It’s June 2018, I’m in Manchester shopping with my wife, Louise. It’s the first time we’d been out alone as a couple since the diagnosis. Being away from our two children, Mila-Rose and Alfie at that particular time just felt very strange. You just want to stay within your own little bubble. Louise is trying some clothes on. I meanwhile am being the typical bloke, sitting outside the changing room browsing through my phone to check the latest scores from the World Cup.
I came across an interesting post on my Twitter feed, a digital magazine, Rare Revolution were looking for dads who have had been affected by a rare disease and were looking for contributors. A few days later, I wrote about my personal experience.
In February 2018, our family was torn apart with the news that our beautiful little boy Alfie, then aged 3, had been diagnosed with the progressive muscle wasting disease, Duchenne Muscular Dystrophy. Most boys are unable to walk by the age of 12. Duchenne is a life-limiting condition and currently has no cure. Being told that your child has an incurable rare disease is the most devastating news you can receive as a parent – I mean it’s hard enough when they have a cold or they’re sick, you just want to take it away from them.
Alfie’s diagnosis really hit me hard and to make matters worse the consultant confirmed the diagnosis over the phone. We weren’t invited back to discuss the next stage nor did we receive any ongoing support.
I found myself breaking down uncontrollably at home, in secret at work, while driving, I’d never experienced pain like it. Although we were going through it as a family, I just felt so alone. Yet I still had this overriding feeling that I had to be the strong one for our family. After all, I’m the dad, the man of the house, the main breadwinner and most of all, the one who protects us. Except I had no answer as to why this had happened and to my little best mate. I would try to go to sleep, the word ‘Duchenne’ repeatedly on my mind. The moment I woke up there it was again. It just felt like a vicious cycle that I had no escape from. Nothing seemed to matter anymore, everything just seemed so irrelevant.
The same month as Alfie’s diagnosis we’d just moved into what was to be our forever home. It felt less like a home and just more like somewhere to put your head down. I had lost all motivation. All the plans we had seemed to go out of the window in that first few months, a constant cold shiver ran from head to toe, day and night. I’d find myself just staring into space at work asking myself questions such as: What was going to happen to my little boy? How will this affect our daughter? Why us? As a father you have many hopes and aspirations for your children but some of these had been taken away instantly.
After the horrible way his diagnosis was handled, I found strength to go out and find support. First and foremost, I had to be selfish and try get out of this spiral. After all, if i’m not well then how would we cope financially? My wife works part time and as we’d just moved into a bigger home, we also had a bigger mortgage. I’m not really what you’d call a ‘talker’, my wife constantly tells me that I bottle things up and I need to open up a bit more. I’d seen a local men’s support group on Facebook: the Andy’s Man Club. It’s a weekly group where men can go for a biscuit and a brew to chat about the things in their lives that they’re struggling with. It seemed to be just what I needed.
Male support group
The group started at 7pm, I’d had a tough day at work and as the clock ticked I was thinking of putting it off until next week. I decided to go albeit I was running late, it had just gone 7pm. How could I go in now? The group had started and I’m not comfortable having all eyes fixed on me. I remember sitting in the car and the thought of me not being well for the family wouldn’t do us any favours so I forced myself out of the car and went into the group. I was welcomed by eight guys, both young and old, who immediately made me feel at ease and offered me a cuppa.
We all listened to each other and offered advice on what might help. I remember as it came to my turn my heart was racing and my palms being really sweaty. I explained what I had been through and honestly it felt like a weight had been lifted off my shoulders. It’s the most difficult thing to do but i’d highly recommend talking about your problems, even if it is to eight strangers.
I can only describe what I was going through as a grieving process, mainly for the hopes and aspirations of Alfie’s future. You imagine proud parental moments such as walking your daughter down the aisle or watching your son play in his first football match. Moments that make you feel proud to be their father. I’m so very proud of my two beautiful children and we still have high hopes and aspirations for them both. We’re just taking an alternative route.
Writing the article inspired me to create my own blog. I find it to be a great way to let off a bit of steam and process my thoughts. It has become my coping mechanism. I think looking back to the time of Alfie’s diagnosis, I was at such a low ebb that I should have taken time off work to get my head around things. Instead, I only took the Friday off after we received the diagnosis and returned to work on the Monday.
I did a self-referral for counselling in July 2019 and after two well-being assessments, I was told I required a form of bereavement counselling. Unfortunately it took another eight months to get an appointment due to a lack of NHS resources.
Fast forward to June 2020 and due to COVID-19 I’m yet to receive any face to face counselling. I began telephone counselling at the end of March as we’re currently 12 weeks into shielding Alfie. He’s doing remarkably well and at his last appointment at Royal Manchester Children’s Hospital, his consultant was so pleased with his progress. He’s responded very well to his daily steroid treatment and at times he thinks he’s a superhero.
In my eyes he always will be. Duchenne brings a lot of day to day challenges not only to the boys themselves but also to their families. I would never have put myself in the bracket as a writer but you may just surprise yourself as to what you can express in such a short space of time. Maybe you should give it a try one day.
Image credit: Freepik
Kieron Sales is a dad of two beautiful children, Mila-Rose and Alfie. He currently runs a blog to share his experiences through the good times and the bad, in order to raise awareness of Duchenne Muscular Dystrophy.