Many of the days following Xavier’s death are a blur. Others, I remember with clarity. I think it was a month or so after we had said good-bye and I was playing in the park with Isaac. It was quiet. A school day. We had the swing set to ourselves before a group of young adults arrived.
They were accompanied by two carers and it was clear that these were kids with special needs. Amongst them, a girl around fifteen who would never reach a mental age beyond about three. A boy, with no control over his body, all limbs like fourteen year old boys are.
It was the second time in as many weeks that I had encountered such a group. It felt like the universe was trying to tell me something.
The carers approached me nervously and asked if I minded them being there. Apparently there had been issues in the past. Of course we didn’t mind I said. And I smiled and tried to convey all the things: support, acceptance, understanding (although how could I possibly understand). And I felt the other things: relief my living child was healthy and able-bodied, pity, embarrassment at my own discomfort, curiosity about whether this was ever Xavier’s fate. Heart-broken to see the fifteen year old girl squeal in utter delight when pushed on a swing designed for a much younger child. Helpless as the teenaged boy tried to engage me in conversation when I couldn’t understand what he was trying to say. He said something. I said something back and hoped it was right. This continued for a little while and I started chatting to one of the carers.
They offered relief for the parents of the kids – a few hours for those parents to regroup and rest. And as I watched these wonderful carers with their kids, I couldn’t help but wonder, if Xavier’s story had been different, if he had lived but with a disability, would I have coped? Would I have been strong enough? It is a ridiculous question. If someone had told me that I would not only survive but eventually thrive after the death of one of my children, I would not have believed them. We do what we do, not because we are strong but because strength is the only choice available to us.
If Xavier had lived but with severe brain damage, I would have found the strength just as I found the strength to cope with his death. I remember holding his hand before receiving his fatal diagnosis. He was tied up in machines and his soul was already passing, but I did not know it then. I whispered to him, I know you’ll be a little different. But that’s okay. I will love you no matter what and we will make it work. I still clung to the idea that he could be saved, maybe not all of him, but some integral part of him would remain with us. I would have done anything for that to be the case. But that was not his story.