A formal introduction

Before the story, a note on new pseudonyms that will start to appear soon (also now in the “About” section):
Elysia – that’s me! I picked it because it’s part of the scientific name of one of my favorite animals (a sea slug). But it also has other cool uses and meanings, according to a quick web search.
Lily – and that’s my sister!
…my parents will just be “Mom” and “Dad,” since, well, those names do the job well enough.

Taking my cue from Lewis Carroll, I’ll start at the beginning: I was a couple of weeks shy of my third birthday when my sister was born. I remember two things; one of them is chasing the reflection of the fluorescent lights while holding my father’s hand in the hallway. The other was sitting on my mom’s hospital bed, across an overbed table from her. She’d been brought a breakfast tray, and she let me have the small box of Cheerios that came with it. (I’m still fascinated by those small cereal boxes, interestingly.) I imagine that I’d barely mastered the ability to pour liquids, but my parents let me pour the milk myself that day. My father scolded me, warning me not to take all of the milk, because my mom needed some. I’m sure that his tone of voice was less stern than it sounds in my memory, but I was upset enough by that episode that I still remember it. Not entirely surpringly, given my age, I have no other memories of my sister’s birth or infancy.

When I reached adulthood, my parents told me more about the circumstances of her birth and her first few months. They knew that something was wrong before she was born. My dad tells me that the pediatrician was less than truthful, though, and that the situation was much worse than they’d been told. She had a severe asymmetry of her head; this involved hydrocephalus (“water on the brain”), high glaucoma pressure in her one good eye, too much bone on one side of her skull and not enough on the other, cleft lip, cleft palate, and a single eye. Before her first birthday, her epilepsy manifested. (Apparently, we were on a family camping trip and my parents drove a couple of hours directly back to our hospital.)

As she’s grown up, some of these problems have been resolved or minimized, although others have gotten worse. She underwent operations to balance her cranial bone mass, fix the cleft lip/palate, and insert a shunt to drain the excess fluid from her head. The epilepsy has been difficult to control since she entered adolescence (a story for another day), and she’s gone through a series of medication changes to keep her from having regular grand mal seizures. From what I know – not living with her daily anymore – most of her seizures these days are small and very short (20-30 seconds), but happen up to a several times per day. She suffered a retinal detachment about ten years back and is completely blind (yeah, another story for later).

She’s also got some developmental delays. As I write this, she is 25 and I am 28. We think she’s largely going to stay at a pre-kindergarten level of function for abstract non-social learning; she isn’t really able to do math and is still pretty weak at phonics. (She had learned to read select words before losing her vision, but her vocabulary is rapidly expanding these days and she’s getting better at basic spelling tasks.) That said, she’s much more skilled than I am at social interactions, and has become fairly adept at manipulating the unwary. All I can really say is that she’s an extrovert and I’m an introvert. Right now she’s sort of the quintessential teenager who loves hanging out with friends, talking on the phone, and loud music.

As the typical child, there’s a lot less to say about me. Sure, I’m not a specimen of perfect health and development, but that’s true of all typical humans, right? I had braces on my teeth growing up – you can imagine that this made me look even more the part of the smart and nerdy kid! Part of me still worries that one day some latent condition will spring up and catch me off guard, but I’ve actually left a lot of that fear behind as I’ve gotten older and better educated.

So now you know: that’s who we are.


3 Comments on “A formal introduction”

  1. I’m fascinated by what doctors tell new parents about their children’s conditions. Did the pediatrician know how severe Lily’s disabilities were and withhold that information, or was s/he hedging his/her bets optimistically?

    I’m not sure what they knew before he was born, but upon my brother’s birth, my parents were told he’d be a “vegetable” and die young. Now he’s 35 and a high school graduate, so those doctors can suck it.

    • Elysia says:

      I have to wonder about what this specific doctor knew about Lily before she was born. Clearly, the ultrasounds were weird enough that they had to talk to my parents about it, but I don’t know much more than that. I suspect that the doctors could have warned my parents that the cranial problems would likely be accompanied by neurological problems, but I haven’t had the courage to ask more about this situation. Also, could it have been a liability issue, rather than bet-hedging or optimism? (All of these options scare me to varying degrees, especially since I hope to have my own children someday.)

      The sad thing is that my mom has told stories about other families she knows where the doctors apparently told the parents that their children were fine – when the children had varying levels of visual impairment. My folks have also mentioned knowledge of systemic prejudice within the adult-care system, in which people they know with names that sounded Hispanic were denied services or treated less well than we know is possible.

  2. FYI, I asked my dad about what they knew before my brother was born, and the answer was: nothing. They had no idea he would be disabled, so when he was born small and with several congenital abnormalities, everyone was shocked. My dad said it was a very tense and awful time in the birthing room, since it was clear that the doctors were acting as if something was wrong, but they wouldn’t say what.

    I do really wonder about the liability issues, and how advanced testing may have changed the game since the 70s and 80s.

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