14 September 2023

Living with Prader-Willi Syndrome

11:39 | Posted by

This is Rowan. Rowan is smiley, sweet, cuddly, and so, so incredible. Rowan also lives with a lifelong genetic condition that we will have to manage for the rest of our lives. This condition does not define her, but is something she has. She will always be completely perfect to us.


This is a very long post about her birth and her diagnosis, and it’s a lot of trauma dumping, so sorry in advance, or maybe you’re welcome, if you’re nosey like me and like knowing everything about everyone. I feel like writing things out is the best way to explain feelings that I don’t fully know how to explain, so consider this a peek into a journal entry I probably should’ve kept private.

When I was pregnant with my daughter, I felt this overwhelming sense of something being…off. I couldn’t explain it, and when I tried to, I sounded like a paranoid wreck, but in my head, I knew that my girl was going to be different. People can try and tell me now that I am projecting it onto my memories, now that we know for sure, but I think I knew from the very beginning that she wouldn’t be like our son. 

Throughout the pregnancy, my anxiety hit an all-time high. I would spend hours obsessing over every detail the doctors told us, panicking over her movements, worrying about everything I did, worrying that I was harming her, but I think this anxiety was my mind’s way of telling me that, for once, my fear that everything wasn’t as it should be, was finally right. Call it a mother’s intuition, call it a lightening strike of the anxiety finally hitting a point, but I knew something was not as it should be. There seemed to be event after event that would tell me that I was right, and that I needed to say, but everything seemed to be fine to everyone else, so I assumed I was just being an overthinker, because that is one of my great skills in life. First she measured small, then she was fine, then there were extra checks just to make sure everything was alright, there was diabetes, then there was a chest infection that tore my stomach muscles open coughing, there were checks to make sure she was moving, again and again, there was always something, and all the while the voice in my head was screaming louder and louder to pay attention. 


When I was expecting my son, he would roll and move about like it was nobody’s business. He would swoop, and swim, and kick, and let me know he was there, and as much as it might’ve hurt sometimes, I loved every movement. My daughter was not the same. Her swooping and swimming was more gentle, less frequent, her kicks rarely paralysed my bladder like her brother’s did, and she was a much quieter baby. Initially I had hoped that I was going to be blessed with the rarest of babies; one who sleeps through the night, but that voice in my head kept telling me it was more than that. I would lie awake holding my belly, praying for a movement, bargaining  with God that if I felt her move, I could sleep, and tomorrow i would do better. Every night. Every night I eventually felt her move, but nothing could assuage my fears, no reassurances, no number of appointments, nothing could soothe that voice in my head. 


Her birth was not what I had hoped for, but after a bad experience with my son, I didn’t have particularly high hopes. I had asked not to be induced, so, of course, I was induced, and from my previous experience, I knew I wasn’t in for a good time. The days dragged by waiting for something to happen, for a delivery room to open up, and then at midnight, I was moved to the room to get ready to meet her. I rang my partner at an ungodly hour, and told him to take his time because it would be a while. Prophetic words, unfortunately. 


We were in there for hours, and our girl had decided now was the time to swim. She kept moving away from the monitor, so they kept losing her heartbeat. Birth isn’t the most comfortable of experiences, but having to contort yourself into shapes so a nurse can try hold a monitor on you is truly not the peaceful vibe a person needs in a situation like this. After a few more emergencies than I would have cared for, a team full of doctors and nurses seeing a whole lot more of me than I ever wanted, and more people having their hands places they shouldn’t be, I was done. I was so exhausted I couldn’t even catch my breath. They had tried breaking my waters twice, with no success, our girl kept moving away from the monitor, and it was getting increasingly difficult to keep an eye on her, I didn’t know how much more I could take. A doctor came in and said there was concern that the cord was too short, and that if we carried on, there could be a risk to her, if they were successful in breaking my waters. It was decided to go for an emergency section, which was absolutely nowhere on the birth plan, but I needed her out and safe. I walked to the operating room and could feel my heartbeat so loud, it was reverberating in my ears, drowned out only by the sound of my heavy breathing as I desperately tried not to have a panic attack in the middle of the operating room. My partner was told to wait, and I could hear the blood rushing in my ears as I sat and watched people rush around me, and the tears I was trying so hard to hold back began to overflow. The doctors and nurses were so kind and patient with me, but the whole time all I could think was “ I wish I’d worn better pyjamas for this”. Queen of flashing everything at the medical professionals. After that, everything seemed to move so quickly, I was prepped and ready, they started working away, just as my partner was brought in, and I’ve never seen a man look more traumatised, but at that point I just kept thinking how thirsty I was and how dry my lips were. I think I asked for a lip balm about 12 times, to no avail, unfortunately. 

Soon our girl was earthside, and while her brother shot out of me with the force of a bullet, she was gently lifted from me, shown over the draping all around me, and then taken away. I felt so many emotions; pure joy that she was here, panic that something was wrong, guilt and anger that my body couldn’t do it the way I wanted. I felt completely overwhelmed, and if I didn’t see her in the next 10 seconds, I was going to send my partner over to grab her. Finally she was brought to us, and as soon as I saw her perfect face, I knew no matter what, I would go to the ends of the earth for her. The instant, fierce need to protect her and keep her safe overtook everything else, my arms ached to hold her and I just marvelled at this tiny, beautiful angel.


