Friday, November 30, 2007

The good, the cranky, the tired.

I was eavesdropping today on a bunch of women who were listing their favorite things about their husbands. One lady was very sad, as this topic brought up painful memories for her. I have to admit it made me a little twitchy.

But (and it's a big one), I have so many very good memories. Like Halloween '96 when we had set out our three little carved pumpkins, one for mama, one for daddy, one for little G, and I said, "Wait just a second! I have just the thing to make this perfect." I popped back inside and grabbed the perfect thing. When I held out the tiny punkin to add to the tableau next to our front door, the little stem of it tied with pink and blue ribbons, and his face showed the slow, spreading realization that I was making an announcement, well, it still makes my tummy all wobbly.

Or how about the time that a guy, oh, about 60 years old, at the church potluck went all through the room asking the hospitality ladies who had made that casserole. Why? So he could track me down and tell me that it was "the worst thing I've eaten at a church potluck since I was twelve." A certain someone hied himself off to demand, albeit courteously, that the man apologize to me. Even then, I found the man's actions bizarre enough to be silly. But the fact that a certain someone would go tell him he daren't speak to a certain someone's beloved like that? Color me speechless, baby. Talk about a white knight. I felt like the adoring girl who stands on the sidelines, hands clasped beneath her chin, head cocked, batting her eyelashes, and swishing her cheerleader skirt at the star basketball player. Boy oh boy, was I doing all that and more in my head. (It's tough to actually swish your skirt at someone when you're chasing after four little children.) And you know, every single person I knew heard that story and how a certain someone stalked off after that ill-spoken man. What a guy.

(Funny thing, the man did apologize, profusely, and the three pans of the casserole completely disappeared. Folks even asked for the recipe. Ha. I credited a certain someone with all that.)

Then there were all the times we took him lunch and dinner in hospital parking lots when he was on call. Sometimes we ate together, sometimes I read bedtime stories to the already bathed and pajama-clad kids while he ate, so we could enjoy being together as a family. Having family goodnight prayers together after. Saying our "three good things" for the day. Man, that was precious stuff. And the lingering, soul-searing kisses through my open driver's side window as I was taking the littles home to bed and he was returning to his patients were, um, memorable, to say the least. We kidded about the possibility of an attending spotting him making out with his wife in the dark. With a mini-van full of kids. Heh.

(dot, dot, dot)

You bet it's equal parts sweetness and agony to recall those things. But the memories keep their strength. They make me smile. I don't know what the sad lady's history is. God forbid it is violence or abuse of any kind. Perhaps she, like many others, feels keenly the absence of what she once had. Perhaps she longs to be included in the club which cheerily lists their husband's best qualities, even if they have to think for a second as they refocus amid their daily responsibilities. Whatever it is, I wish her peace. It's never any fun standing on the outside looking in, is it?

What a day it's been.

Getting out the door to Q's neuro appointment, I was so frazzled that I left my wallet sitting here. I'd even come back into the house for it, but in the goodbyes to the kids, I left it anyway. My checkbook had no checks. I found a dollar in the diaper bag. (Why do I have a solitary dollar in the diaper bag? Maybe S put it there...) Well, no big thing. I'm just going to the neurologist, right? Okay. No need for funds here. So how does one get out of the parking garage without any money? Turns out they write down your license plate number and give you an envelope in which to mail a check. You may think I'm reaching over the top for this, but I'm telling you, it jolly well felt like a miracle.

I got home after all that, went to run some more laundry, and the washing machine was leaking. Wah. It's been one thing after the next all day long.

