As the COVID-19 pandemic slowly built up momentum through London and the entire country went into lockdown in early March, I worried for my son, Arsalan. What would this all mean to Arsalan, a child with autism, whose life would now be completely deprived of the structure and routine that he depended on to survive? A child who is simultaneously battling a fatal genetic muscle wasting condition called Duchenne? A child that can’t fathom what is happening around him?
Arsalan had just turned nine years old. Despite that, he is cognitively six years old, and sees the world with innocence and wonder. In addition, on top of his autism and Duchenne, he is also immunocompromised. When the coronavirus hit London, the government talked about shielding the vulnerable, especially the old, and staying as far away from them as possible for safety precautions. But how could my child do that when it was imperative that he be with his family? Thus, we decided that the entire family must isolate.
As a mother, I went into battle mode. This was not the time to fall apart.
First, I made calls with the pharmacy to make sure we had enough medication for my son. Then, I called the MD specialist; but we didn’t manage to get him on the line so we got a nurse instead. She guided me on what needed to be done and what precautions we needed to take as a family to keep Arsalan safe and healthy. After that, I went grocery shopping and piled on enough groceries for our entire family. I also grabbed the Dettol, the antiseptic wipes, the bleach, the hand wash, and some more supplies. I remember looking at my monstrous heap of supplies and wondering if we were battle ready for up to 3 or 4 weeks of isolation— and the government had suggested 12 weeks for the vulnerable. I knew I would have to get everything delivered to our house from then on.
Once I got home, I cleaned all the bags and groceries, the car handles and the steering wheel, and even the front door knob and the car keys. I left the shoes in the corner, put my clothes in the wash and finally settled down for the long haul. Soon after, I received a terrifying letter from the hospital advising us to prepare an emergency extra steroid injection kit in the case that my son got sick. They wanted to make sure we were well prepared. So we made sure we were. That’s what you have to do to ensure the safety of your sick child— lots and lots of preparation.
But as the days passed under lockdown, Arsalan couldn’t comprehend what had suddenly happened. He couldn’t comprehend why his world was flipped upside down. We tried our best to explain it to him, but he didn’t handle it well. His meltdowns were frequent. Arsalan couldn’t understand why the front door didn’t open or why he couldn’t go to school or why we couldn’t go to the grocery store for a treat. This pandemic revealed to me how much my family relied on the outside world. We especially depended on the school staff, the physiotherapist, the community nurse, and access to therapies to help us take proper care of Arsalan. But we didn’t have access to that anymore. All we had now was a confused little boy with a long list of questions. We tried our best to answer most of them, but there were some questions that we had no answers for.
I could also feel Arsalan’s stamina slowly waning. He was getting weaker, which was inevitable due to him not being able to move around as much. Arsalan needed more help in everything. It was heartbreaking. Additionally, my husband and I had to take on all the roles for the time being, which was extremely difficult. We divided up the work, whilst venting to loved ones and making zoom calls to professionals. We also helped him with his daily walks in the garden and tried to keep everyone’s sanity intact. I came to realise that focusing on the positive, rather than the negative, was the only way through this pandemic.
So finally, as we approach the end of our isolation period, I feel like we all have developed a deeper understanding and a sense of serenity about ourselves. Arsalan has adjusted to this new way of living. He embraces and enjoys more of the love and time that I have to give.
There is love in the entire days that we spend hunting bugs in the garden, building lego creations, learning new things, watching movies and eating his favourite chocolates together. There is love in the way I wipe his tears as I rock him back and forth. There is love in the hugs that we give one another because hugs are some of the most valuable things in the world. As his disease progresses, he won’t be able to use the muscles of his legs and arms anymore, so we hug, and we dance, and I make sure not to waste this opportunity to do so with my son.
This pandemic has certainly not been easy on our family, but it has surely brought all of us closer together and made us realise how precious life is— hugs and all.
Written by: Nida Zuberi (Guest Contributor)
Edited by: Natasha Leong
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