As we went to recovery, I tried latching her onto me, but she wasn’t having any of it, but people had told us that section babies are sleepier, it can take longer for them to feed, don’t worry about it, so I tried to keep calm. It didn’t occur to me that there would be an issue with breastfeeding, it had come so naturally with my son, I assumed it would be the same with her. We found out she did have a short cord, so the section was inevitable to keep us both safe, which helped ease my guilt temporarily. We moved onto the ward, and I tried feeding her again, but she still wasn’t having it, but she seemed so content that we thought nothing of it. Then after more time passed, I knew that something wasn’t right. She had been put in an incubator because her temperature was low, and I could barely move after the section, so I felt trapped in my bed, just stuck looking at her. I was too scared to touch her, but too worried to not try. A nurse came over and asked about the feeding, and I said we hadn’t been able to latch her on, and asked if something could be wrong. She took her and syringed some formula in, and i tried my best to hand express, but only managing to cry tears of frustration. Then the nurse said that she felt quite “floppy”, and she wanted the doctor to have a look, and see if there was maybe a reason she wasn’t feeding. This was the start of what felt like a nightmare. A doctor came and wheeled her away for tests, as I lay in bed feeling completely useless—unable to move, unable to feed my baby, unable to do anything but cry. The doctor brought her back after a few preliminary checks, and agreed something wasn’t right. They decided to put a cannula on her tiny hands to help pump antibiotics through her system, in the hopes that it was an infection, and I prayed harder than I ever had that this would be it. But, of course, it wasn’t. I heard a nurse walking away and talking about us saying “i’ve got one that won’t feed, it’s not looking good”, as if the curtains that she never closed provided some kind of sound barrier. The next day she was taken away for more checks, and brought back with word that the consultant paediatrician would come and see us soon, so we knew something was wrong. The curtains around my bed that had remained open for nurses and people to say hello, now remained closed. She came and brought students and other doctors with her to discuss what was happening, and it felt like the words were flying around the room and out the window, because not a single one told me why my baby couldn’t wake up, couldn’t feed, and couldn’t move. Thank god Stefan was there, because otherwise I would never have known what was happening. We were moved to a private ward, and nice as it was to have our own space, this was what fully solidified it for me that everything wasn’t going to be okay. There were talks of MRI’s, infections, genetic testing, lists of conditions that it could be, but “very likely it isn’t this one, this one is very rare”. I googled the first condition and immediately broke down at what it could mean for her, and vowed to not google again. I let Stefan research everything because I couldn’t stand to read any of it, because every time I did, the only conclusion that my brain could come to, was that my beautiful girl was going to die.The genetic testing was done, and she was taken for an MRI to see if an injury during birth was causing the issues, and seeing her tiny little body in that machine is something that will stay with me forever. It felt very odd to hope she had been injured during birth, but that was the scenario that had the best outcome, so we banked all our hopes on it, even though I think we knew it was pointless. 


We were finally allowed home because she had started being able to drink from a bottle, and so began the exhausting journey of exclusively pumping for me. In my head, all I could think was, this is at least one thing I can do for her, so I very stubbornly stuck to my guns on this. We went home to wait for results, and try to adjust to our new life as a family of four. Her brother adores every hair on her head, to him, she is the most perfect little angel in the whole world, and we are so incredibly lucky to have been blessed with such a kind, sweet boy. Finally we got a call (after much pestering from me), the MRI was clear. It was a genetic issue we were looking at. Even though I think I had tried to prepare myself for this, it felt like the edges of our little world had begun to crumble, and I was just waiting for the inevitable collapse. We had an appointment for her to have more bloods taken coming up, and when we went in, they said our consultant would be with us soon. We hadn’t been meant to see her that day, so we knew something was back. I tried so hard to hope for the best possible outcome, as she brought us into a consultation room. I could hear us making inane small talk, all the while wanting to scream at her to tell me what was wrong. We sat down, and she very gently told us that the “very rare, unlikely to be condition” was, in fact, what she had. So rare, that I had never heard of it. Prader-Willi Syndrome. A genetic disorder that causes behavioural, emotional, and physical development issues, a disorder that means that, from around the age of 4, our daughter’s brain will no longer recognise she is full. She will continue to eat anything and everything, because to her, her brain will tell her that she is starving. That she needs to eat to survive. She needs a growth hormone to help regulate normal bodily function, and she will not experience puberty or grow up like other girls. She is unlikely to ever have kids of her own, and she may never develop enough mentally to be able to live on her own. Often people with PWS are unable to live independently, because if left to live freely, they will eat themselves to death. As the consultant told us about the condition, I could feel my brain begin to fog over, and the walls around our little family bubble that I had created in my head, began to crash down. This was a lifelong condition, with no cure, something we would have to live with every day. I could feel the hot tears falling, as I nodded, trying to pretend like i could hear what was happening, and could feel the tears soaking into my mask, the sympathetic eyes of the consultant burning into me. Stefan stayed so strong the whole way through, as I crumbled beside him. We went home with leaflets about the condition and advice on facebook groups for support, and promises of appointments in the new year. Our beautiful, tiny Christmas baby, brand new to the world, and already the promise of a life that would be so much work for her. 



Our son is a textbook example of a baby who overachieved. He could hold his head up from he was out of the womb, happily waving his head about to look around him, sitting up and crawling in no time, walking before he was a year old. He would babble and laugh and talk all day long if he was allowed, he would fight sleep because there was just so much to do and see, and so much babbling to do. He was, and still is, exceptional. I’m not saying that to blow smoke up his hole, he is a remarkably bright kid, even if he hates doing homework, loathes being forced into reading, and cries over practicing writing. He’s more than capable, and he has a logical mind that escapes me, but he would much rather run about like a mad hallion than sit inside with work. Having a son that was so incredibly capable, made watching Rowan even harder. We kept sitting, and waiting and watching her, begging for something like what Elijah could do. Where he had been awake, alert, strong, she was lethargic, sleepy, and floppy. She had no strength in her legs and arms, her neck couldn’t hold her head up, she wasn’t able to wake herself up for a feed, or hold herself to the breast. Often babies with PWS are tube fed because they aren’t able to get enough food or nutrients due to the lethargy and hypotonia, we were very lucky that we were able to avoid this. She had just enough strength —and stubbornness—to persevere with the bottle, and I am eternally grateful for that. Everyday I would try latch her on, in the hopes that I could give her the same feeding journey I was able to give her brother, but every time would end in tears—either hers, or mine. It’s incredibly difficult to all of a sudden not be able to do something that you know your body can do, and it’s very hard not to feel rejected when your baby just can’t latch on. Being at home with her, just watching her, knowing that she had a lifetime ahead of her that I had no way of preparing for was incredibly overwhelming. That feeling has never disappeared. Every day I hope it’ll ease, the panic, the sudden feeling of a lump in my throat, trying not to cry, the feeling that I have somehow failed her, that I did something wrong when I was growing her. A litany of irrational thoughts that run through my head, and every day I hope that today will be the day that I wake up and don’t feel guilty, that today i’ll have done enough for her, exercised her enough, read to her enough, given her every advantage that I can. I know mum guilt is something we all experience with our kids; I always worry that I haven’t paid enough attention to Eli, haven’t played with him enough, that I was too short tempered, but with Rowan, there’s an extra level of fear. Everything that I feel like I haven’t done with her, is another thing that is going to hold her back, that I am hindering her, not helping her. It’s exhausting being a parent, it’s even more exhausting when you second guess and question everything you are doing, when you spend hours of the day worrying about a future that is impossible to predict. There are so many conditions linked to PWS, it’s like a really shitty lottery situation trying to imagine which one will she end up with. Will it be mild, will it be severe, will she be able to go to school with her brother, will we have to fight for a place in a school that doesn’t have enough places for kids with additional needs, the list of questions goes on and on. I have spent more time on the phone chasing hospitals and doctors for her than I ever have for myself. We have gone to appointment after appointment, and still I feel like I will never be prepared for her future. I look at her tiny, perfect, beautiful face, and a wave of fear hits me so suddenly that I feel like can’t move. I know what it is like it live in a larger body in this society, and the cruelty of people knows no bounds, and I am so scared that she will experience the same treatment that I received for so long. In a cruel twist, whilst Rowan’s brain believes she is starving, her body will stop being able to metabolise food at the same rate as other people, and she will actually require less calories. If she is not on a strict calorie controlled diet, she will gain weight at an exponential rate, and her lack of muscle tone makes it much harder for her to do exercise in the future. I don’t fear her being overweight, I fear how other people will treat her. It does feel like a horrible karma to me though, to have spent so long obsessing over being bigger, of worrying about everything I ate, and now I have to do the same thing for my daughter. This is not a future I ever wanted for her, but it is a future we will face together.


