You may think that I have made an uncharacteristic typo in my heading but I can assure I have not. I personally believe that we are no longer a United Kingdom in our stance on Coronavirus. Boris Johnson and his Government have loosened England’s laces away from Scotland, Ireland and Wales in how we move forward in protecting a once United Kingdom against this pandemic. I’m not quite sure what the Government’s thinking was in changing from ‘Stay at Home’ to ‘Stay Alert’, it’s almost as if though they are enforcing a cull. How can you possibly ‘Stay Alert’ against a deadly virus? The original ‘Stay at Home’ message is understandable and quite simply telling us as a nation to do exactly that! It’s also very conflicting that the Chancellor, Rishi Sunak announced that furlough would be extended until the end of October 2020? It’s all very conflicting, I suppose only time will tell.
As you all know we’ve been in complete isolation since the 21st March. We are trapped in our house and it’s surroundings. Thankfully the weather and the garden have been our saving grace. The gnawing anxiety associated with being in physical isolation is emotionally draining. I’m not sure how much longer we can cope as these last two weeks have been incredibly tough. Having been totally locked in, myself and Louise are currently like ships that pass in the night. We’re worn out, constantly anxious, overwhelmed and in desperate need of a break, not just from the kids but from each other! There’s literally been no escape. We usually rely on our parents for our respite but three out of four of them fall into the over 70’s category so I’m not quite sure how that will work out once lockdown ends for us! This prompted Louise to contact Alfie’s Consultant at Manchester Children’s Hospital, she has given us permission to go out for short walks around the perimeters of where we live. She knows we’re sensible enough to observe social distancing, we just have to be careful of others who maybe ignore that fact. After all you can be the safest driver on the road but there is always one careless driver who will crash into you. I’ll update you all on our parole status in the next blog.
We’re finding it even more difficult to get Mila-Rose and Alfie motivated to do even the slightest bit of school work. People say it’s ok they’ll catch up but being with Alfie these last 2 months has only highlighted the fact even more how much more support and assistance he requires in regards to his learning and sometimes challenging behaviour. We’re their parents not their teacher, we’re not equipped with the skills or the tools a teacher possesses. I’ll give you an example, Mila-Rose and Alfie’s teacher this week very kindly did a video call with them to catch up and speak with them about their school work. Honestly they sat there like butter wouldn’t melt, like perfect little children! Two minutes after the call ended they were both a complete pain in the arse again! It’s a desperately challenging situation for any parent but even more so for parents in a similar position to ourselves.
There are around 1.1 million children in the UK with a disability. In England, there are nearly 87,000 children and young people with life-limiting or life-threatening conditions. I would say that a high percentage of their parents are on the brink of collapse and that they urgently need support as they are at the point of burnout. I do hope the Government have taken this into consideration once we’re all out of lockdown as a lot of families of disabled children are going to require increased mental health support on the part of both their children and themselves.
BBC Radio Manchester interview
On Tuesday morning I was invited to do a short interview with Becky Want on her BBC Radio Manchester Breakfast Show. Prior to the interview, I had spoken with the Producer of the show in regards to the content of the interview and she said Becky would just want to know about Alfie’s condition, Action4Alfie and about my achievements from the #HappyBirthdayAlfie social media campaign. As it was going out live to listeners across Greater Manchester I was nervous enough already! Take a listen at the link below and you’ll hear that the majority of the interview was about lockdown and shielding! I think I handled it well enough, after all I’ve watched enough politicians swerve questions over the past couple of months!
This Saturday (16th May 2020) we should have been hosting our joint Leighnix Nights fundraiser with Two Hips, One Knee. Sadly we had to postpone the event due to the Coronavirus pandemic. Our good friend, Rosey McNally has Avascular necrosis (AVN), a life crippling disease. In short AVN is a disease that stops blood flowing to your joints and in turn means that the bone slowly deteriorates and eventually dies. Despite this diagnosis she is incredibly strong, full of life and is one the most positive and kindest people you will ever meet. Earlier this year we came together and planned Leighnix Nights, we completely sold out of tickets to this event within 5 days of them going on sale! We’re all absolutely devastated it couldn’t happen but everyone’s safety has to come first. In the words of the man himself, Brian Potter… We had a dream, people, we had a dream! Bigger, better, faster, stronger, rising from the ashes. Leighnix from the Flames! Watch this space!
Enjoy your weekend!
STAY HOME. STAY SAFE. KEEP YOUR DISTANCE.