Is she better? I’ve had a really really tough day. And I will warn you, this post uses the f-word. A lot. And if you object, well, fuck you.
There is so much to say on this topic, but I won’t say it all now. I fought, with websites and a blog, visits to the State House, conversations with the U.S. Congress, to get Pearlsky out of the No Child Left Behind (NCLB) testing (and we won). Why? Even the “special needs” version REQUIRED
Epileptiphobia: an exaggerated usually inexplicable and illogical fear of seizures, typically those occurring in a loved one
We went to the clinic in the hospital today to see if Pearlsky has a urinary tract infection. We have known this doctor for about 15 years, she was not in today, and we knew that her nurse would do the test. Here is the email I just sent the doctor.
As I have blogged about before, my children have an inborn amino acid deficiency. They have a gene defect so that they do not make an enzyme that breaks proteins they eat down into amino acids, and without this particular one, well, you get Pearlsky and her brother.
My parents used to cringe when that was how I started a phone call from college. We still joke about it. Something happened recently that I decided not to blog about. You see, I am generally a happy person, I go about my day like we all do and when some s**t falls from the
Emma has a new post where she mentions articles about possible future cures for such things as Down’s and Angelman’s. We can hope and pray. If someone came up to me with a magic potion and said it would “cure” Pearlsky, I don’t know what I would do. Really. It’s been seventeen years of her,