Our Story…. Part three

It was January 2015. On the face of it, our life as a family was flourishing…. I was a home owner for the first time, the boys were settling into school and my business was quickly expanding. The reality, however, was that I felt like I was drowning in life. Alfie’s nighttime care was relentless, waking up to 20 times a night and every waking hour of evenings and weekends were spent trying to make the catering business a success.

It felt like I had created a monster with Mother Hen. The original premise of starting the business was that by working for myself I could schedule my hours around school hours and Alfie’s care and meet my goal of being financially independent. But month on month the business and work load was growing beyond my ability to keep up. Every weekend was a blur of frantically trying to cook and deliver up to 200 meals.

With my clients being mostly hen parties, I would spend my weekends surrounded by a gaggle of women seemingly having the times of their lives as I would stand on the edges washing up into the early hours. Almost weekly there would be a disaster. One weekend I was delivering a tea party to a group of glamorous actresses, I had the crates of cakes and sandwiches in the car amongst Alfie’s wheelchair. The aim was to drop the boys, and go on to the job. In my haste of loading the car, I had forgotten to secure the back of the wheelchair to the floor, when I hit the brakes, the chair flew forward (Alfie wasn’t in it thank God). All 150kg of the chair flew into the crates of food, crushing the cakes, and smashing the china. Already running late I had to attempt to save what I could. Needless to say the client was NOT impressed. I was rather cruelly dressed down in front of the group, calling me a disgrace and they refused to pay me a penny. It was probably fair enough, but after baking into the early hours and spending over a £100 on ingredients, it was tough to take. There were many occasions like this, where despite my best efforts balancing work and the boys proved impossible.

When I had received Alex’s email about meeting the boys a couple of months before, it had caught me completely off guard. From the beginning of my pregnancy, he was very clear he wouldn’t be involved – it was something I was at peace with and didn’t anticipate changing. However, there was never any doubt what my response to his email would be… of course he would meet the boys. I had always maintained that the best thing for their welfare would be for them to know their Dad on some level, if he was willing. The potential of a positive relationship was too great to ever deny them a chance. The mystery surrounding his identity was clearly quite dangerous, as I overheard the boys relaying elaborate stories over his whereabouts.

I arranged to meet Alex for a coffee before he would meet the boys. When the day arrived, I had all the classic intentions of a meeting with an ex… look good and act cool. However, with three catering jobs ahead of me that day, I turned up frazzled, sleep deprived and probably smelling of onions and as I walked into the cafe and laid eyes on him for the first time in years, my heart was in my throat.

We were both clearly nervous and I struggled to hide my shaking hands as they pawed over my coffee cup. I could barely make eye contact and felt awkward and defensive. I tried to focus as I navigated my way through my questions… I needed to know exactly what had changed and where he saw the initial meeting leading. Was it a one-off, or the start of a relationship with them? I was fearful that if he backed out it would have the potential to damage the confident, happy, little boys I had worked so hard at raising. I felt like a lioness who needed to protect her cubs.

Satisfied that his intentions were genuine, we agreed to go ahead with him meeting them the next day. The next morning we tried to keep the atmosphere as upbeat as possible, playing music and cheerily jamming every bit of of clutter into the downstairs loo to create an illusion of order. The boys were showing little signs of nerves… but as the door bell went, Charlie ran full pelt into my arms and clung on to me, burying his head into my neck.

I sat back and watched cautiously as the boys interacted with Alex and his brother. The boys were quiet at first but soon warmed up to be their usual extrovert selves. I tried to give them reassuring glances and a quick squeeze here and there, but inside I was horrifically nervous and felt uncomfortable observing the similarities between Alex and the boys. Alfie was the spitting image of Alex facially and Charlie’s mannerisms and expressions were identical to his. The mysterious pieces of their genetic puzzle finally made sense, they had a home.

After a couple of hours, Alex and his brother left and we sat down to take a deep breath and debrief. The boys were clearly excited and enthusiastic. However… over the next few days, Charlie fell apart. He was fiercely emotional – smashing things, shouting and crying. It was completely out of character and it was shocking. He wasn’t communicating that it was related to meeting Alex, but something had been stirred within him…and he had an inner rage he couldn’t contain. I did everything I could to comfort him, smothering him in love and even taking him out of school for special ‘Mummy Charlie time’. But nothing would cut it and it was clear we had a long and complicated road ahead of us.

