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A Carer's View. 4 Years living with a Heart Attack, Cancer and Autism.

Updated: Dec 20, 2020

CHAPTER ONE - New Years Eve 2011 and Poppy.

Crammed in a tiny office attached to the cellar, six of us were enjoying our 15 minute break. Temporarily closing the creaking shutters to the 400 odd guests during the Jazz event, we rang in the New Year together. I listened to my colleague with considerable trepidation and dread as he expressed how next year could not become any worse for Malcolm and myself. Working as a manager at this holiday camp, I hoped more than believed it to be true. We quickly finished our midnight break and all hands were back on deck, the bar would be busy for another couple of hours before I could wearily return home for bed. 2011 ended and along with it a terrible few years of turmoil. Surely the entry and subsequent 2012, would indeed be better?

Malcolm, my husband (or Mal as I prefer to call him) and I were lucky enough to obtain positions together at the same workplace, close to our home in Norfolk. Some of our shifts clashed, but most of the time we operated on different hours. Although often not seeing each other, the situation suited us and allowed the taking of turns to look after our three-year-old daughter ‘Poppy’. The financial support created a relief, as our lives became strained after possessing our own business at the wrong time. Remaining heavily in debt and although still very much in love with each other, I had contemplated obtaining a divorce, not for lack of love, rather because of it and I believed Mal could have a better life without me. The debt meant hanging on to our house by the skin of our teeth, knowing any minute we could have everything snatched away from us. Landing these jobs gradually allowed us to become stable once more. Soon we saw each other more at work than at home, gradually reducing these meetings further due to the extra hours I often worked for free. Once committed to a role I prefer to give it my all, trusting that if I am dedicated to my job, then ultimately I will be rewarded further down the line with loyalty. I believe everything must have a purpose and reason, fate I call it, so both of us often working every hour possible, enabled the paying off our debts to hopefully become self-sustained once more. It has and always will be important for us to show any children of ours, that working and not living on handouts is the only way forward and though we were scraping the barrel, every penny we had, was at least our own.

Our general day began by my husband getting up in the early hours, around 04:30 – 05:00. I could never do this, but he, having been a sea Share Fisherman, found the long, early hours a doddle, in fact it’s his favourite time of day. I complained every morning, but he just got on with it and headed off to work. One day he even got the time wrong and turned up an hour early! He just patiently sat in the car park, until it was time to go in. I would have been furious, but Mal just found it funny. After he departed for work, I tried to force myself out of bed. To be fair, I often didn’t arrive home from work until after 1:00am, usually later, or if I made it home earlier, would sit downstairs, like the insomniac I appear to be. Once making it out of my comfortable bed, then the struggles began, firstly by getting our little one ready for nursery.

Everything Poppy and I do together develops into a challenge. Up before me, she starts complaining relentlessly. An abundance of toys in her room does nothing to calm her, she plays with none of them. Taking her downstairs, even at the age of three, she stays with me constantly, never leaving my side, not even for a second. Can you imagine trying to make a packed lunch with a child virtually glued to your leg? Every time you make a move, it apparently is in the wrong direction, and your leg is heavy with the additional attachment. Or how about being constantly screamed at? Never talked to and rarely a kind gesture offered. Whatever I did proved to be incorrect, nevertheless, I just had to continue. Surely this erratic and burdensome behaviour clearly could only be my own fault? I always knew I would be a failure of a mother and this feeling formed part of my decision to wait until aged 29 to have her. Being honest, motherhood scared me, suspecting I would be useless from the start and fail miserably. I didn’t want to let any children I had down and nearly didn’t have any as these thoughts plagued me. Mal desperately wanted children and I married him knowing that fact. This being his second marriage and 19 years older than me, I pressurised myself to be ready. Mal, the kind and generous man he is would have waited longer, but I wanted to ensure both he and any children had quality time together, waiting may have jeopardised that with his age being already 48 for Poppy’s birth in 2008. Fearing being hated by my children held me back years. I bucked my ideas up because if I didn’t make the decision, Mal remained childless and I am sure later it would have been regretted.

To ensure she didn’t receive burns when cooking dinner, I installed a gate across the half open plan kitchen, placing toys in the dining room. Her reply to this intrusive object?? - Stand at the gate, holding on to it for dear life, screaming continuously - all whilst jumping up and down. I thought, or rather I had been informed, if you leave and ignore the behaviour, the child will calm down quickly, stop crying and play. Despite my many efforts over the years, it just never happened. Not for the want of toys, but for the need of being with me incessantly. It reached a point where I became unable to even make a sandwich, a cup of tea, go upstairs, or even pop to the bathroom. Leaving her line of sight for just one second resulted in relentless screaming and furious jumping up and down. Try as I might to complete tasks in the house (as I suspect most parents of a single three-year-old can manage), achieving anything became futile. An unyielding Poppy endeavoured to remove the gate, tugging and pulling it in desperation. In her failure to relinquish the gate from its holdings, she continued to jump repetitively only now the odd toy (or ten) were dispatched with great force in my direction. It is surprising how much energy went into the destruction of both peace and happiness - all because of a little gate. I took it off in the end – with no point to it being there. So much sadness, no child should main that distraught.

Poppy’s nursery lunch needed to be prepared and consisted of the same strawberry jam sandwich (no bits, white bread), a piece of cheese, strawberry yoghurt (no bits), a piece of fruit (apple or banana only), raisins, blackcurrant squash and a packet of crisps (certain varieties only). This, the same lunch she enjoyed since she ate solids and continued for some more months before finally venturing to have cheese in her sandwich – provided there was no butter of course! After eventually succeeding to make the lunch, my next challenge for the day became breakfast and of course not only did this cause more issues - she didn’t want any. I remember always being hungry at school, because we couldn’t afford breakfast often as a child and hunger is a horrible sensation, so I am rather insistent on having it. But Poppy just never seems to have this sense, especially in the morning. She only eats two cereals, multigrain hoops (supermarket brand only) or Shapes. Sometimes, when she doesn’t eat, I take a packet of dry cereal with us. It just didn’t seem to bother her that her tiny stomach remained empty. Had she have been a stocky well built child, I may have looked at it differently, but she continued to be a petite undersized girl, who almost seemed fragile.

