When your son has a progressive disease that will take away his mobility bit by bit and will dramatically shorten his life, one of the messages you hear over and over again from everyone around you is “make memories while you can”.
And that’s all very well – in fact it’s a very good point. But it actually puts huge pressure on a family to make life as perfect as it can possibly be, to make every day like an Instagram picture, to visit everything and do everything RIGHT NOW just in case. And that’s alongside trying very hard not to think about the “just in case” that’s making you do it.
So when COVID-19 forced into lockdown, my first response was to feel that we are being robbed of the opportunities we have to make memories with our son while we can, that while everything may well be “back to normal” in a few months’ time, nothing can replace the time we will lose, all the plans we had. And although clearly that’s true for everyone, the feeling is undoubtably more urgent when we know that Duchenne will relentlessly continue on its path even as the world stops.
These last few weeks have been challenging.
Two young children, one of whom has a complex medical condition as well as Autism, Daddy trying to work in our bedroom with constant interruptions. Sebastian has full time support at school and multiple professionals involved in his care, yet suddenly I am trying to provide for all of his needs while also parenting him and his brother.
There are many people in the same boat and even as I write this, I am painfully aware that we are able to stay safely at home through this – we are definitely the lucky ones.
In amongst the co-existing chaos and monotony, there are flashes of magic. There is laughter, there is joy and there are amazing moments that will be imprinted on my memory forever. I hope they will stay with my children too.
Perhaps we don’t need to work so hard to create those memories.
Perhaps we don’t need to spend huge amounts of money, to set up a picture-perfect scenario, a once in a lifetime opportunity. Perhaps we don’t need to feel failure when those days that we have spent so much time planning don’t live up to what we wanted them to, just as our Pinterest crafts and colour coded homeschool timetables don’t last beyond 9 am.
Because we are the same 4 people, the same family with the same flaws, the same frustrations and the same challenges. That’s true in Disneyland just as it is in our back garden. But crucially, the same magic will be there too. And that’s what memories are really made of.