Xervier's first 'words'

We must be the luckiest parents alive.

I'm sure lots of parents feel that way but when our son, Xervier, was born with Down's syndrome it wasn't how we felt at the time.

With the news of Xervier's condition we experienced the unique coexistence of two apparently contradictory emotions. Somehow we found ourselves holding in our hearts both joy at the birth of our son and grief at the loss of our son. It took a while to figure out which son we had lost.

We slowly realised that our grief was for the loss of the son we had imagined, the son we had dreamed of. We grieved for the loss of the future we had imagined for him. We grieved for his loss. What we came to realise was that the things we had ‘lost' were the products of ego. Not egotistical ego. Not competitive ego. Simply, ego that is about self rather than selflessness. People had always told me that through parenthood life taught you about selflessness. As we came to this realisation and began to let go of the "us" in our son's life we found ourselves wishing that life would not be so ham-fisted with its "lessons."

Over the following months we came to see our boy as himself rather than as a diagnosis or a proscribed future. As we have come to know Xervier he has brought limitless joy to our hearts. At times we have to remind ourselves that he has a disability. Certainly the joys of parenthood cannot have been less than for any other couple. We have watched him grow, develop and blossom into the very centre of our universe.

This parental pride (but hopefully not ego) has been most apparent to us with Xervier's first true "word." Xervier is just under 14 months old. He has been saying, "Da Da" for ages but it is a kind of multi-purpose expression around his father. He has also been waving goodbye for some time and that is a word of sorts too, but our true pride has been with his recent use of the word "milk." Or at least the SIGN for the word milk: his little fist opening and closing as if milking a cow. He uses it in context, as a request and only when he is hungry. We have been glowing about it for days now. He's our little genius (just like every other parent's child when they speak their first word).

We wish we could give this joy the expression it deserves. We want to share it, especially when we see parents of a newborn child with Down's syndrome. They always have this brave, shell-shocked expression and you find yourself longing to take them aside and reassure them that they have been given a rare and beautiful gift. That their child will bring them joy and pride in abundance, beyond their wildest dreams for that unborn "normal" child they are grieving for. But we find ourselves holding back for fear of overwhelming them. A brief word of welcome and congratulations is probably enough. These things have a time and a rhythm of their own. We have to be content in the knowledge that with a little encouragement and support they will take their own path toward the realisation of their dreams.

Paul & Sabine Doney

PS. Since this was written Xervier has come along in leaps and bounds. See him in action.