A New Kind of Normal

In his short time on planet earth Alfie has endured a lumber puncture (which thankfully led to him being lactose intolerant and not meningitis as first feared), he’s suffered a broken collarbone, a diagnosis of a life limiting illness and to top it all off, he’s currently living through a pandemic! He could write a book – The Not So Secret Diary of Alfie Sales aged 7 and a bit! – hmmm, could be a bestseller in the making there!

He’s already had his fair share of hospital appointments in his time, probably more than some people have in their lifetime! He and other boys we meet with Duchenne still fill us all with inspiration and most importantly, hope. Alfie loves life and gets up everyday with a huge zest for the day ahead. How can that not give you have a positive outlook on life?

Winter lockdown

The Winter lockdown was tough. Post-Christmas is hard enough at the best of times but facing a lockdown during the dark winter days was really tough. Homeschooling was relentless. Zoom call after zoom call, independent task after independent task. Made even harder by the fact that kids need routine, especially Alfie. Take him out of his routine and it really stresses him out. After finally receiving his EHC plan at the start of the summer term (after a 2 year battle to get it in place!) this lockdown led to him being even further behind in his learning as he didn’t have his one to one (well he had us but to him we are his Mum and Dad not his teachers!).

Mila-Rose also became very dependant on us both. I suppose it’s only natural given the amount of time we’ve all been together. The separation anxiety well and truly kicked in once they both returned to school. Thankfully now they have both settled back in really well at school and both received glowing praise from their teachers in the end of term reports. We’ve also signed Mila-Rose up for a girls football club so hopefully that will give her some confidence in herself and she’ll also get a bit of quality time alone with myself or Louise.

Hospital Appointments

Back in late March, we had an appointment at Manchester Children’s Hospital. It was Alfie’s calcium clinic. He hates hospital appointments and gets really stressed about them. At this clinic, we discuss his bone scans, diet and his Vitamin D intake as Alfie takes a fortnightly supplement to boost his levels. He’ll usually have a blood test and this is why Alfie fears every appointment due to the thought of having an injection. During the pandemic, the hospital appointments have been limited but they all seem to have come at once in the past few weeks. Usually both myself and my wife, Louise would attend the appointments with him but at his bone density scan, only one of us was allowed into the hospital with him. This was the same for the Calcium Clinic and it’s hard leaving him and seeing him so distressed. We drove to Manchester only to find out when we got there that the appointment had been cancelled! Alfie had got himself all worked up and was inconsolable before we set off. We hadn’t received a phone call or letter to say it had been cancelled. Fortunately, we didn’t have to put Alfie through the ringer again as it was done as a telephone appointment at a later date. His Doctor was really pleased with his bone scans and said that his bone density was that of his peers which is very reassuring as you always have the anxiety in the back of your mind that things may have changed and the call was ended with a “long may this continue” from the Doctor.

As we hopefully near the end of these COVID restrictions, it’s nice to have some form of normality. 12-18 months out of anyone’s lifetime is a big sacrifice but when you’re 7 years old and have a life limiting illness, the sacrifices are far greater.

A trip to the Cinema

This week we had a massive breakthrough as both Mila-Rose and Alfie had seen on TV that Peter Rabbit 2 was finally being shown at the Cinema. Now Alfie doesn’t have a great track record at the cinema as he’s not that keen on large open spaces and noise. This is quite common for boys with Duchenne as I have mentioned it in previous blogs. He decided he was going albeit a little apprehensively so on Wednesday morning they both bounced up out of bed to announce it was Peter Rabbit day! We’d booked the 16:50 showing after school so they were very excited. Mid-morning that day I received an email from Cineworld to say that the screening we had booked had been cancelled due to scheduling! There was no way we could pick them up after school and disappoint them so we managed to get into an earlier screening but it goes to show that although we’re heading towards some form of normal it’s not quite the normal we once knew.

Alfie tucking into his lactose free pizza!!

Alfie was very nervous going into the cinema so he wore his ear defenders and I carried him in so he could close his eyes until we were seated. We managed to get there before the lights were dimmed so that eased his anxieties. Within 5 minutes of sitting down the ear defenders were off, he was tucking into his popcorn and chuckling away at the movie! A high relief as both myself and Louise were anxious as to how he would react and also it can put a dampener on Mila-Rose’s experience. A great family evening out was finished off with a trip to Twentyman’s for their favourite pizza!

Summer holidays

As we approach Summer – well you wouldn’t think it with the weather at the moment! – we would usually try to get away abroad with our family at least once a year to make those ‘precious memories’ but that looks highly unlikely for us until 2022 at least. The UK staycation is proving to be very popular in these coming months but the UK’s seaside towns will also be extremely crowded and the prices for short breaks are already skyrocketing eg. £2k for a week in a caravan at a Haven Park in North Wales! You’re not exactly guaranteed to have glorious sunshine like you would in Spain either!

Relationships

Being at home for such a long amount of time also affects your own relationship. Yes, you get married to be with that person for the rest of your life but no one mentioned in the terms and conditions that you’d be living with them almost 24/7 for over a year!!! It’s not healthy for any relationship to be in that situation and as well as dealing with everything else we have to deal with day to day, throwing a pandemic into the mix really tops up the stress levels! I think what we have been through these past few years would put a massive strain on any relationship and in some cases possibly end in separation but we’re still going strong and now as we’ve both had our full vaccinations we’re looking forward to a few well deserved date nights! Not sure what we’re going to talk about though!!!

Safe Haven

The safe haven of our home, the place where we were are supposed to relax after a tough day has endured a large amount of stress, meltdowns and sometimes even silence this past year. It’s not a school. It’s not a workplace. It’s our home. On the positive side, we’ve also spent some quality time together in which we’ve made some amazing memories, sometimes through a bit of creativity and other times just being in the moment.

Hopefully now we’re on the right road(map!!) out of this lockdown and we’ll soon be back to living life to the max just as Mila-Rose and Alfie like it!

Take care,

Kieron x

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