A couple of weeks ago Elizabeth, wrote this post. In short, her lovely daughter, Sophie, had an MRI and it resulted in a diagnosis, a reason for the seizures, etc. “Wonderful” you say? Yes, of course. Elizabeth warned against asking questions such as “Why has she not had an MRI in ten years?” and “Are you going to sue the doctors?” and the like. Actually she didn’t really want any questions. She went on to say …
So now we know, and my world, my very identity has been blown up, I think, at least for now. I have come unmoored, in a way, and while not completely lost, I need to row a bit out here and figure out a way back.
I wouldn’t feel right not posting anything at all about this momentous development, but this intro to what couldn’t be seen has been seen is the most I can do at present.
Of course I thought to myself, “Oh come on, Elizabeth, that’s so girly,” and wanted to say “just man-up!” (an expression I think is actually non-sensical and very objectionable)
I mentioned the other day that Pearlsky just got a diagnosis (not in the global sense, just another thing wrong with her) that has thrown me. It really has, and has not gotten better. It is NOTHING like Sophie’s diagnosis, not at all, but damn, the parental reaction is the similar. One reason I do not post about it is I am NOT researching, learning or asking until I have more information on Pearlsky’s exact situation, we have a big shot doctor pow-wow in January. And trust me, you will want to tell me stuff. She will be okay, I know that. But you know how there is something that makes you physically cringe? It is different for all of us, maybe it is seeing Les Stroud munch on live scorpions (gotta love Survivorman), or any of several scenes from Un Chien Andalou, or seeing the afterbirth and never wanting to have sex again (I’ve birthed four, it’s gross, but not that gross).
Pearlsky’s diagnosis does that to me. And this is not good. I need to man-up.
On a better note, I just got a call from the only other U.S. parent of a kid with the same amino acid issue and some really cool stuff came from the phone call. Stay tuned.