WOW – I’ve got to speak in public!

Tomorrow, and the day after that, I have to speak in front of an audience. I say ‘have’ – I was asked and I said I would. Slightly wondering what on Earth I’ve got myself into. Am I going to be well out of my nervous depth?

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I am going to be part of two discussion panels at the WOW – Women of the World festival. Click the link to see the website and what it’s all about but, essentially it’s a festival celebrating and discussing all things woman – what women experience specific to their sex and gender, how perceptions of women are changing, what sort of power women have and how things that only women can physically experience, like childbirth or miscarriage, can affect both women and society as a whole and how these things are changing rapidly. Both for better and worse. It will be fascinating, to say the least, to be a part of this and also to be part of the audience for other parts. I love seeing how the way humans exist differs from culture to culture and I think I’d like to go to the festival even if I wasn’t involved in it. In the news today they are discussing how 1 girl in 10 in the UK doesn’t have access to appropriate menstrual products. How is this even the case in 2017?

I was approached by one of the lovely programmers who had read my blog, and she asked if I’d like to be involved in both the Birth Stories panel and the Disability, Women and Taking Action panel. I could’ve chosen to not take part, or even just speak at only one discussion, but both are so important to me and how my life is currently turning out that I felt like I should do both, or I’d really regret it. I’d kick myself if I was to watch someone else possibly with a disability talking about their experiences of childbirth, in the UK, and think that perhaps I could’ve added something worthwhile, or something people should hear (god that sounds knobbish).

Anyone who knows me probably knows that I don’t often partake in public displays of verbal discussion – I used to find any reason at all not to have to read aloud to the class in school, college or university, my mum had to recite the Brownie Promise* for me when I was a child because the idea of everyone looking at me while I spoke made me burst into tears. And although my partner and I will be getting married in the near future, the thought of being the centre of attention and then having to speak ACTUAL WORDS in front of a group of people gives me the heebies, and even the jeebies. I think I might get married in a cupboard. [*I’ve just watched some videos on YouTube of girls doing their Brownie Guide Promise and I’m a little freaked out at how archaic and cultish it seems!]

So tomorrow I shall be talking about my experiences of childbirth (involving my own children, I don’t quite remember my own birth). I LOVE talking, very openly about pregnancy and giving birth. That is when I’m only talking with one or two people. But maybe I won’t spontaneously combust and I will find some legible sentences from within, to talk about something that I love so much – giving birth to my own children. Giving birth as a severely physically disabled woman was always going to be a bit of a science experiment for me and I think for the medical professionals too. but it went surprisingly well compared to what I imagined it might be, so that will be my angle of discussion – The Science Experiment of a Disabled Woman Giving Birth (Star Wars font please) Hopefully, people will be able to hear me, I’m told there will be microphone technology!

On Sunday, I will be talking alongside more lovely ladies including Liz Carr (of stand-up comedy, disability activism and Silent Witness fame). We will be exploring how often it is disabled women who are left out almost entirely when it comes to the Women’s Rights Movement, and what some of the key battlegrounds are around being female and having a disability. This will involve talking about anything disabled women experience from education, healthcare, finding and sustaining a career and attitudes from people that along with millions of others, I experience on a daily basis. Something as small as a shop assistant addressing my PA instead of me is only the start of it. I think my angle for this talk will be about wanting my life with a disability to just be as easy or as difficult as if I didn’t have a disability. I don’t want to be seen as an inspirational person just because I have eaten toast for breakfast without crying about being disabled. Although come this weekend I may well be blubbing into my morning cup of tea.

I will update in due course with how successful this weekend was….. ahhh.

@shopgirlygm

Insta – @lizzybuntonvlogs

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Being Mum: Rehearsal In Progress

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It’s Mother’s Day in the UK today, and there’s lots I could talk about when it comes to being a mother.

I have three kids, ranging in age from 6 years to 7 months, with  3-year-old in the middle. When I was first pregnant with child #1, it was exillerating, exciting, scary, and new. Nothing had been experienced before except through observing other pregnant people around me, but nothing was to prepare me for what was really to come. Six and a bit years on, I’m still pretty much winging it at times, with the occasional moment of knowing what I’m doing.

