He’s 15 years old and he deserves to be able to see the world around him, even amidst a pandemic, writes Tracy…
The past week, I’ve seen teenagers up and down our street. Laughing. Carrying their hurley. Coming back from the shop enjoying a 99. There is no social distancing. There is no thought of Covid-19.
I remember being that young and thinking I was untouchable. Immortal even.
Last Sunday, for the first time in over 2 months, I lifted my fragile son out of his bed and put him into his wheelchair so we could leave our house. I couldn’t take being trapped any longer. Modification works on the house are another thing shot down by Covid-19 and it has left me without the overhead hoist system that would have otherwise been in place by now. There’s no telling when it will be done. At the very least, I’m hoping to get the outside works done, but I am meeting resistance from the builder. A ramp and paved drive so I could finally take my son out to the back garden would be amazing, but it’s another fight, it would seem.
There we were – me, Declan and Brendan Bjorn – in the van together once again. Joyous!!
First stop was at the local shop. I put on my mask and gloves and readied my debit card for touchless payment. Inside, I ended up looking like a rabbit bouncing around trying to avoid everyone shopping as they had no mind to practice any physical distancing whatsoever. It was clearly up to me to protect myself. There was no group effort to be found.
We drove to a spot next to a river and had a picnic. No, don’t worry, we did not follow the example set by Ireland’s Taoiseach, Leo Varadkar.
We had our picnic in the van.
It was actually lovely just to get out of the house, see a different sight, open the doors and feel the breeze on our faces, while Declan and I shared some chicken and cheese and then some cheeky biscuits. We just sat there watching the herons and the geese. People walked by us consistently. Traffic was steady. It was like last year…you know, before all of this happened…except it wasn’t. It wasn’t the same for us.
It isn’t the same and we wonder when, or if, it will ever be the same for us again.
We weren’t ready to go home yet, so we took a drive. Before anyone says we broke restrictions, we didn’t. People with disabilities and their carers are allowed to go for a drive beyond their restricted zone. Anyway, off we went, ending up at the beach. I knew it was closed but it was such a beautiful drive and Brendan Bjorn was beaming ear to ear, as was Declan, so how could I go home yet? We were stopped by two County Council workers (who kept their distance, thankfully) and I said how I knew it was closed and where we live, I pointed to Brendan Bjorn, and said we were just taking him for a drive.
Pleasantly surprised, we got the green light and he was allowed to enter.
As we drove to the car park, there were handfuls of people walking to and from it. We parked. I sat there debating whether or not to take him out of the van. I looked at Declan, and his 12-year old, smiling, freckled-face looked over at me and I knew he was desperate to get out. OK, let’s go. With that, we unloaded Brendan Bjorn and set off across the car park to the boardwalk that goes up the hill and then slightly back down the other side toward the beach.
White sand and a gently rolling ocean awaited.
Brendan Bjorn could go no further, which meant I could go no further. We had to stop where the boardwalk ends. I stood there next to my 15 year old son as I watched other teenagers walking along the shoreline, swimming, and lounging in the sun. There was only about 30 to 40 people on the beach – far less than would normally be for a beautifully sunny day – but more than I was comfortable with as they would walk by us with no social distancing at all, adults and youth alike.
I thought, do they not see my son and realise how vulnerable he is? Do they not take COVID19 seriously?
Declan had walked down to the ocean. Oh, how he loves the ocean! I stood there, where the boardwalk ends, stroking Brendan Bjorn’s hair…and I cried. My heart ached to be with Declan, to feel the ocean lapping at my legs and the sand between my toes. To smell it and feel it and just be with it. To be with him.
Sometimes, it hits me harder than usual to remember that as Brendan Bjorn’s carer, I too always have to stop where the boardwalk ends.
I let the tears fall as I watched Declan be happy.
The tears of sadness turned to bittersweet tears.
We only stayed about 20 minutes. The lack of social distancing while people walked past Brendan Bjorn was more than I could handle. As we drove back home, I thought about the requirement for the most vulnerable in society to be the ones to isolate away from the public. And then this morning on Twitter, reading comments on something I had posted, I thought about it again.
It’s now dawned on me that the right to enjoy being outside, to go to the beach and feel the ocean mist on your face, to go to the park and sit in the grass having a picnic with friends, is a privilege given to only some in society: Those who aren’t vulnerable.
Why should the vulnerable always be the ones to hide away?
Does my 15-year old son not have the same right to enjoy the ocean as other teenagers?
What if I said that maybe he and other children with life-limiting conditions should actually have more of a right to see the ocean and be able to enjoy the outdoors?
It’s the majority who always have the rights. The minority in society are often an after-thought. Disability is no different in that regard, is it?
It’s heartbreaking that my son always has to stop where the boardwalk ends.
I am the mother to 2 amazing boys: Declan who is 12 and Brendan Bjorn who is 15. Brendan Bjorn was born with severe brain damage as a result of congenital CMV (cytomegalovirus) which has left him profoundly disabled, medically fragile and with a life-limiting condition. I write about our journey together and I advocate for Carer’s Rights and Disability Rights. I am a Co-founder of Profound Ireland.