When Grace was little, we used to wonder what she could and could not feel. Doctors would ask me about her sensation and I would give my best guess, but sometimes I simply could not answer. We would discuss how she’d be able to tell us when she was older.

Grace is older now—she’s 8 years old. And lately, she and I have had some fascinating talks about what she can and cannot feel.

It all started one night when I was putting her to bed. I was patting her gently on the arm in a motherly fashion. She moved, and I asked her if she could feel me patting her. She said no, but she could feel the warm spot where my hand was. That made sense—we have known for a while that she can feel hot and cold. But she verified that she cannot feel light touch, which is really too bad, because so much of parenting is showing affection through gentle touches.

A few days or weeks later, again at bedtime, we were talking about what pain Grace can and cannot feel. She encouraged me to ask her anything—she wanted to talk about it. “Is there anything you want to know, Mom?” she sweetly asked. And of course, there were many things I wanted to know.

When Gracie broke her wrist a couple years ago, she said that it hurt. During our conversation, I asked her, “What did it feel like when you broke your wrist?” She replied that it felt like needles, while pointing to the exact spots on her arm where the fractures were. “But you can’t feel needles—you never react when the IVs go in,” I remarked. She said that no, she can’t feel the pokes, but she can feel the IVs when they are in her arm. “And they HURT, Mom!” she averred. This is fascinating, because she never acts like they hurt. She typically accidentally removes several IVs per hospital stay just by getting them caught on things and pulling away. I know that when I had an IV during Elliot’s birth, I was extremely conscious of how I was moving so as to not accidentally bend or pull the IV. Even during the most intense contractions, I would try not to bend my wrist because the IV would hurt. It’s hard to imagine that IVs hurt her in the way they hurt me, simply because of how she reacts to them.

She also said that she feels random needles in her feet (her feet have traditionally had the least sensation of any part of her body). I told her that this was fascinating, because it sounded like a typical peripheral neuropathy—her nerves were misfiring, as is common with people with peripheral neuropathies. Now it was her turn to be fascinated—she was shocked that it was normal for her to feel these random pains. I explained that many times, people who have no trouble feeling things throughout their lives develop peripheral neuropathies as they get older. These people report feeling pins and needles in their extremities, particularly their legs and feet, so what Grace was feeling was actually normal for someone with a peripheral neuropathy. She was fascinated and intrigued. I think she is as curious about what “normal” people feel as I am about what she feels.

For the past several months, Grace has been biting her fingers mercilessly. She averages 7-8 bandaged fingers per day, and I only bandage the ones with open wounds now because she has to be able to use some of her fingers for touch screens and iPads at school. During our conversation, I asked her what she feels when she bites her fingers. Grace said that she can’t feel it at all. In fact, she often does not know she’s doing it. She said that’s why she sometimes says that she didn’t bite her fingers, even when it’s obvious that she did (like when she has blood on her mouth and face)—she did not know she was doing it, so she feels like she’s being honest by saying she didn’t do it. Although this is fascinating, it is also frustrating. How do we get this kid to stop doing something she doesn’t know she’s doing? How do you break a habit so ingrained it is no longer noticeable? How can she protect a body part that doesn’t even exist to her brain? How can we, as parents, help her through this? (If anyone reading this has suggestions, please share! We are desperate to help her.)

We have had a few other conversations about sensation since those nights. Grace is eager to describe her experience, and asks me often if I want to talk about pain. During one of our conversations, I told her that when most people get diarrhea, it’s very painful. It makes our stomachs cramp and can be excruciating. She said that she gets a stomachache when she has diarrhea also, but from what she described, I don’t think she feels it as much as is typical. I know from watching her through the years that she does not seem to feel the painful cramping, which is frankly a blessing because she is plagued by chronic gastrointestinal distress.

I also asked her about a time when she was 3 and she pulled out her teeth. She said it hurt, but her memory of this event is clearly fuzzy because she got several of the details wrong. She did remember thinking that she wanted Tooth Fairy money, and feeling disappointed when the Tooth Fairy refused to pay for teeth that were prematurely extracted. (Hey, the Tooth Fairy’s gotta protect her somehow! If that’s what it takes to keep her teeth intact, it’s worth it.)

As she gets older, I anticipate having several more conversations with Grace about her sensation and pain perception. It is intriguing to me, and cathartic to her, to have these discussions. Hopefully, by talking more about what she can feel, we can help increase her awareness of her own body. And maybe, just maybe, someday she will quit biting her fingers. One can only hope.