After that earth shattering moment when my husband dared bring up the idea of thinking about placing Dovi, my innocence was destroyed forever. While I successfully put it out of my mind for the next year, the very knowledge that Dovi was living in our home on borrowed time and his path to the future was living in a facility simmered constantly on the back burner.
I had known, of course, that unless a miracle occurred and Dovi would be fully 'cured', or at the very least, toilet trained, relatively manageable, and verbal, it was his inevitable fate. But in my mind, it was far, far off into the future. There was no point WHATSOEVER on dwelling on it when Dovi was 2, 3, 4 years old.
But once I joined the support groups, right from the start I realized that the favoried topics of discussion in the group were respite programs, camps, and long-term placements. I was horrified. I had come there to find more info about programs that would "cure" Dovi, not ideas that would permanently label him a disabled person who needed tons of personal care.
Obviously, the women in the support group who were talking 'placement' had children way older than Dovi. Their kids were in their teens and low 20s -- with some preteens in the mix. Certainly they weren't 2 or 3 years old. And they were worried; residential care facilities were few, and waiting lists were long.
I largely tuned them out. One day, down the line, the info would come in handy. Not right now. Now I needed information about school. And camp. And home health aides. And yes, respite options. Not long-term care.
But after that pivotal conversation with my husband, I began keeping my eyes and ears wider open than before.
The stark truth, however, was pretty abysmal.