Saturday, April 04, 2009

The Dark

During the day, especially if it was a gray rainy day like today, I like to have as many lights on in the house as possible. I'm not afraid of the dark, but I need to have the lights on for other reasons. It's just a comfort, a healing thing during that winter-time light deprivation situation. And a sunny day, like yesterday is even better.

But at night, I enjoy the dark. It allows me to just be still and quiet. It allows me to appreciate the contrasting flicker of candlelight that combines with the rhythmic rain drops outside to create a meditative space in my head.

And the dark usually means that everyone else is asleep, and I can absorb and process everything that happened during the day, or during my life, whichever needs processing the most right then.

This has been a tough week. And I don't see a respite coming yet. Only what I can create myself, only what I can forcefully hold onto, or just snatch away from the powers that deny me peace of mind.

But first, I have to step into the Dark. I have to write down the worry and the worry and the worry. I have to accept the fact that there might be a seventh daily med added to the list for The Young Prince. I have to convince myself that this stupid lingering cough is just a stupid lingering cough. Sure enough the stethoscope proved clear lungs and no crackling or wheezing. But the fatigue. The lowered hemoglobin, the lowered crit, the lowered albumen. Nothing horrible, but a little lower than last time. Enough to prompt phone calls and faxes between doctor's offices.

I didnt' want this life. This ain't no fucking trip to Holland, it sure ain't fucking Italy - tell me where is this place? This world of trying to keep all the pills straight, this one has to be taken two hours after a meal, this one is only in the morning, this one is only at night, and not a full pill, not a half pill, but 3/4 of a pill. Not easy to cut up a tiny pill without turning half of it into dust. It can be done though. And cut down on the caffeine, doesn't mix well with a beta blocker. And doing the paper route, later and later every day. Hoping that the Young Prince will feel up to it this time. And he's not. Not this day.

And when we try to think ahead, to plan a vacation maybe, for the first time we realize that maybe we better not plan too far ahead. I don't want to be this fatalistic. I DON'T WANT TO BE DEBBIE DOWNER.

But the reality is that we have no fucking clue how to proceed. Oh, sure we operate on the premise that the liver function is OK. Not fantastic, but workable. There was weight gain, energy, sparkle. But slowly the jaundice showed up in early winter, again. Then the bleed in February. The ER. The two unsucessful attempts at NG intubation - and finally the third time worked. Banding procedure, ICU bed, transfusion, and another ultrasound. Then another banding procedure in March, adjusting the drugs to a tolerable level but not after losing another week of school. A bone density scan. Easy peasy, but still - one more test.

Then more sparkle, paper route on schedule, mall time with friends, homework, family... And then a cold that just won't quit. Fatigue...again.

And really, how can I handle the Crown Prince? I don't know how to even get my head around this one. OK, we got a grip on diabetes, meter, strips, lancets, Metformin - but, but...the Crown Prince does not take change very well at all. He knows that these changes are imperative. He understands it all on paper, I think. But the truth is that there cannot be a casual relationship with soda any longer. Either it's diet or it's out. There cannot be ice cream runs - just cuz. And your friends are probably not going to be very impressed by your news and just might want to eat those chips and slurp that soda in your face. And this stuff has to change very soon or there'll be a daily injection.

It's exhausting, is what it is.

So tonight I did carve out that little respite, the oaisis of Just Me and Tom watching a movie together because he didn't feel well enough to see South Pacific at the High School. I lit a bunch of candles and we had the dark, but we had the light too.