When Mummy doesn’t say ‘yes’ enough.

I find myself saying ‘no’ to a lot of the kids’ requests which makes me a bit sad at times, and the more times I have to say no to them, my mum-guilt tank gets topped up.

So I’m trying to say ‘yes’ more.

The problem is that it’s usually when we are just about to leave the house to go to school and Amélie (age 7) will ask to bring a toy to school, to play with at lunch time with her friends. I normally say no because a) the teachers would rather they don’t bring toys in from home and b) we are about to leave the house and I know that bringing a toy doesn’t just mean grabbing a toy, it means rifling through the drawer of small figurines for what feels like about 12 minutes while I sit by the door getting more and more irritated by her not choosing anything quickly and swearing at her in my head. Awful mummy. What I’d like to do is remember to say to her much earlier on in the morning, that if she wants to bring a toy (one small toy and nothing of great value) then she needs to choose it well before we go to leave the house. This paragraph seemed a lot more interesting in my head. Sorry about that.

Our eldest has also recently got into reading. Like reading to herself without our help. While she was reading a particular book at the weekend, I tweeted this picture of her to the author, Gwyneth Rees:

She had barely read half of the book when she asked me to buy the next one (advertised on the back of the book) and I went to say what came most naturally which was, ‘Amélie. You have about 100 books on your shelf that you’ve never read, maybe you should read those first’. But instead I said I’d look on Amazon or eBay for a second hand copy and said when she finished Mermaid Magic she could start the next one. Of course I also reminded her of the gazillion other books on her shelf but I thought, well she’s finally discovered the satisfaction of reading to herself for pleasure and I don’t want that to stop. It was £1.99 I was willing to spend to encourage a healthy habit which didn’t involve Anna or Elsa or pooing Barbies. (If you have girls you’ll know what I mean).

When it comes to weekends, we tend to want to get stuff done in the house, like cleaning the bbq ready for summer, and trying the living room furniture in a different configuration (one of Tom’s favourite past times) or needing to go to B&Q. Of course ideally this is something that Tom would go and do by himself but as I need a lot of help to do things with the children, we tend to do things all together at the weekend. And I love it. I spent quite a lot of my childhood in B&Q or Trago Mills (if you are not familiar with Cornwall or Devon life then you’ll be wondering what on Earth Trago Mills is) but it didn’t do me any harm and I think it has given me an appreciation for household diy products and hand-tools. Me and my brother had great fun watching dad choose new drill bits and sandpaper!

But diy stores aside, when the kids say ‘can we go to the park?’ Or ‘can we go to the beach?’, we are making an effort to say ‘yes’ more. Of course we did do these kind of things anyway but at the expense of letting other things not happen. Even though we might need to go to somewhere which might not spring to mind as a wholesome family attraction, we know that those things can probably wait a little and while the sun is here (remember the sun?) we make weekends about them. Even if that means me sitting in my chair watching the kids play in the sand while I look after the puppy. I absolutely love watching Tom dig massive holes and bury the kids until they can’t move (parenting hack) and them giggling as freezing sea water goes over their ankles at the shore. They will be doing things that they’ll remember when they’re grown up and think about how mummy and daddy sometimes took them to really exciting diy shops but we also had great fun at the park and at the beach. Both of which cost little to no money. Bonus!

So although sometimes we have to do stuff that isn’t on their wish-list, I think saying yes more is helping. Helping me appreciate their little quirks and discover what shenanigans they can get up to when they are given the opportunity to do something they really want. Is this even making any sense?

Perhaps most other parents already dedicate all of their spare time and weekend days to filling up their children’s excitement reserve. Maybe we have neglected to notice what they really want to do. I don’t know. I think they’re doing okay. I think just thinking about how often I tend to bark ‘nope’ at them before they’ve even finished the sentence and rethinking my response, helps.

Don’t get me wrong, I’ll still say ‘absolutely bloody not’ when Geneviève asks if she can watch Peppa sodding Pig at 6.30pm when they desperately need to get in the shower on a school night. I mean, I still need my sanity.

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The tumultuous times of toddlers

After 2 children, you’d expect me to, at least to some extent, know what to expect when it comes to toddler antics and their interesting behaviour third time around.