Alex came back to Bath a couple of weeks later for a second meeting. This time we would meet in the park, and it would be just the four of us. Charlie responded well to seeing him again and was clearly desperate to impress Alex, throwing himself off slides he wouldn’t touch if it was just Mummy watching. Alfie on the other hand, was quiet and clingy. As I lifted him from his chair and sat him on my lap, I could feel the heat radiate from him and his chest rattle. I felt a wave of fear wash over me as it became clear he wasn’t well at all. I felt completely distracted and desperate to get him home, but just a couple of hours later, it became clear that it was hospital not home that was needed.

We left Alex and made the all too familiar journey to the hospital. Alfie was pale and breathless and I struggled to steady my nerves as we started the usual routine of admission. I took deep breaths as the doctor started the process of trying to insert a cannula into his tiny and invisible veins. Several attempts and many tears later, I breathed a sigh of relief as I watched the fluids and antibiotics drip through into his veins.

A couple of days passed and I was surprised when a doctor arrived at the door to say they felt Alfie was ok to go home and complete the course of antibiotics orally.  Although I didn’t feel like he was fully recovered, they clearly felt he was well enough, so I took their word for it and we headed home. But back at home I couldn’t take my eyes off him, his little chest was working overtime and he barely roused from sleep all day. I couldn’t handle another night of watching his every breath so I decided to take him back into hospital.

I tried to keep him talking but it was clear he didn’t have the energy to respond. I pulled up outside the children’s ward and carried him into assessment room. But after five minutes of waiting to be seen, his colour was changing and I couldn’t bare it any longer. I ran into the corridor, holding his little body and screamed for someone to help me. A nurse came and put him onto a SATS monitor, her face dropped in shock, and she hit the nearest emergency button.

Before I knew it there were about 10 bodies pawing over him, covering his little face with an oxygen mask whilst ushering me to the side of the room. I was shaking and crying, not knowing where to turn to. I couldn’t get close to Alfie and I was worried about him being scared without me in sight. I could hear by the tone of the medical staff’s voices something was seriously wrong, but I couldn’t make sense of it all.

After a while his oxygen levels were stabilised and I was able to be with him and make a tearful call to my Mum asking her to come in. It felt too much to face alone. The consultant in charge – a kind-faced, softly spoken Indian doctor, explained that the x-rays were showing that Alfie’s lungs were full to the brim with pneumonia and both his lungs had collapsed…he was a very, very poorly boy. They wanted to transfer him to the intensive care unit in Bristol but would have to ventilate him in order to transport him, which in itself was too risky. They didn’t want to do anything to tire his little body out any more.

My Mum called Alex to explain everything that had happened and he got on the first train back to Bath. Time seemed completely warped and before I knew it, she said he was waiting in the atrium of the hospital. I couldn’t bear to see him, I had no emotional capacity beyond sitting by Alfie’s bed willing him to survive. My Mum sent Alex away to stay locally and to keep his phone on so we could update him.

I was under instructions to keep Alfie calm with the hope of lowering his heart rate. So I stroked his hair and told him make-believe stories of adventures with his cousins, encouraging him to breath deeply and try to relax. The consultant’s shift was due to end at 8pm, but he stayed the whole night, often just sitting in silence by his bed. Whenever I was alone and felt sure Alfie was asleep and unaware of me, I would sob into a pillow praying for him to pull through.

In the early hours of the morning, I had drifted off with my head on his bed, when I was woken by Alfie’s little voice. He wanted to know what happened next in the story with his cousins. I could see on the monitor that his heart rate had come down and the fact that he had enough breath to speak was such a good sign, I couldn’t help but lean over and cover his little face in kisses.

The next day his blood results showed he was continuing to improve and we called Alex to come in and see him. I was utterly drained, I couldn’t hold up the same barriers and composure I had in previous meetings. If ever there was a situation to strip back the animosity and unite, this was it. We were parents who had nearly just lost our child and it felt strangely comforting to have him there.

 

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Alfie a few days into his recovery.

