The thought-process of Breastfeeding.

So I’m pregnant. I’m excited, nervous and pretty overwhelmed. I think I’d quite like to breast feed, that’s what I will hopefully do but if not I’ll have bottles bought on standby, you know, just in case.

Meanwhile, a simple, quick and painless act called childbirth happens (in no universe EVER).

Aww look! My beautiful baby! (Tears, emotion, blood, tears, etc) I really hope I can get this feeding malarkey off to a good start. 

Okay, latching on. I’ve learnt a lot about this in antenatal classes. Nipple-to-nose, baby opens mouth wide, insert boob. How hard can it be? 

EXTREMELY BLOODY HARD. This baby is absolutely minute, she weighs 5lb 10oz and I think my nostril is bigger than her mouth. How the hell do I make this happen. Millions of women worldwide do this every single day, maybe it just takes a few attempts to get her to see just how irresistible my nipples are. Then it’ll be easy. “Strip her off down to her nappy”, they said on the postnatal ward, “she’ll wake up and be more alert and want to feed”.

She latched on! She stayed on for 76 seconds, I counted! It was amazing, I did it finally. We’ve cracked it. 

Okay it’s been 4 hours since she tried to fool us into thinking she’d feed. Nope, nothing since. I’m going to have to express by hand. How hard can that be? 

MY NIPPLES… I WANT THEM BACK!!! Where the hell have they gone! Oh no, wait, there they are, hanging out down there with my belly button since being stretched like a balloon being tied in a knot. But at least we have milk, all 1ml of it. Don’t drink it all at once now Amélie. 

Okay, you drank it all. I have nothing left to give now except my actual nipples, but you have no teeth so good luck with that.

Formula it is then. This feels so weird, I really thought I’d be able to breastfeed.

I’ve been home for 10 hours now and OH MY GOD MY BOOBS ARE GOING TO EXPLOAD. GET ME TO SAINSBURYS, THEY HAVE BREASTPUMPS…STAT. (Didn’t actually say STAT).

I am a cow. An actual real-life human dairy cow woman. I feel SO attractive right now. She has latched on a total of 5 times in three days, that is kind of progress. Right? 

I don’t want to give up on the actual feeding, what is wrong with me? My mum did this without problems, for a whole year. I can’t physically hold a bottle and a baby at the same time with my useless hands. This is going to be so difficult. I could keep on expressing but that’s a very tedious job where I don’t get much milk out and there’s so much else involved, sterilising, measuring, heating, none of which I can do myself either. The milk has come in properly now though, maybe it’ll get easier?

DONT TOUCH ME. I am fully aware that I have a sudden case of breast-Tourette’s but, bejesus this bloody hurts. I might instead saw off my breast with the blunt side of a bread knife and extract the milk that way, I think it would hurt less. Whose idea was breastfeeding anyway? Do not touch me either mini-child, your mouth is my nemesis! 

Okay yes, you need a feed again, I get that. Make yourself at home, left or right for you madam? I’d recommend the house breast. Would you like a taster before going for the whole thing?

She’s doing it! That’s the majority of the day now where she’s actually entertained the idea for a substantial amount of time and fed from me properly. Does this mean she’s exclusively breasted? I think it does. Man I feel smug right now.  I love this.

I hate this. It is 4.02am, we last met at 1.32am, that is not good behaviour. You CANNOT be hungry right now. Short sleep cycles you say? Stomach the size of a marble you say? Remind me why I signed up for this again. Oh yes, she’s right there in front of me staring at me with massive blue eyes. Then I remember all over again, why I chose to do this. Breast is most definitely best all round but this, is the one thing that ONLY I can do for her. I can’t change a dirty nappy, I can’t get her dressed and get kicked in the face in a miniature sock-battle or lollop around the room trying to soothe a grumpy baby. THIS is my job.

I have boobs and, well, what else are they for?

Okay tiny girl, you’re 15.5 months old now. It has become as much a part of our bedtime routine as brushing teeth and reading What The Ladybird Heard, but you are growing so fast and taking my nipples with you every time you turn to look at the TV whilst feeding. I love you very much, but I think we’ve done it now. Save some for your baby sister, who will be born when you are 2 years and 8 months old and I can start this all over again and teach you all about how brilliant boobs are. Months go by very quickly.


Photo copyright @tombunton

Talent Search

What are you good at? Singing? Photography? Teaching? Breadmaking? Egg and spoon races?

