Did he interact? Could he respond? Was he umm...'all there...' ? (retarded, is usually what they meant)
Yes, Yes, and ummm well, yes.....But Yes, he probably was also mentally retarded. Because we have this picture of his brain from the neurologist that says so.
Actually, when the neurologist-from-hell gave us the first report on his MRI, he said (I found in my journal, and I quote), "We have no way to know what this means for his future. He may have trouble with learning, uhhh, you know, his ABC's."
And then the next day in an email exchange when pressed, said more ominously, but taking a step out of storyland, "He may never walk or talk. There is no way to know."
Allrighty then! That was a little bit more to digest!
What most people think of when they hear 'retarded', is 'thank heavens that's not my kid!', as images of large drooling and lumbering adults come to their mind. While this is perfectly normal and even acceptable, it does make it very hard for the parents of a child who is 'differently abled' to try and convince someone else that they do NOT FEEL BURDENED. The drool and the shit and the extra work it takes? Fine. The way a mother feels about her typical child, the way she would do anything to protect him from danger, the way she is torn up inside when she fears he will be treated unfairly, the way she gazes at him while he sleeps with awe and love and gratitude that he has come into her life....all of these things and more, times one hundred, is how a mother feels about her child who was born less entitled than yours. Born into a life on this earth. Just a little less lucky.
I am still astonished at the number of people who have intimated that Elijah's death was somehow freeing for us. When, really? I had embraced this surprising avenue of motherhood with the fervor of discovering a purpose. So when he and all of his specialness was gone? What purpose did I have? I know my purpose, you don't have to point it out. I am only sharing this to try and get it through your fearful heads that parenting a child who needs extra care? Parenting a child who is retarded? Not worth your fear, and it's insulting to those who are living it. Worth the fear of losing a dream maybe, but not ever worth the fear of living it.