I was doing some reading last week at work (of course after all my jobs were finished). I usually don't read Reader's Digest, but it was available and sometimes the jokes are pretty funny. In this edition was an article called "My Daughter, Myself" where a woman, Sallie Tisdale, talks about how it feels to care for a disabled child. I found some of the things she wrote relatable to my own situation.
Some of what I read was disheartening, some other was a kick in the butt:
"Ambivalence is a normal state for me. It is hard to articulate what I seem to have lost, because it is something I never had. Annie was never going to go to law school--we knew that. Eventually we knew she was not even going to drive a car. What I miss is something vague and dreamy about a daughter growing up. I have fantasies of high school girls giggling in a bedroom behind a closed door, of long phone calls. I feel grief for the past, for all that there was none of, and grief for the future, for what there may be none of yet to come. Every parent loses a child, several children, as each successive child passes into the next--the chrysalis of the infant becomes the toddler, the toddler gives way to the child, and the child to the youth, and finally the adult. This is one element of being a parent, of being alive, though there is an enduring sorrow in realizing not that the child has died but that the adult anticipated will never be born.
"I feel sad and sorry for myself or pissed off, and then I feel petty because I'm sad and sorry for myself, because I'm complaining when things could be so much worse. She's not aggressive or incontinent. She can walk and make herself a sandwich and sleep through the night. And we're lucky, because as late as it was in coming and as vague as it is in explaining things, we did eventually get a diagnosis.
"Long-term studies of people with autism are not reassuring. Very few go to college, are employed, or lead independent lives. The supports of school are remove, and nothing takes their place.
"Don't ever say to her, and don't say to yourself, that there is any tragedy in who she is. She is what she is."
Pajarito Mountain August Walk
9 years ago