Thursday, October 19, 2006

Felbamate Drinks Straight From the Jug

So, I told Chief today at our routine appointment, that Chris and I feel as though the Honeymoon is over.

The Felbamate honeymoon, that is.

That period of time after starting a new drug where everything just works, and life is going great again.

Where we, as parents, tend to think, "Maybe we finally found it...." The Super Drug. The trump card. The Holy Grail of pharmacology.

The one.

And then.....real life hits, and Felbamate is starting to leave the seat up on the commode.


You see, with that new beginning, that special time, that wonderful bliss called a honeymoon, no one sees the problem areas. No one minds the little nuances and irritations that accompany a new relationship. You're too much in love. Enjoying a whole new concept in life. Focusing in on all the really awesome things that is your "better half."

And really, sometimes those problem areas really aren't there to begin with.

But time moves on, and both parties relax.

And true colors come out.

Such is life with Felbamate.


We have since discovered, in the 8 months that Michaela has been "married" to this drug, that Felbamate has it's annoying habits like "everyone" else:

The smelly socks in the middle of the living room floor.
Squeezing the tube from the middle.
Leaving lights on in every room.
Drinking straight from the milk jug.

Granted, it was the longest honeymoon we think she's ever enjoyed. Probably about 6 months or so. 6 months of pure bliss. It was just awesome. Felbamate was what you would call a perfect gentleman.

But, as time went on, those little irritations became more prevalent. More noticeable. And they wouldn't go away as quickly as they once had. I guess you could say it was a matter of predictability. Where we once could understand what was going on with her, and even almost "time it", we're now in the dark most every day. Wondering how she's going to respond that day. Function that day. Need that day.

Her condition will even tend to change from hour to hour. At one point in the day, she'll be playing with some blocks, chatting with her sister. Come back an hour later, and she's a zombie; drooling profusely, non-vocal, mindless.

Felbamate is just not the partner we thought it was.


Don't worry, though. We're not getting all bent out of shape over the Slob that is Michaela's latest beau. As you may have already guessed--we're used to it. I guess the problem in the past revolved around how to handle it in a practical way. She would slump, and we didn't know how to adapt to this newly minted handicapped child. One day she's fine, and the next she's an invalid? It really rocked our world. But now, it's not like that. We have most anything we would need at our fingertips: all the medical equipment and prescriptions (like special formula) and home help one could ask for. And if we find that something else is needed (like the shower chair I needed the other day), help is only a phone call away (or email, right Chief?).

Yet, we suspect, that in the near future, Michaela will end up dropping Felbamate like a celebrity marriage. Here today, gone tomorrow. And take on another suitor. Not that I'm pro-divorce. Let's make that clear. But it's not my life, and it's not my brain. It's Michaela's. And her brain can't handle super drugs with bad habits. Or so it seems.

(But if you ask me, and I believe Chief would concur, I think Michaela's brain is the unfaithful party in this relationship...)

Ahhh, well, Felbamate. It was a great honeymoon just the same. You'll make a perfect match for someone someday.

Sure wish it were Michaela.


J. No said...

Allegory usage at an all-time high.

Alabamabrands said...

I'm sorry.

I did enjoy you analogy though. You have an amazing way with words.

We'll keep praying.

matt said...

Kell I don't know how you do it but you have a great way of using metaphors and to get me to cry when you do posts like this one. Don't forget we have the Great Physician who will make her faithful the same as himself. We will contunue to pray!

JeniBeans said...

Ahhh, the old socks in the middle of the floor, eh?


Denna said...

I am sorry. We pray for you guys all the time. I know God can help you through this time.
The way you use your words is to funny. I guess your humor helps you through these times.
So I take it you mean Chris with all the socks on the floor, lights on. Thanks for letting us know. I will make sure we don't drink milk at your house again. If we ever do that chocolate gravy, I will supply the milk. Love ya,