100 Days Later (part 10)

You may notice that the blog title has changed! 84 Days Later has now become 100 Days Later due to the Government extending shielding until 30th June. A lot of mixed messages again from Boris and co this past week and I feel a lot of the announcements have been to deflect the attention from Dominic Cummings. Let’s give the public something back and put them even more at risk! As of yesterday (1st June) most of the general public returned to a sense of normality after their ‘lockdown’ period. You can now have up to 6 visitors in your garden but if you’re a family of 4 does that mean you can only have 2 visitors? They never really quite explain it in detail do they? The lack of clarity strikes again! What’s also increasingly frustrating is the amount of people that continue to flout the rules, the announcement was made on Thursday 27th May and due to the sunny weather we could hear groups of people happily gathering in other peoples gardens! Hey, I’m all for people having a good time but when you’ve been confined in your own home for 10 weeks you can’t help but feel a bit pissed off! You only had to wait a few days!!!!

Haircut One Hundred

Locks Down Barber Shop

A few ‘firsts’ have happened in the house this past week. Alfie has very thick hair and like mine as a child it doesn’t grow long as such, it just grows thicker and thicker. My nickname for it as a child was ‘Microphone Head’. It was time to call in the Barber. The Barber being me! A quick call to my Dad to borrow his hair clippers and then it was time for action. The Mop Top was about to become a Cropped Top. It took a while to get through the mound of hair on Alfie’s head but as you can see in the pictures above I think I did an alright job! Obviously once Alfie was all neat and tidy he immediately moved onto me having it done! Now I’ve shaved my head twice in the past, the first time was 20 years ago when David Beckham made it look cool (I had a number 1 all over!) and the second time was when I thought having blonde highlights in my hair would really suit me. They didn’t and I subsequently went back to the hairdresser the same day and had it all shaved off! (Thanks to my sister, Janine for reminding me of that one!) Anyway, I had a number 4 all over which then went to a Number 3 the next day as it didn’t look quite right! Now when I was was shaving it, I envisaged mine to look like Alfie’s. A perfect hairline and golden brown hair, unfortunately I had to make do with more grey hair with a slightly receded hairline. More George Clooney these days than David Beckham!

Hi-de-Hi!

Hello Campers!

Well as we won’t be going on holiday this year, we decided to bring it to our back garden. We had a video chat last week with fellow Duchenne parents, Bernie and Rachel and we got onto the discussion of holidays. They mentioned they had a tent which they hadn’t used for a good few years and we were welcome to borrow it so we could have an adventure. Bernie very kindly drove over on Sunday morning from Blackburn and dropped it off (at a very safe distance). By Sunday afternoon, our tent was all set up and our camping adventure commenced! After the Burgers, Fries, Chicken Kebabs and snacks came lots of bedtime stories followed by going to sleep on the first night with Alfie waking up at 4am saying he was cold! Back inside to the comfort of our own beds! The following evening was much more successful and we managed to sleep through as extra layers and duvets were provided by the camp site!!

Zoom calls

I have found the Zoom calls to be a great stress release and every Wednesday I meet up with my mates and usually we partake in a weekly Facebook quiz. We then have a good catch up and a moan about the previous week! Just to break it up, we decided to follow the lead of Lineker, Shearer and Wright with their Match of the Day Top Ten’s and host a football debate. I compiled a list of ‘Favourite Football Moments’ for them to choose from. We all donned our retro footy shirts and each selected (and discussed) our selections of favourites ie player, goal, match, kit etc. It was so successful that we’ve decided to carry it on this week. The first weeks list was as follows so please feel free to join in by leaving your comments on the blog page or in the comments on the social media page. I know football isn’t everyone’s topic of discussion but you could choose your Top Ten’s in Music, Films, Books etc.

Choose your favourites

Well that’s about it for me this week. Enjoy the rest of your week.

Stay wherever and be whatever you want to be!!!!

Kieron

#duchDad

84 Days Later (part 8)

Untied Kingdom

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.

Lockdown

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.

Home schooling

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!

My Interview with Becky Want on BBC Radio Manchester

Leighnix Nights

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.

Kieron

#duchDad

84 Days Later (part 7)

Defying the odds?

