A dozen dozen
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.
OK, I know I am late to the party, but “birthed four”? Anyhow, what is it about any kind of diagnosis, big or small, that turns everyone you know into a medical expert with all the answers?
Elizabeth gave a remarkable post as soon as she was able after the identity-blowing diagnosis, and I expect you will, too. Meantime, SD, you really know how to work your audience. Hoping the ‘cool stuff’ brings a smile to Pearlsky’s face.
A man I loved once told me that I had a “man’s mind.” And he meant it as a compliment, so Single Dad I just don’t know what to say. You’re a bit further along the path than me (by a few years, I think), a bit more bitter, perhaps, a bit more bold. And that’s not counting the male bits.
JWG: I was a paramedic for a while, a deaf woman in the street during the blizzard of the century gave birth in our open army jeep, then my two, then a friend who had no one to help her.
Elizabeth: Pearlsky just turned 18 … I would not say I am “bitter” though. Sometimes I regret that this blog is focused only on the aspects of my life with Pearlsky which are, as you know, difficult. I see where I appear in ways that I am not generally perceived by those who know the entire story. Maybe I need a post about that!
Barbara: Thanks for the support, as always.
See? What do I tell you all the time? So many people want to know about YOU as well as about Pearlsky. It’s the whole package, whether you want to believe it or not, people, meaning us, in our own bizarro way, care about both of you (all three of you actually, but we don’t hear as much about your son and I believe that’s because you are so separated from him, and not by your choice either, so you tend to write about him less just because you are around him less, not for any other reason).
Anyway, I’m on pins and needles, and you’ll let us know when you’re ready. I do hope that you are doing OK. I think whether one is as far along as you are, or a relative newbie like me, why is it that the people who read our blogs always seem to know when our shit is getting rocked? Is it because we disappear for a while? Tone in our words? It’s WEIRD. But amazing how plugged in some folks, and its almost always the chicks, who have this sixth sense about where we are in our heads.
Stay frosty…hopefully the ‘cool stuff’ helps with that. How rare IS that amino acid issue?
I kind of liked Un Chien Andalou. Maybe it’s my penchant for surreal weirdness that helps me through my days? And I would take it over the afterbirth any day. As in the placenta, and also as in “Sorry ma’am, your freshly born baby most likely has a chromosomal abnormality.”
We all know that you had your tongue in your cheek and Elizabeth doesn’t reeeeally need to man up, as she has balls for all of us. And you don’t either, since you are made out of steel.
…the suspense is killing me here. If I promise to not Google the diagnosis or otherwise, please tell. I have no time to read suspense novels….this website is all I have time to read.
BTW, flooded the bathroom tub the same way…distracted by my disabled daughter…although, minus the turkey.