Rafe is 19 months old today. 19 months is an interesting age. Isn’t it? They’re starting to talk more and come out with some hilarious expressions and attempted communications. Isn’t it all supposed to be fun and games? Right now it doesn’t really feel fun. But I guess it is a bit of a game.

Guess the moan. It could be that he is hungry. Aha! Feed him I shall! Oh wait, no he won’t eat the food that I’ve just cooked for their dinner. I shall give him another biscuit to let us have 2 minutes of no moaning.

HAHAHAHA who am I trying to kid?

Even bribery with biscuity things won’t work for 50% of the time anymore.

He comes up to me and sticks his hand down my top and grabs a boob. Trouble is, I am in the middle of doing something and now is not a good time to sit exposing a bosom that will undoubtedly be nursed from for approximately 3 seconds before he gets down again. I put boob away and he moans at me to get it out again and I say ‘No, not right now’. He cries at me with his arms out and says ‘duddle’ and of course it is illegal to refuse a toddler cuddle request, and offer a cuddle. He pushes me away saying ‘no’ like I’ve just tried to make him eat a bar of soap.

Daddy, he wants daddy. Daddy comes over and picks him up, crouches down with him sat on a knee and then he shouts ‘UUUPP’. But daddy doesn’t want to stand up and walk around. Well it’s not up to the adult. The toddler thinks he should be in charge right now.

He is quiet for a good 5 minutes and you realise the peace that has ensued. Then you think ”hang on..this isn’t a good peace”. You leave the kitchen and find him in the bedroom drawing on the wall with eyeliner. Bloody societal pressure. If it wasn’t for the requirement to look *awake*, there would be no need to have eyeliner in the house. What on earth does one use to get eyeliner off matt emulsion paint?

But then, bedtime comes and with each child comes a randomly concocted night time routine of funny little quirks and rituals. I give him his last feed, if I can get him to sit still for a few moments. When he’s ready (he’ll yell ‘boobieee’ if not), one of us will shout ‘cudddddllle’ and daddy holds out his arms into which Rafe will throw himself. You have to make sure your chin and mouth are out of the firing line. He is nestled up the 6’2″ frame of daddy where he waves to me, blows kisses and in response to me saying ‘love you’, he replies “n-night!” Daddy takes him into bed where he waves goodnight to his sisters and usually lays down and is happy to take himself off to sleep after daddy says goodnight and the door is shut.

Despite having ‘the fear’ of nighttimes for over 7 years now, as you never know how successful the night will be with a baby or toddler, I think bedtime is one thing we do quite well. Our kids have been happy to be read to in which ever room story time happens in, be kissed goodnight in their bed and then left to it. They love their beds and I know that in a few weeks or months Rafe won’t really need to wake up to be told that it’s still bedtime and the night fear will be a distant memory.

They’re seriously testing our patience at times (read that as most of the bloody time), but we do love them.

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Pregnancy in a wheelchair

As a mum of 3 and an essential wheelchair, I think there’s still a lot that needs to be learned about having babies when you’re very much ‘a disabled person’.

Before my first baby, (our daughter Amélie is now 7) there was so much that we just didn’t know about what it would be like to be a pregnant wheelchair user, and go through childbirth when I can’t even stand up. Of course, any newly pregnant first-timer doesn’t really know exactly what it’ll be like, but they can be pretty sure that their experiences will normally be quite similar to other people of the same age and ability, with all the usual differences in each individual’s life. But as a wheelchair user, there was very little I could ‘look up’ online or in books and no one really I could ‘look up to’ as a realistic example of how a wheelchair-using woman might experience pregnancy and childbirth.

For the midwives and other medical professionals around me, they didn’t know much more than I could search for online about how someone with severe CMT disease would handle pregnancy and childbirth, and whilst I was under consultant care for all three of my pregnancies, the decisions were largely made by me and my midwife, deciding what would probably be the most sensible thing to do. The consultant saw me a few times during pregnancy #1 (as with the following two pregnancies) but to be honest there wasn’t much she needed to do as physically the pregnancy was pretty straightforward. The main thing we had to think about was what would happen in the birth and what help I’d need.

