As we were trying to figure out what was wrong with Matthew prior to his brain tumor diagnosis, as he continued to deteriorate in every way, there were some poignant comments from others that clarified and validated our experience.
Many of these comments came "toward the end"--what I call the final months leading up to Matthew's diagnosis, when Matthew was 10 going on 11.
I'm in the process of reaching out to these commenters for their recollections of that time. I did this yesterday with one of my brothers, reminding him what he had said about Matthew all those years ago, something so poignant that I had written it down.
It's hard to write here, and I hope not to offend anyone, but the comment encapsulated Matthew's cognitive deterioration. It summed up what Michael and I knew but could not get any doctors to acknowledge.
What my brother said, so gently and lovingly, was,
"If I didn't know any better, I'd think Matthew was, you know, mentally retarded."
And my response was simply, "Yup. Exactly."