With my eldest when she was a baby, I worried about everything – whether she had fed enough, whether she was putting on weight quickly as she was a tiny baby, whether I was doing the right thing by feeding her and putting her down, and letting her cry – because she’d fed and her nappy was fine so what else could she need at 2am apart from sleep? She surely had to understand as early as possible that cuddles and attention in the dark hours was not going to happen. Some people I spoke to agreed, and had similar sleep routines, and some had different opinions on how much attention a baby needs after feeding and changing had been sorted. I was pretty sure we were doing it right, although it was nightmarish at times and we were both shattered. But when we considered the alternative – co-sleeping or something similar and in the attachment aisle of the parenting shop. We got though the baby stage and came out the other end with a baby who slept quite reasonably by the middle of her second year of life and we had our nights back.

Then we had the sensible idea to bring another screaming human science project into our house. ‘We know what we’re doing….maybe’, we both thought at times, and we often heard people say something like ‘oh you must know what you’re doing if this is your second baby!’ Nor necessarily true but I could kind of see where they were coming from. With the second baby some things are very familiar, and some things come back quite easily like breastfeeding, which my second daughter took to like a baby to a boob, with no issues whatsoever as opposed to the first time around where I stressed more than anyone needs to, over getting her to latch on properly, being scared by hospital staff that she’d need ‘topping-up’ with formula in ber first few hours of life as she had not had many long feeds from me. Nowadays I know that that particular bit of advice was unnecessary and I needen’t have worried about her not feeding enough right from the word ‘go’. Of course babies need to feed, and to increase their blood sugar, but considering that their stomach at birth is literally the size of a small marble, there really was no need for me to cry over the fact that she hadn’t guzzled all 2oz of formula after a 5 minute feed from me, only for her to throw it all up everyhwere after. I probably would have too if I’d been made to drink about 5 x the volume of my stomach in one sitting. So with daughter 2.0 this part of parenting was a lot less stressful. Don’t get me wrong, the times they throw up an entire boob of milk before bed when they’re bigger, is definitely a pain in the neck, and there were many rimes when I’d worry that she had not eaten enough, and slept too much, but for the most part, a lot more successful.

With daughter #2, I was also a bit more easy going when it came to sleep. I’d still want her back in her own bed after most feeds because it is my bed and I am selfish – but in the very early days and for the odd night thereafter if she spent most of the night in our bed, co-sleeping as they call it, then that was that. She’s 3 now and has been in her own bed sleeping perfectly normally for at least 2 years, only stopping our bedtime feed at 2.5. I knew we had approached sleep better this time around, but I do have a lingering guilt that in fact with our eldest daughter, she was not sleeping at all badly – she was a baby and babies wake and need a cuddle. The problem really was that we had been conditioned to believe that from a few weeks old babies should be able to sleep solidly. Complete rubbish.

Now I’m on child 3, this time of the male variety and pretty much every situation is sprinkled with a generous layer of salt, rathet than a pinch. He spends the first 2-3 hours in his cot and then camps next ro me with my boob in his face for the remaining 6-7 hours. We both sleep better than if he was going back into his cot after every feed, there is minimal night hour crying and despite my bedsheets smelling more sicky than I’d like, it works for now and I know that he will sleep just as well as his sisters in the next year or so. So whilst the reality at the moment is that I share my bed with a sweaty 20lb boy most of the night, with his Daddy the other side of me, I know that reality changes very often and soon it won’t be like that.

Six years on from my parenting birthday, I have come to realise that children are extremely cute as babies, even when they grin at you with your nipple clamped between their gums. They are cute at times over the next few years, interspersed with moments when they might behave like a complete A-hole, but also have the capability to make you feel more proud than you thought was biologically possible, like when you leave them at their school on the first day of term.

How on Earth did we make it this far? I cannot for the life of me keep a house-plant alive, and I even managed to mess up growing my daughter’s pumpkin seeds that she won in school – but somehow, between me and my partner, we have managed to grow three complete children. They’re exceptionally good looking, fantastically irritating at times, but they’re ours, and we grew them.