Alex stayed down in Bath, visiting the hospital each day. I could tell the boys were enjoying their time with him as they became natural and warm in their interactions. Alex took Charlie off to the local park one day and when they came back Charlie had a big grin on his face. When Alfie asked Charlie what he was grinning at, Charlie excitedly replied, “I asked Alex if I can call him Daddy… and he said yes!” Alfie asked if he could do the same and they both kept trying it out, finishing every sentence with “Daddy!” It was just the four of us in the hospital room when the boys realised that Alex and I were wearing identical trainers, we all laughed and as I looked up and we caught each other’s eyes, I realised I was going to really struggle to keep disliking him.

 

The intensity of the experience we had all just been through moved the pace of their relationship building to another level. Once Alfie was out of hospital, we started seeing Alex regularly. One Friday night before Alex was due to see the boys we decided to go for a drink to touch base with how things were going without four beady little eyes looking up at us. As we sat in a dimly lit bar chatting away, I couldn’t believe how natural it felt. It was like we were back in the summer of 2007, and as the wine slipped down, I couldn’t help but feel myself attracted to him.

The feeling didn’t sit well. After everything I had been through, all the years of struggle bringing the boys up alone, I couldn’t possibly like the man who had put me in the position of being a single parent in the first place. I tried to vilify him in my head, telling myself he was cold and cruel…but every interaction contradicted this version of him. He was warm, kind and a natural father instantly. It was like watching all the bits of two people I loved most in the world, amalgamated into a handsome 6ft 3 man.

Naturally friends and family were intrigued whether there was still an attraction there. I was quick to be defensive, denying the possibility. I told myself I hadn’t come this far only to go back there. I had never worried or felt concerned about meeting someone in the future, it had happened before and I knew it would happen again. The boys deserved someone in their life who was extraordinary, and I wasn’t willing to settle for any less. But thoughts of Alex kept plaguing my mind and however much I tried, I couldn’t shake them off.

By May, I felt confident enough to leave Alex on his own with the boys for the first time whilst I went to London for Birthday celebrations with friends. I spent the entire time eagerly awaiting text updates from Alex. My heart swelled as I saw photos of the boys grinning holding homemade light sabres, standing next to the fully built flat-pack BBQ I had been given for my birthday. Flat-pack furniture had never been my strong point – numerous Ikea pieces strewn across the house could have been easily taken down with a small knock. So when I was given the BBQ in a box, with what looked like a million pieces, my heart sank. Alex building the BBQ that day, opened my eyes to the possibility of a completely different life, one where not everything fell on my shoulders. As a single mum every small task from taking out the bins to handling hospital appointments fell on me, but what if there was an existence where I had a partner to share those responsibilities with?

I was never one to presume someone was attracted to me, but in this case it felt like the chemistry between me and Alex was undeniable. From the odd glance here and there to the tone of texts, it was clear that feelings beyond co-parenting were developing, but I didn’t know how to deal with the confusion these feelings created in my own head, let alone approach it with Alex or anyone else. I was left feeling isolated, as I was confused with feelings of anger about the past being met with feelings of excitement of a possible future. I worried people would see a relationship with Alex as pathetic and cowardly, the easy option. But I knew in my heart, that if we were to have a relationship, it would be far from the easy option. Most relationships start with a clean slate, ours would be starting with a whole host of complicated emotions that would need to be unravelled.

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Alex and the boys the summer they met

In June I headed away to Ibiza for one of my best friend’s hen dos. With time away from the confusion of the situation, after a few drinks, I was finally able to open up about how I was feeling about Alex. I was surprised by the response, my friends understood and even encouraged the way I was feeling. They could see that the potential, if all went well, was huge for the boys and me. Having had the chance to air my feelings, I knew I needed to take a leap of faith and approach Alex. Even if it turned out I had wildly misconstrued the signs, at least I could then move on and build a friendship with him for the boys sake.

The next weekend, when our plans for a weekend at the seaside fell through, the boys were only consoled by the possibility of staying with Daddy in London. So we packed up and headed to Peckham.  I knew there was a conversation that needed to happen that evening and as we walked around the Science Museum, I couldn’t help but feel a tingle of hope that we could one day live up to being the happy family unit that we looked like to the outside world that day.

