I was having a conversation the other day when I realized that the words appearing in the dialogue bubble over my head were as strange and foreign as any distant language. I saw them there, suspended in mid air, hard, glistening, in bold. So much has entered our lives that is new, the I.V. pole, the enteral pump, the baby in a brace. But here too, vocabulary… These words are new, at first they hurt your brain but then… there they are, on the tongue, in the conversation, hanging above and around you like weather.
Some examples:
Costello Syndrome (Over the past year I have said the following to a number of insurance customer service operators, nurses, appointment makers, and random askers and acquaintances. I say, “ She has Costello syndrome, like Abbott and Costello but a lot less funny. This invariably gets me crickets. CRICKETS. Laugh! It’s ok. Sheesh.)
Hard munchibles (In Willa’s oral stim therapy we are introducing hard munchibles, i.e. a carrot or celery stalk to ready her mouth for the distant dream of getting food in there. Apparently my thumb is classed in this category as Willa’s new favorite pastime on my lap is to grab my digit and maul it with a ferocity bordering on mania.)
Non-nutritive suck (While meeting with speech pathologists in the early days we learnt this term, describing Willa’s oral aerobics about the bottle nipple she refused to take food through. This is a personal favorite for us as much of our life this past year has itself been a non-nutritive suck.)
Dysplasia (In and of itself not such a great thing but the word is promising. In my ear it sounds like a lost continent on which flourished beasts of incredible dancing ability.)
Afebrile (Without temperature for those who may not be up on their hospital lingo… When the nurses looks at my girl and says, “Well she’s afebrile so that’s good” I always hear the following said in the voice of Ralph Wiggim from the Simpson’s, “I’m afebrile!”)
What wonders! What strange sounds! What bizarre roads we walk down!
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5 comments:
Hey, at least we've still got our senses of humor, right? :)
what's a diorama?!...you killllll meeee..
i often think of "costello syndrome" i say everyday and what i didn't even know before ulysses got diagnosed.How strange.
I did know Elvis costello though not abbott and costello that americans tell me about when i say my son has costello...
Willa is a beautiful little girl!
I can "see" and "feel" what you say :)
With all respect, I would like to clarify few things about the appropriate vocabulary when referring to Down syndrome:
* It is Down syndrome(not Downs syndrome). There’s no “S” on Down.
* Rather than saying “Down syndrome baby or child” say “A baby, child or adult with Down syndrome. This values the person before the syndrome.
* The s on syndrome is not capitalized.
Thank you so much for the Down vocabulary clarification. I truly appreciate it and will forever more use the correct usage. Words are tricky and can absolutely cut with their sharp little corners. I'm happy to be able to smooth some of this.
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