My midwife was amazing and supported whole-heartedly the argument that my partner, Tom, would need to be present throughout the whole thing and not asked to go home and leave me to it at any point, especially after the baby was born, which most non-disabled mums would experience. As well as the fact that dads/significant partners should be there to experience this with the mother and for their new baby’s sake, in my case Tom also needed to be there so that there was no need for health care assistants/midwives to have to use a hoist, or other equipment when it’s so much more comfortable and easier for all involved for Tom to lift me and to help with going to the toilet and showering. Luckily the matron of the labour ward agreed and he was with me constantly through all three experiences.

Physical limitations and needs aside, I don’t know what I would’ve done without him. I don’t know how any woman would be able to go through that life-changing episode without their partner.

How did the actual births of my children go?

With Amélie I was surprised at how well I coped with the pregnancy but she was a pretty small baby and my body coped well apart from pelvic pain. With the pain of childbirth it was important for me to conserve as much energy as possible, so I had an epidural which worked well once it was in, but because of the curve in my lower back it was very difficult for the anaesthetist to get it right. With our second baby, Geneviève, I was a little more uncomfortable during the later part of pregnancy as it was summer and very hot and I find it difficult to regulate my body temperature. She was also a lot bigger than Amélie! I wanted to try and give birth without an epidural, and then at the last minute decided I did want one but it was too late, so I gave birth to her with gas and air and also diamorphine. With our third baby, Rafe, who is our only boy and the biggest of all three, it was again the height of summer at the most uncomfortable part of the pregnancy and I wasn’t particularly enjoying feeling like a sweaty beached whale. Because I have to crawl from the bedroom to bathroom at night or if I’m not in my wheelchair, my wrists really took a beating with the increased weight I was carrying. I decided to go for an epidural in labour again but after nearly 2 hours of failed attempts it didn’t go into the right place in my spine and so I pushed him out just with gas and air. Ouch.

I have managed to breastfeed all three of our children, and am still feeding Rafe. The first time around it was very difficult as Amélie was such a tiny baby. But after a few weeks it became easier and it was so important for me that I could breastfeed them, seeing as there are so many other things I cannot do. Nobody else would need to feed them, and it was very integral to me bonding with them as babies.

I’m pretty sure that we’re done having babies, although if we had loads of space and money I’d love to have more and more. For now, 3 beautiful children and a new puppy is enough work (and lots of fun, of course) but it isn’t easy. There are many things I can’t do for them as a mum and I will always find that frustrating. But I know that what I can do for them will hopefully make up for all of that. And again, none of it would be possible or enjoyable without the best partner and daddy ever by my side throughout it all.

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What happened in 2017

First of all, where the hell has this year gone? I know everyone goes on about year flying by and years going by faster when you’ve had children especially.

But I’m quite seriously a little worried that physically, time is actually going faster. I mean literally… Literally literally.

I don’t feel like enough has happened to fill up 12 months, but I guess a lot has happened.

Just after the new year in January my partner’s family went through a really scary time with an immediate member of the family. They are my family too. We were expecting the worst, and although the worst didn’t happen, we almost lost somebody fundamental to my partner’s life and a lot was lost. I spent a long time being petrified of every phonecall whilst my partner was away, and above all terrified at how this would affect him. Knowing that I couldn’t fix it for him was awful.

I can’t quite believe that it is almost a year since it happened.

What else happened in 2017?

Well, Rafe turned into a proper baby-toddler person and not just a vegetable. He started walking at 10 months. Then he started climbing shortly after. He has not yet stopped climbing. Our favourite phase became “get down”, much like when you have a dog. Except unlike a dog, bribery with food items was short lived and now he just laughs in our faces. He is so much more mischievous than the girls were. It’s a good job he’s cute.

I started making YouTube videos. Well, I say start – I started a few years ago and only uploaded videos sporadically but I love the satisfaction and buzz you get from filming and editing your own little movies and with my trusty Tom by my side teaching me how to do a lot of it, I’ve started making videos much more often. Hopefully 2018 will see another increase in the amount and quality of videos Tom and I can make. Mostly to do with our life with three kids and me being a disabled mum but with the odd Poundland/Primark Haul thrown in. Just because I am a woman I guess.

In 2017 I had a bit of a first in that I spoke at the WOW Women of the World Festival in Exeter, where I was part of two separate panels talking to audiences about childbirth experiences and about the Women’s Rights Movement marginalising disabled women. It was scary, nerve-wracking but apart from all that I am so glad I did it. I hate speaking in front of groups of people and I think I always will. Yet for some reason I want to be involved again and do more things like that. I’m hoping to be involved in the CMT (the neurological disease I have) Festival in some way in April.