I’m still trying to figure out some things about myself, mainly what the hell I want to do with my life and what skills I can comfortably say I’m in possession of. I am soon to be returning to work, and so in a few weeks I have to be an ’employee’ again rather than a stay-at-home-mum and that partly excites me in that I get to be working again but part of me (a very much more substantial part) is dreading it.

Not *just* because my Thursday morning date with recorded episodes of Grey’s Anatomy and 24 Hours in A&E must come to an end (holding back the tears here), but I will have to spend whole days away from my squidgy Genebeeb and her beautiful cheeky face, and try not to start blubbering in work because I can’t hold her and sniff her head all day any more. I have to be working in a children’s centre surrounded by everyone else’s children all day instead of my own and that sucks just a massive bit.

I’ve come to a bit of a moment where I feel like I’m supposed to decide soon what I want to be when I grow up. It hasn’t happened yet and I’m a bit stuck. Stuck not knowing what my strengths are, stuck in a whirlwind of revolving interests, stuck trying to figure out what to do to bridge the gap between all that. I’ve got A Levels in Psychology, English and Photography, a degree in Broadcasting and postgraduate Early Years Professional Status… So you see there isn’t really a theme!

Most people I’m pretty sure, have worked out vaguely what direction they’d be happy to see their life going in by the time they are my age (twenty*something*seven). My mum has worked her way up the ranks in the local authority and education sector, she has suitable qualifications to support this, my dad was in the Navy for many years and still works as a civilian for the Navy, my partner and I met whilst studying for our Broadcasting degrees and his line of work as a video editor and content producer is both technical and extremely creative, both integral to a career in the field of broadcasting.

I just feel a bit lost, like I’m supposed to know what I’m good at by now, but I don’t. I have so many interests but my disability just rears its ugly head every time I entertain the idea of plotting those interests along some sort of career path.

I wanted to have children in my twenties. That is something I consciously planned as I did not want to risk not being fit and healthy enough in my thirties or beyond to be dealing with my own very young children, like others are more able to do. So having children at this time in my life hasn’t caused my career path to deviate as such… I just don’t have much of a career path to look at. I cannot express the frustration of looking through pages of job descriptions online and having the same thought as I look at every entry – I COULD do that job, I am qualified, skilled and passionate enough to be responsible for this role, but… – and then I look down at my hands (metaphorically, mostly) and realise, nope I can’t do that EITHER.

So since the beginning of this year and whilst on maternity leave I have been trying to discover my inner creative streak… It was hidden somewhere within me underneath a lot of sarcasm, cold cups of tea and soggy milk-soaked muslin squares. I first started making button jewellery, necklaces, bracelets, bag charms, and then for what actually happened to be my half birthday (entirely legitimate cause for celebration) I convinced Tom to buy me a sewing machine. It arrived the next day, and well…





Maybe I don’t need an official career. Just an ongoing supply of oilcloth samples, fabric quarters, thread and brightly coloured buttons and I think I’ll be set for life. Or at least until I have to return to my ‘real’ job in a month’s time. At the moment I am loving just coming up with ideas of things I can make for my children, and for my family, friends and their children.
It’s never going to be midwifery, or paediatric surgery, or Olympic athletics… But at some point in the near future, in between making baby dresses and quirky purses, when I’ve got over the fact that I cannot ever have the job I dream I have when I’m asleep and not disabled, I hope to find out what I’d like to do for at least a substantial part of my working life.

Thought I’d end that on a chirpy note there… Happy Friday!


12 ways to annoy a disabled person…

Part 1

Here is my semi-conclusive list of some things I often hear when people meet me for the first time, in whatever situation that happens to be. We all meet new people every day, some of these encounters are just a one-off and some of course are recurring to some degree. Let me know by the medium of comment if you can add any of your own or if you yourself are guilty of any!

1. “What’s wrong with you? (Closely followed by “why are you in a wheelchair?”) With the exception of very young children and/or the very elderly, this is never pleasant to hear from someone you’ve just met. So no, lady with the snaggletooth and delightfully twisted gold hoop earrings, we are not well acquainted and I have not felt the need to quiz you about your apparent dental and jewellery-accessorising disorder so please move along.