We are not by any stretch of the imagination experts in raising babies despite having three insisting that they live in our house. Each and every day I have moments where I shout at them to get their shoes on instead of routing through the bag of never-played-with tat destined for the charity shop and I think to myself ‘shit, that was harsh, I’m really crap at this today’, or times when all I want to do is watch a BBC drama containing strong language througout, and these two girls just sit there on the sofa looking at me like ‘wtf are we going to enjoy about this?’ and I have to consider what is more important – my anticipation of finding out who killed Kay in ‘The Replacement’ or my darling children’s quality time with Mummy? Of course, it was spending precious moments drawing stickmen with the girls and laughing at their farts – that is until I got bored and tasked them with sorting out the shoe box so I could finally watch the last 3 minutes of this crime-drama really quietly and sat ridiculously close to the TV so the children didn’t start repeating obsceneties.

I’m not sure if I’m done having babies, if we might like to add another in a few years. Either way, the baby stage take:3 is rapidly reaching the end of the first year and whilst a relief, it is also tragic and sad that there will be a time when he has his last feed from me, and one day he too will no longer need to ride on Mummy’s wheelchair because he’s tired of walking. I’m enjoying being a mum, even if I don’t always feel like a mum when I can’t do something for them, and even if I have a habit of spending the first few months after habing a baby being a miserable slug. I know now that that is ok, and every othe mum should know that too.

You are allowed to be a miserable slug, shout at your kids ‘KEEP YOUR TEETH TOGETHER FOR CRYING OUT LOUD’ when brushing their teeth, and feed them hot cross buns and popcorn and claim it as a reasonable dinner. You are shattered, look like crap and lose the will to live every hour pretty much. But you are their mum and they won’t remember all this rubbish stuff. They’ll remember you reading them ‘What The Ladybird Heard’ without even needing to see the book because you are a seasoned pro, and they’ll remember getting into bed with you in the morning because you are the perfect bookend to their wake and sleep routine.

They probably won’t remember the times you measured their height and weight, and wiped away their snot for a photo so they’d sell quicker on eBay.

HAPPY MOTHER’S DAY.

@shopgirlygm

facebook.com/haveyoutriedwalkinglately

Rock, paperwork, scissors 

My life has recently been put into a list. Broken down into a series of trivial activities which are apparently all that I am. They are assigned a figure signifying how much of each item I am entitled to do.

I didn’t ask for the list. It was given to me and maybe I should just be grateful and move on.

I asked for some help, and if you know me personally, you will know this alone is difficult enough for someone as stubborn as I. But I asked for help from the local care trust, to provide support to allow me to be as independent as I can. To not have to rely on my family and my partner to do things for me when they have their own lives to live day-to-day. My partner needs to have a full time job in order for us to afford our own home, and to raise our kids in the way we want, with the income we have. Ideally he wouldn’t have to work, and he’d be around to help me to the things I can’t do. He regularly does these things throughout the week, but he can’t work and help me at the same time. He is only one man! He needs his own independence too, I can be quite annoying. 

Of course, ideally we’d be bazillionaires, own a massive house with everything we want and need and not need to work, and enjoy doing jobs and making things better for others. We’d have a pool outside with sun loungers and a cinema in the basement with huge reclining chairs. We’d have an enormous shiny kitchen with an island in the middle and a giant oven and hob with 12 gas burners. We’d go and visit other countries and take our girls to see the world. Don’t say that’s not your dream as well because we both know it is. Nobody wants to earn just enough to get by, to co-own your house with a bank, knowing you’ll be paying back so much more than your house is worth. Groaning at the price of diesel at the fuel pumps, dreading the letters from BT to say they’ve increased line-rental prices by £2.30 more per month, to have to receive help from the state to pay for someone to take you for a wee at work. You know, the things everyone worries about. But sometimes things are necessary and for certain things we need to ask for help. 

Luckily there is a welfare state in the country I live in and for that I know I am grateful. What other people in less developed countries are lacking due to their country’s wealth or their government is sad. And I am grateful for what we have.

I will always be grateful for what I am given and it is important for me that whoever is reading this understands that. But right now I am struggling to respect the behaviour and attitudes of those in the power to give.  I am sorry that I want to scream in the faces of those people who are in a position to give me the means to the support I need, scream at them that they don’t get it. They just don’t get it. 

