Why did I never see what was really in front of me? Why did I hang onto the stupid notion that everything was OK? See I have always hung onto (gripped for dear life)the fact that cognitively Miss T was fine, smart, clever even. In my state of delusion I felt that if she was OK cognitively than she would get through school and come out and be able to independent and live her life. Stupid, stupid, stupid. Not to be, in fact those words I least wanted to hear were uttered "intellectual impairment" by the developmental pead.
There, the words I least wanted to put out in the world because they represent so much of what I fear for her are out there for all to see. To type them is easier than to speak them. Because to speak them, I would have to choke on them to get them out.
What is it that I fear so much? I fear the sadness of that comes with another loss of some of the hopes for normality for my little girl. I fear the venerability that will inevitably come. That Miss T will be at the mercy of the general community. At times when she gets older, that there will be those that understand and are kind and accommodating but on the other hand there will be those that will use and manipulate her impairments for their own benefit. I fear the the whole future for her now more than ever. I fear explaining it all to her.
I know deep down that we are lucky to have the outcomes that we do. For one, we got to bring our baby girl home. She walks and talks and is happy. Sometimes I think it is just me wanting more for her (and for me) that fuels my unhappiness with the steps back. The truth is that I really want what I can't have - I want the brain damage to go away and to have a normal, happy child that doesn't have to suffer.