Maxwell Macleod was born on World Down Syndrome Day 2014.
Every year since then his mum, Molly, has written a piece for us to mark his birthday.
Here is her post for World Down Syndrome Day 2021…
As human beings we need to, and seek to connect, to feel safe and to have a sense of belonging within our community. During the pandemic many of us have felt isolated from our communities, something that has been particularly difficult for Maxwell. Everything for Maxwell is about connecting, with people, with animals, with nature and in particular with his imagination – which continues to be filled with every superhero imaginable.
This last year has brought challenges to our family but has also introduced a number of new and special connections into Maxwell’s life.
Not only did he meet one of his cousins for the first time (and oh my goodness did they have fun together) but he also gained a whole new extended family!
Lockdown number one changed our lives in more ways than one. During March and April last year we all had COVID – at the time there were no tests so we never had confirmation but all the symptoms were there – even the new ones that weren’t known about at the time. Unfortunately for Maxwell when it came to his turn he suffered with it much more than we did, ending up in hospital on a ventilator for 3 days. It was the most harrowing experience I think I’ve ever had. Knowing your child is seriously ill is unsettling for any parent, understanding your child is particularly vulnerable and then not being able to see a doctor until you’ve waited for seven days, is terrifying.
We watched helplessly day after day as he succumbed to the virus; his smile vanishing, his appetite deteriorating, his usual happy go lucky self becoming lethargic and his little lungs gasping for air. COVID at the time was relatively new and unknown and the media talk was of a mild strain that lasted a few days, or a more deadly strain where you ended up in hospital and which could be fatal. And there I ended up, alone, in hospital with a very poorly child hooked up to intravenous antibiotics and oxygen.
No-one was allowed to visit us, not even his daddy or his sister. We were completely isolated, from our family, our friends, from any semblance of normality. Every time someone entered the room they would be top to toe in PPE. That in itself was enough to traumatise Maxwell but they also came in groups of 6 or 7 at a time – to come and check out the new patient, to learn more about this unpredictable virus.
It was the most surreal and unbelievably stressful few days, but true to form Maxwell battled through it and managed to bounce back as if nothing had happened. As soon as the antibiotics had kicked in and he could breathe again he was off, up out of bed running up the corridor to charm all the nurses, the doctors, the other patients – anyone he could find to listen to his stories of Spiderman and Ironman! He seems to have recovered well with no lasting repercussions thankfully, although he still hates any mention of the word hospital and it’s taken him almost a year to be okay with us wearing masks around him.
It was April time that couples not living together were being advised to think about doing so, rather than breaking the rules by visiting each other’s homes. I had met my new partner Christian a few months earlier and we were finding the prolonged separation hard. Although we hadn’t been together long it was going well and we had recently introduced our children. We thought that temporarily ‘moving in’ together for lockdown would be the perfect opportunity for the kids to spend some time getting to know each other a little better, after all it was only going to be for a few weeks right?!
Maxwell loved having a new big brother and another man in the house; they wrestled and built dens, they played guitar and Nintendo Switch and they shot each other with nerf guns – it was so much fun to see him enjoying being such a boy!
Because of the risk of getting COVID again Maxwell spent the first lockdown with his teaching assistant Ramona rather than going back to school. Every day they would pack a lunchbox and go exploring: into the woods, up the hill, down to the pond. Everyday he came home exhausted, muddy and oh so happy. His confidence grew, he physically grew and his learning came on leaps and bounds.
The summer was filled with sunshine and laughter, we splashed in the paddling pool and had water fights; we played the hoop of truth and sat round the fire telling stories. Connection was at the heart of all our experiences as a new blended family. We spent time getting to know each other, our neighbours, our community and all in ways we hadn’t appreciated before. We suddenly had all this time together, no school or work as we knew it – it was chaotic, exciting, unnerving and fun all at the same time.
We learned new words, found new routines, discovered new likes and dislikes. We questioned ourselves; we questioned each other and we questioned the world and our values. We listened to the news, we didn’t listen to the news and we slowly learnt to accept this ‘new normal’. We connected. We connected in ways we hadn’t before – as well as life before COVID there was life before Zoom, what a game changer! What did we think we were doing driving to all those places just for a couple of hours – much easier to do it all from the comfort of our own sofa… until Zoom fatigue set in and we realised we desperately missed even the tiniest of connections with those we loved – holding hands, warm hugs, eating, drinking and laughing together.
We have learned so much about what’s truly important to us, we’ve learnt that slowing down and appreciating the little things brings us joy and that family and friendships matter above all else. Taking time to be there for someone, to show them you love them and to genuinely connect with them is the most precious thing in the world.
This glimpse into another world, a way to live a different life, has changed us all so significantly in such a short space of time. Some connections have become stronger as a result – Christian and I decided to make things more permanent and moved in together last September. However, one connection has recently changed for Maxwell and our wonderful Ramona will sadly be leaving us this summer. We are so excited for her but so devastated for us and especially for Maxwell. She has been by his side since he was 3 and he doesn’t remember a time without her. She is his school mummy, his fairy godmother and his best friend. They have been inseparable for all of his life and now he must say goodbye.
But with every ending there is a beginning and this change also brings with it an opportunity for a different way to approach his education. His set up during lockdown has shown us what he needs to flourish and so we are exploring our options. We hope to find a school where Maxwell can make all kinds of new connections, where he can continue to explore the woods, to be outside with nature and above all be in the water – anything with water – and if there’s mud too even better!
None of us know what the next chapter holds, the adventures that await us and how these will shape us. However, our experiences this last year have shown us the true value of connection, of appreciating each other and how we enrich each other’s lives. Ultimately, when we leave this world all that’s left behind are the memories of us that live on in others through the connections that we’ve made with them over a lifetime. As we finally start to emerge from this latest lockdown we are looking forward to a future where we surround ourselves with people that make us happy, where we know that we are loved and where we belong.
This years Max Factor is dedicated to our beloved cat Mabel who we lost to the virus this year and to Ramona who we will miss every day.
