‘Don’t air your dirty laundry.’
My mother’s casual words that day never struck me as particularly poignant. In that adolescent stage, I honestly didn’t really give a fuck. She was always saying things like that, when I look back I can see that they were a mixture of life advice and old wives tales. At the time, ‘Marry in May rue the day’ certainly didn’t seem like the kind of thing I needed to hear. In fact I believe I sort of drifted through my early teen years with a kind of detachment, born of being so self-absorbed and wrapped up in my own affairs that I only heard half of what was told to me.
I always had my head in the clouds, but not to the extent you would have thought me an airhead. Just that I marched to my own drummer, and never quite fit in.
As an adult I can recognise now that my mother knew she didn’t have much time left, and that perhaps her fridge magnet worthy sayings were her way of giving me little nuggets of advice that would hang around in my head for years to come. But of course, as a headstrong hormone fuelled teenager, I didn’t see it that way at all.
Having spent my life around hospitals with her I knew that she was unwell. It was a repetitive procedure, she got ill – she went to hospital – she got better – she came home. A cycle of sorts, that I had come to rely on being the way of things. So when I found myself at the gym with one of my older sisters on an evening in March 2007, I didn’t think twice about going to London to see my then boyfriend that night. At seventeen I was quite old enough to work and run the house in her absence, so I felt sure that a night away wouldn’t make a difference. My sister asked me before we left if I wanted to go and see Mum for a quick visit but having already made my plans I declined.
That night at about 11pm I changed my mind and decided not to stay and went home. Something as seemingly unimportant at the time enabled me to be exactly where I needed to be the moment I needed to be there. Around 1am on March 23rd I awoke quite suddenly. I opened my eyes and can still remember the flashing green lights of the internet modem in my bedroom. I was about to close my eyes and go back to sleep when I heard a distinct humming noise from downstairs, like people talking, except it was the middle of the night and only my stepfather and my sister were even home. Curiously I got up and went downstairs. I stopped on the stairs as I saw my older sister I had been at the gym with the previous evening, standing in the living room with my stepfather distraught on the phone. She looked at me and in an instant, I knew something was terribly wrong. I don’t even remember walking down the stairs, but I recall walking into the living room and being told that my mother had died. I sat down and felt my arms growing heavy. So heavy that I tried to straighten my body to take the weight but instead of sitting up I remember sinking. The heaviness followed then in every part of me. I felt as though I was viewing the room as an observer, a third party with no emotional connection. Just standing there viewing the scene in front of me as three strangers dealt with the early waves of grief. Then as startled as I was waking up moments before, I felt like a door had slammed shut. I jumped, seemingly back inside myself and after a brief moment of confusion at my bizarre change of perspective I heard my sister telling me the details of what had happened, there were some particulars that we weren’t going to enlighten my younger sister with as she was just gone 14 at the time.
My younger sister appeared down the stairs and walked quite sedately into the room. My older sister repeated an age-appropriate version of the news. We sat there for a few minutes in silence as our stepfather wept. I felt as though I was intruding on something very private, and that his tears made mine feel insignificant. Washed with guilt for not feeling worse about it all I barely noticed a car pulling up outside. My godparents for want of a better word had arrived. My mothers best friends who made a forty minute car journey in twenty five and only got caught by the police at the top of our road, then subsequently given an escort to our door at half past one in the morning as though they were royalty. Then they were there and it was what I later came to dub ‘the first wave of hugs’. I can’t say we were a particularly touchy-feely kind of family, but this wave of embraces was the first of many.
I used to smoke Mayfair superking menthol cigarettes. (Forgive me, I was young.) My older sister and I took a quick trip to the 24 hour garage around the corner, played unnecessarily loud music and used tiny blue torches on our lighters to rave with. At the time it was just us being us, but now I can see that she was doing it to keep me from slipping beneath the waves of grief, and probably for herself as well.
We had to go to the hospital, another older sister of mine met us there, along with some close friends we went and saw her to say goodbye. As my sisters and I sat around the body, I remember again feeling as though I was looking down at the situation as if I were a spider on the wall above. Pulled back to reality by the loud sobbing of one of my sisters. My favourite sister, that I have always been closest to, was not there, as she lives some distance away and couldn’t make it for the most depressing 2am gatherings we’d ever had.
