Until recently I congratulated myself for being the only blogging parent of a profoundly disabled child. The others, I presumed, were contending with just mild to severe CP, autistic, learning disabled or some such, in my opinion, disability-lite.
Now I've discovered a flourishing blogosphere community of parents like me to which I've been gravitating. Of course, C. still takes first prize for "Most Profoundly Disabled of All", in a contest I wish she'd start losing occasionally.
But in the four blogs I'm avidly following the disabilities are genuinely severe and the parents so candid that I'm culling solace, entertainment and valuable information. It's often like looking into a mirror - right down to the gender and ages of the children (all girls between 19 and 20). I've linked to two of them in the past but here's the full list:
- Single Dad/Disabled Daughter
- A Moon, Worn as if it Had Been a Shell
- Life With a Severely Disabled Child
After the standard dampener of hope that we've grown used to (i.e."it's not yet proven effective; success stories are anecdotal, etc") she seemed to read my mind when she said: "But why not try it? You've got nothing to lose."
All in all, it was a superb visit. I know, that's setting the bar awfully low. No diagnosis, no improvement, little hope of any in the future - yet we walked out of the office smiling. After C.'s daytime seizure lull was broken yesterday by two wakeful ones, I'm just bursting to start the cannabis.