I got a text from my sister.
“Well I failed my fragile x test too”
With that, the scab that had been healing for six weeks was ripped open again. I was doing so well, and this knocked me down. I knew the facts. I knew it was very likely that at least one of my sisters was also a carrier. But the confirmation hit me hard.
The conversation went on all day as it tends to when we have a crisis. Texts infused with philosophy, advice, speculation, dark humor, sarcasm, tension. A new kind of tension. A complicated caution in our words to each other. We share this burden, but we don’t.
I already have my family, my son with Fragile X. Before I knew, I became a mother of two. Before I knew, I decided two was enough. Before we knew, my husband and I made it permanent. She, on the other hand, had just decided she wanted children. She doesn’t want one like mine. But that is her story…
I knew I wouldn’t be alone in this. I knew there would be others in my huge family. I was the first to know. I am encouraging everyone else to get testing. But in a way, it’s hypocritical. Because I am glad I didn’t know. I didn’t have to agonize over family planning decisions. I don’t regret my children one bit. Had I known, they might not be here. Yet, I think everyone else needs to make informed decisions. Why do I feel that way? Is it a betrayal to my son?
The day after we received our diagnosis, six weeks ago, my sister posed this question, “To ask a question that’s impossible to answer now… If you had known would you have had kids?” She answered her own question as she was asking.
I don’t know what is right. I can’t decide for anybody else. I can’t even decide for myself. I didn’t have to. And I may not be ready to be part of those debates. I got lucky, or unlucky, depending on who you ask.
I never wanted this burden, and I certainly don’t want to share it with my sisters. Yesterday gave me the realization that I am still very raw under the surface. As each one of them gets their test results, I will be devastated all over again. If they are carriers, I will hurt. If they are not carriers, I will hurt. If they choose not to have children my heart will ache for what might have been. When they have children that are not affected, I will hurt. If they are affected, my heart will break too.
Oh, it is complicated what knowing can do.