I sat there surveying the scene and remembered for the first time looking at my mothers nostrils and thinking that they were very narrow. Such a strange thing to notice and yet it’s one of the most vivid recollections that I have of that room she was in.
Later in the morning, when morning actually came, we went to a local café together. I had told a friend in the night that my mum had passed and bless her she got straight up and drove to Guildford to meet me for an emergency cigarette. As she took me to the café we almost got side swiped by another vehicle and in the aftermath my emotions were all over the place as the positive giddy relief of having avoided certain death by a vehicular menace warred with the confusion and emptiness of loss, It made me slightly hysterical and somebody got me a can of coke thinking I was having some kind of emotional crash at the stress of the situation. My family, members of the sustenance crisis management team.
I can’t say that I really recall much of what happened over the next few weeks. But a week or so after it happened we had the funeral. Insert standard funeral situation here, I was told the morning of the funeral that I could make a eulogy if I wanted. Thank you for the offer mere hours before I was due to speak in front of a room full of my mothers nearest and dearest. The cocky seventeen year old in front of me decided it would be fine and I winged it. I remember trying to speak and not being able to, which was not part of my public speaking plan I must say. I remember my sister hugged me and wiped snot in my hair and I didn’t realise the microphone was so close and I told her off. Queue canned laughter from the audience, I mean group of gathered mourners.
I did manage to say that mum wouldn’t have liked this, because there were too many flowers and the scent would have made her cough. The people closest to me knew exactly what I meant as my mother had terrible respiratory problems but the group at large probably thought that it was quite rude. I decided that I didn’t much care.
I have been to a number of funerals since, and have come to notice the most bizarre thing or perhaps similarity with burials is that when the service is finished and the nearest and dearest go to the grave side, I’ve noticed that the over 60’s tend to look about the place as though seeing it with fresh eyes and go ‘Oh well it is very nice here perhaps i’ll be buried here too’. It’s not even an exaggeration to say that I have heard those words at almost every burial part of a funeral I have been to. My mother wanted to be buried in the new forest but even in life understood that it was quite some distance from where everybody would be able to visit. (Which is quite understanding of her really, suffer years of cancer and have your life dictated by other people to not even be able to be buried and at rest where you want to when you die as well). She is at an Eco-burial ground in Shamley Green. Where she had a biodegradable seagrass casket and was buried beneath a tree of our choice (an oak). So that eventually It will be a forest of remembrance rather than just another field of the dead. But the way I noticed the older members of our group looking about the place like it was a lovely picnic spot made me feel a little sick and has continued to do so at each funeral since.
We had my mothers wake at the pub she previously worked at, had met my stepfather working at, and had their reception after their wedding at.
So many memories rolled into one building, I recall thinking that I wouldn’t let the sad memories tarnish all the good ones that I associated with the place. For what it’s worth it’s a lovely pub and garden with accommodation. I envisioned us meeting for meals in the distant future, raising our glasses and talking about the old days together. The reality is that my sisters and I have only all been in the same room together once in almost fifteen years since, at my eldest sister’s 40th birthday party. I’ve never been back to the pub.
Fast forward to now and I live in my childhood home with my younger sister and my daughter. We had a discretionary succession and managed to keep the place due to a fortunate situation of somebody not filing a specific piece of paperwork after my mother passed, meaning that the house did not technically go to her spouse – so it went to me instead. This took six years to secure, and in this time my stepfather all but vanished with his new girlfriend he found weeks after my mothers death. We called her the handbag because she was so overly fake tanned that she resembled a piece of leather. I had paid for and kept the house going for me and my sister aside a brief few months when I was 19 where I lived elsewhere.
I had never given much thought to having children. My family are incredibly fertile and it’s a private joke that we are like mother nature herself. Ever flourishing and creating. I have 9 nieces and nephews from my sisters, and with my step siblings the number would be 18. I have always been around children and was not overly keen on the idea of having my own.