I look at other babies around her age or younger, and I see everything they can do, how they overtake her, and it’s so incredibly hard not to feel jealous, not to feel overwhelmed by grief for a life that she should’ve had. A life without hospital appointments, without fear and worry, a life where her own body wasn’t trying to hinder her. I have to skip past stories on instagram, or videos on tiktok of babies sitting up, and crawling and moving around, because they make 

me so jealous that I can’t see straight. I get so angry that this isn’t our life, that everything will be so much harder for her. Then I look at her, and I let the grief wave over me, I try and let the anger and guilt go, and I look at this beautiful, remarkable little warrior. Her life will be harder, that is true, and we don’t know how much harder yet, but this girl is a fighter, I know that in my bones. She is the smiliest, happiest baby, and she has gotten so strong from the day we came home from the hospital. She tries every day to do what must feel impossible to her. She rolls around, kicks her legs, and is now a firm believer that nap times are for the weak. She is as curious and as sweet as her brother, and just like him, she is completely magical in every way. I wish everyone could see just how phenomenal she is. We might not have imagined this life for her, and it might fill me with more panic than I can ever fully articulate, but everyday I am thankful for her. I am thankful that I get to be her mum, that I get to be the one by her side as she grows, and continues to be exceptional, that I get to protect her. I am thankful that her dad is who he is, that he adores her more every day, and that her brother will be an even more fierce protector than we could ever be. I will remind her that, no matter how tough it gets, or how cruel people can be, she is made of magic and stardust. She was made for us, and she is perfect, and I will tell her that every day of her life. 


If you've gotten all the way down here, congratulations, you deserve a Blue Peter badge, and possibly a large drink. Thank you for taking the time to read my ramblings.


I hope you're all well.


Becca


                                           

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04 April 2020

#3--Surviving a Pandemic when you have some Seriously Bitchin’ Anxiety.

14:21 | Posted by
Look, I’ll be honest, this could be the shortest post ever, because honestly, I don’t have a fuckin’ clue. 
I, along with literally everyone else in the world, have been having a hard time with the fact that everything seems to have gone to hell in a very large, rickety basket, that may or may not, have been built by a blind, inept toddler, who only has control over one arm.
It’s all just a bit mad, isn’t it?

Sunshine before the Social Distancing 
 My partner and myself are both classed as Key Workers, so we still have to go to work. Obviously, we’re both incredibly lucky to still a) have a job, and b) be well enough to get to work, but it’s still very difficult to get out of bed every morning, knowing that you’re putting yourself and your family at risk. As I’ve mentioned EXTENSIVELY before, I have some pretty sweet anxiety (try to not be too jealous), and anxiety in the time of Covid-19--much like love in the time of cholera--is really not the one. Or maybe it is, I never finished the book. Every time I get on the train for work, I worry that this will be the time I’ll get it, or every time he goes to work, I worry he’ll catch it from a customer who doesn’t feel like telling him that they’re quarantining. I worry about my family, his family, my friends, their friends; I am a constant ball of worry and stress. I try my best to keep my panic to a minimum, or at least keep it internal, because I’m worried if I told people how much I actually worry about literally everything, they might actually think I am insane. I mean, I'm even worrying about my worry. Everyday in work we sit and chat about what’s happening, and I can feel the panic rising inside, but I have to pretend that I’m not completely freaking out, so I have become the champion of Changing The Subject. 

‘Cold today, isn’t it?’ ‘Aye, a drink would be lovely.’ ‘Isn’t starting a new job in a the middle of a pandemic a terrible idea?’ Any number of inane subject changes, all to avoid talking about our spiralling into what I imagine an apocalypse feels like. It’s like 28 Days Later out there, except everyone’s fighting over toilet roll and battering old people out of the grocery aisles, rather than worrying about zombies.

With that all said, here are my top tips for not Completely Freaking the Fuck Out, I hope they help you, and if you have any other ideas, let me know! I am always open to more ways of not just being a ball of panic all the time. 

Find a place that makes you feel relaxed
1)  Change the subject! I am very open about this; I will just stop talking about something if it makes me uncomfortable. My go-to technique is to slowly stop replying, and then completely change the subject. I am not subtle about it, but I also have no shame in it. Don’t talk about things that make you feel shitty, or stressed if you don’t need to. 

