The eyes of God

For the first four and a half weeks of her life, Julianna woke up slowly, her eyes slitting one at a time, and only after a long warmup did they open all the way. At times, I felt a little shiver when I saw those eyes on me. Such a frank gaze, so uncomplicated—and so piercing, despite its gentleness. More than once I thought they were God’s eyes staring straight through me, down to the core of my being.

It is a totally different sense than what I experienced with Alex when he was her age. For Alex and I, looking in each others’ eyes was the long gaze of lovers memorizing the contours of each other’s faces. With Julianna, it is humbling. Unsettling. I squirm as her gaze lays bare my selfishness, my pettiness, my unwillingness to suffer. I recognize my own failings when I look in the eyes of this child who has endured more in her first month of life than I endured in my entire childhood.

During her week-long stay in the ICU, she was drugged, and we barely saw her eyes at all. But since she came out from under sedation, my daughter is like a different child. A few minutes ago, Julianna woke up and started crying. I went to the blue-barred hospital crib and started patting her little bottom to try to lull her back to sleep. Instead…POP! Those little eyes snapped wide open, and she stared fixedly at me out of deep charcoal-gray orbs. It was shocking to see how round those eyes are…how alert she is at six and a half weeks old, after sleeping for a whole week. And for one fleeting moment, it was like looking in a mirror. I saw myself staring back at me from those eyes, those eyebrows.

And still, they were God’s eyes.

God’s eyes, staring out of my eyes.

After all the curses I have flung at Him in the last few days, still He gives me this beautiful gift.

Clearly, I still have a lot to learn about God.

Apropos of nothing

For all you medical types out there, can you tell me why you need the words “intubate” and “extubate”? How much harder is it to say “Remove the tube”?

Julianna and I left the Pediatric ICU yesterday. In the last nine days I have learned a lot of new terms. Sats. Leads. PEEP. Pressure control. Room air. Correlating. Nobody should know as much about their child’s respiratory rates, heart rates, oxygen saturation and chest X rays as I have learned.

On the plus side, however, I now can write about hospital stays with some authority. I know that’s going to come in handy.

It really stinks in here. Stinks, I mean, like sewage. I thought it was diapers at first. But no, it’s not. I think we have a plumbing problem in the building.

I’ve spent this time doing what may be the last edits on my novel, The Beggars’ Queen. (It’s up to my editor.) My husband rolls his eyes when I tell him I’m “done,” because he knows better by now. This novel began as a pretty silly fantasy written in high school. I always called it a “story,” and I was very self-conscious about it. I still am, truth be told. But over the years it has grown into a very involved, complex plot with many subplots. And now that someone else has deemed it worthy of reading, I’m growing more confident.

I started a new book a couple of months ago, and after 5 chapters I ground unceremoniously to a halt. It took a couple of weeks before I realized why. I hit a scene involving a character I don’t like. With The Beggars’ Queen, I finally learned to understand all my characters—even the villains—and that allowed me to enjoy writing about them as well as my protagonists. With this new work, I don’t know the secondary characters yet.

Since I no longer have the luxury of spending 15 years writing a book, I have to do some character study before I get back to writing. But then, I’m a little preoccupied at present.

So...

All of the leads on all of my daughter’s monitors—heart, respiration and oxygen saturation—have ceased to function in the last hour. An hour, mind you. And the nurse hasn’t come in yet. Now I would like to know…why do we bother having the blasted cords hanging off her if the staff doesn’t care when they stop functioning?

Of RSV, VSD and UMC

Do you ever feel like you are crisis-hopping?

Since Julianna was born, that’s all we’ve been doing. We kept thinking things would settle down once we got home from the hospital, once we got past the specialists’ visits, once Alex got used to sharing the spotlight.

