Grace doesn’t like when I tell this story. She especially doesn’t like it when I tell the story to someone she likes. But everyone wants to know – how did we figure out that she can’t feel pain?
When Grace was about 16 months old, she came home from daycare one day with half her thumbnail missing (top half, right thumb). I called her daycare lady, who had no idea what had happened. She didn’t think it could have happened at her house, since Grace hadn’t cried or anything. I didn’t think it had happened at home, since Grace hadn’t cried or anything. Well, the next day, about a third of what was remaining on her thumbnail was gone (the left third). The following day, a little more disappeared. We kept the nail covered for a long time after that and it eventually healed.
Then, she got a bad cut in the crease of a finger. Then, she lost another fingernail. Then, she had a circular wound on the tip of a different finger. And another. And another. We had no idea how she was getting these wounds, what could possibly be causing them. No one ever heard her cry when it happened, and it was before we learned to follow the trail of blood.
On the day before Easter, we gave the kids a bath at night and put them straight to bed. We got up early and went to Easter mass. While we were sitting in the church, I noticed a weird brick colored stain on Gracie’s new white cardigan. And then I noticed a brand new wound on her finger – it was the index finger on her right hand, and she had a cut about 1/4 of the way through the finger on the crease. The wound hadn’t been there when she went to bed, and she wasn’t around anything sharp that morning – we got up and immediately got dressed and went to church, and anyway it’s not like we were letting our 18 month old play with anything sharp. At that point, we figured out that the only thing sharp enough to cause that kind of damage was her teeth – her sharp little baby teeth.
We still didn’t put it together that she couldn’t feel pain, even after we realized the wounds were self-inflicted. It was when we were explaining the situation to her physical therapist and she (the PT) asked us, “Do you think she can feel pain?” that a light bulb clicked on. Not at first – of course, at first, the answer was, “Well, I *think* so, I mean she’s always been tough but everyone feels pain, right?” It was after a while, after thinking about all the times she should have cried and didn’t and all the unexplained finger wounds, that I realized her PT was right. THAT was a shock!
The index finger wound got infected, and I took Grace to her pediatrician. I will never forget that conversation with Grace’s doctor – I was so nervous that she wouldn’t believe me, that she might even think we were hurting our daughter. (It turns out that many parents of children who don’t feel pain are falsely reported to CPS so my fears were not unfounded.) Her doctor listened to me, stared at Grace’s finger for a second, and then got her boss and a needle. While the one doctor distracted Gracie, the other poked her with the needle, even drawing blood. Grace didn’t react to any of it. She had no idea about the needle – she was having fun playing with the doctor’s keys.
I left that office stunned, suddenly facing a future that was scary and unknown and hardly could even be real.