On 7th May 2016, Leicester City played their final home game of the season against Everton. After that game they received the English Premier League trophy in a season which they defied almost uncertain odds. In the stadium that day there were 32,140 people. Picture in your head the football stadium pictured above packed to the rafters. The harsh reality today is that almost the same amount of people in the stadium that day have now lost their lives in the UK to Coronavirus. Alarmingly, a percentage of people in the UK continued to ignore the Government’s advice this weekend whilst celebrating VE Day and still think they can defy the odds that Coronavirus won’t affect themselves or their families. I’ve seen clips online of large mass gatherings dancing the conga and as I’m writing this a whole street doing Oops Up Side Your Head! In 2 weeks or so those people may pay the consequences and unfortunately so might many other innocent people.

Close to home

For us personally, it’s getting very close to home as an elderly couple who live just 3 doors down on our street have both had Coronavirus, thankfully they have both made a full recovery. 10 weeks on from the first reported death in the UK, it’s still here and it’s not going to go away anytime soon. If the way people have ignored the lockdown this weekend then in another 10 weeks we maybe looking at a death toll that would fill Old Trafford (approx 75,000).

In this period of time, the entire world has had a glimpse of what it feels like to be a patient and parent with a terminal diagnosis—to be told potentially there are no tests, no treatments, and no answers. The Coronavirus response shows how much more we can do to change the system and fight against terminal illnesses. Now perhaps people will understand a little what having a child with Duchenne feels like. c/o Raising Reed Facebook post

Frustration

I have to say this week has been the toughest of all the weeks we’ve been in self isolation. It now feels as if there is no escape. In fact there isn’t. You personally maybe self isolating but you have the option of leaving your property to go out and do a bit of exercise or call at the supermarket. I can imagine it’s quite literally a breath of fresh air to get away from your partner or a break from the kids constantly screaming at you for a snack! We all need that space! Unfortunately we don’t have that kind of luxury and the frustration of this has definitely crept in this week. Self isolation has pushed many of us to spend more time with our families than ever before. We’ve had to find the solution as to how we work, parent, home school and simply get on as we move through the same rooms all day long. This would quickly deteriorate even the most stable of relationships! A simple fix to this problem today was quite simply the warm weather and a hosepipe sprinkler! It’s not always that simple!

Choose your battles wisely

On Tuesday evening, we endured another of Alfie’s night time behavioural meltdowns and it went on for almost 3 hours. A small trigger of simply not wanting to get into bed at 7.30pm resulted in him only going to sleep at 10pm that evening thus leaving us both physically and mentally exhausted. So much so I retired to bed as I literally had no energy left.

Problematic behaviours are quite common in all preschool children, and boys with DMD are no different. However, young boys with DMD may have more difficulty with impulsivity and emotional control than other children their age. They are also more likely to be rigid and inflexible in their thinking, which can result in noncompliance or arguing. They may have difficulty making transitions. They may also be taking steroid medication with side effects that can impact their behaviour, such as making them more emotional and active than normal. c/o Parent Project MD

Unfortunately, it continued into the next morning for over an hour as I took a stand against his behaviour and took away the TV remote control. A battle I was never really going to win. This prompted Louise to speak to an educational expert (whose son also has Duchenne) a couple days after this latest incident and he stated that in this scenario you have to choose your battles wisely. His advice for the future is to take Alfie out of the situation, maybe downstairs for a while to calm him down then once he’s settled down take him back up to bed. Wise words when you’re not in ‘the moment’ but when you’re physically and mentally challenged after a long exhausting day it’s difficult to know what to do for the best. For us as parents these are all learning curves and almost the same as having a newborn baby, everyday is different and we’ll come up against a new challenge daily.

New logo

I decided to give the blog a bit of a spring clean this week along with a new logo. The ‘d’ on the left representing Alfie and the ‘D’ on the right representing myself. I’ve also set up a dedicated Facebook page to the blog so please click the link and give it a thumbs up. Thank you.

BBC Radio Manchester interview

On Tuesday 12th May at approx 8.15am, I’ll be doing a ‘live’ interview with Becky Want on BBC Radio Manchester Breakfast Show discussing my recent Action4Alfie social media campaign. I’m not quite sure what to expect as I’ve never done a live radio interview before! Wish me luck!

Well that’s almost 7 weeks isolation completed and we’ll just have to wait and see what Boris announces in regards to lockdown later today.

Stay Home. Stay Safe. Stay Distant.

Kieron

#DuchDad