That evening, as the boys went to bed, I popped to the local shop to get some much-needed wine. After a couple of hours and a few glasses, the conversation finally turned to the subject I had been so desperate to breach; us. I breathed a sigh of relief as Alex explained how he felt. I hadn’t been imagining it, the feelings were mutual and we were both terrified about what that might mean. As the evening went on and we shared a kiss, I felt overwhelmed with emotion but also consoled to finally have our feelings out in the open.

The next morning, I woke to the sound of happy chatter from the boys downstairs and Alex appearing at the door with a cup of tea. I felt a deep sense of contentment, it was the first occasion the boys and I were being looked after without the need for a thank you or feelings of guilt. I had spent so many years in brace position, waiting for the next wave to come and knock me down. But here was the possibility of a life where we would ride the waves together.

The boys and I headed back to Bath that evening and Alex and I arranged to go on our first date back in Bath the following weekend. The date didn’t disappoint. The conversation flowed and the physical connection between us was so strong. My head was telling me a million logical reasons this shouldn’t be happening but my heart and instincts were throwing me into the situation full pelt.

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The first photo of Alex and I together

Over the next few weeks Alex and I were like a couple of school kids. Sneaking kisses here and there and squeezing each other’s hands under the table. We wanted to know we were 100% sure about giving things a proper go before the boys finding out anything. But by July, we were using the big old scary L word, and we felt ready to let the boys in on our little secret. We explained that Mummy and Daddy were going to be together as a couple and in their sweet little five-year-old innocence, they exclaimed, “We thought you were already!”

 

The boys thrived in our new little family unit. They embraced a whole new set of family they never knew existed with open arms and without question. But without the blissful naivety of a five-year-old, I started to struggle with feelings about the past. I struggled to put aside feelings of resentment about the ease with which this family, especially Alex, had been able to come into the boys’ lives after so many years. I had done literally thousands of bedtimes alone, worked tirelessly to provide for the boys financially and emotionally, and it had taken its toll. It had exhausted me to the bones and made my twenties a constant uphill struggle.

Of course, I wouldn’t have changed it for the world. Bringing up the boys had been hugely formative. Those years taught me to fight harder, and love deeper than I ever could have imagined. In the darkest times, I’d discovered an inner strength and resilience I knew could carry me through. But equally, I knew that true love could be the invisible thread of calm when everything else was chaos… and I longed for that calm. I was in love, and I wanted to embrace everything that it entails, the good and the bad. I knew that I would need to accept that no, I hadn’t forgotten the past, but I would need to forgive if we were going to move forward.

When you start a relationship with two kids already under your belt, things move fast. By September, Alex had a new job in Bristol and moved in with us. My friends and family could see how happy we were and were, as ever, incredibly supportive. But it was a big adjustment for everyone. Suddenly the people we had been blaming in our heads were family and the feelings had to be set aside. There was so much pain and trauma from the past 6 years, however hard I tried, it was impossible to just put it in a box and forget about it. I knew that if we were going to have a lifetime together, we would need a safe space to talk without emotions getting in the way.

Alex and I decided to see a counsellor, not because things were terrible, but because we knew if were going to commit to a life together, we needed to give ourselves the best chance possible.

The process was hard, it felt impossible to sympathise with his experiences at first, but when you’re sat in a room with a stranger, you have no choice but to listen. So I did… I listened, he listened, and over the weeks we both found a sort of peace. We came to accept that it is possible for there to be two rights, and that just because your version of reality and history is different from another person’s, it doesn’t have to sabotage the chance of a happy future together.

Ultimately the process of counselling clarified that our goals for the future, for how we saw our lives, were the same. We came out confident that we had the tools and desire to work together to make those goals a reality. The pain of the past was never going to disappear, but there was too much potential for a beautiful life together to let the pain overshadow it. Over the months we learned to accept our differences and embrace the excitement of this new family unit we were creating. I would often find myself just sitting back and watching Alex with the boys unable to stop smiling, I could relax in a way I hadn’t in years and embrace the happiness that comes with companionship.

When winter approached that year, I felt the release of no longer being on my own. The dread of hospital admissions subsided as I knew I wasn’t facing them alone and the long evenings felt less grim in company. I didn’t fear my vulnerability in the same way, I knew I didn’t need to be the best version of myself at all times for Alex to still love me. It felt like my shoulders were dropping and I didn’t need to hold it all together for the boys at all times.

