Tuesday, March 23, 2010

Why us?

It's a question that torments many parents of disabled children. What cruel fate or wrathful God caused us to have a child with severe mental or physical disability? When you're expecting a child, its a natural tendency to dream about all the wonderful experiences you'll share as your little boy or girl grows up. You make plans, big exciting plans, about everything the future will bring. Once your child is diagnosed with a physical or mental disability, however, those dreams tend to shatter like so much broken glass, leaving you to pick through the shards. And you're left to wonder, how could this be happening to us?

 I believe the human mind is designed to look for causality, reasons to explain the inexplicable. We like to imagine there is some semblance of purpose to the universe. When we first found out that our daughter suffered a developmental disorder, it started a search for answers that would span years. We met with every expert we could find -- neurologists, geneticists, pediatricians, neuro-surgeons -- anyone who might be able to explain why our daughter was born like this. Why had her brain tissue failed to grow normally? We went for innumerable brain scans, MRIs, blood tests, mitochondrial tests, more than I can fully recall, hoping to find the reason behind this tragic fate that had befallen our family. Perhaps we could find a genetic syndrome or indicator that would explain my daughter's condition.

 I was raised in a traditional Jewish family in a fairly observant household. As a child, I was taught how God made things happen for a reason, that behind every creation and occurrence there was intent. A plan that the Master of the Universe had for this world and its inhabitants. I'd learned how the righteous were rewarded and the wicked punished. During the High Holidays, the liturgy urged us to recall our misdeeds and repent, lest we be inscribed for misfortune or worse. On the basis of this spiritual worldview, I could only conclude that the birth of a severely disabled child was somehow my fault. I had sinned, clearly, committed some offense, to cause this fate to befall me. The birth of my disabled child was my punishment. But why? Try as I might, I couldn't imagine what crime I'd committed to warrant this agony. Over time, I grew very angry at God and distanced myself from my faith and any spirituality for a long time.

At some point during our quest for answers, I came upon a book titled "Why Bad Things Happen to Good People" by Harold Kushner. The author was a rabbi whose child had died of a terminal illness. This tragedy had caused Kushner to wonder why a good and loving God would allow such suffering to be present in the world. In particular, why such suffering had been visited upon him and his family, when he had dedicated his life to the service of others. His exploration of these questions and conclusions made a real difference in my life. Kushner proposes that God doesn't cause such tragedies (and certainly wouldn't cause innocents to suffer) but neither can He prevent them. What faith in God can do is provide the strength to cope with life's misfortunes by assuring us that were not alone in our pain.

This simple realization was an overwhelming relief for me. It truly shifted my thinking about our situation and our daughter. In retrospect, I saw my feelings about our daughter's condition as simplistic and unfounded. What God could have caused a child to suffer for her father's actions? It was nonsense. In place of these feelings, I came to realize that there is an element of entropy, disorder, chaos in the world. Some things happen for no good reason at all. Cells divide, or don't. DNA strands may or may not have complete chromosomes. Shit, as they say, happens. But I could take solace in knowing that I wasn't alone in my grief, and that a Power greater than myself would and could bolster my spirit. It did, and made all the difference in the world to me.

I could not control the circumstances or reasons behind my daughters condition. Our years of searching for answers were ultimately fruitless, as no particular cause or syndrome could be isolated. The best our doctors could tell us was that Eden's condition was the result of a random mutation, but that in the future, a syndrome might be identified. Today, now that the human genome has been mapped, we'll probably continue some genetic testing, perhaps to determine if she was subject to chromosomal deletion.

What I've also come to believe is that children like my daughter can teach us a lot, if we let them. They can lift our spirits by helping us appreciate the simple things in this world, to view the world through their eyes. They can teach us patience, by helping us to appreciate how difficult what we take for granted is for them. But perhaps most importantly, they can teach us the pureness of love. When I look in my daughter's eyes and in her smile, and see the love that she cannot express in words, I can see what God intended in her creation. And I am grateful, always.


  1. We commend your blog and feel somewhat embarrassed at our own natterings about cereal and semi-colons. Your thoughtful explorations of your own situation will be a valuable source of solace to others in similar situations.

  2. I applaud you for your kindness of spirit and openness, as well as your eloquent words. Your daughter is blessed to have you as a father.

  3. Hey, just got here. It's true, dads don't get much representation. At my son's SE private school in Manhattan I'm generally one of the few dads who show up. Our path was a bit different as my son was very sick initially; I promised myself that I would try never to miss anything if he survived. He did, and he's thriving, and I'll be damned if I miss even the smallest class party, if at all possible.