An innocent enough question. As adults it’s so common to meet someone and try to get to know them through questions like “So what part of town do you live in?” “What do you do for a living?” and “How many kids do you have?”
For most people these questions are just small talk…a quick answer that doesn’t take much effort to formulate. But for others of us there’s a lot to unpack. These answers aren’t simple for us and it often takes an emotional toll to come up with just the right response.
In my twenties I tried for many years to get pregnant and had no luck, even with fertility treatments. Eventually, my little miracle boy was born. A little more than a year later, after a diagnostic odyssey, he would be diagnosed with Fragile X Syndrome. Many genetic disorders are “random” as in, a de-novo mutation, but not X linked disorders. And I’m guessing if you’re reading this blog post you’re likely impacted in some way by an X linked disorder. These X linked disorders impact not just the affected individual, but many family members. As soon as I knew which genetic disorder my son had, I also knew that it could happen in future pregnancies…in fact it is a 50/50 chance of it happening to any future pregnancies I have. This revelation certainly throws a curveball into family planning for those of us who carry X linked disorders. There are many discussions to be had and options to weigh. It all quickly becomes a highly personal decision fraught with moral judgements.
So when someone I recently met at the gym innocently asked “So you have a 4 year old. Are you guys gonna have more kids?” I had to quickly assess the situation. How much time do we have here to explain this? How much do I want to disclose to this person? Do I think this person is genuinely interested or will their eyes glaze over when I start talking about inheritance patterns of genetic disorders? Sometimes I answer with a simple “we’ll see!” and change the subject. And other times I try my best to succinctly explain that my 4 year old has a disability that I passed on to him and could pass on to a future child unless I do IVF with PGT testing, or adopt, or use donor embryos. If the person is really lucky they might even get a lesson on how females who have the Fragile X Syndrome premutation often have fertility struggles and go through menopause early, so there’s actually no guarantee that I’d be able to get pregnant even if I tried.
That’s why Remember The Girls is such a wonderful group. We get it. You don’t have to explain the nuances to us. We share the same difficult family planning decisions and we’re here to support each other.