After a couple of ill-timed conceptions and subsequent terminations – where I assure you that I had adequate birth control in place much to my chagrin. I had more than enough experience with babies and falling pregnant to last me a lifetime.
For a few years all I really did was get high, and work, and tidy the house. As my younger sister got older, I had more time for myself. Read: more time to get high. There aren’t many things I didn’t get up to in this period of my life. But every time there was a drug fuelled evening misadventure, I was sure to end up waking up on a round about half dressed as a unicorn or some shit. I am not even kidding, by the way. People say they did drugs when they were young because they were exploring or finding themselves. I did drugs to get away from myself. If it meant I could paint all night long I’d snort anything and spend hours on my own creating music and art which was probably all absolutely terrible. If it meant I could get out of my headspace for a while, I would. I had a string of almost relationships, where in they were never official and I was never really treated particularly well. But it fitted with my disassociating frame of mind so I didn’t care. I think my attitudes towards harder drugs really changed when I turned up at a party one night, I didn’t really know anybody there but I sort of drifted from room to room and observed these people with their various poisons, and I found myself in nothing more than a glorified squat , smoking a joint to calm my heart that was beating out of my head because of whatever I had taken before.
I decided that this was not where I wanted to be, and not what I wanted to do. I smoked a little bit recreationally but never anything else after that. It seemed like part of a lost world, and I was glad to leave it behind.
When I was 19 I had a friends with benefits arrangement with a mate of mine.
We were good friends that knew we didn’t want a relationship. I was at his house one day when another friend of ours came over. I had actually gone to middle school with this guy, and then secondary too. Yet we were friends of the same circle and not really friends ourselves. We all spent the day together and it was like I was meeting a totally different person, no longer was he some little shit always in trouble for one reason or another. He was funny, flirted with me and asked me questions and actually had not been in my life through my more awkward stages, so was appreciating my post growth spurt body in a way nobody else did as I had known them all the entire time. Being that this was two years after my mum’s passing I was starting to be a little more grown up myself and felt that he really was too.
Long story short we got together, forever changing my casual arrangement with the aforementioned friend and also changing my view of ever successfully being able to have an arrangement like that again because even when everyone says that it’s casual and no strings attached, someone always ends up hurt.
Over time I grew to realise that no, this guy had not changed much and at 20 was still very much a teenager. I had been running a home and parenting my sister for years by this point. I was grounded, so to speak. I knew my place and what I had to do so I did it. So to find myself in a relationship with somebody who was so flighty, and immature and very much in the mindset of ‘how can I please myself today’ really surprised me. He was emotionally manipulative, used to gaslight me terribly, and persuaded me that there was something very wrong with me. Called me a psychopath and a crazy bitch a lot of the time. Huge plot twist I know, but break ups ensued. On and off for three years after coming home to find a note left for me that he had split up with me, coming to my work to break it off once because ‘then I couldn’t kick off about it’. Getting back from work and realising that all of his things had vanished along with him. Finding out from a friend days later that he had moved in with another girl and was in love. (For a fairly stupid man he certainly was inventive with his dramatic breakups).
Being drawn back in with smiles and flirting and being so damaged from previous relationships and essentially abandoned by my family that the idea of somebody wanting me was so heartbreakingly tempting that I let it happen, time and time again.
I worked at a number of places during this time, but the two that really stuck were a cleaning contract in town and a barmaid job at a working man’s club. I would work the open and lunch time shift at the pub and get home for 4. Go to my cleaning job for 5:30 and finish around 8 to go back to the club to work the late and sometimes the close shifts. Thinking of it now I don’t even have the energy to consider working two jobs but at the time it was necessary and youth was on my side for sure.
We used to have our locals and regulars, and a manager who turned a blind eye to recreational behaviours and a lock in from time to time. Saying that he was there himself mostly, so we never felt we were doing anything wrong. Which obviously now I am well aware of how illegal, and dangerous that really was. It was quite a toxic environment, it’s difficult when you work behind a bar as you have odd hours and get so desensitised to people drinking at all hours of the day. That having a drink before you leave is almost expected. I was never a big drinker, I don’t have the tolerance and I always preferred a smoke. I suppose my vices were just as bad, just slightly different. Or at least that’s how I compartmentalised it at the time.