I won a long-standing annual family tournament which might not sound like much to those outside the family, but it’s quite the event and I love seeing everyone get involved each year.

Amélie, our eldest was the bravest of brave girls having double eye surgery and took it all in her stride. She also got moved up into one of the gymnastics squad groups and I have loved seeing her finally get that fire in her belly to do better. She is doing marvellous work in school and has grown in confidence so much.

Geneviève is in her last year of nursery before starting proper school in September. Bizarrely the prospect of Geneviève starting school feels more scary than when Amélie started. I’m looking forward to seeing her joyous little face as she learns to write her own name properly. We’re getting there but the poor child has quite the mountain to climb there with all the Es under the sun. At least she’ll be almost 5 when September comes.

So here’s to another year of all that comes with having three kids and hopefully making more time to be creative and productive.

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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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No, she is not a child carer

Yesterday, I had to take my 6 year-old daughter to A&E because she had hit her head at school and cut it open. On the phone to the school receptionist I was told they’d called an ambulance because her behaviour had changed and she was very pale. I panicked, and left work as quick as I could, bursting into tears as I went down in the lift. What exactly did they mean when they said she had a cut to her head?

I got to the school ten minutes later, about 30 mins after she’d hurt herself.  She was very quiet and pale looking, and didn’t want to talk much. A teaching assistant was stood outside waiting for the paramedics to arrive, except nobody arrived, and instead the ambulance control centre rang my number an hour later, to triage her over the phone, wanting to speak to Amélie herself as well. She didn’t want to talk to the stranger on the phone, and he asked me more questions, then decided she didn’t need someone to come out to her and that we should take her to hospital instead. Quite why they couldn’t have let us know that an hour before, I don’t know. Anyway, we got to A&E and were seen by a triage nurse relatively quickly, and then by the doctor after another wait. But it was a nurse practitioner who saw my daughter after the intitial consultation by the doctor, who said something which frustrated me. I had been quite relaxed after getting Amélie to hospital and knowing she was in good hands and we knew what was going to happen. But the nurse practitioner asked Amélie a few questions just to check she could remember things ok and she was otherwise well after the head-bashing. One of her questions was about at home, and whether she  ‘helped look after Mummy’.

I see. So we went from ‘aww poor girl, she has cut her head open, let’s make her better’ – to ‘aww poor girl, she has cut her head open AND she MUST be a young carer as well, brave little thing’. She asked me if Amélie was a young carer to which I replied ‘no, she’s not’, and she said ‘no but I’m sure she has some caring resposibilities to help you, do the school know, are they aware she is a young carer?’, and so on. She told me it might be good, for Amélie, if the school were aware she might need to help me sometimes.

SHE IS NOT A YOUNG CARER! She is a 6-year-old little girl who happens to have a mum who’s in a wheelchair. The school know me well enough, and they also know I have a very caring and supportive partner who works full-time, and I have a PA who, surprisingly, fulfills the role of ‘helping Mummy’ when I’m not with my partner. My PA was sat right next to me at this point. My daughter doesn’t need to look after me.  I look after her.

Yes, she is able to fetch things for me and she can grab her baby brother out of the bathroom when he’s gone to explore the toilet, but as far as I’m concerned that does not constitute a young carer, who needs keeping an eye on to check she’s managing her complicated life okay.

If I wasn’t a wheelchair user, I’d still get my kids to fetch the baby wipes when I can’t grab them, or to run and close the stairgate when their brother is about to venture upstairs, and they are nearer than we are. I know able-bodied bodied parents that are lazier than us!

It makes sense to get kids to be helpful in their day-to-day life, and know that it’s just a nice thing to do. I hope they are helpful to their friends and teachers alike. My kids are pretty independent too, possibly because I can’t do everything for them that most mums can and  although daddy takes care of most of the physical side of childcare when he’s not working, I think they’ve learned useful tasks earlier than most kids would happen to. Amélie makes cereal for her and her sister, she can make drinks and loves that she can make her own sandwiches when she wants to. She has even taken to flying unaccompanied to Spain for a weekend get-away once a month in a rented villa she found, whilst backpacking in her gap year between nursery and primary school. She really needs the respite from taking care of her entire family.

