When you have to be the birthday party mum.

It’s our eldest daughter’s 7th birthday tomorrow. 7 seems really quite grown up, doesn’t it? Like she’s not a teeny little girl any more, and is getting scarily close to 10. Which means she’ll almost be in secondary school and then she’ll be moving out. My baby is about to move out! *hysterical weeping*

She’s not so much having a party, more a gathering amongst her friends at our house where they’ll watch a movie, have pizza, throw popcorn at each other and spill nail varnish on my coffee table.

So not too much of the pressures of throwing a full-on party style party with games and screaming children (except her little brother maybe), so why am I dreading it?

I guess I’m sort of looking forward to it, but I have this big lumpy stressy thing lurking in the pit of my stomach. We’re not really like any other family, are we? Her friends all know I’m in a wheelchair, although how much she gets asked about that at school I don’t know. I am completely comfortable around my own children, and to them anything I do physically which is, let’s face it – a bit odd, goes unnoticed because to them it is normal for me. But with other children in the house, most of whom I haven’t really spent much time with, I feel like I’m going to be stared at by little girls from school and it’s quite a familiar feeling. They’ll gawp at my floppy hands and my picking up a mug of tea with both of said floppy hands… And they’ll notice they were staring and feel awkward, and they’ll think to themselves “why does Amélie’s mummy sound different?” I’ll come over to the sofa and say (after psyching myself up) “right girls, can you go and wash your hands before food please?”, and they’ll look at me like I’ve just thrown up on myself.

Maybe they won’t think that at all. There’s a big chance I’m being completely pathetic at stressing about being ‘the mum’ at my daughter’s pizza party. How ridiculous is that. Amélie won’t care at all. All she cares about is the fact that she gets to have school friends over ON A SCHOOL NIGHT, and they’ll all be really giggly and excited. I don’t want her to ever feel embarrassed by having me as her mum.

I really hope she has a good time. I hope it’s everything she wants it to be and next year mummy will be a bit more organised several months in advance and book her a swimming party. Better start mentally preparing for that about…now.

To my tiniest 5lb 10oz of first babyness… Happy birthday for tomorrow. Love you baby.

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When you’re 6, tired and hungry

We went out to watch the local fireworks last night and while we were there we bumped into one of Amélie’s best friends from school. She was desperate to try and see her friends but when she saw one of them she was very quiet, and although this little girl was so excited to see Amélie and was walking right by her, chatting away to her, Amélie ignored everything she said and just kept facing the other way.

I kept saying to her how she shouldn’t ignore her friend as she is talking to her, but Amélie remained silent and non-responsive to her friend. I felt awful for her and eventually she kind of gave up trying to chat to Amélie. It was about 5.30pm, and Amélie was both hungry and tired as her little brother had been crying in the night before. I am sure this was why Amélie wasn’t feeling very sociable when she saw her friend, but even so we explained to her that even though she was tired and hungry, she should still speak to her friends when they talk to her. Amélie has this trait where she just shuts down and won’t respond when she finds something difficult or when she’s anxious. I really don’t want this to mean that people think badly of her, or feel that she’s rude (which is exactly how I would’ve read last night’s situation).

Today, she was writing Christmas cards for her school friends and I said maybe she could write a note to say sorry in the card for her friend from last night. The picture here is some of what she wrote in the card. She went on to draw a picture of,the two of them and the words “best friends forever”.

It’s hard being 6, isn’t it?

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Sedated 

You’re given this body. It’s a bit squishy but all the parts are there -arms, legs, eyeballs, ear loabs, that pointless snot-funnell under your nose – there you have it, it’s yours to do with what you will for the rest of your life. 

So what do you do with it? If you’re lucky you’ll get one without too many snags or software issues but if you’ve been handed a wild card and aren’t quite sure, where do you go with it then?

Perhaps abuse it a little at first, break some parts as a kid then they’ll heal quickly with any luck, and when you get to your later teenage years and beyond, feed it some sugary poison and see what happens. 

Then what? You might be doing some of the same things as other kids your age and some things will make you momentarily feel as free as a bird. Like jumping on a trampoline in your purple club leotard that makes you feel really special. There’s nothing better as a child than a lycra leotard. You just want to stroke your own shiny belly and feel like you have a perfect body like all the other girls. [That sentence sounded a lot less creepy before I wrote it]. 

Unfortunately, that doesn’t last long, that freedom. Nope. It stops fairly abruptly and in some respects it feels more unfair than if you’d never had it in the first place. Nothing tragic happens, but the wiring in your body starts playing up and affecting you more than ever. You’ll be sat in the car one day on the way to the beach with your mum and you might suddenly notice that you can no longer move your little finger. Buh-Bye then. It was nice knowing you. That’s all ten then now!

Maybe a few lunchtime sessions of wheelchair basketball in school will be a fruitful endeavour. You do really enjoy throwing a smaller-sized ball in a lower-set basket. You get ‘Most Improved Player’ after a few months and then remember the irony that is the inevitability of earning this title when the only other player in a wheelchair, playing on the opposing team, is a kid borrowing another wheelchair. Now you feel like you’ve truly earned that sporting title (!) 

Fast forward a few years and almost every day, without exaggeration, is peppered with thoughts of ‘I wish I could do more exercise’. Trawling through YouTube videos searching for inspiration and finding absolutely nothing. Disabled people don’t exercise. Only the people in the Paralympics. And they are robots. Manufactured in a factory in Milton Keynes and made to order every few years to prolong the excitement of the Olympics. They don’t exist because there are no opportunities for this sort of talent to be nurtured. Or maybe it was just my luck. In the new term of starting secondary school, I was told I ‘wouldn’t be doing PE’. So that marked the end of any potential skill or ability to keep fit I may have had if anyone had bothered to try like they do with other kids. I never got to smell the school changing room sweat or be the one that put all the javelins back in their… javelin cage. 

And so the time comes around again where all thoughts of your body, skills, appearance, fitness, weight etc, are not dissimilar to that awful feeling you get when you walk into a noisy bar and there’s too much raised-voice ranting for normal people to be able to think straight and you’d quite like to turn around and walk out again. Then you see yourself sat in a chair and looking decidedly lazy and know that something needs to happen. 

Your best bet is to sit on the floor in your living room and make up exercises that are possible yet still a challenge for someone with no muscle in their legs or lower arms. Making up hybrid exercise routines is necessary because like I said, disabled sports do not really exist. You either do nothing or you go the whole-hog and break world records in stadiums. There is no in between for people like me.

Then you take your little girls to gymnastics and watch the eldest in her session, from the viewing area thinking:

“Please, please want this as much as I want this for you. You are perfect and you have all these opportunities right at your feet and you can be brilliant, so please use it. Use these opportunities and your body and your strength and all these people telling you you’re doing really well. Don’t ever stop doing it. Whatever it is.”

And that goes for all of you.