EDIT: thank you all for the kind and thoughtful responses. Grateful to have this community to help me navigate through this. ❤️🩹
TW: grey diagnosis, disability, grief/shame
This is long, but I’ve been sitting with something that I think many of us who TFMR for a “grey” diagnosis carry quietly: the shame of not being the martyr.
Our son had spina bifida myelomeningocele + Chiari II + enlarged ventricles. It wasn’t black and white. It wasn’t a fatal diagnosis. It was one of those horrible in-between diagnoses where both choices are valid and both are made from love. And I think that’s part of what makes TFMR in these cases so isolating. There’s this unspoken hierarchy of grief where continuing the pregnancy is seen as the more selfless, loving, noble choice… and terminating is the thing people judge quietly (or even loudly), even when it was also done out of so much love.
That part has messed with me more than I expected.
Since my Tfmr in December, I’ve had the thought so many times: am I even fit to be a mother? Because isn’t motherhood supposed to mean showing up no matter what? Enduring anything? Sacrificing everything?
But when I think about it… I did. I just didn’t do it in the version of motherhood people are most comfortable praising. I wasn’t willing to roll the dice on my son’s suffering just so I could feel like I had done the “brave” thing (not saying that this is why people do it, every parent makes their decision out of love). I wasn’t willing to choose the version that looked more noble from the outside if, deep down, I truly believed it could mean more pain for him.
I don’t think that makes me cold… It doesn’t mean I love him less. It means I was put in a horrible position and had to make the hardest decision of my life the best way I knew how: as his mother.
Also, this part is a rant: I’m so sick and tired of the way TFMR, especially for grey diagnoses, gets framed like the “easy way out.” There was nothing easy about any of this! There was nothing casual about choosing between two painful, loving options and having to live with the weight of whichever one you chose!
And I’m especially tired of the ridiculous and absurd comparisons I see online and on social media, where people say: “If your child was born and got in a car accident and became disabled, would you kill them too?”
That comparison makes me furious because it’s so dishonest! If my child were here and something happened to him, obviously I would fight for him with everything I had. That’s not even a question!
But that is not the situation. The more honest comparison is: if you knew ahead of time that your child was heading toward pain, suffering, and lifelong medical burden, would you do everything in your power to protect them?
Some people answer that by continuing. Some people answer that by letting them go. Why is one of them the “ugly” one? The one we cannot discuss openly and that gets treated like something shameful?
It makes our healing even harder!
I love my son, I miss him, I wanted him. I would have done anything to make his life safe and easy and healthy. And when I realized I couldn’t promise him that, I made the most loving choice I was capable of making for him.
I know not everyone will agree with that. But I also know I did not make this choice because I didn’t love him enough.
I made it because I did.