As I detailed in A Rare Diagnosis, most of the literature on 49,XXXXY painted a dire picture that didn’t at all match the child we knew, so we’d made an intentional decision to keep Isaac’s diagnosis in a small inner circle. We’ve only become more open about it over time. 

I remember the feelings more than the conversations themselves, when we told our families and close friends the news of Isaac’s diagnosis. When we sat down with my parents at the kitchen table, and with Todd’s parents in their living room after everyone else had left on Thanksgiving day. And many months later, the tender one-on-one conversation with my sister, who wanted to have a baby at the time, and with Todd’s sisters and their families, all sitting at the dining room table together. And finally, with Tiffany and Alan, who would become Isaac and Gillian’s godparents a few years later. 

Everyone was loving, understanding, supportive. And there was some relief in knowing they would hold Isaac’s diagnosis in confidence with us, even if the burden of day to day life and figuring it all out was still ours to bear.  

If anything, on reflection, perhaps we erred on the side of being guarded too long, doing so much to protect Isaac that we did little to advocate on behalf of his genetic disorder. I’ve often wondered if we would do it differently if we had it to do over again. Probably not, though I can’t say for sure. 

Honestly, if we had to do all of this over again, I might just throw my hands up in the air and surrender. Maybe that would have been best from the beginning, but who’s to say? Instead, we did our best to avoid falling apart entirely, and to fight our way through in the hardest of times, which were still to come. (We would need that fighting spirit when PANS arrived on the scene.)

Conflict and change

One of the hardest memories from the early days of “knowing” is the visceral conflict I felt when my mother wanted to pray for God to heal Isaac, to take the genetic disorder away. I snapped at her: “God made him this way in my belly! He’s not sick!” It was easier for me to articulate to my mother in anger than it was to accept for myself. There was nothing wrong with Isaac. We were the ones who needed prayers to change. 

To be fair, Isaac was often sick, also, and it’s a very different thing to pray for a child who is ill to be made well. Of course we didn’t want our child to suffer. But some suffering would come with the territory. And some suffering would produce necessary change–in us. 

Having a child with developmental delays would force us to contend with our biases and those of our society, values that are deeply rooted and not easily shaken, like the worth we place on education, ability, achievement and strength. These are not bad things, mind you. Todd and I had top scores in this value system. It worked for us. But when these measures become our ultimate goals, how then do we value and esteem those who are born more vulnerable?

I hear the protests, the efforts to conform, even in the mouths of fellow parents—even in my own—when we’re quick to say our child is smart despite their disability. But what about those who aren’t? What we’re really saying is, Don’t count my child out. Because we know that’s exactly what will happen in a society that values intelligence over our common humanity.

Kids (and adults) with disabilities should not have to conform in order to “count.” In many cases, they cannot conform. But how we see them, how society values them, needs to change. 

On vulnerability

Not long ago, I picked up an old volume of Christian Reflection: A Series in Faith and Ethics with the subject: “Disability” (2012). I’d set it aside but apparently never read it, because the content was entirely new to me. My main takeaway was this: Of the many things persons with disabilities have to teach us, perhaps most important is the value of vulnerability, which is all but lost in modern society.

What if vulnerability were one of our top values, right up there with education and achievement? What might we learn from observing and interacting with people who can’t help but lead from their vulnerability? How might the world be better if we risked being honest about our own vulnerabilities and celebrated imperfection and differences in our communities?

These are not questions we were asking when Isaac was a baby, of course. But the seeds were there, the fears were there, in our resistance to having a child who was different. Only now can I articulate them and hope to build a world that is better for my child, and really, for everyone.