2. “You have no muscle in your hands at all? Oh my god if that happened to me one morning I think I’d wake up and be like ‘oh my god I can’t do anything!” – I kid you not. The lovely, albeit naive, nurse who took out a cannula needle in my hand after a recent CT scan said this to me as I had Geneviève sat on my lap trying to feed, while I attempted not to laugh out loud to this remark. She meant it in the nicest possible manner but yeah…thanks for the vote of confidence there professional caregiver.

3. I don’t care if you’re an elderly gentleman and I appear to be slightly in the way of the box you’re trying to reach from the cereal aisle in Sainsburys. Kindly do not take my chair’s wheels and handles as a handy way of shifting me a little to the left. Use your words. I don’t feel obliged to grab you helpfully around your waist when you are standing in the way of the gin. If you love Alpen that much, invest in some shares and just say “excuse me please” next time. It works wonders, I promise.

4. “How do you go to the toilet?” Is usually part of an interrogation by children, but over the age of about 5 and it starts to seem a little inappropriate to be detailing my lavatoire regime to non-adults. Unfortunately minors don’t understand sarcasm so my response of “I decide to wee at a suitable moment and, well, the rest is history” seems to just go straight over their heads. Which leads me onto…

5. “What level of help do you need with toileting?” …WORST. WORD. EVER. Say it a bit louder won’t you, I don’t think everyone quite heard what you just asked me. Even typing the word ‘toileting’ makes me want to punch whoever last uttered it to me. I don’t care if you work for Adult Social Care and are assessing my ‘needs’ (because apparently a complete stranger can make this assessment and subsequent decisions about help I can get), please now leave my house and I’ll ask for help going for a wee with whomever is going to give that help. Not you.

6. “You’re such an inspiration!” …I debated with myself over whether to include this as I have been told this by many of my closest family/friends/people who have ‘medically’ cared for me in whatever capacity, so they are exempt from this crime! It’s the people who have literally known me for 5 seconds, in a queue in a shop where I’m carrying my baby in a sling and therefore I have inspired a whole nation. Inspiring how? Inspiring people to me are those who are in good spirits battling serious and devastating illness or injury, or who have overcome particular emotional or physical poverty to achieve something monumental. I have never felt as if I’ve suddenly overcome anything specific (just the whole of my disability making my life impossible to get on with but that’s ok, I love it really!) No but seriously, save this title for those who really deserve it.

7. Telling your child not to “stare at the lady”. It’s like saying to a child that they can hold a bar of chocolate but not eat or look at it. (That analogy sounded better in my head). I am weird and different. Children like weird and different, go with that and use their interest in me or my floppy hands or my wheelchair as an opportunity to teach them about society, about the human race, illness, disability, whatever. Just don’t make me something they’re not allowed to look at or ask questions about. I joke about being interrogated by small children but on a whole other level it is crucial and I kind of love children for being such nosey little buggers.

8. Offering to help as you walk past me and Tom as we are loading our children in and out of the car. Thank goodness you were there just at that moment, I don’t know how long we would’ve been stood freeze-framed in a moment of obvious despair waiting for someone to step in. *Disclaimer – I am not an ungrateful person, but random strangers offering help just seems bizarre to me when we are clearly not appearing to struggle. And even if we were, a little bit of struggle is normal. It makes me feel more incapable and dependent than I already am. I don’t follow random people into public toilets offering my assistance to help them flush the chain. If I need a hand from a stranger, I shall holler!

9. “So will your children be like you when they grow up?” Again, I’ve known you for a matter of minutes and right now I don’t feel like we’ve bonded sufficiently for me to divulge that a)…no wait, just mind your own business! Will your children inherit your ignorance and awfully placed false eyelashes? I hope not. Disabled people, I can assure you, are already fully aware of what may or may not affect their children. I love talking about genetics and inheritance with people I am close to or have a reason to discuss this with as it is an honest and trustworthy relationship. I do not even know where you will scatter my family’s information, so, shoe…off you go.

10. “How do you, like, get into bed and stuff?” – I get into bed and stuff. Next question.

11. “Aww, you work here, really? Well done you! Good for you!” I know in your head you’re probably wondering if my workplace actually pay me or if they’re just giving the little disabled girl something to get out of the house for. But yes, I have a job, shocking huh.

12. I have a face, please use it! When I approach a reception desk in the paediatric department at the hospital with my daughter on my lap, indeed, it is entirely likely that I might be her mum. You may speak to me, and not the person pushing me. I’m one of those uber-talented people who can understand speech and respond thusly. Just watch me it’s magical.