On one such evening in the summer we had ourselves a little lock in. There were a couple of the old timers, the ones who had been drinking there ‘since before you were born’, and my niece who worked there with me (who is oddly the same age as me and closer to me than her mother, my sister, is to me). We were having a few drinks and one of the regulars really had had quite enough, and he was talking about a holiday he had taken in the sixties, and then all of a sudden blearily looked at me said that because of the shape of my philtrum, he knew I would have a nice vagina.
I am paraphrasing, his actual words were ‘a nice puss’ and to this day that word makes my skin crawl. As if that wasn’t enough to make me decide that I wanted to be elsewhere, he then proceeded to get out and lay his flaccid penis on a bar stool. I remember thinking to myself that this would never happen at my cleaning job. I made a fairly quick exit and went out to the garden to have a cigarette and hide behind the door when I heard somebody say that my niece was a slut. I froze, and listened to the conversation and it was frankly vile. I stepped out with my eyebrows raised and facial expression hopefully asking what the fuck did they think they were saying. When one of the participants of the conversation pushed me. Without thinking I grabbed the back of his neck and brought him to his knees. I then realised it had been a mistake when he grabbed out at me and punched with his other arm. An argument ensued and I told my niece I was done, grabbed my stuff and left. The guy carried on shouting and screaming and as I walked as calmly as I could down the road I saw two police cars come flying up the street towards the club. I had taken my things in such a rush that as I pulled my hoodie over my head I noticed it was a bit snug. Turned out that I had actually picked up a child’s jumper from lost and found instead of my own. Blinking confusedly and breathing heavily after being frightened and leaving the club so quickly I burst into hysterical laughter outside dominos pizza and saw a window full of people staring at me like I had lost the plot.
I got home that night and told my boyfriend what happened and surprise surprise he broke up with me, for ‘putting myself in danger’. I had reacted badly to a situation, but it was exactly that – reacting to something that happened. I was pushed by somebody twice my size but instead of backing away I was full of disgust for these men and the lack of respect, for my niece and for the penis on the bar stool. It doesn’t excuse my actions but I felt it was a reasonable response at the time. I never felt safe at work again, and didn’t work there for very long afterwards.
In July 2012 I had a pregnancy scare (I dislike that term so vehemently; a child is a gift but at that point in my life the idea was terrifying to me). I took a pregnancy test and it was negative, but I just had a weird feeling that it was wrong. Over the next few weeks I thought about it more and more, that I did want a child in the future at some point, because I wanted something to love me so completely. Realising that was not the healthiest of thought processes I put it to the back of my mind. Three weeks later I tested again, positive. I just had a feeling, you know.
I honestly never expected him to stick around. My first thought was that he was probably going to break up with me because of it. Turns out he was proud of his new found virility and that was that, suddenly had myself a child on the way and a partner who was over the moon. I didn’t feel how I thought that I should, something felt off. My boyfriend finally got a decent full time job, and started helping with bills. As quickly as the joy of feeling slightly more stable came, it went. With the full time job came a full time man child who did not want to go to work but certainly wanted to spend all the money he made from working. Having never budgeted in his life he had some unrealistic ideas about how much money he could feasibly spend and still give me a couple of hundred quid. The idea that we could run a three bedroom house on a couple hundred quid a month was as ridiculous as you can imagine. Arguments about finances, about things I needed to get for the baby, constant walking on eggshells and moving money around to squirrel it away so that I could buy what I had too. His presence made me feel like there was a heavy atmosphere over my home. Reminiscent of when I was a child, when my father would come home drunk. A mood settles and everybody is on edge because you just don’t know what is going to happen next. I worked up until my 35th week of pregnancy, managed to sort out the discretionary succession on the house, paint and set up a nursery bedroom and not collapse in a heap. I went to sign the tenancy agreement on the house the day before I was induced to have my daughter. It was a busy week.
