More kitchen table talk

So last night my 10-year-old child and I were sitting at the kitchen table filling out back-to-school paperwork, and they mentioned that they had had a dream in which their older brother didn’t have Coffin-Lowry Syndrome. They proceeded to tell me of the zany antics that can only ensue in a dream world. I’ve had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken.

Special needs eclipse

I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.

Water, water everywhere

I’m getting used to this ambiguity. Often special needs parenting (and living in general, as you all insightfully point out) is about learning to thrive in that in-between feeling—being clear about what you want, having faith that you’ll get there, but not being attached to getting there. It’s like floating. I let go of the shore, on my back looking up at the sky, not getting too caught up going in any particular direction, occasionally paddling my feet to steer me in the generally right way, but not so much that I get a cramp. Just being. Just floating. Just appreciating being wet.

Scene from a breakfast table

INT. AT A BREAKFAST TABLE – MID-MORNING The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite …

The inner spiritual life of an ambulance blesser

There’s been a story recently in the news about a boy with an intellectual disability who was denied first communion on the grounds that his priest did not believe the boy had “sufficient knowledge” of Christ, a requirement for first communion. In trying to think back to my own first communion, I can’t recall that …

Keeping your tongue up with the times

Image via WikipediaI remember, during the course of so many conversations, having to point out to my dad that we didn’t use this word or that word  to describe various groups of folks anymore. I know he didn’t mean to want to be offensive; he just needed a little help keeping up with the times. …