Tuesday, April 14, 2009
Holidays are like any other day to CB. She is "very low functioning" on the Autism Spectrum. In addition, she is diagnosed with "severe to profound cognitive impairments." I don't like labeling her like this, but labels get the point across with parsimony to people who do not know her. Please trust that I see her as more than a label, and I see her strengths. In addition to her strengths, there are challenges. Holidays and birthdays are meaningless to her, and often stressful - crowds, traveling, foods she won't eat, expectations. Since CB's diagnosis at age 2, special occasions have always been marbled with threads of sadness accompanied by varing levels of stress. With her visiting her Dad during many of these major holidays, it has allowed me to forget the sadness, the emptiness, forget the wishing, the wanting, the missing.
The truth is, since adding three more children to the mix; I have been able to distract myself from the all encompassing World Of Autism and the loss that comes with it sometimes. Three children under the age of 4 keep you busy and it's quite easy to focus on them and their "holiday excitement" while CB "stims" in the background like moving wall paper. She is comfortable. She is alone. That's how she likes it. I don't want to like it that way too, but breaking into her world and trying to have her value what I do has been difficult... impossible.
So, I distract myself with the neediness of the other three. I distract myself from missing her and the rejection I feel when I try to engage with her. She wants to be ignored, and over the years I've fought not to oblige, but it is difficult.
I am not proud of all I've confessed. But I am trying to be honest with myself and my readers. Why I expose these less than Pollyanna feelings in public is not just for catharsis, but also to say this: I feel myself coming back to life with CB. For instance, we did extramural bowling this fall. Together! Just us. And, this Easter, I made her an Easter basket for the first time in almost a decade. Though she was not here, I saved it for her. Her birthday is next month and I find myself planning a low key party. The last party I threw for her was her fourth. At some point, I stopped. I didn't stop caring, I didn't stop loving. I stopped hoping. I stopped trying. I started buying into the rationale that "she doesn't care anyway" or "she wouldn't notice one way or another." These were defense and coping mechanisms. Maybe she doesn't notice or care. Maybe she does. But in giving up on these small things, I gave up on one important thing... I stopped having faith that she's IN THERE.
CB, I am sorry. I won't give up on that again. Ever.
I missed you this Easter.
I missed you.
I miss you.