If you’re familiar with the induction process of birth then you will understand when I say it’s the longest fucking few days of your life. I was induced due to lack of movement, I hadn’t felt her move as much and was getting worried. I had polyhydramnios, which is excess fluid around the baby. Being approximately the size of a small killer whale at this point I was trying to be positive and get the last hurdle of this pregnancy over with. Three days of stop start contractions, hours of pain for nothing to come of it. So much walking around the hospital that I still know where some things are today because of my explorations that week. Stomping down the stairs from maternity all the way to the lower floor hoping gravity will do its thing and help get the little critter out. Needless to say she did not arrive promptly, it was five days after I was induced that they finally had space on delivery for me. Because I had not had my waters broken they were in no rush, but I finally went round on the Tuesday to begin the next stage of induction. Knowing I had excess fluid I thought that it would be like in the movies where someone’s water breaks and it’s like immediately shown that full blown labour just happens imminently afterwards. (Sidenote: it does not). I was asked to stand and was so unprepared for the raging torrent of fluid that they had to put incontinence bed pads all over the floor like the midwives were house training a puppy. It went on for hours, the midwife said she had never seen anything like it. Not very comforting words from somebody who boasts 20 odd years in the profession. From that point everything got exciting and I was so busy contracting and being in pain that I barely noticed a huge storm blowing outside. Listening to radio 4, and still making jokes around the gas and air I was becoming more and more exhausted with little to no real idea of how much time it had taken, and how much more it would take. Babies, it seems, do not run on schedule. At one point I had to get up and move because I was going to have to have an epidural and I wanted to pee first before the delights of a catheter. I moved with my several drip stands and monitors attached with a very helpful student nurse, to the small toilet outside my room. I was just coming out again when I heard an almighty crash, and suddenly felt very cold. We all looked upwards and the ceiling tiles were blowing madly like a strange Mexican wave effect. Turned out that the wind was so bad it had pulled part of the roof off, and as some of it fell in it had caved in the toilet and smashed the cistern and the whole little room I was just peeing in disappeared in a cloud of dust and rubble. Waddling back to the bed there was panic and lots of people flooded in to make sure we were alright and that the room was structurally sound. I sat on the bed while everyone rushed around thinking that this wasn’t really going to plan. I then vomited in one of those little sick hats they give you, my boyfriend stretched and said that he was just so tired. My head turned round slowly to look at him as two or three people laughed, and without thinking I just threw the sick hat at his face. (Absolutely no regrets). I got the epidural and they told us to get some rest, gave him some mats on the floor and some pillows and I settled into the bed hoping to sleep.
As soon as he laid his head down, he was asleep. I have always marvelled at such an ability because it takes me about eight different positions and a sacrifice to the moon before I can sleep each night.
As he slept on the floor my epidural failed, sending shooting bolts of pain down my right leg that had me crying out for hours. He told me once that he doesn’t remember much of our child’s birth but he does recall going to sleep and it all being calm and waking up to ten people in the room and me being rushed to the theatre. My daughter’s heart rate accelerated and I had no choice but to have an assisted delivery and be taken to the theatre in case of an emergency c section.
At 5:53 am on the 15th of May 2013 my little Ava came into the world. She didn’t cry, she didn’t look like she was moving. Operating theatres are quite cold anyway, but I felt as though an icicle had settled in my stomach. My mind flew to my mothers eco burial site and a tiny shoe box sized casket hovered in my mind before me. Then a cry broke the silence and I felt I strained my eyes trying to see round the doctors to get a look at her for myself, to make quite sure that she was really crying, and breathing, and alive. They placed her in my arms, this little purple and sort of mucus covered potato. I didn’t get that ‘rush’ of fierce pride and love that people speak of. Perhaps that is also a situational thing as it was a difficult birth and all. Maybe I was just broken inside, I didn’t know.
There was a couple of hours’ reprieve and then I was moved to the post ward, surrounded by other exhausted women all tending to newborns. Opposite me, was a woman sitting alone. I didn’t think much of it to start, until it occurred to me later that she had not moved from her sitting position. Eyes boring into the wall in a kind of trance. She also did not appear to have a baby with her.