That spring, Alex and I went away for a night to celebrate my birthday. After spending the afternoon being blissfully pampered in the spa, we were upgraded to the most beautiful room I had ever seen. It spanned across the whole top floor and the balcony looked out onto the beautiful grounds and lake. As I stepped excitedly out on to the balcony where I could see a small table, covered in a white table cloth with champagne on ice, I called out to Alex to come and see what they had left for us. But as I turned around, he was immediately behind me… down on one knee, holding an open ring box. His words were poignant and perfect but I barely let him get them out before we were both in tears and I was shouting, “YES YES YES!”

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We were on cloud nine. I was never more sure of anything than wanting to spend the rest of my life with this man. Of course, our journey hadn’t been the way I had envisaged, but I had total faith that on some level it had happened for a reason. I was the happiest I had ever been in my life and our boys had a secure family unit.

A year of wedding planning flew by and we embraced every bit of the process. Life was full of enough stresses that were beyond our control and we were determined that the wedding wouldn’t add to the mix. We would be married in the local church in front of 180 of our nearest and dearest, followed by a reception on my mum’s farm in tipis. Every detail of the wedding reflected who we were and the journey we had been on.

When the day finally came around, I was on top of the world. I was surrounded by six bridesmaids who I’d known for a minimum of 15 years each and had become family to the boys and me. We drank prosecco, we laughed and we cried and as the morning passed, I couldn’t wait to get the church and make Alex my husband.

Peter, my dad’s best friend came to collect me from the house to take me to the church. He had been our family’s rock since my dad’s death and it felt incredibly fitting that he would walk me down the isle. As we arrived at the church he squeezed my hand and told me my dad would be proud of me. I took a deep breath and tried to hold back the tears, but the moment I stepped outside the church and saw my two little page boys, bow ties and smiles galore, I knew it was going to be an emotional day ahead.

As I entered the church and saw all of the faces of the people I love I felt overwhelmed. All of these people had been part of our journey, whether it had been separately or together, they had carried us to this place. There was no way I would have made it through those years without the love and support of the people in that room and as I looked around and saw the smiles and kind eyes, I felt more grateful than ever for everything they had done for the boys and me .

As I turned the corner down the aisle and my eyes met Alex’s, my composure crumpled and we both began to cry. I couldn’t possibly have felt more in love with the man I was about to marry.  As the ceremony went on I swelled with pride as our little boys stood in front of the church full of people and perfectly delivered the poem they had written with a great friend of ours. I felt proud of us all, of the journey we had been on and how hard we had worked to give ourselves the best possible chance of a happy future. It hadn’t been a fluke, it had been tough, but we knew it would be worth it.

The rest of the day exceeded all our expectations. We took a tractor and trailer with our wedding party down to my mum’s house, the sun shone and the beauty of my family home stunned our guests. As the African band played in the garden and the familiar sounds of my childhood filled the air, I could feel my dad’s spirit surround me.

 

When the speeches came around, there wasn’t a dry eye in the house. Alex’s words were full of humility, emotion and humour. We had already had our private moments of recognition of the past, but for many, this was the moment they had needed. As the evening set in, we took to the dance floor for our first dance, Mumford and Son’s “I will wait for you”. Not because either of us had consciously waited for each other – the 22 and 24-year-old versions of ourselves would have never worked together – yet through our individual journeys, here we were, with our boys, ready to embrace the fairy tale that life had thrown our way.

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Our Story… Part 2

The Diagnosis

It was Thursday the 28th of April 2011, the day before Kate and Will’s Royal Wedding, and the start of a bank holiday weekend. Alfie had undergone a blood test for a series of genetic conditions two weeks previously, and I had been anxiously waiting for the results.

The Consultants Secretary rang and asked if I could come in that afternoon. My instructions were to bring someone with me, but to not bring the boys. My whole body was shaking, I got the boys down for a nap, turned on the shower and prayed over and over again for things to just somehow be ok.

My whole family were away in various places for the long weekend so Kay, who was my childminder when I was little and the next best thing to my Mum, came with me to the hospital. I dropped the boys off with a friend and hugged them both tightly whilst trying to hold back the tears.