On the bright side, the neurologist smiled all over Q again. He talked about his tone and reflexes improving a bit. Q's neck and truncal responses are a bit steadier. He works harder to right himself when tilted. When the neurologist asked how Q was doing, I related that Q says "hi" and "go" and vocalizes appropriately--all those about a third of the time, maybe more often, when he's asked to speak as a part of his therapy or play. He often giggles madly when he does, so proud of himself for nailing it. About another third of the time, he gets the vowel sounds. And perhaps another third, maybe less, he changes his position, looks at the person asking something of him, or changes his breathing to answer what's been asked. His level of response seems tied to meds, illness, and some other mysterious piece of the equation that no one has yet revealed. The neurologist talked about augmentative communication devices, or "Aug Com" devices and therapies. He talked about switches, of which Q uses some already, and assistive technologies, such as the computer, which Q got to try out for the first time two weeks ago. He had to hit a button to make the monkeys dance on the bed and sing their song. He thought it was pretty cool.

I asked about meds adjustments. We're going to try going without the morning dose of clonazepam to see if Q would be more awake during the day and perhaps better able to moderate and make good use of his tone. It should be fairly non-eventful, since the dose is tiny and Q hasn't had such exaggerated startles when falling asleep. We'll see soon enough. As for the trileptal? If Q remains apparently seizure free for two years, then we'd do a repeat EEG and perhaps remove him from the drug on a trial basis. Two years began in February. So we're closing in on a year without anything that looks like a real seizure. Can you believe it's been that long? And yet it feels like a millenia, give or take a century.

I keep wondering if he really had seizures or if it was just some funky startle thing... Who knows. The EEG certainly supported the idea that seizures were plausible, likely even. And most kids with diffuse Polymicrogyria would definitely have seizures.

At this point, I just want him to be sitting on his own for extended periods. He's made it a whole twelve seconds so far. Happy dance! I heard somewhere that the rule of thumb is that if a child sits by the age of two, he'll likely walk on his own. If a child does not sit by the age of five, it's unlikely that he'll ever walk unaided. I've no idea as to the veracity of such statements, but there they are.

Regarding Q's motor skills, he went after a couple of pencils that were in his range today and succeeded in knocking one to the floor. He tries to roll, most of the time anyway. He played tonight with this favorite toy. It's tissue paper. It makes a nice crackly sound, it's not completely opaque, and it's lightweight enough that he can easily move it around to play peek-a-boo with himself. I'll have to write more later about Q's visit this week with the EI/SpEd vision therapy lady and the new EI/SpEd teacher.

And about meds: I'm still waiting, what, ten days now? To hear about "prior authorization" for antacid meds for Q. I talked to the pharmacy, the doc, the pharmacy, the MA, the pharmacy, the pharmacist, the various locations fax back and forth, and then I find out that we're right back where we started. I have a whole post right there.

I'm just tired. I'm tired of everything being off because someone's missing. I'm tired of having to figure everything out and execute it by myself. I'm tired of cranky people. My whole life is full of blessings, yes. They are innumerable and we are fortunate beyond comprehension to have so many wonderful, dedicated, loving people working so hard for good things to come about for Q, for G, for the girls. Truly. It's incredible. Miracles show up on a regular basis, people offer things out of the clear blue sky, we have what we need as well as a completely inexplicable extra measure.

And yet... Sometimes the enormity of it all sort of creeps up on me and bashes me over the head.

Meh. I'm just tired. I'm sure it will all be better in the morning. It always is.

Peace and rest to you. I'm off to grab the same.


Anonymous said...

Of course you're tired, friend.

Thanks for sharing the beautiful memories. And all the rest of it. Made me cry and cry.

You are so strong I don't know how you keep it up. Miracles happen, and we'll keep praying one is headed your way.

I'm glad to hear all the progress with Q. I know the medical runaround is never-ending. But just think of all the gold stars you are earning!

Wish you were closer to give a hug, so here's a virtual one (((friend)))

Kay in Cal

BBA said...

They are all growing rest will come.

Zoo Keeper said...

I'll just echo Kay. Wonderful, wonderful about Q. What a precious little guy.

He might like Elmo peek-a-boo on the sesame street site... I'll try to link it. Hit any key and elmo (or a buddy) pops out and says something.
Elmo Peekaboo

Zoo Keeper said...

Ok here is that link again.

Elmo Peekaboo