Of course I’m joking, but on a serious note she does not need to be my carer. Young carers are amazing, and what they do for their mums, dads and siblings should never be taken for granted. And indeed, they might need someone to check-in with them every now and then to make sure things are working and that they have time for themselves. But I have my own PA, so that won’t need to be the case with our children. They’re just regular children and until I’m old and losing it, they can have their childhood.

I think the nurse practitioner may have realised that she’d gone a bit too far with her assumptions, as before Amélie had her head stitched up, she came and sat next to me and asked about my ‘medical history’  (like every parent in A&E with their child gets asked, right?!) and said that it was great that I just got on with life and that I wasn’t really disabled as I don’t let it affect me. She clearly hasn’t read this blog!

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10 Things You Can’t Stand About Parenting 

Disclaimer: read ’10 signs you love parenting’ for if you need to be reminded that you do love it really.
1. When someone misidentifies the gender of your baby. You may like to think you’re quite a liberal parent and want to buy your girl a red truck for her birthday, saying ‘fuck you’ to gender stereotypes, but it’s still a little infuriating when your dainty little girl dressed in a blue dress and flowery sunhat gets told she is a handsome young man.

2. Mornings when you feel your stomach acid start to bubble up due to the rage caused by the amount of times you have to tell your daughter to not just stand there in yesterday’s pants for a further 23 minutes, but actually make movements – any freaking movements at all – to get some additional kind of clothing on. And also, when you ask what on Earth they’ve been doing for the last half an hour they seem to have no recollection of their activities. Astonishing. Like it’s been erased from their memory. Which reminds me…

3. Sometimes, they remember everything. Apart from important stuff. But they do somehow remember that last week you promised them they could have packed lunch at the end of this week, and now it is Friday, 8:27am and you now have an obligation to rustle up a nutritious picnic for the clever little thing.

4. You want to be a fly-on-the-wall at school lunch time and have the power to poke other kids when they say something mean to yours. You hate the idea that your daughter is sad and you’re not there.

5. Dressing babies. Due to my disability I can’t do this myself but I’m usually the one trying to pin said baby down while others try to insert him into trousers. They should use this activity to torture prisoners – see how long they last with a baby (okay maybe just a doll) who, just when you’re getting leg #2 into place, they retract leg #1. Leg #2 then becomes leg #1 and the ordeal is repeated about ten times. It’s the same with sleeves and shoes. You all end up screaming and you put your son in a dress and be done with it.

6. They do not want you to sleep. Babies are arseholes during the night and that’s all I have to say on the situation.

7. When you’re supposed to cook something nutritious to fuel their growing bodies but you’ve just got home and it’s 6pm – fridge tapas will have to do. You boil up some pasta, add cheese and a bit of sandwich pickle, some sliced up cold sausage from the weekend BBQ, and throw in some frozen mixed veg to pretend it’s healthy. They don’t eat it, and instead have some questionable yoghurt from the back of the fridge for dinner. If they get the runs it’s their own fault.

8. Meltdowns which occur outside the home. Nothing screams “look how shit I am at parenting!” than when your child decides to lie down on the floor in the frozen section in Morrisons. You’re a mum in a wheelchair and the verbal attempts to get your child to stand up are not working. Then the Parent Samaritans rock up and offer help and you just want to scream “You can fuck off too. Leave me alone.” in their face. You’d quite like to just ignore your child and leave them to their tantrum as you might at home, but unfortunately it is frowned upon in the public arena.

9. Morning wake-up calls before 7am when you’re not getting up early to go on holiday. I love that my kids want to snuggle in bed next to me in the mornings but when they are 3 and 6 years old, it is 5.48am and within 3 minutes they are arguing about not having enough space or any covers, you regularly scream “it is MY bed, it’s not even 6 o’clock, bugger off”. You load YouTube on your phone and some sickly sweet video of some girls unwrapping Frozen-themed Kinder Eggs, and send them on their way. You’ll deal with the post-YouTube comedown later on.

10. After all the other trivial, albeit shitty stuff that happens day-to-day as a parent, you have the overwhelming sense of disappointment that you can’t give them everything you want to. You can’t promise the world will be nice to them always and you can’t promise nothing bad will happen, and that sucks.*

*Although you can help them to be strong, loving and open-minded people, and that might help with those things.

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