Absorbed in my own exhaustion and bed bound as I was, a nurse came and handed me my baby. I told her that we had just arrived here and that she tried to feed in the delivery room. I asked her to set her down as she was sleeping. The nurse said it was important for us to bond and left her in my arms. I was fighting a heaviness in my arms, reminding me on this beautiful day of when I had been told about my mothers death. A few minutes passed and I jerked awake and realised I had been on the cusp of dropping my baby. My boyfriend and my younger sister had just come to see me and they witnessed me waking up and gasping. I suppose it didn’t make me look very capable, but I was bone tired and really hungry. I felt I was running on reserves I did not have. Everyone cooed over the baby and the time came to change her nappy. Still being in that proud-of-his-virility-state my boyfriend wanted to do it. He placed her on the bed in front of me and we noticed that she looked like she was falling asleep and jerking awake, but repeatedly. She would then snooze more and then repeat it. This bothered me, and I couldn’t place why. I asked a nurse about it who told me that I would probably be jerky too if I had been born this morning. She brushed off my concerns and everyone else seemed appeased. During the course of the day this happened several times, the jerking awake and falling back to sleep. I asked a number of people, and one particular nurse a few times. She asked if I was a first time mum, in the most patronising tone told me that ‘the young ones always worry when it’s their first’. (Eyeroll). We were due to see a breastfeeding specialist that day but by coincidence I happened to miss her popping by. If I had seen her then we would have been discharged, I was annoyed as I had expected to be able to go home with my boyfriend and sister that evening. When visiting hours ended, they left and I was again handed my baby to try to feed her.
A few minutes later I realised she wasn’t really bothered and I was considering asking for some help with the latching. I noticed that she was also quite floppy, as though she was already asleep. I looked at her face and a blue colour was creeping over her lips. I jumped up and rushed to the front desk. The nurses were in a handover meeting, and I had to shout to get their attention. A midwife came out frowning and said to give them a minute and I shouted ‘SHE IS BLUE’. The midwife grabbed my baby and ran around the corner with her. It was like gravity suddenly weighed on me, I was standing there with empty arms and had not really registered what had just happened. I threw myself forward and scuttled as best I could to chase her. At the end of the corridor I could see people running and shouting. They had placed Ava on a warming bed in the hallway, by the time I got to her only a few seconds later she had a tiny oxygen mask on and the nurse was calling out all sorts of things. None of which I could hear properly, as a humming sound had filled my ears and the stomach icicle was back. The tiny casket in my imagination was back.
They then rushed my baby off to the special care baby unit. (SCBU for short). The midwife who had grabbed my baby to start with said she could phone my boyfriend to come back. I knew he would be angry, he wouldn’t understand what was going on. I myself did not understand what was going on. I took the phone and made the call, he started shouting at me saying ‘what do you mean they’ve taken her, why have they taken her’ I told him she went blue and he was screaming ‘what have you done to her, what did you do’. Luckily calmer people orchestrated his return to the hospital and he came flying into the ward with a raging slam of the door. I was still standing there, I could feel blood trickle down my leg. He started shouting again but luckily the midwife came hurrying back and shushed him, told him that the baby was having some difficulty and that she was with the doctors now. She took us round to SCBU for the first time, we went through an entrance directly from the delivery ward, which I actually never used again and yet I remember it very distinctly.
We were taken to a small room to wait. After what felt like forever, although it had realistically only been a few hours. They brought us to a room with two incubators in, and more wires and machines than I had ever seen in my life I remember thinking it was like a space station. There was a screen with lots of different lines and numbers on. An older nurse kept silencing the alarms, and I thought to myself why are you doing that? Surely people need to know when that blippy little line there starts petering off, what is going on? I was angry and scared and confused. I saw her little head had a hat on it that wasn’t ours and I started shaking. It was like I was a dam holding too much water and it was starting to spill over. I saw her hands like tiny starfish reaching around for something to clasp. She needed me, and I couldn’t do a thing to help her. Twelve hours passed and I hadn’t eaten or had a chance to express milk, alongside the exhaustion from the days before I was still shaking. A nurse asked me if I had held my baby since the night before and I told her no, I have just sat here. She immediately got her out and gave her to me, wires and all. It took a few minutes but I managed to calm down enough to stop shaking. It was like a piece of me had been put back and now I could function properly. So although there was not that original ‘rush’ of maternal feeling, I knew that we belonged together and that I was going to do everything I could to keep it that way.
