My dad, rest his merry soul, is an unknown legend in the modern
world. In the 20th Century, a fan of classics, he re-appropriated
and resolved centuries-old debates, he reminded us of the importance of
selective geography, and he even invented Latin words and phrases. And
he did all of these things through simple, everyday sayings and re-minted
coined phrases.
He would often spout these nonsensical Latinate sayings and other
quotidien quotes in response to the outlandish and childishly (and naturally)
silly requests and behavior from his eight children and loving wife (and
occasionally members of the general populous).
Though he would never tell us what these words meant, and I never
learned latin (or greek) well enough to figure them out at the time, it was
clear he expected we would learn from his eternal wisdom and expertise, glean
something of the nature of the universe that had yet to be revealed, or maybe
just take a moment to reflect on how our demands and actions must seem to the rest
of the world.
Today, as James continues to recover from another of his myriad procedures,
docs line him up for another, and family and friends continue to shower us with
support and happy thoughts, I am reminded of three of my dad's favorite
sayings:
1. Honesty is the best policy. Clearly, adults need to remember this
saying more than children, though we hope our kids learn this adage early so they are
less likely to become the kind of adults that need to remember the importance
of true honesty. Kids are more prone to trivial lies, the kind that make us
smile and laugh and say "awww, that's so cute," but adults can take
that same trivial lie and turn it into something much more complicated.
In
the last few weeks, all of our doctors told us cute little white lies about
some not-so-common things: chylothorax is common; octreotide and/or TPN and a
low fat diet commonly have a positive, sometimes curative, impact; thoracic
duct ligation is a common step when TPN doesn't work. The trivial part: yes,
these things are common. The complicated part, that none of our doctors wanted
to say, but all were yelling implicitly: James and his progress so far is not
common. That our doctors wouldn't come out and say this caused much
confusion, because they were all trying to say things that sounded better,
instead of simply telling the honest truth: James is the first patient anyone
at NYP has seen after a Fontan to go this long with chylothorax.
Is honesty actually the best policy? Which would you prefer if it was you or your child?
2. Going to Buffalo for pencils. I can see how someone not from
upstate NY might not get this, except that everyone knows the unfortunate
Buffalo Bills, and I bet no one would want to go to Buffalo, a grey, steel-belt
town on the Canadian border, just to get something you can pick up at any five
and dime (aka, corner store). To keep this one simple, going to Buffalo for
pencils is the opposite of keeping it simple. It is the accidental (or
accidentally intentional) process of making something simple insanely
complicated.
James has, by all medical reckoning, an insanely simple, albeit amazingly annoying,
medical condition. Chylothorax pleural effusions are not complicated: high
pressure causes a vessel to pop, and it leaks. The trick is, of course, how to
stop an oil (aka, fat) leak. But even that isn't that complicated, it's just
very difficult to stop (think Deepwater
Horizon oil spill).
Our
medical team does amazing things, and is capable of doing even more amazing
things than I hope we ever get to see. I am extremely happy and grateful for
what they have been able to do to keep James smiling still to this day, as well
as their willingness to include mommy, James, Elise, and me in their decisions
and decision-making process.
But
for some reason, many of us involved in this epoch of James' life have decided
that going to Buffalo for pencils is just the right plan.
Maybe the extra time for reflection and meditation while on the extended journey for something simple is just the right thing. Maybe not.
You decide.
3. Fortis stomis screatus scrat. This one's my favorite, but also
the most strange of the bunch. Dad would say this supafast, “fortistomiscreatuscrat,” and for years and years I had absolutely
no idea what it meant. Then I learned some Latin:
Fortis (adj.): strength
Stomis (n.): voice/music/flute (also, Greek: stomach)
Screatus (n.): to clear the throat; throat-clearer
Scrat (?.): This one doesn’t have a
Latin equivalent, though there are many words this could come from or be a part
of, and it seems to be of Greek origin used in Latin. For example, -(-)crat(-),
a common suffix to many words, usually in the form of “cratus” or “crate” or
“cratis.”
The ones that seems to fit best with the other terms are:
Consecratus (v.): to consecrate, to curse, to vow.
Sacratus (adj.): hallowed, holy, sacred (also, Greek
as a suffix: to govern, to rule, authority, power, etc.)
So, in
other words, for all things holy and true and honorable, clear the throat, use
your voice, and say whatchoo gotta say loud and clear and with force, cuz
otherwise no one will listen.
That was a lot to read, wasn't it? This might be one of my longer posts in a while, if not ever on this blog. I do have a purpose here, I promise.
I'm going to be honest, because I was told this is the best policy...
To all of you reading and following, we appreciate your care and concern, and we thank you deeply for all of the support you've been providing. For those of you who have been able to take time out of your days and lives to come visit with us, having someone with James all the time, to keep him company and help keep his spirits up, is crucial, so we thank you immensely.
However, when it comes to making medical decisions and determining his future care, while we appreciate the input from family, friends, and doctors, we can and will handle it on our own. We have been anticipating this, in as far as what is happening can be anticipated, for almost 4 years. We've done our homework, we continue to ask questions and do research where new situations arise, and we are constantly evaluating old information, even as it becomes less meaningful and helpful.
It is kind to offer an idea or contact, but please stop there: we will follow up as we feel appropriate and necessary. Please do not try to make decisions for us, insert yourselves into our decisions, or ask to become a part of the medical and logistical decision-making process. And please do not ask about things beyond what we have shared.
James, and all of our family, needs your presence, your love, your caring, your support. Anything beyond that is... going to Buffalo for pencils.
Fortistomiscreatuscrat.