2)  Avoid the news and social media! Keep up with developments when you can, or when you need to, but don’t submerse yourself in every piece of news that comes out, because you will drive yourself mad with worry. The media exists to inform, but also to sensationalise because they want you to keep clicking on their links, keep buying their papers, keep talking about their stories. Please remember that the media works as a business; not everything they say is with your best interests at heart, it’s with theirs. The more dramatic the headline, the more they sell. Take everything with a pinch of salt, and try not to just read every terrible piece of news emerging. Read what you need to be informed, and then click away. I’d take the same approach with social media, even though I am more than guilty of wasting hours on it. Facebook is littered with news that has never met a fact checker, Twitter is full of angry people and conspiracy theories, and Instagram is bursting with people who want to convince you their lives are better than yours. Get your fix, and then move on. 

3)  Find something Positive! Find something that makes you happy, something that makes you smile and forget what’s happening for a little while. I mentioned in my last post, I have started writing two good things that happen everyday. It’s not always easy, but it does force me to realise that not everything is terrible. So try finding something everyday that brings you a bit of joy, something that helps you see that not everything is awful, because if we only focus on the shitshow around us, we’d never want to leave the house anyway. With that being said, don’t feel like you have to be positive all the time to keep morale up, just keep on top of your feelings; if it all feels like it’s getting too much, talk to someone. You’re not under any obligation to do anything, other than take care of yourself. 

4)  Don’t put Pressure on Yourself! I’ve seen so many people setting mad goals for them to achieve during their self-isolation. Look, if you want to learn a new language, write the new War and Peace, or cure cancer, more power to you, but equally, if all you want to do is survive, then go on with your bad self. I’ve seen so many parents convincing themselves that they must educate their kids to the same level that their teachers would, and I mean what I am about to say in the nicest sense possible. Teachers are people who have trained how to teach your kid shit, stop trying to come up with a better curriculum than the trained professionals. Just do your best, make sure they don’t become illiterate, and enjoy an extra glass of gin to celebrate surviving spending another 24 hours enclosed with hyper children who are desperately trying to escape. All you can do during times like these, is look after yourself and the ones closest to you. 

5)  Keep Yourself Distracted! Listen to music, read a book, watch TikTok for 16 hours, find a new show to watch, find 10 new shows to watch, enjoy spending time with your family. I know that last part might be difficult when you’re stuck in isolation, and your kid has asked you for the 300thtime if they can have another biscuit, or if they can they go to the park, and you’ve watched your 75thepisode of Hey Duggee, but honestly, I’d love to be home with my kid, even if he is annoying the shit out of me, because at least we’d be safe. Just try and find something that makes it easier to see something good in each day. Maybe you get to watch a really sweet episode of Hey Duggee, or maybe that glass of wine at the end of the day tastes extra good. I’m not suggesting you take up alcoholism, but if a glass of wine helps get you through the days, you do you hun. Spend time in your garden, or go for a walk somewhere quiet. You are allowed to get fresh air, just don’t be a dick and go with 30 of your closest pals.  Break your day up with different activities, and hopefully it’ll help the time pass quicker.
A ray of sunshine.
I know these all seem very vapid, and when I’m feeling particularly anxious, the existentialism hits me hard, and I wonder what the point even is in any of it, because in the middle of all this; of life seeming to have ground to a stop for most of the world, of people dying, of people losing their jobs, their financial stability, it’s hard to see a point, it’s hard to find the hope. That’s the thing though; if we allow ourselves to just wallow in that despair, we will never come out the other side. To find the other side, we need to find a reason to look for it, and the only thing that gives reason to something like this, is hope. So even if these tips for helping you to Calm the Fuck Down, seem wildly obvious, hopefully seeing them written down will help keep them in your mind when it all feels like it’s getting too much. 

Keep safe, 

Becca
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25 March 2020

#2-positivity journey.

15:27 | Posted by
I wrote this all before the COVID-19 outbreak, and never got round to publishing it, yet it seems more apt than ever. It is such a tense, scary time to be alive. There is so much uncertainty and fear, and everything seems so very overwhelming. Every time I go to work, I worry that this will be the day I catch it, that I’ll bring it home, that I’ll infect someone I love, and it's bloody terrifying.
 On the flip side—those who are hoarding toilet roll and pasta aside—the way people have stepped up for society is truly awe-inspiring. The hospitals, the supermarkets, the public transport, the teachers, all these people who too often get overlooked, are helping keep some semblance of normality for us, and they cannot be praised enough. No matter how dark things may get, the gratitude we should feel for them should always shine bright. It’s so important in times like these that we always look for that light, because we’d be lost without it.



Recently I’ve been trying to lead a more ‘positive lifestyle’. Nothing particularly dramatic—I haven’t signed up to retreat to connect with nature, or commune with my inner spirit animal or anything like that (although, for the record, definitely something cool like a tiger, and not the more likely scenario of a sloth). I’m just trying to be kinder to myself, not letting the little voice in my head convince me that every bad thought I’d ever had is true—that everything is my fault, that those people are definitely laughing at me, that everyone thinks I’m a bad person, that I deserve to hurt, all that fun stuff. I’ll not lie; it’s tough to train yourself out of thinking the worst about yourself when you have been doing it for so long. 

I’ve been having a difficult time with my depression. I’m used to my sadness being a constant companion; like a friend who doesn’t realise the party is over and follows you around making ‘jokes’ that are meant to be funny, but are just kind of mean. That sad, angry little voice that disguises itself as your pal, that tells you all the things you think you need to hear because it’s true. That voice is, frankly, a little bitch. Professionally, I’ve had a tough time at work—not knowing where I was going to be, how I was going to get there, if I would like it there. Changes like that are tough for anyone, particularly tough for someone who has a small breakdown over ordering first at a restaurant. (I desperately want to pretend that last part is a joke, it’s not, it has absolutely happened.) I spent most of the past 3 months alternating between panic attacks, crying, lying and staring at the ceiling for hours, feeling sick all the time, and just being really angry. I just felt so incredibly defeated by something that I couldn’t comprehend. I’m good at my job. I’m good with customers, I’m good at helping, and I’m hardworking, so to be treated like that was heartbreaking, because I didn’t know what I’d done wrong. My anxiety flared up in the worst way— I couldn’t sit still, I was agitated constantly, and my brain would not.fucking.settle. The blind panic was the worst, because that led to the crying, then the fear, then the mind-numbing realisation that this was going to happen all over again tomorrow. There were points, when I would just look at Eli, desperate to play with me, and I would just think I was utterly useless I was to this child. This ray of sunshine and happiness, who just wanted me to do something, and I was just gripped by this terrifying wave of ineptitude. I could do nothing for this kid, because I could do nothing for myself. I would look into his face that held nothing but adoration, and all I could think was ‘you deserve a better mum’. 

