131 Days Later (part 19)

19 weeks. 131 days. 3144 hours. 188,640 minutes. Whichever way you depict these stats they are a very long time in regards to a family with a child who has a life limiting illness. Compared to his peers these 4 months equate to years. Time is precious, every second of every day is precious. Since Alfie’s diagnosis our lives have been filled with so many questions that we don’t have an answer to but we always said that whatever happens we want to make as many memories as possible. What we didn’t factor in to that equation was Covid-19!

Northern Lockdown

What started off as 84 days shielding was then extended to a total of 131 days. As I’m writing this, the region that we live in (Greater Manchester), has been put under another strict lockdown. Unbelievable to think that this would happen the day before shielding is paused. I’m seeing lots of people moaning about the governments incompetence on social media. Welcome to our world is all I can say to that!

Ostracised

The government should be helping to make sure that the people who have been shielding aren’t ostracised. We have as much right to live our lives as everyone else. We want to get back to some form of normality for not only Alfie’s well-being but our own as well. By this I mean both physically and mentally.

Shielding Identity Lionyards

We don’t want to have to face another lockdown situation so practicing social distancing and wearing face masks is even more important from this weekend as shielding is paused. I have been working with Muscular Dystrophy UK over the past few weeks in regards to our shielding experiences and also to see if we could work together to create some form of identity lanyard or badge. I designed the children’s version which I’ve aptly named the ‘Lionyard’, the design below explains why I chose the lion to help identify children who have been shielding during the pandemic. Disappointingly though when a representative from MDUK went to a recent cabinet meeting to put this forward to the government they weren’t really interested in taking this forward. As I’ve said all along the ones who have had the most patience and sacrificed the most are left at the bottom of the pile once again!

There will also be a couple of other designs that adults can download including one from MDUK ambassador, Chloe Ball-Hopkins. Her design incorporates a white Heather flower as it symbolises protection. I’m due to appear (via Skype) on our regional news programme, Granada Reports this evening (Saturday) to discuss the lanyards and also our shielding experience.

The ‘Lionyards’ are available to download using this link… MDUK distance aware badges

It’s been a rollercoaster of emotions over this period of time. If I’m honest we’ve had a lot of low moments but we’ve also had some great moments. We’ve celebrated 3 birthdays in our household during lockdown, not exactly the way we would like to have done but hopefully we will be able to celebrate Mila-Rose’s 8th birthday in style in September along with my Mum’s 70th birthday celebration (she won’t thank me for advertising that!). After Alfie’s birthday though I’ve still got a lot to live up to! That definitely will go down as one the lockdown highlights (Check out part 4 and part 5 of the blog for the full lowdown!).

Hopefully this is/was just an unprecedented time of our lives. One that if we all continue to work together, look out for each other, follow the social distance guidance and wear face coverings in enclosed spaces (if you can do so!) the infection rate will eventually come down. We can all then go about our lives, maybe not quite the same as before, just a bit more freely than the last 4 months. Shielding has had a big impact on us as a family. I feel more alert to situations (not down to Boris!), I’ve experienced a kind of social anxiety like never before and it’s also been a time to reflect and reevaluate. Mila-Rose and Alfie know about Coronavirus and we’ve spoken to them about trying to keep 2m apart so much so that they’re like the social distance police when we go for a walk! “Daddy, look they’re not social distancing!” Oops! We now have to redress the balance in regards to making sure they don’t feel the big wide world is a scary place for them.

Thank you to everyone that has taken the time to read my lockdown blogs during the last 19 weeks. I hope I have given you all an honest insight into our experiences and that you are also a little bit more educated about Alfie’s condition. I’d also like to say a massive thank you to all the NHS staff, Supermarket/Shop staff and other key workers who continue to work tirelessly to keep our country as safe as possible. It’s very much appreciated.

I’m hoping that in a few months time when I’m back in work and the kids are back to school that I think to myself, “You know what, I wish I was back at home everyday with my beautiful family”. In all honesty that’s what we all crave for when we’re doing the 9 to 5 but after this experience I think it’s best in moderation!

Stay Safe. Social Distance. Mask on, Mask off (just like Mr Miyagi!).

Kieron #duchDad

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