The ones who dance to a different kind of music

the round pegsMany 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.

Within my circle of family and friends, there are children with special needs. Some are immediately apparent and others are not. At times I am not sure what is more difficult: the visible or invisible differences. There are varying degrees of help needed and help offered. I see the parents of these gorgeous kids go into bat every day.  They advocate for their children, champion them, raise awareness and challenge pre-conceptions. I see them worry about their child that doesn’t quite fit into the societal norm, the round pegs and the square holes. I see them worry about their other children and whether they are doing the right thing by them. I see them and I am in awe but they say they are only doing the best they can – and what else can they do? They say they would not have chosen this path if it were offered them, but now they cannot imagine a different way.
I remember being in the thick of grief of wishing for a day off.  I didn’t want the grief to go away, it was too much a tie to Xavier. But I just wanted a day, one day, when I wasn’t a bereaved parent. One day without the weight.  One day of freedom. I imagine that parents of kids with special needs might feel that at times.  I know that they love their kids with heart and soul and mind but they receive little respite from the worry, the struggle, the pressure.  I thank those carers I met in the park for the gift they give to parents. Those moments to breathe.
And for those parents of children who stray from the well-trodden paths, who dance to music I can’t hear and march to a different drum-beat, thank you for what you do.  For your love and your bravery and for making your childrens’ lives beautiful.
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