After a while, the neverending onslaught of shitty thoughts and panic attacks just became the norm, I’d be walking through Tesco thinking about pointless things I wanted to buy, like the iridescent shell penholder currently sitting on my desk, and then the next thought would be ‘imagine how sweet it would be to just disappear’ and I’d find myself nodding along like those are two perfectly normal thoughts to put together, and then I’d get distracted by a mug I didn’t need. This constant train of incoherent thoughts that would ebb and flow, until one day, in a moment of clarity, I realised it probably wasn’t normal to daydream about just disappearing. I booked an appointment with the doctor, swore I wasn’t going to cry again, cried everywhere, and then was prescribed anti-anxiety medication. In my head, part of me thought I had failed in my control because I had done well without medication for so long, I always managed to reign myself back in when it got bad before. The funny thing is, I would slap anyone else silly who had that same thought about themselves. Imagine thinking you failed because you needed medication? It’s like saying that a cancer patient needing chemo failed because they couldn’t cure themselves with their minds. I never cured myself before, I just handled it, and sometimes handling it isn’t enough. Sometimes you need help. Along with the medication, I decided to take an approach a previous counsellor had suggested to me. I decided to try to not just focus on all the shitty things that happened, I would try and find just two good things that happened each day. Two things, so that when I was feeling low, it would force me to think about my day, to search for something that made me smile, if only for a moment, so I’d know that not everything is awful. It’s not revolutionary, but it works. Some days it’s really, really hard, some days it’s not, but the main thing is that I have managed to find something for each day, and that’s a big thing for me, and I’m proud of myself for trying.

I hope you’re all well, take care of yourselves and each other.
I’ll write to you soon,
Becca.
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27 January 2020

#1--back at it again.

14:04 | Posted by
Sometimes I worry that I’ve left it so long between actually writing something, that I’ve forgotten how to write. I constantly panic that my words have dried up and left me; that I don’t know how to just concentrate long enough to string a vaguely coherent sentence together. What could I possibly have left to say that would be worth reading, that I haven’t already said? I used to find writing really therapeutic, but then I allowed myself to get wrapped up in my own expectations. Every word I wrote had to be gold; it had to be a gold-covered nugget of pure, unadulterated wisdom that would exponentially improve someone’s life, and that’s a lot of pressure to put on yourself. 

Every year I say I’m not doing the ‘new year, new me’ bollocks, because that shit just never works for me. I always have such good intentions, but I know come February, I’ll be right back where I was, just meandering through life. I’ve never been particularly good at planning my words out; most of my writing is a sporadic thought that strikes and then flows out. Whenever I’ve made a concentrated effort to plan something, the inspiration shrivels up and dies like every houseplant I’ve ever had. All of a sudden, every idea morphs into a 3 hour Instagram and Facebook scroll, and then by the time I decide it’s time to put my head down, my kid is either awake and kicking off, or it’s 3am and I’m falling asleep at my computer. Hell, I say I’ve never been good at planning my words; frankly, I’ve just never been good at planning my life. I’m very good at a daydream. If it were a career, I’d be top of my field, but living practically has never been a skill I’ve been particularly good at. I’m what I have politely deemed a ‘romanticist’, or what I have also less politely deemed ‘a liability with a poor grasp on reality’. I could probably blame too many movies, or too many books, but I’ve always been a drama queen with big dreams. The big issue is that those dreams are unfortunately wildly incompatible with my depression and anxiety. It has taken me a long time to get to where I am now, mildly content with who and what I am--which might not sound much--but is a very big deal to me. I still have days where I’d much rather lie in bed and hate myself in peace, where I’d ideally like to avoid every mirror and reflective surface because it’s painful to look at myself, but compared to where I was, I feel like a superhero. I’ve had depression since I was…11? I’m pushing 31 now (good grief). That’s a long time to feel like your dreams aren’t valid, realistic, or achievable. I mean, to be fair, some of dreams aren’t valid, realistic OR achievable—the chances of me marrying Jake Gyllenhaal seem pretty non-existent at this point, but some of my dreams were things that, in another life, would’ve seemed perfectly attainable. I always wanted to go to university, for me that just seemed the next logical step. I was decent at school, why not just keep going? I had this perfect idea of how it would be (which I blame entirely on my unhealthy obsession with American teen rom-coms) and I was sorely disappointed when that is not how my uni experience went. I would watch my friend’s power through their work, with a confidence that seemed utterly awe-inspiring to me. Now, with the gift of hindsight, I can see that wasn’t necessarily the case. For me though, it was painful. Every word, every sentence, every thought, had to be second and triple guessed, if it didn’t pass the triple guess, it was deleted. God knows how many times I would just delete huge passages of work, just because I hated everything that spilled from my brain. I once deleted 1,000 words after reading it for the 45thtime, 3 days before a deadline, closed my laptop, curled up on my bed and cried for 2 hours because it felt like I just didn’t get it. I wish I could read all the work I deleted now, just so I can tell baby Becca that she isn’t stupid, that what she has written is worthy of attention, is worthy of reading. On my worst days, I would spread my work out around me; all the books and notes I had taken, set my laptop up, and just sit and stare at the screen for hours. On those days I’d sit there for maybe 6-7 hours, and write about 15 words. I’d ‘finish up’ for the day and pretend like I’d had a productive day to anyone who asked, when inside I was, to put it bluntly, freaking the fuck out. I had days until my deadline and I felt like I could do nothing except watch the time pass by. I met some of the best people I’ll ever meet when I was in uni, but I was also the most miserable I think I’ve ever been.

I don’t think there’s really a point to this; I think this is just me trying to get back to something I love (writing, that is, not narcissistically talking about myself). I’m trying to get back into the habit of thinking of writing that is something I can do for fun, not something that has to change the world. If something I write helps someone in some way, then that’s amazing, but if not, as long as it helps me. I think I have to get in the habit of thinking selfishly about my writing, that it’s okay just to do it for me. If I don’t want to read my own writing, after all, why would anyone else?

