago that he was born. Perhaps that’s what happens when everything stretches on so long. Ted is still in nappies, he still gets spoon-fed pureed food, he still drinks formula from a bottle, he still needs a dribble, bib, he still wakes up almost every night, he still requires 24-hour care, he still hasn’t hit most milestones. He is, on paper, still a newborn.

Expect that he isn’t and I no longer dwell on this dreariness. I feel the need to acknowledge it, hence this post where I am processing my emotions through writing (my standard self-medication) but Ted is completely something else.

He is not his diagnosis.

He is not the list of conditions and issues that appear on his hospital letters.

He is not just the product of a birth that went wrong or a boy brain-injured by the errors of two thoughtless midwives.

He is a six-year-old boy. 

He is a six-year-old boy who likes to laugh at farts in the bath and his sister’s funny dancing and silly accents and enigmatic speakers and people hunting frantically for lost keys.

He is a boy with no words but who knows how to get what he wants.

He is a boy that has no need or want for birthday presents, so instead gets a big shiny balloon or two and a day out with his family.

He is a boy who smiles at everyone so broadly, that everyone stops to talk to him when we are out.

He is the boy who made me a mother. Who has shown me the very best and very worst parts of my personality.

He’s the boy I would do anything for. I know him almost better than I know myself and I want to be the best mum I can for him. I don’t care about the ‘what ifs’ and ‘what may have beens’ because we have Ted. Smiley, stubborn, vocal, funny, innocent, huge-hearted Ted.

Who happens to have cerebral palsy.

Being brave

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Well, that was a slightly longer break than intended! I wish I could say that it was because I was travelling somewhere exciting, or working hard on new projects, or spending loads of time on self-care and soul-nourishing pursuits.

Elements of those things have been bubbling away – potential new social media clients, a few short-hop days out and nights away, and the odd bit of time to myself *has* happened in the past three months… Mainly, though, it has been the drudgery and grind of life as a stay at home mum. Not that being a SAHM is always boring – and I’m a firm believer that it’s vital, important work – but in my case it has been a bit like being in survival mode.

My goal has just been to get through the day. Ted has been unhappy and in pain, causing sleepless nights, early mornings and high anxiety all round, cross words in my relationship, doubts about my parenting, an influx of those insidious little thoughts that chip away at your confidence and weigh you down. When every waking moment is taken with caring for a child (one or the other always needs something, as is the nature of parenthood) it is like treading water. It has been very tiring but I feel at last, the lifeboat is here and I’m not going to go under after all.

A dose of cranial osteopathy and some hardcore reflux drugs have sorted the boy out, for the meantime at least, so I can get back to living rather than just existing.

And lo, not only is it 2018 already, it’s halfway through the first month. The time when your good intentions may have slipped or the strict regime you have placed yourself under suddenly feels a bit too much. After so many failed attempts at diets and giving up smoking on Jan 1st in my much, much younger years, I have not made resolutions for a long time.

Instead I am using a guiding word. Do a simple exercise to find one for yourself here and I will post a video from the very excellent Lucy Sheridan (aka The Comparison Coach) at the end. My word is COURAGE. It is underpinning everything I am doing these days and for all of 2018. I needed it to get back on the horse (keyboard) and show up here again.

  • I needed it to make a tough decision about Ted’s medical care that I thought I could manage more naturally.
  • I am using my courage to tread an unusual therapy path with Ted that goes against conventional NHS thinking about physio and the body, but which makes huge sense to me and benefits him without a doubt. It involves shouldering most of the therapy work myself (though I may change that if it seems I am being a martyr or a control freak, or both, about it) and a Mon-Fri 6am start to get it done before school.
  • Courage is helping me to push myself from my comfort zone and to embrace change. This is something I always find difficult. I once wore the same homemade sweatshirt and jogging bottoms (thanks mum) every day for almost an entire summer when I was about nine. Yes, I am that cool. Familiarity is comforting to me but it also means I put up barriers sometimes. I want to be more fluid and go with the flow and open myself up to new things.
  • Courage is driving me to shout about my skills and capabilities and get a new business off the ground.

I think five years at home with children (minus nine months back at work after having Ted) and giving up a media career and a very London life to live in small-town Wiltshire have suddenly taken their toll on my confidence. I have taken steps to get back to a more dynamic, creative me. Yet, after the initial elation at passing my Digital Mums course with excellent stats and having a whirlwind time while training, I have been in a funk. Lost my mojo. Felt flat and not worthy of much. I withdrew and retreated. I listened to the negative voices. Not any more. They have had their time.

No one but me can get me out of this dark hole, so courage and grit and bit of self-love (not that kind, smutty) is what I need right now.

See you out there, somewhere?

Emma x

Is perfectionism sabotaging your happiness?

IMG_5853How often have you heard someone say ‘nobody’s perfect’? You probably accept that about your partner and your children, your parents, your best friends, your work colleagues… Everyone has their faults and they can drive you bonkers sometimes, but that’s life, right?

So do you apply the ’nobody’s perfect’ rule to yourself and your life, happily accepting your faults and being satisfied with ‘good enough’? Or do you find yourself striving for a level of perfection that you just wouldn’t expect from anyone else? You may think that wanting to be the best and have everything ‘just so’ is annoying but admirable, especially if you have come to motherhood from a competitive career. But wanting that level of perfect may just be your biggest saboteur. It can stop you getting things done and it eats away at your happiness. That’s the voice of experience speaking, by the way.