Glutton For Punishment

"I really don't want to answer that."

This coming from a guy who ALWAYS "answers that". Even when the questions are bizarre, lengthy (like 2 pages worth of email), repetitive, and downright tedious. Even when he's running late, even when he's tired, even when he can't give one right away, he always answers me.

But this time he didn't want to.

And I knew why.

But stupid me, Miss Gotta-Know-It-All, just couldn't leave well enough alone. Had to make sure, had to be certain, just had to ASK.

His face said it all, and I dreaded the look. I'd seen it before. When he dropped the bomb about her having encephalopathy. I asked then. The point blank type questions. The type of questions no parent should have to ask or discuss. And he gave me the look. And said, "I don't really want to talk about that." "Well, for cryin' out loud! (My mind screams) If you don't tell me, who's going to?" But it hurt him too. I could tell by his face. And I let it be. I already had my answer.

So why didn't I just drop it this time? Just take the "no" for an answer? Don't go there, Kell, his face said. Let's just not discuss it.

But I'm a glutton for punishment, I guess.

***

Me:
"Chief, she's crashed so quickly this time, it's so weird."

Chief:
"Mmmm hmmm, cuz she usually goes down over a period of time, right? So, she was fine until......."

Me:
"Yesterday morning she was fine. Yesterday afternoon, she was drooling and talking funny and her arms were a mess. It was that quick. And we've been right on with the meds."

Chief:
"Yeah, I can see what she's doing....."

Me:
"Do you think it's status? (But I know the answer, so I offer it) or the encephalopathy?" (Man! PLEASE think it's status!)

Chief:
"No, I think it's just the encephalopathy."

Me:
(STINK!) "Yeah.......Hey! Can we tweak the meds?"

Chief:
"Well, may-beeee. A little."

Me:
"So I should call when it gets worse? What are we going to do if the Felbamate isn't working? I mean, she's already going downhill.......what do we do then?"

Chief:
(Silence. Writing on chart.) "I don't really want to answer that."

Me:
(Not getting the hint....yet.) "Comon' Chief, it's ok, what is it? Just tell me." (Ohhhhhh, wait, I'm getting this now.)

Chief:
"I just really don't want to answer that."

(Writes on the chart) "Because there's really not a lot of..........options left ......."

(Silence) "Um, I guess I just answered that."

Me:
"Yeah............you did."

***

The implication of this little "face à face" hit me as I drove home.

"No options. No options. No options."

There's always been options.

Why did he say that? There's always been options! There's still more options!

There's Vigabatrin, and VNS, and the diet again, and, and, and......

But they're not good options.

And I know that.

But I had to make him say it.

And I cried on the way home.

***

She got worse as the day went on. Drooling more. Slurred speech. Starting sentences, but never finishing them. Her fingers started to cock into odd poses. Like your funny Uncle Norton used to do to act like the boogey man. But it wasn't funny, and she wasn't acting.

I remember the posts I wrote when she was better, and I cherish them. Perhaps.......perhaps they are the last times I will see her that well. Who knows. Certainly not Chief. Certainly not me. Only God, and He's not fessin' up.

So my heart's been heavy since this appointment. That quiver's been in my throat just thinking about it. Thoughts and flashbacks and dissertations just running through my mind. And I'm starting to think: What are we doing here? This is all just not working. Why are we bothering? To prolong her life? What for? So she can see and not eat? Hear and not respond? Feel and not react? What kind of life is this for her? Not to mention the devastating side effects of the meds. Where is my little girl, my child, in the middle of all this?

And then I get my answer in the form of an old hymn. That falling child, falling ever so quickly into a silent little world, ruled by a broken brain........who could not finish a sentence, or hold a cup that afternoon. Starts to sing:

"Great is Thy faithfulness."
"Great is Thy faithfulness."
"Morning by morning, new mercies I see."
"All I have needed, Thy hand hath provided."
"Great is Thy faithfulness, Lord unto me."

Loud and with excitment. Jumbled words trying to keep up with the meter and time. So different, yet so beautiful. Singing with little thought of anyone else.

And I realize:

If I'm going to be gluttonous about anything, it should be about holding her until the end.

And leaving some of the questions unanswered.

I think there's less punishment that way.