I hope you’re all well; it has been a very long time. I will, hopefully, chat to you soon.
Becca.

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22 January 2018

An Idiot's Guide to Starting Motherhood

10:42 | Posted by

Hi, 

 Since my last post (make sure and read to catch up), I only blimming well went and had a baby, didn't I!? To say that my life has changed in the most monumental way, would be nothing short of an understatement. I don't think you can ever actually prepare yourself for becoming a parent, no matter how many books you read, or how long you have to get ready. Once it happens, it's nothing short of mind blowing how little you really know. That's how I felt anyway. I frequently look at my son and panic that I'll not be able to keep him happy, or even on a more fundamental level, I'll not be able to keep him alive. The amount of times I have panicked every time I have lifted him up, that I will fall and crush him, is nothing short of insane. Every time he pauses breathing, I have to stop from having a nervous breakdown. Even now, he's playing beside me on his playtime mat, and he has the most brutal hiccups, and part of me can't stop thinking that they aren't just hiccups, they are something more insidious. I mean, on a logical level I know they really are just the hiccups, but the emotional part of me is very loud and she demands to be heard. So, I guess we're going with blind panic rather than rational thought. 
Elijah, one day old.

 Elijah is now four months old. For four whole months we have been blessed with this adorable bundle of joy and happiness, who loves cuddles more than anything, who adores his dad bopping his cheeks, and who smiles for everyone except the camera just to annoy me. He is a happy, joyful boy, who is loving learning about the world. He loves studying people's faces and using his hands and mouth to discover everything, and watching him learn is my greatest happiness. I always thought people must be exaggerating when they said that having a child creates a love like no other, but the second he was put in my arms, that feeling of love hit like a tidal wave. A terrifying, overwhelming, awesome tidal wave. I had been very apprehensive of how I would feel after giving birth. I have a long history of depression and anxiety, so I was very aware that I would be more likely to suffer from post-natal depression, but thankfully there have been no signs. I keep a close eye on my mood anyway, if the feelings of negativity arise, I deal with them head on because otherwise I would let them overwhelm me. It's very easy to let the negative feelings take root, because there really are no words for just how overwhelming it is to become a parent. One minute, you only have to make sure you keep yourself alive, the next, there's a tiny human being completely reliant on you, and they're screaming and you don't know why, and holy shit this is terrifying. The moment he smiles though, that single moment is enough to make me feel like I can do this. 
Look at that smile!

 Having said that, I wouldn't be able to do this alone. I am very lucky to have the most fabulous fiancé, and a wonderful family to help and support me, I can only imagine how scary it must be for those who have to face it alone. In these four short months, there have been a few things that have made this transition slightly easier, so here are my top tips for how to cope with having to look after a tiny person.

 1. Look After Yourself.
Seems a bit counter-productive when you're meant to be looking after someone else, and I'm not suggesting that you ignore your child while you pamper yourself and paint your nails. What I mean is, don't let yourself go by the wayside, make sure that you don't just exist with only one purpose. Particularly, I would say, keep a close eye on your mental wellbeing. Postnatal Depression is far more prevalent than society lets on, and it just makes a difficult job even harder. If you are struggling with your thoughts at all, let someone know. 

 2. Take Advantage of Any Help.
My fiancé has been beyond fab, and our families have been wonderful and supportive whilst we've adjusted. Beyond that, we've been incredibly lucky with our midwife and health visitor who have been so helpful and informative. Don't be afraid to ask for help the you need it, I know how much we can want to do everything ourselves, but wearing yourself out only makes everything more difficult. If someone offers to cuddle the baby so you can nap, do it. It doesn't mean you can't cope, it just makes it a little easier.

 3. Make Use of the Medical Professionals.
Here in the UK, we're incredibly lucky to have the NHS, and the beyond fabulous human beings in work within it. Like I mentioned before, we have been very lucky with our midwives and our health visitor. They have been helpful, supportive and encouraging. They've never made me feel like I'm asking a stupid question, and have been a wealth of information at every point of the journey. If you are lucky enough to have medical professionals you like and trust, make use of them. 

 4. Don't Compare Yourself.
It's hard not to compare yourself to others in a social media heavy society. We are lambasted with images of picture perfect mothers with their perfectly presented children, who have absolutely no puke on them. It's a bit hard to take when you're still in your pyjamas at 4pm, with unwashed hair, puke on your t-shirt, and are in the middle of changing your child's explosive poonami situation that has gone all over their vest. The reality is, those images are only a split second, carefully curated image of a life, so there's no point in feeling bad if you don't look like that. As long as you and the baby are happy and healthy, you're doing just fine. 

 5. Prepare Yourself.
Look, there's only so much you can prepare yourself, because parenting is the equivalent of throwing yourself in the deep end of the pool with only a pair of armbands to keep you up and no knowledge if how to swim. It's very much a learn on the job situation, but I found that reading books helped me to get in the right mindset, and they gave me an idea of what was going to happen. The three I found particularly helpful were; How to Grow a Baby and Push It Out: Your no-nonsense guide to pregnancy and birth by Clemmie Cooper, The Positive Birth Book: A new approach to pregnancy, birth and the early weeks. by Milli Hill, and The Happy Birth Book: Your trusted A-Z of pregnancy, birth and the early weeks by Beverley Turner. I know that books aren't everyone's cup of tea, but if you are after as much information as possible, they are a fab source for getting yourself ready. I personally wish I'd been more prepared for Breastfeeding. I knew that it would be difficult initially, but no-one mentioned how much it takes out of you for the first four weeks, or that the cluster feeding to establish your supply is so draining. It wouldn't have changed my mind, but it would've made me mentally prepared, at least. Now, I wouldn't have it any other way, and I love feeding him, but it would've saved some tears at the start! And, of course, if books aren't your thing, ask people who know. Friends and family who've had kids are a wealth of information that they'll be only too happy to share, so don't be afraid to ask, there's no such thing as a stupid question. There are always resources online as well, parenting groups on Facebook for support for breastfeeding, mumsnet, etc. A quick search and you'll find a forum for you. 

