Dylan was initially a bit bemused by the lock down. We went into it a week earlier than most on the advice of Dylan's medical team and he didn't get to say good bye to his friends. He also didn't understand how he'd been at school one day and wasn't allowed the next. That said, we all relished, and now cherish, the unexpected time we had together. We laughed, played and spent quality time together.

Being a single parent strictly shielding with three primary school aged children brought some real challenges. Jake was in year six, Dylan was in year three and Elliot was in year one. They all had very different topics and very different levels of motivation! Dylan was by far my most willing student over this whole period. He would be sat at the table with his 'ipad' (its actually an android tablet but to him it was his 'pink ipad) and books before the other two had dragged themselves off whatever device they had glued themselves to whilst I was in the shower.

It took a while but we eventually got into the swing of things. We enlisted the virtual help of my parents so that we could meet the needs of all three children. Due to Dylan's treatment related disabilities, he did not follow the year three curriculum. Instead, I adapted Dylan's school work so that he was only doing the things that helped him in the long run. We worked on his memory by story ordering. In the morning, my mum would read him a story over skype (whilst I was working with one of the other boys) and in the afternoon, he would use pictures to retell the story to me. Also in the morning, Dylan would practice writing his name. In the afternoon, Jake or I would read him The Lion, the witch and the wardrobe or The little red hen which were books he had been reading at school. Dylan also became somewhat obsessed with the 'mathseeds' app and he reached a really high level. Dylan would sit on my lap and play it for ages. He would also ask me to help him play it continuously through the day.

Academia aside, Jake and Elliot would spend their down time in the pool or on the trampoline, neither of which kept Dylan entertained for long, so Dylan and I would sit at the table and play games together. Everyday, without fail, we would play 'shopping list', 'crazy chefs', 'smelly wellies', 'pop up bbq', 'pig goes pop' and the horrid henry board game. We would also play with the play-doh and make the most amazing looking food. Dylan was a big fan of making pizza and burgers. We would also go for a drive most days for a change of scenery and we would go to a neighbouring village to see the horses in the field.

Dylan spent a lot of lockdown sat on his special chair at the dining table either playing, working or eating me out of house and home. He was a huge fan of red apple, which had to be peeled and sliced in a specific way, butter pancakes, chicken, broccoli and gravy, sausage rolls, plain crisps, hoops and milk and chocolate rolls.

Lockdown meant the end of the private treatment but, thankfully, by this time the NHS had taken on the bulk of Dylan's treatment. This still went ahead for 5 days once every three weeks. Due to COVID, the boys weren't able to come on the ward with us, so for the treatment days, they would stay with their dad. This meant that Dylan and I would have even more time to spend together. We still did his school work and played our games around medical appointments.

We stayed in Lockdown until late July when we formed a bubble with my best friend and her children. Dylan relished seeing his friends over the summer holiday and by august, my parents had strictly shielded long enough for us to go and visit them. Dylan was so pleased to get out of the house!

The start of the school year in September marked the end of lockdown for us and Dylan was able to start year 4 with his friends. He was fortunate enough to see them all but sadly, it wasn't to last and towards the end of September, Dylan was admitted to hospital for the final time. 

In hindsight, lockdown for us, meant that we all got to spend time and make memories with Dylan that we would not have ordinarily had and for that, I will be eternally grateful.