Living with a new normalMay 15, 2020 2:05 pm
Living a new normal is what we are hearing a lot about in the press and social media at the moment, with COVID-19 affecting our everyday lives – not being able to do things we always have. It’s incredibly frustrating for everyone and all we want is to be able to get back to ‘normal living’ as quickly as we possibly can.
This is something, as a family living with Duchenne, we are all too familiar with. When Alex was diagnosed with Duchenne back in 2010, much like with COVID-19 our lives were turned upside down within a second! One minute we were just getting on with our lives not realising what was lurking behind the corner, the next moment it felt like a bomb had literally dropped upon us when we were told that our son ‘has Duchenne and this is what your future now holds’ – resembling nothing of what our lives were before that moment.
I think when bad news comes it’s best not to have any prior warning, otherwise the fear of apprehension weighs too heavy on us. That said, when news like Duchenne and COVID-19 does come it’s a complete shock to the system.
When devastating news comes our way, we all go through a series of stages: Shock, denial and disbelief – why me, why us, it’s not fair, it can’t really be. Frustration – I can’t do anything to change this, I have no power, then Depression – there’s no point, everything has changed and I can’t do anything about it, sadness and a great sense of loss, and then Engagement – let’s find out more about this, what can we do to help, how we will adapt to this new situation to the final stage Decision – right I know about this now, I have a plan, I can make some adjustments and I am going to take action to do something positive.
Like COVID-19, we went through of all of these stages and as Duchenne is an ever-changing beast, we have to go through this cycle more times than we would like. In fact every time we hit a new phase – a decline in physical function for example – we have to go through every single stage before we come out the other end fighting. Boys and families living with Duchenne have learnt to become incredibly resilient and resourceful especially during these times.
It was when we reached the decision stage the first time around that we decided to set-up Alex’s Wish and do something positive – this helped us get some control back. Just like now most people are looking at new ways of working and getting on with their lives. And it’s that which gives us the motivation to carry on and do what we can with what we have – hope and determination goes a very long way.
COVID-19 is incredibly frustrating for everyone, but we are taking each step to ensure we have as positive an outcome as possible. We at Alex’s Wish have decided to launch a series of virtual events and want our supporters to know that we are still here and still fighting every day to conquer Duchenne.
Nothing has changed, we watch closely those families affected by Duchenne and have seen over the last few weeks boys passing away before they should – boys are still declining, we still have no effective treatments to help everyone and we certainly have no cure. To add to this all our clinical trials are on hold for the time being until it is safe to carry on.
We hope you will continue to support us, you can take part in our virtual events, quizzes, big night in and virtual cycle challenge (more details next week) and help us spread the word about the work we do. It’s vital we push on and do everything we can to bring a better outcome for all living with Duchenne.
We would like to thank everyone who has got involved in the 2.6 Challenge – together you have helped us raise over £6,000 and money is still coming in.
Our thoughts are with you all, stay safe.
Much love, Emma – Alex’s mum
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