Its topic - planning for the future care of your child with disabilities - is one that I studiously avoid. I don't even dare give it a fleeting thought, let alone delve into it the way this article does. When each day is daunting and money is tight, the prospect of decades more of this situation is beyond depressing.
Another reason I stopped reading the article in mid-sentence is that disconnect I tend to harp on: the disabilities described sounded like utter normality compared to C.'s.
4-year-old daughter, Lily [Salerno], with soft brown eyes and a wide smile, was found to have Rett syndrome, a rare neurological disorder, last year. Lily’s case is relatively mild, but she still has limited use of her hands, has difficulty swallowing and can verbalize few words... “She has 10 therapists and 15 doctors, and I manage all of this,” said Ms. Salerno, 41, of Brooklyn.That's no typo: ten and fifteen! I stopped reading at that point.
But once I have plodded through to the end, I have no doubt I'll find it enlightening and useful. If not now, then soon. So, don't take a lead from me. Do read this (via the New York Times).