September 1984

September 1984

Jacob changed me and sometimes I can no longer think of who I was before I had him. But then again, I don't want the fact that I had a handicapped child, and that child is now dead to be the single most defining feature of who I am.

And yet, there are times when nothing else matters but the fact that I am the mother of a handicapped child and that child is now dead. I am touched in a way that is both bitter and sweet. Sweet because nothing can be taken for granted anymore. Bitter because of the loss of perfection for my baby, and despite being his mother, I could not fix him. Pain for his death, which was not a blessing - we didn't even get a chance. Would we have been one of those families who spoke of our "special" child as a blessing? I would like to think he would have been one of the "sunny" ones.

And then I do an about-face, and I rage against the day my baby came out handicapped. How can we parents cover up the pain by using such euphemisms as "special" or "blessing", when it is so damned unfair for our children to suffer? How many of us walk about with a serene attitude, acting blessed to discourage pity, while inside, we are really shaking our fist?