Her sense of touch

 Mira loves her Vest. (I can't remember if I've written about this yet - it's a device that we use 1-4 times a day that wraps around her, then inflates, and then rapidly pulses air around her chest and back, helping to loosen gunk in her lungs, and imitate the benefits of coughing.) Tonight when Matt put it on her and hadn't even inflated it yet, we saw this sweet little contented smile on her face. She often has this look of mild pleasure during her vestings, and we think she is learning to anticipate what's coming when she feels us put the Vest on her.

You see, we are becoming more and more convinced that touch is Mira's only way of experiencing the world.

When we first met her last September, her eyes, when they were open, were in constant motion, making large circles, and never really resting on anything for more than a moment. Her pupils never dilate; they are always tiny little black points in the center of those golden brown eyes. Since coming home, her gaze has become much more steady. Incredibly much so. But we do not ever get any feedback that suggest she's actually tracking anything, or actually seeing anything with those beautiful eyes. She is scheduled for a vision test later this summer. We'll see what we learn at that time.

When she was in the hospital a month ago for her first pneumonia stay, they performed an ABR (auditory brainstem response) test that had been previously scheduled, and thankfully they were able to do anyway while she was inpatient. The results show that she is profoundly deaf. There was absolutely no response in her brain from any of the vibration stimulations they gave to her ear, not even when they bypassed the middle ear and went directly on the inner ear. Nothing. Nothing at all.

We're still not quite sure what to do with that information. On the one hand, it would explain why she never ever startles, or gives any response whatsoever to any sort of loud, sudden noise that happens around here. And let me tell you, our house is FULL of loud, sudden noises. But on the other hand, there are also times when, even after learning what we did from the ABR, she seems to be aware of us speaking. We're undecided.

But one thing is very possible, and that is that our Mira's only way to have any input from the world outside of her is through touch. I've repeated it many times, but we were told by her Bulgarian doctor that touching her would cause her to have seizures, and that we ought to be very judicious about when and how often we did so.

Oh, baby girl! To have been robbed for so many years of your only way of experiencing your world! To have lived in a constant state of fearful anticipation of the next thing that would be done to you, knowing it would come without any of the preliminary warnings of seeing or hearing someone coming. No wonder she was always so tense when we met her. In order to survive, she had to be constantly braced and ready for whatever would come next, and since the staff had been told that touching her caused her to have seizures, those times would have been as far between as they could, and performed as quickly as possible. (Not that they went out of their way to use touch in a beneficial way with any of the children as far as we know, but to know that they felt medically justified in denying that to Tsvetomira creates a pit in my stomach that can take my breath away.)

Knowing these things about her is tough, but also enables us to be more mindful of the way we use touch - regularly, frequently, intentionally, knowing that her sense of touch is our way to get inside her world. She is an incredible girl to have survived for so long in the utter solitude that was her life, and for her to still be able to learn so rapidly to trust and enjoy the kind of touch that a loving family gives is amazing.