The gift of… nothing

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Happiest birthday photo of Ted in six years. (Ridiculous filter appiled in an attempt to hide the mess in the kitchen!)

 

My children have their birthdays two weeks apart and this year we are doing a joint party in the middle of them, so yeah, my October posts may touch on this theme occasionally (ahem).

In the midst of my slightly angsty reflections on Ted’s birth, I realised mere hours before his special day that I hadn’t bought him a single present. Nor did I have a clue what to get him. After mulling it over, I decided I wouldn’t bother.

That sounds shocking, doesn’t it?

The truth is, I wouldn’t be buying for him. I would be buying for me. It’s a convention. A societal norm. We like to feel special and be treated on our birthdays – but as I can’t even be sure Ted has a concept of birthdays, do the normal rules apply?

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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.

A lost workforce – why mothers of disabled children give up their careers

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Inspired by this recent post by the brilliant Penny Wincer and this old one from the equally marvellous Jess (whose Stories With Sam posts are always a considered, informative, honest look at parenthood and disability), I wanted to chime in with some more thoughts on this subject.

I haven’t worked since May 2014. In giving up my job, I am one the 84% – the staggeringly high proportion of mothers of disabled children who do not work, according to The Papworth Trust. And yet, bringing up a disabled child costs an average of three times more than raising a typical child. Coming at this from the inside, these figures stagger but don’t surprise me.

Reading the Trusts’ facts and figures sheet was pretty depressing. Disability within a household brings extra costs, yet is often a factor in lower incomes and greater poverty. There’s no escaping from the fact that statistically, disability negatively affects pretty much everything from education to work to transport to holidays. That’s not to say that all lives affected by disability are sad (if there’s one thing I can’t stand, it’s pity) but it can be tough, especially financially.

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It’s hard to want to leave this face and go to work but I do want to – not least because that chair he’s sitting in (a beanbag with a moulded seat – costs around £1,400 to buy. Ouch.

Interested in other people’s stories, I asked in my closed Facebook group why other mums had stopped working, what industries they had left and what struggles they faced. The same themes came up again and again…