The Inner Workings of a Star

milkywayI have known Katelin from long before she was born. Through ultrasound, I saw her when she was just a little bean and later, when she looked more like the little girl I would soon hold in my arms, I saw her hiccup, suck her thumb and got to say “oh, I felt that kick, right here!” And then much later, because of Rett syndrome, I would see more.

When she fell out of a swing around 5 and broke her arm I got a copy of her x-ray. I could see, as if her skin and muscle had been zapped away, the obvious, that there was something not right. So much is obvious even to an untrained eye when you strip it down to the very basics. I’ve gotten pretty good at x-rays.

I’ve seen x-rays of her abdomen and chest, all the things you learn about in school with fake skeletons or better yet, those 3-d puzzles of sorts of just the thoracic cavity,  you know like you see in sit-coms that invariably get dropped in the doctor’s office. And, I find it a bit surreal, there in living gray is my child’s intestines, her stomach, her heart. I’ve seen her kidneys, close up, in incredible detail, as I’ve run through the disc of a CT scan. I’ve seen her brain in the same way. Picture by picture I have seen the convoluted miracle that is her mind. Pouring over each image, I have crossed reference any unsymmetrical difference with normal scans until I was assured that it was in the range of normal. If I get really stuck, I call the radiologist and ask him to explain what I see. The response has certainly run the gamut of irritation to impressed, lol. If I want a  compete answer of a troublesome thing I see…I have a source who is as kind as can be, because in real life he could charge me a fortune for the time he’s given to me over the years.

Of course, my inexperienced eye falls short of what the radiologists can see. Even though I know where her arm was broken, I’m hard pressed to see the evidence of it now, whereas a radiologist can spot it right away.

When it comes to EEG’s, I basically go, that looks cool. Yet, someone can take all those jumping colored lines and make sense of them, this amazes me. I can look at an EKG and point out obvious irregularities, but then I see the cardiologist pull out this little measuring tuning fork looking for the disorder known as Prolonged QT syndrome, that often lurks in the hearts of our children. The devil is definitely in the details.

And once I got to compare her pre-born heart beat, which had looked like a twinkling star, to the one that lives within her now. Of all the things I’ve seen within her body, this was the one that made me cry for the sheer miraculousness of it all. Her beating heart, there are no words for how that felt, only tears. I sometimes think on the doctors that do open heart surgery and wonder if, after so many, they lose the sense of what a miracle they are holding in their hands or if they are always just a bit reverential before this incredible natural machine.

Yesterday, as many times before, I poured over pictures of her spine. Sometimes, when I focus on just a single frame, looking, comparing, it becomes a puzzle, one that is possibly complete and right or perhaps a piece is overlapping another and not quite in its spot. Yet, when I look at the whole picture of her back, I can see in acute detail, even with my untrained eye that something is definitely not right. I can see how it affects not only the shape of her, but the way her muscle and fat in her back have layered unevenly. I can see corners that simply look like slopes from the outside. That part makes me feel sad, for want of a better word.

Yet, when I think on the experience of having seen, on a level denied most parents, the inner workings of my child’s body, I am not sad. I’m incredulous. I marvel at the sheer beauty and intricateness of what I’ve seen. My daughter is a sum of all her parts, not just Rett syndrome, and in that, she is a thing of beauty. Imagine this- billions of years ago the Big Bang set forth a ripple effect that billions of years later made the nearly impossible occur- it made my daughter’s life out of star dust. And I sometimes think on her infinitesimally small heartbeat, really that of all my children, and believe that it twinkled like that as a reminder that we are all made of stars. I want her to feel better, but nothing Man can do will make her more than what she already is, a star amongst the cosmos.

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This entry was posted in Big Bang, Dr. Robert Chesanow, kyphosis, Radiology in Rett syndrome, Uncategorized and tagged , , , , , , , , , , . Bookmark the permalink.

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