When we arrived at the hospital, we were ushered straight into a private room where the Consultant was waiting. As we made eye contact, his face said a thousand words. I couldn’t wait any longer and blurted out “It’s SMA isn’t it?”. As he nodded his head, I felt the adrenalin rush through my body. I could see his mouth moving, the words coming out, but I couldn’t steady my mind to make sense of any of it.

Yes – the tests had proved positive for SMA. It was a rare neuromuscular disorder which caused muscle wasting and ultimately early death. Early death – two words you never want to hear, but when they are referring to your child, its like taking a bullet. Early? How Early? How would he die? All horrendous questions, all suddenly relevant to my life. He explained that they weren’t entirely sure what type he had, but by the way he had presented so far, he wasn’t likely to make it through to late childhood. The condition would gradually rob him of his physical strength and eventually his ability to eat, breathe and ultimately live.

As we left the hospital I could feel the enormity of what I had just been told taking over my body. I fell to my knees and just whaled. The build up of so many months of anxiety and fear had come to a head and all my worst nightmares had been affirmed. It felt as though my body was in full grieving mode, and yet the child I was grieving was sat at home, watching Postman Pat, waiting for his Mummy to come home… oblivious to it all.

When we got back, I could barely look at Alfie. My sweet, beautiful boy… I just wanted to transport us all into a different dimension, one where I could keep my boys safe and where this was all just a bad nightmare I could wake up from.

The symptoms of trauma were all to familiar. My Dad had passed away suddenly when I was 17. He had been felling a tree in the woods next to our family home, it had split and fell on him, killing him instantly. For months after, I would wake in the night, trying to work out what was reality, only to realise I wasn’t dreaming, it really had happened. Sometimes I would wake with a full face of tears. Now the dreams were back. It was the same dream, over and over. The boys were older in my dreams, they were running down the towpath on the canal and I was trying to catch up with them, but whatever I did hurdles kept being put in the way. The dream always ended with one of them falling in the water and me jumping in after them which would wake me instantly. There would be a few moments of confusions and then the reality would sink in. I would end up crying and shaking with fear of all that was to come.

I felt such an intense guilt that I had created this life, so beautiful and innocent and yet he was going to have to suffer so much. I would have done ANYTHING to take it away for him. The intensity of that time was tough to take. I could barely function amongst the emotions I was facing, and yet life went on, and the daily motherly duties were more present than ever.

I trawled the internet, desperate to find some sort of story of hope or inspiration. But the theme that kept cropping up was “SMA Angels” – stories of children who had lost their lives to SMA. I banned myself from the internet and anxiously awaited our appointment with a Neurology specialist in Bristol.

I had been dreading the appointment. I couldn’t bare to sit opposite an expert, only for them to reaffirm my worst nightmare. However, I was pleasantly shocked to hear what he had to say. Yes, SMA patients had a lowered life expectancy, however it was a condition where the prognosis was changing drastically. For SMA Type 2 patients (Alfie was now in this category), it was ultimately Pneumonia that caused death, and the management of Pneumonia had drastically improved.

Ok, he wasn’t telling me that Alfie would be fine. But he was telling me not to give up hope, to focus on keeping him well and happy – and that was something I could work with. When we asked him what he would do if Alfie were his child, he responded “I would tell you what they would have told you 100 years ago, get him somewhere hot”. England in the winter was a breeding ground for bugs and his immunity would be at its lowest point before he was three.

Alfie at the age of diagnosis

Hope

Finally, I felt like I had something to grasp on to, some hope to work with. I threw all my efforts into working out how I would escape the British winter and keep him well. I would need somewhere with excellent weather, health care and somewhere I could speak English and form some sort of support system. After much deliberating, my heart was set on Sydney. It was the safe, but expensive choice. My Mum was as ever incredibly supportive and agreed to provide financial and practical support. Her generosity had covered the flights but the accommodation however was a whole other mine field. Rent matched, if not surpassed that of London rates. Bizarrely it appeared a whole array of crazy Australians were up for doing home exchanges. The boys and I would reside in the beautiful Aussie sunshine whilst they would enjoy the cold grey English skies – but who was I to complain! After a logistical nightmare of arranging four different exchanges, our entire accommodation for three months was covered, for free!