With breakfast over (or often given up on) and the lunch prepared, the next job happened to be the art of dressing – or not! Once again, I just wanted to complete a simple task as I thought it should happen. I imagine other parents, choose some clothes and their child puts them on - no, not in our house. Poppy just ran off to hide, holding her arms down, anything to prevent me from changing her. I never understood what as a parent I did wrong, although since the age of one, I have suspected that she is in fact Autistic, however, she has no concept of maths and is female, two very large and what I comprehend as unusual factors. I discussed my thoughts with my mother-in-law and husband, but both being ‘old school’ (even more than me), could only see pursuing this venture as a very bad idea, and in fact - should not be discussed further. Therefore, keeping Autism thoughts to myself, I continued to believe the answer remained obvious - my clearly being a rubbish mother.

Clothes finally chosen, albeit it one of the generally same limited options. Socks then take forever to be placed on feet, and invariably are changed several times over. Many items remain new in the cupboard never to be worn. Labels inside clothes cause many irritations and often I am required to cut them out in the hope the item can now become wearable. Once eventually clothed and fed or more often than not, I may take her fully dressed and ready, but honestly, many times I gave up and decided to take her in pyjamas, accompanied by a bag of dry cereal. Now I just needed to try and decipher how to travel to nursery, do I go for the car? Or walk? If I had a day or morning off, the best way always involves fresh air. Poppy loves being outside and active. Able to walk independently at 9 months she has never stopped since – in fact, she chooses to run generally. Very quickly she ceased using the pushchair and by 18 months I packed it away instead of permitting the dust to gather further. Before when we traveled a distance, I took it with us, but she made it clear the options were either walking, running or pushing the chair herself. Then totally exhausted, she still refused to sit in it. Eventually, I carried an exhausted Poppy and pushed the chair. Alternatively, I persuaded her to stand in it the wrong way trying to utilize the straps, making her safe, whilst holding her with one hand and pushing with the other. The simplest outing became an immense challenge and soon became something to loathe.

The nursery walk took us around 15 – 30 minutes, looking at everything along the way, Poppy often never communicated, despite me showing and discussing everything we saw. The path happened to be a dirt track road alongside fields and meadows with horses, sheep and beautiful nature everywhere, barely a car in sight. She loved her nursery and key person, who soon became a second mum to her. I didn’t mind (well I suppose I did if I am honest) she remains happy when not with one of us rather than distressed, so the jealousy one feels needs to be brushed aside.

Once at nursery, I could attempt to catch up on the thousand or more jobs I never finished from; daily housework, to paperwork, however it takes so long for Poppy to complete (or start) anything it often left me devoid of time. Alternatively, with the time required, but desperately exhausted. If my shift happened to be close to Poppy’s start time, I opted for the car as I had to leave for another village immediately after. Oh! So much fun! Poppy hates the car, in fact she detests it. So much so, she point blankly refuses to get in. I honestly have spent several hours trying to persuade her into the car seat. But rather than just sit down, she often becomes rigid, like a board, stretching across the top of the seat. It doesn’t help having carpel tunnel in my left wrist, providing little strength and it constantly gives way. How do you put a child like that in a car seat? I have yet to discover an answer. She just wouldn’t go in no matter what I attempted, bribery never helps either, like she doesn’t understand the reason for a deal. Sometimes she sits in the foot well, other times climbing through to the front seats then back through before I can even reach the front door. Other times involve running off before we are even near the car. Feeling frustrated, isolated, desperate and alone whilst fed up that I am unable to place a three-year-old in the car I often shout, or just sob. The worst feeling is the embarrassment. Other children clearly do as asked and jump in their seats, some I witness even strapping themselves in and most hold hands or stay close to the parent when near a road. How useless I must be, or is it really me at all? I certainly feel useless and totally incapable, right now, in this moment - the worst mother in the world.

Eventually reaching the nursery by car or walking, (and having successfully dropped her off without too much delay), I normally make my way straight to work - often late with the antics of the day. Whilst completing my breakfast rounds, I pop in to check on Mal. We always meet like this. Sometimes we may only see each other for a few minutes a day. Many find it difficult to understand how it works between us, but we need the money and are fighting to keep our heads above water - there is no choice. Luckily we both love working, Mal used to have 3 jobs at a time, had been employed since the age of eleven and I from thirteen, both often with 2 or more jobs simultaneously. Long hours became part of our lives, earning money, paying our dues and demands. Mal never realized how much he worked until applying for a fishmonger position at Makro Wholesalers. He completed a list of the hours worked for his CV and discovered he worked 120 hours per week, for years, often with no day off! Makro were so glad to have him in their staff, he was included in a regional newspaper when the Norwich store opened, an incredibly proud moment for us both.

[See images below]

Our life as it is may be boring and laden with work, but we were well aware that soon money would be tight once more. Mal’s fixed term contract expires on January 02nd 2012, starting again at the end of February, when the new holiday season begins.

New Year came and went, the second came and with it, the end of Mal working for a couple of months. Although concerned about money, honestly I felt quite relieved, working longer hours than Mal I also needed a break. He, a modern man in many ways, helps me with household chores including; cooking, cleaning and looking after Poppy, not ironing though – he cannot even iron a handkerchief! I finally no longer needed to do everything as he contentedly took the position of stay at home dad for the next 2 months.


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