 The best advice I could give, is to not overthink it. Don't allow yourself to work up into blind panic, it'll just make it harder. Yes, childbirth will hurt like a bitch, yes, parenting is the hardest job in the world, but when you see them, you'll know it is worth it. It is so worth it. 
First smile.

 Right, I'll leave it there for now, this has taken 60 years to write and I have a crying child looking to sleep and eat at the same time. I will chat to you all later, and I hope this helps someone! Remember, there's always help if you're struggling, never be afraid to ask. You can keep up with our families shenanigans on Instagram, as I am always on there.
Hope you're all well,

 Becca xo


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16 October 2017

The Perfect Pregnancy?

10:37 | Posted by
*Please note, this was written a good two months ago. At least, I started it then in one of my rare productive periods. I am now no longer pregnant, and am now the proud owner of a beautiful baby boy! Expect a blog post about that in the next year. I mean, I'll aim for sooner, be we all know my limitations.*

When I was younger I used to put a pillow up my t-shirt and waddle around and pretend to be pregnant. Not because I had an overwhelming desire to be pregnant at eight, but because I thought that pregnant women were the most beautiful, fascinating creatures. To me, they were magical. Now that I am actually one of those pregnant creatures, I don't feel beautiful, or fascinating, or even magical. I think my body is doing something miraculous, sometimes I'll just stare down at my stomach in utter disbelief that there is a tiny human being growing in there, but I don't feel particularly miraculous. I feel tired. So tired. 

It's my own fault for falling into the social media trap, I spend half my life on Instagram and Facebook, so it was very easy for me to fall for the image of social media perfection. It was even easier to make myself feel bad for not being the same as the pictures of perfection that these accounts portray. I have not spent my pregnancy dressed as though I've waltzed off the pages of Vogue; I've spent my pregnancy mildly sweaty, living in leggings, and looking kind of homeless. I have not been an avid yoga attendee; I've been an avid attendee of my bed. I spent the first five months of my pregnancy trying not to throw up and failing miserably, I had a brief month where I felt vaguely energetic, and now I'm just utterly exhausted. My back aches, and my adorable child is definitely sitting on a nerve somewhere because I can't walk for longer than ten minutes without a shooting pain travelling down my right leg. I wanted so, so badly to be one of those pregnant women who just smiles and glides their way through pregnancy; who eats all the right food, does all the right exercise and who doesn't dress like they've just rolled in their closet and thrown on whatever shit actually fits. I, however, have not eaten the right food. I have spent the first five months eating barely anything, and then the rest eating food that I spent the last two years avoiding. The changing body image has been a very difficult thing for me to wrap my head around. I spent over a year and a half losing five stone, which was really fricking hard. Like, really hard. Now, when I look in the mirror, I see my face as it was, my ankles are swollen and I feel desperately unfit because my lungs are being crushed. It's been hard, I won't lie, and it's been a massive adjustment because I had gotten used to liking the way I looked, then slowly, I've watched my body slowly morph back into the body I desperately wanted rid of. It's been a bit of a strain on my confidence and my mental state, but at the same time, I'm utterly, utterly obsessed with my bump. I can't go a day without stroking it, or holding it; hell, I can't even go an hour without touching it. I always hated my stomach, and now it's my favourite thing to hold, it's incredibly odd. It's a bit of a catch-22 situation; as much as I'm a bit devastated that the body I worked so hard for has changed completely, I don't regret the events that have made it change. I think it's important to say; regardless of any negative feelings I might have felt during my pregnancy, I know how lucky I am to have been able to get pregnant and have a safe pregnancy. I might have thrown up a lot, but apart from that, I was pretty blessed.
See what I mean? Belly cupper.  

The main advice I'd give to  anyone expecting is this; don't put pressure on yourself to be like anyone else. You do whatever you want, or need to do. If that means getting up for sunrise yoga classes, fair play to you, you mad woman; if it means eating an entire tub of ice-cream, more power to you. You are the one who is pregnant, you look after yourself however you see fit. Obviously, some semblance of a healthy approach is ideal and you should look after yourself the best you can, but don't put pressure on yourself to live off kale salad and smoothies, mostly because kale is horrific. I read so many pregnancy books and had such high expectations for how I wanted my pregnancy to go, but you really can't micro-manage your body, whatever your body wants to do, it will do. You can make life easier for yourself, but you aren't going to be able to completely change how your body reacts. I spent the first five months trying everything to get rid of my sickness, and while some things helped, the nausea was not to be defeated. I desperately wanted to be more like the women on Instagram who seemed to flourish and thrive in pregnancy, and look completely fabulous, but I have slowly come to terms that I just don't have that in me. And that's fine, it might not be what I wanted initially, but once I realised that it's not reasonable to expect to be like that all the time, I was happier for it. If you spend 95% of your time looking like leggings are the only thing you have in your wardrobe, and the other 5% looking put together, then you're doing well. Every time I actually manage to make an effort I feel like I deserve a medal, which just makes it more special. 
Besides, we may as well all get used to never looking put together again, babies have zero tolerance for nice outfits. All it means to them is they have a better looking target to spit and poo on!

I'll leave it there, and I'll hopefully chat to you soon. If you fancy keeping up with my craic, I'm on Instagram forever, which you can find the link for on the side or here, or on Facebook, which is linked here. I imagine they'll soon be filled with baby pictures because that's just the kind of person I am.
Hope you're all well,

Becca xo

UPDATE: since writing this post, I have had a lil baby boy, spoiler alert, he's perfect.
The best thing that's ever happened to me. Or Elijah for short.

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26 April 2017

What to Expect When You Weren't Expecting.

12:21 | Posted by
I mean, once every four months is almost as good as once a week, right?

 So, as is the way, life has happened and derailed any sort of semblance of a blog plan that I had. Let's catch up, shall we?

