Our Story… Part One

In the words of Terry Prachett “If you don’t know where you come from, then you don’t know where you are, and if you don’t know where you are, then you don’t know where you’re going” So for now… I’m taking it back to the start….

I met Alex in the summer of 2007 whilst we were both working at my late Fathers Architecture practice in Bath. He was tall, dark, handsome, and off limits as we both has respective partners at the time. The flirtation revolved around chats over tea making and river swims at lunch time, and at the end of the summer, we both went our separate ways but promised to stay in touch.

A couple of years later we met up whilst on a night out in Bath, and this time… we were both single. I had always held a flame for Alex and I was quite excited about where things could go. We continued to see each other for a few weeks, however it wasn’t meant to be, and in classic catastrophic style, the day after we broke up.. .I found out I was pregnant!

I’ve always been extremely maternal, and although the situation was far from ideal (understatement of the year) I knew that the psychological impact of not going through with the pregnancy would be too much to handle. I have an incredible family and support system, so I knew that by chosing to go ahead with the pregnancy, I was hardly going to be a destitute single mother out on the streets.

Alex chose to take a step back at this point and so I was faced with the reality that I would be raising this child (yes, I still thought it was just the one!) as a single parent. Of course its more complicated than this, and his choice was met with a whole stream of emotions from myself and those around me, but its something I have come to terms with. On the flip side, it meant I was able to move forward with some clarity over what our family unit would look like without having to factor in a messy relationship.

When I returned to Uni and broke the news to my friends, they couldn’t have been more positive, we raised a glass to “the newest member of the family”. Although scared, I felt comforted by their enthusiasm. I’ve always believed that family units come in all shapes and sizes, and it looked like this would be a very large, slightly difunctional, but wonderful one.

A couple of weeks later things got a whole lot more overwhelming. I was experiencing crippling pain and was convinced I was losing the baby, so a friend took me to the hospital to get checked out. They scanned me and I will never forget the moment the sonographer turned to me and chirpily exclaimed “its TWINS!”

As bizarre as it may sound, in a way this news was comforting. One of my biggest concerns had been how I would create a family unit for this little life that didn’t feel the intensity of single parent and child set up. I remembered a phrase I had once heard “its double the giggles, and double the grins, and double the trouble if your blessed with twins”. I had complete faith that somehow, this was exactly as it was meant to be. I was being blindly optimistic as a coping mechanism, but I couldn’t have imagined the challenges I was about to face before they even arrived.

My enthusiasm quickly took a knock as extreme morning sickness kicked in. The first exam of my finals I took, I was sick 5 times within the 3 hour exam period. Needless to say, after that they felt it was best I took my exams in a separate room (with a bucket in tow!) If I wasn’t being sick, I was so exhausted I just wanted to be in bed. I was in such a fog of discomfort I quickly stopped wanting to socialise and just found it easier to hide away. Over the next few weeks reality really hit home. I had gone from spending all my time socialising, exercising and planning a future career in London to watching my 22 year old body change in ways I couldn’t have imagined. I was stretching and swelling, feeling increasingly unattractive and losing confidence by the day. Having always prided myself on being upbeat and optimistic, I couldn’t bare for my friends to see me in this way, all I wanted to do was get back to Bath and hibernate.

Once home, I put all the very little energy I had into creating a home for my impending little family. I was lucky enough to be moving into a cottage on my Mum’s Farm which although very simple and small, had everything the babies and I would need.

At 20 weeks pregnant 

The boys were huge for their dates, by just 20 weeks, I was measuring the same as someone carrying 1 baby to full term. My pelvis gave way under the pressure of the weight on my ligaments and I couldn’t even manage to sleep in a bed. I lived day and night in my Grandpa’s old Lazy Boy chair because it could electronically lower and lift me as needed. I was enormous, and I was not embracing the change.

Me and my Mum whilst being a bridesmaid at 30 weeks pregnant

Towards the end of the pregnancy I became so uncomfortable I was in my own personal hell. I tried to stay focussed on the end result, but I could think of very little other than the constant pain. It got to a point where my day would consist of watching Jeremy Kyle in the mornings to remind myself things could be worse and then ticking off the hours I had created on a spread sheet until I could finally highlight the date off as another day done.

By 34 weeks my body could no longer take the strain. I developed a condition called Pre-Eclamsia, which is pregnancy induced high blood pressure which if left untreated can be lethal. I was sent straight to the hospital and told I could expect to meet my babies very soon. By this point it had developed into full blown Eclampsia and the only way to save the mothers life is to deliver the babies immediately by emergency c-section , which is what they did, at haste!

I will never forget the moment I saw the boys for the first time, it was surreal finally getting to meet these perfect little humans I had been growing and waiting for. The pain and misery up until that point became irrelevant, I was a Mummy.

Being 6 weeks early (but 6lb each!), the boys needed special care and were whisked off to the Newborn Intensive Care Unit. Finally, after 3 long frustrating days I was able to properly meet my little boys. I know every one says this about their own babies, but they really were perfect. The love I felt for them was like a physical reaction, every bit of my body wanted to protect them, feed them, and be there for them in anyway humanly possible.

Two long weeks passed, and finally, my the little boys were coming home with me. I may have been outnumbered by babies, but the overwhelming fear I had during my pregnancy had disappeared and my heart could not have been more full.

The boys at 6 weeks old 

Being premature, they were still extremely sleepy, only really waking up to feed. I could take them pretty much anywhere and they were guarenteed to stay asleep. That New Years, when they were just 6 weeks old, I went to stay with a friend in Norfolk, where they slept for the duration of the dinner party under the table without making a peep!