There is a line in the popular television show Call the midwife that has always stayed with me, ‘Hard work makes a mother, we like to think something magical happens at birth, and for some it does. But the real magic is keeping on when all you want to do is run’. I found those words evaluated exactly how I felt.
When I went back to my bed on the ward, I just sat there. It was now my eyes boring into the wall, sitting there without my baby. I finally understood.
After a multitude of tests they couldn’t work out why my baby had such an episode. They had her on a glucose drip for a couple of days, and then eight days later they discharged her back to me on the ward. Things were looking up, we had a lovely evening where she fed and I ate and we were about to go to sleep, when she started to do the jerking-awake-falling-asleep thing again. I tried to grab the nurse but she kept missing her doing it. It was the same woman that previously asked if I were a first time mother. An hour later and my baby was screaming and then suddenly unconscious, then awake and jerking and screaming. I dragged the nurse in and shouted that this was what I was trying to show her, and she got angry and told me that there was nothing wrong and if this was how I had intended to be a mother I wasn’t off to a very good start. Before I tore her face off I ran out into the corridor desperate to find someone else. I happened upon a paediatrician, who came running back in with me. After four seconds of looking at her he demanded the nurse get the blood sugar monitor kit. They tested my baby’s blood sugar level and it was unreadable, she screamed herself into unconsciousness again. The paediatrician grabbed her and ran. I was getting kind of tired of this by now. Leaving the nurse looking mortified in my room I left to follow the doctor.
Back in the small room. More phone calls to contradict the earlier ones, more questions I didn’t have the answers to. Back into an incubator and wires all over her again. We spent seven more weeks in SCBU, they could not find a link to prolonged jaundice, inability to control temperature, and small myopic fits. Which was apparently what she was having when she jerked in and out of consciousness. I was starting to feel incredibly stressed, and angry at why nobody could work this out. Why was it taking so long, will she be alright afterwards. It was quite a busy Special care unit, and there were three main rooms for the babies. A high dependency room, intermediate care room, and a stable and almost ready to be discharged room. We worked our way through the rooms and became stable and almost ready to leave. We knew everything they had tested for, and what seemed like everything that it was not, just not the actual issue of what was going on.
I had a conversation with a doctor where I lost my temper and told him that if a quick google can tell me that it’s likely to be only a couple of things, surely they could find that out in almost two months. As it was, I had researched in my time there these two options that repeatedly kept appearing in my searches. Low and behold, it was one of them.
It was then that it was agreed for my baby to have ‘shared care’ between our local hospital and Great Ormond Street Hospital. As it transpired, my daughter has Hypopituitarism. (Hy-po-pit-too-it-terry-ism) she has an ectopic pituitary gland, it never grew fully to reach down to the hypothalamus in the brain. So she does not secrete hormones into her system the way she should. It is classed as an Endocrine problem, under adrenal insufficiency. This means that she will be on medication her entire life. They call her treatment ‘hormone replacement therapy’. She will have forced medicated puberty, and will always have to be wary of knowing her limits, as in times of stress or crisis, of breaking a bone or injuring herself will render her in need of an emergency shot of adrenaline and hydrocortisone – as her body does not automatically give out the necessary hormones to survive shock or injury. When under duress, your body produces cortisol, which is a little like your fight or flight response. The worse the crisis in the body, the more cortisol is sent out. As her body does not send these messages out, she must have all her hormones synthetically administered by medication.
Every six hours in fact, for hydrocortisone. Four times a day like clockwork I give her medication, once a day in the mornings she takes levothyroxine, to help her thyroid gland. She has to have an intra muscular injection of growth hormone every night in to her thigh. This was all incredibly overwhelming, and difficult to process. Appointments and medicine schedules and chemist runs became our every day life.
