Why is my boy different from other children?
Perhaps it was due to my natural philosophical bent or my years of pastoral experience, or maybe I simply was not listening well as this desperate Zambian mother spoke to me concerning her son (that would be Holly’s guess, since wives often know their husbands don’t listen to everything they say!). Regardless of the reason, when, amidst the barrage of questions she was firing at me she asked, “Why is my boy different from other children?”, I immediately launched into an extended explanation of everything from the nature of the fallen world; to the inscrutable will of God, to the weakening of chromosomal bonds as we age.
After some minutes I concluded my expansive and nuanced “explanation”, and she thanked me, whether for what I said or merely for choosing to stop, I can’t be sure. She then looked at me very intently for quite some time and at first, I thought my insightful dialogue must have prompted some hitherto unconcieved deeper query, then I recognized the way she was looking at me was just the same way my twin girls look at me when they realize I have completely misunderstood their very simple request. So, in this way, she addressed me again with the same question but much slower and louder, “Whhhyyy..iiiss…mmmyyy…booyyy…diiifffeeerrreeennntt…ffrroommm…othhherr…chhhiildrrreennn?”
It was embarrassing to put this poor woman through such exaggerated attempts to be understood but thankfully I finally got it. Her question to me was not the meta-physical “why” but the pragmatic. Why is his speech difficult to understand? Why at sixteen is he still happy to have me tell him the same childrens’ stories over and over? Why can’t he write well or do math like other children? It was then that I realized that she did not know the very specific genetic condition that stood at the root of many of her son’s unique attributes, or in her words, “differences from other children”. So I went over to her son, and picked up his hand, and showed her the deep crease that crossed the palm, I remarked on the shortened length of his fingers and toes, I drew her attention to his handsome almond- shaped eyes with the unique fold at the inner corner, and, finally, I remarked on his adorable little ears that were set just lower than the typical ear is set. And so, I said, “your son has a genetic condition called Down syndrome, or Trisomy 21. To my surprise, the moment I said that, her son, who had been fairly quiet throughout my visit so far, proclaimed loudly, “yes, yes!”, and he smiled a huge goofy Down syndrome grin, like he had been waiting for 16 years not to be labeled, but to be understood.
Having spent so many years here in the US fighting against labels as boxes in which my children have been placed, I realized that day that sometimes a label can be the beginning of a framework to better understand someone we deeply love. Because that day, that Zambian Mother didn’t get a diagnosis for her child, but a way to begin to understand all the wonderful ways he was made.
