Sarah has never had an MRI of her brain. As in never. Ever. It's not that it hasn't been suggested once or twice or three times in the past 14 years, because it has. And that's the operative word here...suggested.
And I guess, from the outside, looking in, that seems kind of crazy. Not to do an MRI. Because her constellation of issues suggests something neurological. I mean, she can't walk, talk, feed herself, put a piece of clothing on. Her left side is much more affected than her right.
When she was very young I was told many things. At age one, maybe a stroke in utero. Atypical cerebral palsy. She was diagnosed with left hemiplegia cerebral palsy at the age of 2 because everything seemed left-sided. At the age of 4 it went to spastic diplegia CP because it became clear both of her legs were affected and finally at 6, it changed to the worst case scenario-spastic quadriplegia CP because none of her extremeties worked right.
Sometime around the age of five I was told she had autistic features as well. But she would never receive an autism diagnosis because she did not have enough features of it.
The cerebral palsy diagnosis is not right either. We go to the orthopedic surgeon and wait in the waiting room with lots of children who have CP. Sarah does not fit in this group. She sticks out like a sore thumb. But we hang onto the diagnosis for insurance purposes.
Because there is nothing else to use. Nada. Zippo. She has no official diagnosis.
And so, wouldn't you think I would go running to an MRI to see if that will give us a piece of the puzzle that she is. Yes, one would think I would. I mean, I would think I would.
But I don't. My reason now is different than my reason then. And my reason then was because of this event:
When Sarah was about 2 a mom called me who had a son about the same age. She had read that I had piece of equipment for Sarah and she wanted to come see if it would be good for her little boy. I had never met her before. So one afternoon she drove over and brought her son with her. He was lovely and blond and engaging. She placed him on our carpet and he inched his way over to our front door to slowly move it back and forth. She told me that he loved doors. So sweet.
However, she had had an MRI done of his brain a few months prior and all she could focus on was what was wrong with his brain, what it was missing and what it was shaped like. It was like, when she looked at him, all she could see was his brain. It was all she talked about. It seemed that the MRI had taken away her enjoyment of her little boy. Colored it so completely. She couldn't get past it. And see him. I felt so sad for her.
When they left I knew that I did not want an MRI for Sarah. Because I did not want that to happen to me. And I knew it would, if something was found. I would lose my pure enjoyment of my girl. I knew I would and I wasn't willing to go there. Ignorance was bliss as far as I was concerned. Looking back, it was definately the right decision for me. And no one was insistent anyway.
Fast forward to these latest years and the reason becomes more about anesthesia. And how any sedation sends Sarah into an ileus. And at this point we would only be doing it for our curiosity. Which is not a good reason to put her through pain. Not to me anyway.
The Rett Syndrome specialist wants one. His reason? Because if she had a 'normal' MRI, he would then give her a Rett Syndrome diagnosis, even though they cannot locate it yet in her DNA. THAT gave me pause, for about 2 minutes. Is it worth putting her through it for the diagnosis? I decided no. Nope. We can live without it, even though that's exactly what she has, in my humble opinion. And I join support groups and treat her accordingly. She is followed at the RS Clinic at Boston Children's. She is given every advantage.
Sometimes I think it is a good thing to not have a diagnosis. Because then, there are no preconceived limitations. No one knows what her potential is, not the schools, not the doctors. She is just simply, Sarah. And the focus is on the child, not the diagnosis.
So why am I even posting about this? Because I read many blogs concerning special kids like Sarah and it seems that all of them have regular MRIs. So, I just wanted to share the flip side of a child who has never had one and probably never will, unless something drastic happens and it becomes imperative. At which point. I would suck it up and roll her in, anesthesia and all.
The end.