 Over Christmas I had felt a little nauseous, but I put it down to eating trifle and chocolate for breakfast, because let's be honest, that isn't ideal at the best of times, let alone everyday for at least a week. I know, grown up choices are something I'm SUPER good at. I thought nothing of it over the Christmas period, until it came time for us to leave to go back to England, and then I realised my monthly gift was late. Being that I am usually super irregular (which I like to use as an excuse for my lack of timekeeping in real life too, it's obviously an inbuilt genetic flaw) I would normally think nothing of it. This time though, this time I just knew it would be different. It's a very odd feeling to just know, in your bones, that you are about to change your life forever in the most massive way possible. 
I tried to push it to the back of my mind, half hoping my period would show up, half hoping it wouldn't, when eventually I realised it was time to just accept the inevitable. I didn't want to be that girl who gives birth in the toilet because they 'didn't know' they were pregnant, especially since I already knew the truth. So, in the very glamorous aisles of Asda I decided it was time to find out once and for all. I bought a pregnancy test (and a DVD because self control is for the weak) and scurried home. As my luck would have it, the first test we took came up with the weakest positive ever, so weak, in fact, that my fiancé was convinced that it was just a false alarm. I wasn't as convinced. The next morning off, we took another test and it was a full-on, lights blaring, sirens flashing, holy shit this is completely positive. As soon as we saw that, we knew we had to go to the clinic, because OF COURSE it just couldn't be straightforward. I had an IUD, which is an implant designed to last 5-10 years and is 99% effective, obviously our child was just very determined to show up. The main issue with still having the implant in though, is that it can increase the risk of a miscarriage if you leave it in, or take it out. We went for a scan to see where the implant was resting, and the first time we saw our Bean on the screen, I knew then that I would love this little blob for the rest of my life. This tiny little life was already the most important person in the world to me, which made the reality that something could go wrong even more terrifying. Thankfully, everything went perfectly, and that tiny blob has now grown into a much bigger blob, apparently they are now the size of a Heirloom Tomato (thank you Google). 

 There's so much about pregnancy that I had literally no idea about, I knew about morning sickness and all that fun stuff, and I knew from Kim Kardashian that my ankles could swell into balloons and that I should avoid flowery dresses and the Met Gala, but everything else was just part of a terrifying learning curve. For example, I didn't know that morning sickness is a myth. There is no such thing as morning sickness, that shit will haunt you all.day.long. I never knew I could feel so nauseous, or be so sick in all my life. As soon as we realised we were pregnant, the sickness hit me like a tonne of bricks. I couldn't eat what I used to like, anything I did eat came back up, my favourite foods were the work of the devil. I'll not lie, it's been shit. I miss actual meals that stay in my stomach for longer than 20 minutes. The other thing I didn't quite anticipate was the aches and pains, I mean, I knew there'd be aches, but I sort of thought that'd be much later down the line. Wrong. That shit starts about 2-3 months in, and there are muscles that hurt that I didn't even know existed. There's this one particular pain, it's called 'round ligament pain', and it feels like my muscles are tearing themselves apart, which, I mean, they sort of are, but why must it hurt SO MUCH? And my hips hurt. I feel like I've turned into a decrepit old woman. My main issue is actually my mental health, if I'm honest. I went through quite a low patch when I first realised I was pregnant. I just felt very...down, I guess is the best word for it. Not because I was sad I was pregnant or anything like that, just because sadness just sometimes happens to me. With all the extra hormones floating around (and there are SO MANY hormones), it was a lot to deal with. The pre-existing issue of my depression and anxiety has left my partner and I concerned about post-natal depression, because chances are I'll be pre-disposed to it given my history. At this point, all we can do is keep an eye on my mood and hope for the best, which is cheerful. The other issue I had was my changing body shape. The feeling of bloating started really quickly with me, and given how hard and long I worked to lose five stone, watching my body get bigger was a little hard for me to deal with, if I'm honest. Now I love my bump, but every so often, I'll look in the mirror and see something that's gotten bigger and I'll panic just a little that I'll never getback into shape. Vain, but true.




 I'm tired, my hips hurt, I make noises when I try and move, I am finding it hard to bend down and get back up, and if I sound like I'm complaining, that's because I am, but I am also deliriously happy. Sometimes, when I'm walking to work, I'll just start smiling like a crazy person at nothing in particular, because I am so excited for the next step. I cannot wait to meet this little person that I have helped to create; I could spend hours imagining what they will sound like, how they'll behave, what they'll look like. I wonder if they'll get my curly hair, if they'll get his beautiful eyes, if they'll be as stubborn as the two of us, if they'll be as goofy as him, if they'll have an obnoxiously loud laugh like me, I just can't wait to see what kind of person they grow up to be. I'm terrified that I will have a role in forming this tiny human; all I can do is hope that I am half as kind, and as wonderful my parents were with us, because my childhood was a dream. They allowed my sisters and I to make our own decisions, and be our own people, even if they didn't necessarily agree, and even if they thought I swore too much (sorry Dad). 



 There are things I wish I could change though. Obviously this wasn't a planned pregnancy, and I don't entirely love the stigma that surrounds that, and I don't love the extra layer of 'holy shit, this is happening quickly' that it has added. I wish I'd had more time to sort things out, I wish we'd been married because my family is quite traditional, I wish we'd already been moved home in a less stressful manner because I am dreading every second of that, I wish I'd been a wildly successful author/screenwriter, I wish we had more money, I wish I'd saved more, I wish we'd a house sorted. I wish there were people here who aren't. There are so many things I wish I'd been more organised about. I sincerely hope this child doesn't get my scatterbrained ways, because Lord help them if they do. We have to move home and start new jobs in the matter of months, which I am exceptionally stressed about because I really do not do well with new people and places (thanks social anxiety!). It took me at least a year to get settled into England, and now I have to do it all over again. That's the other thing that I am dreading; leaving my friends in England. I have met some of my favourite people here, people who I want to know for the rest of my life. I have changed my life over here, for the better, and I have made terrible life choices here, and some fantastic ones. Even though I know we have to leave, I am a little devastated at the thought of actually doing it. 
Despite all these wishes and worries that are sometimes completely overwhelming, I know that we are surrounded by people who will love this child unconditionally and who have always supported us in everything. The timing might not be perfect, but given my inherent lack of timing, it was never going to be perfect, and we might not be married, but that won't affect our ability as parents, or make us any less devoted. All I know, is that I have never known such fear and such excitement in all my life. I am beyond awed that I can play a role in creating and shaping another human being. I'm so excited to begin this whole new chapter.

 I'm pretty sure that's enough babbling now. I hope you're all well and fabulous, I will (maybe) chat to you again soon. Hopefully. I'm working on getting better!
Too cute not to get. Child has no chance!
Becca xo


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