But around the first of March Alex came down with bronchitis. We groaned and hobbled our way through four horrific nights of wheezing, crying and waking every hour (plus the two night nursings), and thought OK, this is it, we’ve hit the worst, it’ll get better now. But then he woke up better one morning—well, with a horrible cold instead of a wheeze—and Christian and I promptly succumbed to the bad cold.

And then, last Wednesday, Julianna started coughing. We went to the doctor, who said it’s a virus, and it may get worse before it gets better, just keep pumping to keep your milk supply up and let her rest, yada yada.

That worked until Sunday morning, when we landed in the hospital at UMC with a positive blood test for RSV. First we thought it was just for observation overnight…she has a VSD (a hole between the lower chambers of her heart), and so they didn’t want her heart to be strained by the breathing issues.

Her oxygen was good, and she nursed well till midnight, when she was too tired to nurse. At 2:08a.m. she woke me up coughing and wailing, and the nurses descended. She had a 103 fever. Then it was IV and catheter and blood draws and arguments between Pediatrics and Family Practice about whether she needed a spinal tap, and I thought, oh Lordy, it just can’t get any worse.

But it did. At 7 a.m. they woke me up and said we were going to the ICU. “Step-down” status only, they assured me, just in case. And they sent me home to rest.

No sooner had I gotten home than the phone rang, and it was a ventilator and a feeding tube. Oh God, it just can’t get any worse.

Christian left work and took up residence in the ICU, so I stayed home with Alex. Along about 2 in the afternoon the army of medics told Christian that she was going to be in the hospital for perhaps as long as three weeks. It was the last straw. Surely, surely there was nowhere to go but up!

Then, last night, I got a sinus infection.
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Last Saturday afternoon I had reached the point where I was refusing to ask God for help. I was sending some pretty vitriolic thoughts Heaven-ward, let me tell you. “Every time I ask you for help, you sick bastard, you send me something ELSE to deal with! Fine! I’m not going to talk to you anymore, then!”

At urgent care on the way to the hospital, it suddenly occurred to me that maybe it’s not God who keeps sending more and more for us to deal with. Maybe it’s the Devil instead. At any rate, a person of faith can’t keep screaming at God for too long. It shakes the whole foundation of what keeps you going.

And today (Tuesday) the news is better at last. Chest X ray looks “better,” they are steadily weaning her off the oxygen and the ventilator, and she’s holding her own.

And maybe…just maybe…when this is all over, and our beautiful baby girl is back at home where her brother can love on her (and lay on her, and bounce her till I cringe, and run toy trucks up and down her body)….just maybe, things will settle down at last.

Where to begin?

I’m five weeks postpartum, and I’m wearing my own jeans.

There, that’s a good crow to begin my blog. I’ve been procrastinating for weeks, simply because I couldn’t think how to begin.

So I might as well begin by introducing myself…we are, after all, the product of our many influences. I hail from a little town called Moberly, Missouri, where I grew up on one of the few family farms that survived the 1980s. There were 4 girls and one bathroom. (My poor dad.) My dad is still a farmer, and my mom has now entered the political realm.

I’m a Virgo, not that I put much stock in that sort of thing.

I am the proud mother of a 22-month old boy named Alex who is absolutely perfect (except of course when he’s not), and the mother of a 5-week old little girl named Julianna, who is perfect in a whole different way, being a child with Down Syndrome. And no, we had no idea before she was born. It makes for a different birth experience than you dreamed of.

Christian and I have been married for 7 years. We met in a music group at the Catholic Student Center at the University of Missouri, and now we lead a contemporary music group across town. I write music (check out World Library Publications and GIA Publications...eventually--they're still in process) and I write fiction and nonfiction. (Check out www.thewildrosepress.com --also in process.)

I am passionate about music, good food, reading, writing, true Christianity (as opposed to pious platitudes), children, family and friends...to name a few. And I have opinions on everything else.

But I don't have a lot of time to write them.

That's probably plenty for now, since I don't imagine anyone else finds me quite as interesting as I find myself. :) So join me next time while I pull out one of my passions--food!