The months leading up to Australia were a huge adjustment. Suddenly our life was full of hospital appointments (on average 3 a week) and our chat revolved around a new medical dialogue. With the diagnosis, there were some positives. Now that we were no longer waiting for Alfie to some how ‘catch up’, we could work on getting him some sort of mobility aid, this came in the form of the amazing ‘Wizzy Bug’.

Wizzy Bug was an innovative powered wheelchair designed by the Bath Institute of Medical Engineering for children under 5. Within two months of his diagnosis, Alfie had one on loan and it was life changing. He was able to manoeuvre it perfectly from the off. I was able to finally watch my little boy move independently. It was incredible watching his cheek and charm unfold in ways it couldn’t before. He loved to play hide and seek and would often take himself off around the corner for a tantrum, which was hard to resist smiling at. He would exclaim “Alfie going now!” pushing the joystick full throttle and disappearing out of site. He finally had a form of control of his own body.

 

Alfie in his Wizzy bug

Australia

 

As we stepped out of Sydney airport into the baking Australian sun, I knew this trip was exactly what we needed. Within 24 hours of being there, we were on Bondi beach enjoying ice creams and Alfie’s chest was as clear as a whistle. There is something magical about sunshine and as the days went by, it felt like I was healing from the exhaustion and trauma of the past few months.

It has always been a real concern of mine that Charlie was never forgotten within the scenario of looking after Alfie. As he was now a very active toddler, Australia gave me the perfect opportunity to let him fully enjoy his physicality. We went to the beach most days…we swam, went on bike rides and boat rides. I was determined to make the most of Alfie being small enough to not have the complications of manoeuvring a disabled child.

Our time in Australia also coincided with another, rather significant event. I fell in love! I was introduced to a friend of a friend at a house party and we hit it off instantly. With my Mum there for support, we were able to enjoy a string of amazing dates around Sydney. I knew it was something special when he even waited patiently as I pushed the boys around for 45 minutes to get them off to sleep so we could eat brunch one day! The fact that someone could accept my situation and still see me as attractive and even lovable brought me back to life in so many ways.

Those three months completely changed my outlook on the situation. I felt more confident, relaxed and able to settle into an existence where we took life day by day rather than punishing myself with thoughts of potential loss. Yes, the risks were still very real, but living in fear had absolutely no benefit to the either me or the boys. Giving them the very best life possible and the love of our incredible family and network of friends, was something I could never regret. Being miserable and pessimistic was no longer an option.

 

 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Bath Half

When we returned to the UK, the positivity continued. One of the boys Godfathers had organised for a group of friends to run the Bath Half Marathon in aid of fundraising for a new wheelchair for Alfie. The response had been incredible. Over 20 people running and over £20,000 raised. It was enough to pay for not only a new wheelchair but an accessible car too. The comments of support on the donation page where overwhelming, I would often re-read them when I was having a tough time.

The day of the Bath Half was incredible. Most of those running were self proclaimed to be pretty unfit, but they were there for Alfie, for our family. Knowing there were so many people loving and supporting us, felt like being wrapped in a protective bubble where whatever the future held, we would be ok.

Over the next few months, we made huge leaps forward as a family. We moved into a one story house my Mum had converted on her Farm (yes, she really really went to these lengths for us!), Alfie’s new wheelchair arrived and my Aussie beau moved to England. Although he was living in London, having that person to check in with at the end of the day and someone to spend the weekends with without always having to take off to London made a huge difference. He was phenomenal with the boys and they were forming a special bond with him. Our relationship was going from strength to strength.

 

Out team of runners at the Bath Half

Mother Hen

Thanks to the amazing Kay, I had been offered two sessions a week for the boys to go to a nursery in Bath. Nursery and playgroups had never been an option before because of the high costs, I was also scared to spend any time away with the fear that my time with Alfie could be limited. However, with a more positive prognosis and the opportunity of free childcare, I decided it was time I found something for myself in terms of work. I knew that your average job was never going to be a possible. I had hospital appointments for Alfie coming out of my ears, no employer would be able to offer the flexibility I needed. I would need to find a way to work for myself.

