When You Don't Know

I had an interesting conversation with some of my coworkers at lunch a few weeks ago. Of course we talked about our kids. My pregnancy came into the conversation and so did transitioning Conor to his new room. Then the topic of potty training came up.

"Have you started?"

How do I answer that? Not everyone at the table knows about Conor and Fragile X. Should they know? Do those who "know" really know? I'm fine telling them but do I really want to bring the mood down? Do I want the looks of pity shot my way? No. Not today. Today is complicated enough.

"No, we haven't started potty training yet. We'll wait until after the adjustment period with the new baby," I say casually.

Potty training scares me to no end. It feels like one of the more significant hurdles we will face. What we know as a hard road ahead of us seems easier to digest without the thought of changing diapers on a 19 year old. I want Conor to be successful. Reality is uglier than a sticker chart and a box of prizes though. Many kids with Fragile X don't successfully potty train until they are 10, 11, 12...and even that can be rare. Odds are against us on this one and I'm just not ready to go there.

I'm certainly not throwing in the towel and I absolutely think that Conor can do it. It's just a hard conversation to have over a casual work lunch. I feel the sting in my heart every time I'm forced to think about how it is different for us now. I really wish it didn't have to be so different and that I didn't feel the need to explain our situation.

There is a waitress at a restaurant that we frequent in our neighborhood. She has a daughter a few months older than Conor and a newborn son. She sees Conor nearly every week. I often wonder if we should tell her. Does she notice that Conor is different? Does she wonder if we know that something is off?

There is a boy that lives on our block who is also in Conor’s class at school. We exchange pleasantries with his parents at drop off and pick up and run into them at the park where both of the boys play. Do they notice that something is wrong? How do we bring it up without making them feel uncomfortable? Or worse...without causing them to pull away?

Fragile X doesn't always make itself obvious at first glance. There are physical characteristics associated with Fragile X that may become more prominent over the next decade or so, but for the most part, Conor will look “normal.” In some respects I worry that this will make things harder for him. People will be surprised by how he acts and what he is and isn’t able to do. I know that people will start to wonder what is wrong with Conor. I know they will look at me with pity and it breaks my heart. I am so proud of Conor and I hope that is always clear. I want to tell people about Fragile X so they understand. But who do you tell? How much do you tell them? When do you tell them? It’s really hard to know what to say when you just don’t know.

XX, Bev