When they were around 8 weeks old however, they suddenly appeared to ‘wake up’ to the world. They were no longer the sleepy, portable tiny humans they had once been. They had discovered their voices, and wanted to be heard, mostly throughout the night. There was hardly ever a time where one of them wasn’t needing feeding or settling and I suddenly felt very out of my depth. I don’t know how I would have survived these weeks without my amazing Mum. She would often come and take over in the mornings and I wasn’t sure if I had even been to sleep at all.

I pushed myself hard during those weeks. Determined not to go back into a state of being a recluse, I would do anything to avoid being on my own. Being in company meant extra hands and a chance to fill my head with chatter other than the critical voice in my head. I was so concerned about doing the best job possible, I wouldn’t allow myself to admit that I was lonely and struggling. I was quickly learning that being a single parent was absolutely relentless, even with an incredible family and supportive friends, there was never that other person to hand over to without feeling guilt or needing to say thank you. Frustrations of the day..worries that I had.. would just circle in my head with no place to go.

On one trip to London, I was about to go on my first night out in over a year and so had requested the most ‘unmummsy night out possible’. My best friend granted my wish and organised a night out to the infamous not so classy Infernos night club in Clapham. With a new postpartum body to dress for, I headed to Top Shop to buy myself something to wear. But when I got there, I was so exhausted I was actually hallucinating, I ended up sobbing on the pavement of Oxford Street as I struggled to make sense of a London transport map. Extreme sleep deprivation is cruel in that way, it takes away your ability to take on simple day to day tasks and brings tears at the drop of a hat!

The next day when I returned to Bath, I hit the intense Sunday night traffic coming out of London. Two hours passed before I even hit the M4 and before I knew it the boys were due a feed, I was now bottle feeding, and I was not prepared. I needed sterilised water so I pulled into Reading services and filled 2 bottles with boiling water from a self serve coffee machine. I put the boys back in the car, cooled the water in the freezing January air, whilst all the while the boys screamed, and screamed. When I finally had the bottles ready, I sat in the middle seat between their car seats feeding them with a bottle in each hand and burst into tears. That was as close as Charlie and Alfie came to becoming “those twins that got left at a service station”!

I think a lot of parents have “that night” that is their rock bottom with their babies, and that was mine. If I could go back I would like to take myself aside and say “the first three months are pretty shit, you will essentially care for two little wrinkly men, feeding them, and wiping their bums whilst the only way they will communicate is to cry… but hold out… because it all changes”

As spring arrived, so did the smiles, the roles of fat, the gurgles and all things glorious about little babies. My confidence grew, and soon I had getting in the car at a drop of a hat nailed. Although still relentless at times, my memories of this time are pretty great. We travelled all across the country for various trips to see friends that summer, and everywhere we went people lapped up the adorable little duo. I was mostly in high spirits and had actually managed to gain a pretty respectable social life for a single mother of twins. The future of our little family was filled with so much promise and excitement.

When things were tough, I lived in the knowledge that before I knew it I would have walking talking toddlers and surely that must be an easier feat (sometimes naivety really is a parents best friend!). Alfie was the first to hit a lot of mile stones, he was supporting his head, kicking his legs like crazy, rolling, and at 7 months, bang on as expected, sitting independently. It felt as though the boys were thriving and so was I.

As the Autumn approached, Charlie hit another big milestone and started crawling. Alfie sat tight, which at first didn’t concern me as there were still a million logical explanations for why that could be. I myself had never crawled and went straight to walking which was something I had taken comfort in. But Alfie wasn’t even bearing weight on his legs, and the small voices of doubt were getting louder.

When he was 10 months old I went to my GP with my concerns. I was met with the same phrases I had been hearing for months “I’m sure he will do in his own time” and “It’s easy to compare them because they are twins” but as their first birthday approached, I couldn’t silence the concerns in my head and after several more doctors appointments, I demanded to be seen by a Paediatrician.

The boys First Birthday and Naming Ceremony 

There was never a time I felt the perils of being a single mother more. I had practical support from my family and friends but I had no one to share those dark thoughts with. Previously I dealt with the loneliness by comforting myself with thoughts of our future… two boys out on the farm, taking off through the fields, swimming in the sea, so many adventures to come… how lucky was I? But now my thoughts were all consumed by the possibility of a different future. What if I was facing a future with a disabled child? What would that future look like for us?

That winter I felt like my life was spiralling out my control. The joy of watching Charlie progress physically was met by the pain of watching Alfie grow weaker. He had continuous chest infections and was losing weight and strength rapidly. My little boy was fading before my eyes, and no one, not even the head of Paediatrics, could tell me what the hell was going on.

One evening I was doing my usual thing of scouring through letters from the hospital, trying to put together the puzzle when a sentence rung alarm bells “there is of course, the possibility of a primary neurological condition”. This wasn’t a term I had heard from any of the doctors I had seen, I searched nuerological conditions in children and came across SMA (Spinal Muscular Atrophy). It was a rare condition I had never heard of before but as I started reading through the list of symptoms, my heart sank.

“Overall muscle weakness, frog leg position when sitting, recurrent chest infections”.. it was as if they were describing Alfie. As I read on phrases such as “the biggest genetic killer of children under two” jumped off the page like a knife and I felt physically sick. At worst I had thought Alfie was facing his future unable to walk, but now I was suddenly possibly facing a future that Alfie may not be a part of. It was totally unbearable. I remember lying down next to his little sleeping body that night and weeping for hours.

The next morning I called his Paediatrician and requested that Alfie was tested for SMA. I had two weeks to wait for the results, but in my heart, I knew our lives were about to change forever…

2 thoughts on “Our Story… Part One

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