I had always loved cooking and hosting friends so it seemed like the natural choice to do something that played to these strengths. After much deliberating, I decided that starting a small catering company could work well with my situation. I could cook when the boys were asleep and if I kept the bookings minimal then the admin side shouldn’t take too long. After chatting about my plans one day, a friend came up with the company name – ‘Mother Hen Catering’ – it fitted perfectly. Over the next few months I held mock dinner parties that I could use as practice and to photograph, I set up a website and I was quickly good to go. I was shocked that within a week of launching I had my first real customer. It took off in ways I couldn’t have imagined. The majority of the booking were Hen Parties and this quickly became my niche.

As a new company I didn’t feel like I could turn work away and soon I found myself cooking until 2/3am regularly and spending my weekends delivering and serving food to fussy hens. Alfie was no longer able to roll over and was now waking at least once an hour to be repositioned, ultimately I would always end up either lying on the floor of his bedroom or with him in my bed. The combination of trying to sustain friendships, a relationship, a company and being a mother to twins was exhausting. Like a lot of Mums, I just never felt I was winning in any single area.

Manoeuvring Alfie from place to place was now getting harder and as the boys approached their third birthday. I made the decision that we needed to move to a house with the hope of joining of a community. I found a cottage to rent opposite the local Farm Shop, which was the hub of the community. Having somewhere to pop over for a coffee and dose of human contact was such a novelty. I also felt a sense of independence by living further away from my family.

The first winter after Sydney was incredibly tough, I decided I couldn’t afford another long trip and with my Aussie now living in England it made sense for us to bed down in the UK. However, English winters are hard on us Brits, let alone on Australians and I could see it would be tough going on him to do it year after year. With him being so attached to his homeland and my entire support network residing here, a long term future for us looked uncertain.

We managed to get through the next year, breaking up briefly but getting back together. But the underlying issue of where we would ultimately live didn’t go away. He wanted to go back and visit family and friends the following Christmas and having had several hospital admissions for Alfie, I was ready for another trip to Australia.

The boys at Three

 

Australia Part 2

It proved to be everything I remembered it to be and having someone else’s family and support network made it all the more fun. In some ways I could really see the boys and I making a permanent move out there. But I knew the reality of being without my family and friends was a very harsh one.

A few weeks into the trip my Aussie headed back to the UK for work and my Mum joined me for a road trip up the East Coast. We were having an incredible time, but it was also testing on the relationship. With him being back in the cold and rain and me in the sun with his family and friends, the trip confirmed all our fears that neither one of us could make the move to live on the other side of the world for forever. Left with no solution, we decided to call it a day.

 

 

 

 

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Home for School

Coming back to England this time wasn’t such a positive experience. I was sad from the break up, working around the clock to make Mother Hen a success, and Alfie was continually getting sick.

The boys were starting School that September which was proving to be a massive transition in terms of getting his care plan set up. The boys had never previously questioned why there Dad wasn’t around, but now they were getting older the questions were coming thick and fast. I had sought advise from professionals who had advised that I should give them a few truthful facts. So when they asked, I told them his name was Alex, he was an Architect and he hadn’t been ready to be a Daddy.

As the boys started school (which was a very emotional and proud moment), the lack of a Dad was clearly starting to affect them. We lived in area where the nuclear family set up was standard and single mothers were not. Phrases such as “We’re the three Musketeers” (totally stolen from The Holiday) somehow, just weren’t cutting it anymore.

The boys on their 1st day of School

It wasn’t that the boys had ever been short of male role models – I had great male friends and they had Godfathers and Uncles galore. My middle Brother had three of his own children to contend with and was living in London, but my eldest Brother didn’t have a family of his own yet and was living on a Farm nearby. He had always stepped in as a male figure for them in ways I couldn’t have imagined. He came to doctors appointments, read them bed time stories, took them out on the Farm and became hugely influential in who they were becoming as little people. But even with all this, it was clear the boys felt the loss of a Father figure in the house.

As they settled into school life, I had more child free time to work on developing the catering company further. But as Christmas approached, life was more full on than ever before. I was now catering up to 10 hen parties a weekend, and the logistics and practicalities of that combined with Alfie’s increasing care and lack of sleep was proving tough.

One grim January night I was trawling through emails, they were mostly admin but a name popped up that put a lump in my throat. It was Alex, the boys Dad and he wanted to meet the boys…

 

 

 

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…