When we eventually got to go home, it was nothing like I had imagined. There were not very many cute photo opportunities, when I had to hold her upright for thirty minutes after her medication to make sure she didn’t vomit like the exorcist and I would have to re administer the medication
It was a four hour round schedule of feeding her, pumping the rest of the milk, administering medication, changing and burping and settling her, to have twenty minutes before it all started again. The most natural person people lean on in these times are their parents. I had a patchy relationship at best with my biological father, no relationship at all anymore with my stepfather, and a dead mum. You would think perhaps one of those many siblings I had would have stepped in.
As you can imagine life was quite changed when the baby came home, and my boyfriend was still working full time. He didn’t do so much as one feed in eight months, didn’t change one nappy, cook one meal for us. I started to close myself off at this point. I was in a bubble with my baby, who was beginning to not make her milestones. I think that inside I already knew exactly what was going to happen. We argued more and more about money, as I was unable to go back to work. We argued about him helping, I was always told that because he had to work he needed the sleep more than I did. When in reality I had not slept for more than two or three hours at a time since she had been born.
I was so tired once when she woke in the night, that I turned to the crib beside my bed and she wasn’t there. I looked up panicked and there was my mother, just standing in my room and holding her as she cried. Calming her the way I had seen her do to many other babies.
In an instant she stopped crying, and I stood up and they disappeared. I looked at the crib, and there she was just laying down looking at me. I will never forget how entirely spooked I was by that happening, but also in a way I can never overlook the fact that her crying woke me, and it stopped seemingly on its own.
The last break up came as no surprise to me. I had already shut myself off from his abuse that it was more a huge relief that he was finally gone in the end. He sat in our daughter’s room and looked around it as though he had been bidden to memorise it. I came upon him in there, he told me he was going to buy some sugar and didn’t come back for three hours.
The next day he told me he was leaving, I was already mentally checked out and when he closed the door behind him I knew that things would never be the same again, and fuck was I glad.
Over the years it became apparent that my daughter has severe learning difficulties. She was diagnosed with autism in 2016, incredibly early for a girl in particular to be diagnosed. She is developmentally delayed, and has only recently moved out of being non verbal.
As you can imagine, we are professionals at the over night hospital stays now, I’m not saying that makes it easier because the older she gets, the stronger she fights. We have a grin and bare it attitude for when she is in hospital now, it’s the only way that anything can be done to help her, is when shes restrained and being talked to quietly while bloods are drawn or examinations done.
I can’t say that it has become easier as she has grown up, because really things have just changed and present their own idiosyncrasies and difficulties. But I am pleased to say that she attends a fantastic school facility, where she is thriving. This year for the first time she read out to me the words in a mothers day card, and understood that her birthday was coming. We have a tentative relationship with her biological father, he stops by from time to time by his choosing. We all prefer it that way, as my daughter doesn’t make emotional attachments very easily, so essentially he is cutting himself out of the picture. Not that we really mind in the slightest.
At some point over the years, my niece went to a clairvoyant. She was hesitant about the legitimacy of that kind of thing. You may remember I mentioned that my mother had respiratory problems, that made her cough almost continuously towards the end. When my niece was with this clairvoyant, she was told that the she could hear coughing, and a stern voice saying ‘Don’t air your dirty laundry.’
In 2018 my father died. Leaving my younger sister and I as orphans. Such a strange term to use as an adult, the word orphan always brings to mind a child without parents. Not an adult without parents.
This time death was not a surprise. But it was difficult and sad in its own way. As if I said goodbye to a life I had never really had, with him actively parenting and being a part of that. Again, people said the burial was at a most desirable location.
I began my studies in 2018, finally realising that there was something in the world I wanted to do. I had been given the tools to uniquely understand from a personal perspective a time in peoples lives where they are incredibly vulnerable and need help. I am studying a degree, a Bachelor of Science with honours in Psychology and counselling. It is my intention if I am lucky enough to go to medical school, and further after to become a perinatal psychiatrist. I would like to fill the gap that I personally found myself in, at a difficult time in my life. I feel that because I have been down this road myself, I could be a source of help and advice for womxn in similar situations.
I cannot say that I know everything and that I’m going to change the world. But perhaps just bringing some light to some people who’s worlds are in darkness will be more than enough.
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