This concludes …alot of moaning.

Disclaimer #2 I’m now slightly concerned that no one will talk to me out of fear they’ll say or do something to annoy me. But please just carry on as normal around me. It gives me something to write about. Please remember to take these things a bit tongue-in-cheek, we are and will continue to be grateful to those around us and me in particular.


For the love of babies

Here’s the recent guest article I wrote for Disabled World.

You can view the post on the website in a nicer looking version!

Don’t forget to follow me on Twitter @shopgirlygm

For the love of babies

Some parents are worried about passing on their frizzy hair, or an awkwardly placed mole, but I’d have given anything to have those genetic traits as my only concern!

You see, I still go to bed each night and wake up each morning and though I don’t consciously say it to myself, I get this regular sense of ‘I have a child! ME!… Oh wait, I have TWO children… Goodness me’.

As a child, I had the same aspirations and fantasies that every little girl has about one day being a mummy and what I might call my children, what delightful styles of clothing they will or won’t wear, where we will go together on holiday, and so the dream went on. But as I grew up never really having that ‘young love’ that most kids encounter in school, a big disappointed part of me was seriously let down… By myself for not being a particularly confident child growing up, and by genetics for lumbering me with this awkward, annoying, frustrating and downright unfair disease. *sob sob* right? Wrong (sort of).

Fast forward a few years and I meet a lovely, intelligent, dedicated and caring person who I know I want to have children with. We became friends first at university where we were both studying for a degree in Broadcasting and some time later decided we wanted to be together. It never occurred to my partner, Tom, that we wouldn’t have children because of my disability, and neither did I, I just didn’t think I’d ever meet anyone who wanted to have children with me! I knew my neurological disease was hereditary and so I was always worried about people’s opinions, reactions and comments about any children we had together. I didn’t know what the inheritance pattern was or could be at that point, and for a while I read alot about PGD (pre-implantation genetic diagnosis) as ideally, I’d stop CMT in its tracks and not pass it on to any of my children.

I’m the first one in my family to have been diagnosed with having CMT from a very young age, when my mum noticed my feet looking different when I ran as a toddler. My maternal grandmother was diagnosed after I was, when she started suffering from muscle weakness but of course at a much later age. Nobody ever really queried why my case was so much more severe and earlier to begin, and how this could’ve happened. So when it was discovered that I had in fact inherited a fault on a particular gene (Mitofusin 2) from both sides of my family, we were pretty stunned. The chances of this happening are so slim so it really was a surprise. I don’t blame anyone for my inheritance of this condition, but when we became better informed about the genetics of my disease, we had already had our first daughter. PGD wasn’t an option anyway so there is no way that I cannot pass on one of my gene faults to my children. I can only hope that they just carry the disease like my parents do and not actually suffer any symptoms.

So what then?

We had our first beautiful, happy, perfect daughter and so began the biggest learning curve of our lives. Along with all the things most new parents get stumped by – ‘oh my god I cannot survive on such little sleep’, ‘TEETH! Argh! Who needs them anyway, why can’t babies just survive on a liquid diet for at least 5 years?!’, ‘yes, that’s right, my child has chosen the canned goods as the supermarket meltdown location this week, kindly move along and take your gawping eyeballs with you’. Nothing out of the ordinary there, except when your child is having said tantrum, and instead of picking them up and traipsing out with a screaming monster under your arm, you instead have to try your hardest to keep any mental strength you have left to verbally coax your child away from the tomato soup stack, because you cannot pick them up. This is the moment where having a pet (or child) on a lead and preferably muzzled seems like a terrific idea. It is beyond frustrating and disheartening to know that the supermarket gawpers aren’t just questioning why you can’t control your child’s mood, they are wondering if you, personally, having a child was a good idea. Then there’s the pity, ah the pitiful looks of ‘aw, so sad, she can’t look after her own kid’.

What better way to shock them, then, than having ANOTHER child (beautiful, happy, perfect, yes yes yes) and wheeling yourself through the clothing aisle with a baby lying on a cushion in front of you, boob out, breastfeeding on the move? These days I try not to focus on the starers, as much as I also hate knowing what they might be thinking, I welcome their wonderings of ‘how do I feel about that?’, as they are made fully aware that indeed, disabled people do have children. I have difficult days, difficult beyond belief. But it wouldn’t be parenting without a bit of a challenge, would it?