I am a mum. A disabled mum. A disabled mum whose two girls live with her at home because that is where they should be. So when the person who ticks the boxes on the oh-so-important paperwork suggests an  amount in the proposed budget, assigned for ‘childcare’, please, tell me how I am supposed to feel. Because for  over FOUR years, we have been explaining to those in the adult social care section of the local care trust that WE ARE NOT ASKING TO USE A PA FOR CHILDCARE. They argued with us before and after Amélie was born in 2011, with us explaining the help and support is for ME.  If MY needs are taken care of, from personal care, to helping me do the weekly food shop, and helping me carry out my role as a mum, (FYI, this falls under Adult Support services) then there are no concerns about my children. They tried to suggest that Children’s Services needed to be involved. We disagreed, as did the Health Visitor and my Occupational Therapist. Why should we be subject to being analysed by the same people who investigate abuse or lack of parenting skills, when there’s never been a concern about my kid’s welfare? Because, they were trying to get out of providing help for a disabled parent by claiming my child was ‘at risk’ if I couldn’t look after them by  myself. If they ignored part of the ‘problem’ that was my needs, maybe it would go away. Passed on to someone else with a slightly different form of paperwork. That was a fun time. It’s always nice being told you’re a risk to your own baby. 

 We pay a lot of money for our children to go to nursery when we work, that’s childcare. When I look after my children, that’s simply me being a parent. At what point have I ever asked for them to pay for someone to come in and care for my children while I sit there and have a mani-pedi? 

Anyway, back to the recent reassessment. Do you know how many hours were suggested I could or might use for ‘childcare’ (it’s not for CHILDCARE) out of the weekly amount?  

Three. 

Three hours is what this lady assigned for my role as a parent. As a mum. Three hours in a week. Of course this doesn’t mean I can only get my PA to do three hours a week of helping me take care of my own kids. It’s a figure that this person so kindly broke down theoretically into areas of the help I need, in case I can’t work that out for myself.  I ask my PA to work at certain times (usually just weekdays while my partner works full time) that I know I need help and a large part of that is to help me carry out the physical aspects of my role as a mum. Of course she does more than three hours of that. Which young children only need things doing for them for three hours a week? I guess I could only feed them breakfast on certain days, dinner on different days, send them out in their PJs a few times a week, that would save time.

Two hours a week she guessed as what I might use for ‘socialisation’. Bloody hell. What am I? A puppy? A prisoner being allowed outside with the other delinquents for a couple of hours each week, to get some fresh air in my lungs? What crime did I commit?

I promise I am not, and have never asked for anything I don’t think I need. I understand completely that this country is a little tits-up when it comes to budgeting and controlling its  spending. But I am not asking for more than I need. So why does my life have to be broken down into time and money every year in such an intensive yet careless manner? I am fully aware of the burden I place on the state. I see how much I cost them. Written down on paper just to rub it in. You know that shitty feeling you get in your belly when you know something bad is going to happen, like when you go into a chemistry exam knowing you did precisely 7 minutes of revision for? That feeling stays with me. It comes back to rear its ugly head quite often but it never properly goes away. 

So my last response via email a few days ago was reiterating yet again about the need to cover the physical help I need as a disabled mum, and I have yet to hear back about a more final figure they’ll allow me. Final. Ha. Of course I don’t mean final you silly goose! Until they decide to do this all over again.  And again. And again. There’s no continuity of care, we can’t get it sorted and get on with our lives feeling  assured. My condition isn’t going to improve, It only gets worse, so it’s like we have a general election in our lives every year, where our way of life may change in a heartbeat down to the opinion of whomever happens to get our case that year. 

In a particularly sad and depressing end to such a positive blog post, all of this makes me sometimes feel guilty for having my own children. For being a costly member of society because I selfishly wanted to reproduce knowing fully that there would be many things I’d need someone else to do for me. 

Of course, I don’t regret my children for a second. They’re a little annoying at times, waking us up in the night, puking on my face, and demanding to be fed several times a week, so selfish. But between the two of us we somehow managed to spawn some pretty cute and hilarious small people. I guess they can stay.

   
 

@shopgirlygm