Wednesday, April 12, 2006

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.

10 comments:

JSmith5780 said...

Kelly- so sorry to hear the appointment wasn't what you expected. I am a new participant to your journey, so I don't know all the testing you have been through. There are still options...Vig being one of them. I assume she's had a PET and SPECTS? Could they offer nothing on brain structure, blood flow, glucose use? My friend's son had LKS (Landau Kleffner) When things were at their worst, they found a surgical procedure. It literally saved his life. Another parent's child was found to have MoyaMoya. Everyone thought she wouldn't make it after her last stroke, but she survived long enough to fly to CA and have surgery. Keep looking, you will find the right answers (even, God forbid, if the answer is acceptance). I am praying those answers are found soon.

Jen mom to Austin, Ben & Connor
austinbenconnor.blogspot.com

Denna said...

Oh Kell, I am so sorry you are having to face this. I have tears running down my face. You seem so strong, yet I know you are hurting. Hang in there sweetie. I love and appreciate you. I will be praying for you. Always remember that in OUR weakness, God is our strength.
Denna

Kate said...

The Wait Poem

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate...
and the Master so gently said,"Wait."

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!"
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.


My future and all to which I relate
hangs in the balance and you tell me to Wait?"
I'm needing a 'yes', a go-ahead sign.
Or even a 'no,' to which I'll resign.
You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
Lord, I've been asking, and this is my cry:
I'm weary of asking! I need a reply.


Then quietly, softly, I learned of my fate
as my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
and grumbled to God, "So, I'm waiting...for what?"
He seemed then to kneel, and His eyes met with mine...
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.


I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of My love for each saint.
You'd not know the power that I give to the faint.
You'd not learn to see through clouds of despair;
you'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
when darkness and silence are all you can see.


You'd never experience the fullness of love
when the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.
The glow of My comfort late into the night,
the faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.


You'd never know should your pain quickly flee,
what it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
but oh, the loss if I lost what I'm doing in you.
So, be silent, my child, and in time you will see
that the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still "WAIT".

Love you Kelly,
Kate

Danielle said...

Oh Kelly :(

Mete said...

I'm so sorry to hear that. Here's hoping that there's an explanation for her relapse... maybe she's getting sick or something that is interefering with her meds temporarily.

Either way, you will love her. You will help her. You will make the most of her life, whatever that is. One day at a time.

t . said...

"...I will never leave thee nor forsake thee." - Heb. 13:5

I love you Kel.

sis katie said...

Amen Boo

Jeremy said...

Weeping may endure for the night...but joy always comes in the morning...

Keep your head up. God's on your side.

Brandon said...

Phil 4:7
"And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."

Sometimes it's beyond our comprehension how that God can give us such Peace in such unpeaceful times... but God is like that. Look for that peace Sister and think on the good things (V. 8).

Dana said...

I read this blog for the first time today 4/24, and Kelly I just cried. I knew this was reality, but to see it in writing. Wow. For those who don't know, I am Michaela's teacher. This precious child is a joy who brings a smile to my face every single day. She is a priceless gift from God who is touching lives all along her way. I so loved talking to her on the phone this afternoon. Kelly, I admire you for your strength and endurance and I pray that God will continue to give you what you need to help Michaela. I know He will. Michaela, I Love You.