The first time I saw her she was crouched down outside of her house which was comprised of a short structure no more than 7 or 8 feet high with the outside dimensions of 10 ft. by 10 ft. at the most. It was made of a combination of “reclaimed” brick, scrap wood and pieces of tin. She was crouching in the dirt outside the door, playing a game that seemed to somewhat resemble jacks but was played with rocks and no ball. As we got closer I could see that her feet, legs, hands and arms were covered in a thin layer of the ubiquitous red African earth. I’d been told by several missionaries while I was there that Africans don’t see dirt. They don’t comment on it or fret about it. It is just there, like oxygen, which even after my brief stay, I realized is the wisest, most sensible course of action, because there is simply no avoiding it.
She stood to look at me, and immediately I recognized those perfectly proportioned slightly diminutive features, and beautiful almond-shaped eyes of someone who has Down syndrome. She was wearing what appeared to be a man’s large white oxford buttondown shirt with no sleeves. After looking at me for a moment or two, her features became surprised and she ran quickly into the house and slid the makeshift door closed. The village orphan worker chuckled and tried to say carefully, ” I am not sure she has seen many…” and then he paused, perhaps not quite sure how he should finish the sentence, so I pointed to my ballcap and said “Red Sox fans?”, and he said, “something like that!”, and laughed.
But even before we could get to the door and call out our presence, the door was being slid open, and out stepped a woman who was wearing what looked to be the exact same outfit we had seen on the girl only moments before – the well-worn sleeveless white man’s buttondown shirt! She was pulling gently behind her the girl we had seen outside the door, who was now dressed in a beautiful short-sleeved blue dress with ruffles and pleats around the skirt. Her face, hands, and feet had also all been wiped clean (and all within the time it took us to walk the the forty or fifty feet to their door!), so, it may be that Africans don’t recognize dirt, but evidently mothers still do!
We said our introductions, and asked if we could sit for a moment. “I work with children who are special, like yours, and I’d like to ask you some questions.” She was cautious about her response, but agreed, and went inside to bring out two makeshift chairs. Since she appeared a little suspicious (perhaps… she was NOT a Red Sox fan?), I pulled out the picture of my family as I had now done repeatedly and had always noticed an immediate easing of tensions and increasing of openness once they saw I was a father of three adoptive children with intellectual disabilities. On this occasion, however, it seemed to produce the opposite effect. She gripped the picture with two hands, then began to look carefully from the picture of my girls to her own daughter, back and forth, back and forth, until tears welled up in her eyes.
Being a man not peculiarly perceptive when it comes to emotions (is that statement redundant?), I forged ahead with my questions hoping that conversation would somehow distract her from whatever painful feelings the picture had produced. So began my interview, a series of rapid-fire questions beginning with her health during pregnancy, childbirth, developmental milestones, etc. The purpose of each is to help give me both an overarching picture of her daughter’s development but also help identify any potential concerns or red flags. At some point in the interview, however, I finally lifted my eyes from my clipboard, where I was furiously writing her responses, and I saw the anguish on this mother’s face, and her tears that could no longer be held back.
Before I could even ask what was so troubling her, she blurted out a question, half speech/ half sob and completely disconnected from anything we had just been discussing, “How fast can your children read?!“ I was so taken aback by this emotionally packed nonsequitor that I think I simply looked down meaningfully and mumbled something intentionally incoherent (I’ve not been married 20 years for nothing!).
Quieter, but still in between sobs she confessed, “my daughter reads slowly, much slower than other children… I think it’s my fault.” The picture was getting clearer. I asked, timidly, “what does she read?” And her sobs halted long enough for her to look up at at me with a face that showed she thought my question was utterly ridiculous (I have always been amazed that all the women I have ever known all have the remarkable ability to pause whatever deep emotional current they were overcome by in order to declare how ridiculous I am), “Books!” she exclaimed, “books, of course!”
Now it was my turn to give a look of incredulity. “Chapter books?” I asked, trying to hide the suspicion in my voice. “Yes”, she said with exasperation, “of course the books have chapters”. I waited a moment, for she was trying to catch her breath and wipe her eyes. When she finally looked up at me again, I held her eyes for a moment and then spoke intentionally very slowly so this could seep into her heart, “my children can’t read chapter books! They know some words, and all their letters, but my children can’t read like your daughter. “ Immediately, her hands went up to cover her face. The tears had started again, but there was something else there in her eyes, something that looked a lot like someone trying desperately to suppress laughter. The fight did not last long, for it was within less than a minute that the laughter won, and all she could do was try to stifle the volume with her hand and attempt to stay upright on her rickety chair.
For an instant, but thankfully, I don’t think my face betrayed me, I was honestly offended that she would laugh at my childrens’ inability to read at the level her child could. But it was that thought, or to be more accurate, the emotion with which I felt that thought, that finally made me see what I had been missing all along. She saw my girls in the photograph dressed in their pretty dresses, so similar in features to her own and she assumed that her lack in economics, opportunity and education would reveal themselves when I compared her girl to mine. Therefore each question of my interview seemed to her to only establish more completely how stunted her daughter must be; born in a hut, no early diagnosis, no physical therapy, no occupational therapy, no speech therapy, had never seen a developmental pediatrician, never seen a pediatrician at all, no, no, no. And although I never thought this even for a moment with her, I imagine she added to that list of “no’s”, “has a good mother” – NO!
But for the very reason that she is a good parent, she felt that all her daughter’s lacks or weaknesses were her fault. Which was why her daughter not being able to read as fast as other children weighed on her so greatly, it was just one more NO. The “no” that broke her mothers heart. Not coincidently then, it was my parental “no” that brought her consolation. For all our girls’ many advantages, for all their “yes’s”, we too, had our “no’s”. I realized this and it was easy to laugh with her, rejoicing over her daughter’s “yes”.
Something special happened after that. We talked at some length but the interview was over. We were now just two people desperately wanting to be good parents to the children we absolutely adored, who in God’s providence all happened to have Down syndrome.
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.