It’s been yet another busy and fast paced last few weeks and I’ve not really had much time to blog.
To be honest the last few weeks I’ve felt like everything’s caught up with me all at once. Not just the last few weeks catching up but the last year or so. I’ve never felt so exhausted, both physically and mentally.
Since my last blog we’ve had 2 birthdays, Easter, a bucket collection in Manchester for Action Duchenne, seen Take That live and the weekend was rounded off with a 5th birthday party for Alfie. Oh and then May began with a week away with the family in Salou, which has just helped to recharge the batteries. Its always great to switch off and take the foot off the gas. Especially when every 2 minutes you’re constantly asked what are we doing next (that was just Louise 😂). More about the holiday later.
The day before Good Friday I was lucky enough to finish work early which allowed us to volunteer for a bucket collection for Action Duchenne on Market Street, Manchester.
We all met up with the amazing Lynnette and Helen from AD to help with the last couple of hours of the collection. It really was very rewarding to be collecting for a charity very close to our hearts.
Easter Sunday was Louise’s birthday so we celebrated it with an Easter Egg hunt in the morning followed by an Easter party to watch one Mila-Rose and Alfie’s fave, Louby Lou.
Easter Monday was the real birthday celebration for Louise as I’d got her tickets for Christmas to watch Take That at Manchester Arena. Not really the kind of band I’d usually watch (I’m more of an indie ‘kid’ myself) but quality time alone is precious and a date night is always a winner as they’re a rarity.
It was then followed by Alfie’s Superhero 5th birthday party and a good time was had by all 👍🏻
After all the excitement of Easter, birthdays, parties etc we could now focus on a week away in Salou. It’s always stressful in the build up to a holiday even more so when you have young children. We had an early morning 6am flight on the Sunday so we had to be up early, the taxi was booked for 3am. I set my alarm for 1.30am to give me half an hour or so to come round before getting everyone else up. The worst thing about having an early flight is you’re frightened of going to bed in case you oversleep.
Now as I was saying earlier, tiredness had well and truly kicked in the last few weeks and yes you’ve guessed it… WE OVERSLEPT 😮
I rolled over, checked my phone and it was 2.44am!!! Expletives filled the air, we were running around in a panic. It was like a scene from Home Alone 🙈 Thankfully the taxi was going to pick my Mum and Dad up first so we had an extra 20 minutes or so to get sorted.
Something we can laugh about now but at the time it wasn’t funny 😅
The holiday was a great break. As well as going with my Mum and Dad we also had an extra surprise for Mila-Rose and Alfie at the airport. My sister, brother-in-law and nephew were also going so imagine their faces when they saw their big cousin Finley at the airport!
Alfie’s going through ‘hopefully’ what is a phase of serious meltdowns and he had a few of them on holiday. On one occasion we’d gone out for a walk into Salou and there was an amusement arcade with one of the cuddly toy grabber machines. 🙈 Being the hero Dad, I thought I’d win one for them both quite easily with the €3 change I had in my pocket! It wasn’t to be. Alfie then went into full meltdown mode. He was kicking, punching, screaming, his body was stiff and arched so he wouldn’t go back in his wheelchair. I WANT A CUDDLE TEDDY! He was saying this repeatedly and it got louder and louder. You could feel everyone’s eyes burning into you as if to say control the situation. Now every parent has gone through this stage I understand that but Alfie gets fixated and when he gets fixated he just won’t let go. This is a common trait in boys with Duchenne and we’ve been told they can also be on the autistic spectrum. The lack of dystrophin not only affects the muscles but it can also affect the brain. He also doesn’t like big open spaces and dark rooms ie. the cinema.
We rode the storm and eventually he calmed down. The hard thing for myself and Louise is judging where this behaviour stems from. As Alfie’s at a young age and although he’s 5, the delay in boys with DMD is up to 2 years so his maturity is possibly only that of a 3 year old.
Is the behaviour down to the DMD? Is it down to his medication? (he takes Prednisolone daily and we were told his behaviour could be a side effect) or is he just being a typical toddler? It’s a very emotionally draining position to be in as a parent. It’s not Alfie’s fault that he reacts this way and when he’s calmed down he’s back to his loving and charming little self. It does makes you question yourself though as to if you’ve made the right decision in the choice of medication. After all you can only go with advice that’s given from the medical experts but not all medications suit. On the opposite side, the steroids have helped Alfie physically and also with his key motor skills. We just need to find that balance and find a way to deal with these situations when they arise. Add this to everything else that you continue juggle in the background (adaptations, hospital appointments, physio, work, school, family life etc) it kind of adds up as to why you oversleep for the airport run 😁
Speaking of runs, no I’ve not had Delhi belly! I’ve recently joined a running group at my local gym and I’ve found this as a great way to release some stress. I’ve signed up for a 5k next month and then my aim is to do the Leigh 10k in August. It’s a great way to get out and enjoy the local scenery.
Tomorrow also sees our good friend, Hazel compete in a half marathon and she’s very kindly fundraising for Action4Alfie. She’s competing in the Liverpool Rock n Roll event. Best of luck Hazel and thank you for your amazing efforts. If you would like to show your support please follow the link. Any small donation is massively appreciated.
Well I think that’s a fully full update from me.
In my next blog I’ll be informing you about how our Duchenne from a Parents Perspective presentation went.
Have a great weekend 👍🏻
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