The journal of a mother raising a very disabled child
Sunday, May 1, 2011
A week ago, my daughter C turned sixteen years old.
There will be no party for her. There really isn't anything to celebrate. Other than the fact that she isn't even more profoundly disabled. M, my daughter who was murdered ten years ago, used to organize a birthday party for C every year. But nobody in the family has assumed that responsibility in her place.
Happy Birthday C. May the coming year bring you a miraculous improvement.
Here is an update about the food feud that has been raging between C and myself ever since I altered her diet to comply more strictly with MAD guidelines which, by the way, does not seem to be helping much lately. I'm noticing several big seizures a day again.
Anyway, the update.
Fearful that she would lose her self-feeding skills entirely, I didn't resort to passive feeding. Seeing her lift a spoon independently and place the food squarely in her mouth was one of the precious few pleasures I have had with her. So I kept sticking the spoon in her hand (with the handle wrapped in reversed masking tape so it will adhere to her hand).
When she repeatedly and vigorously refused to raise it to her mouth I firmly gripped her head and hand and put (well, I guess I could say "pushed") it in. It probably did qualify as force- feeding. But I knew she must be hungry, having eaten so much less that she used to.
I also remembered a similar feeding nightmare I had with her about fourteen years ago. She had just come out of a horrific period of status epilepticus seizing, hospitalization and the prolonged use of a feeding tube. Her doctors warned me that the tube was no longer a safe solution and that a gastroscopy was the next step.
At the time I was friends with the mother of a nine year old boy suffering from the terminal syndrome Canavan's Disease. He had had a jejunoscopy. She warned me that these procedures are not risk free and can result in frequent infections of the opening. So I ignored my otherwise wonderful pediatrician's assurances that "it's a fantastic and utterly safe" procedure. I determinedly spooned every meal into C, holding her head back for ages after every morsel, waiting for it to go down her gullet.
After days of this she finally started swallowing again and actually became a voracious eater.
Anyway, back to the present.
Over the last few days, C has thankfully resumed spoon feeding herself with almost the same gusto she had about a month ago.