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…

 

 

 

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