Saturday, November 3, 2007

Fate and Hope


After our son Will died, I vowed never to write another blog.

That resolve was weakened a few times, but never broken. Bored, I once toyed with a blog chronicling my stuffed-animal winnings at the crane game. The idea lasted 10 minutes. As did my idea about filling cyberspace with musings about my dog, Lulu. Both were too trite, too full of piffle to bother.

Mostly, though, I never wanted to write another blog because Mo and I never thought we'd be in this same situation again. And if we were, I promised, I wouldn't want to try to contort a difficult situation into a good one again with flowery words, witticisms and chin-up exhortations.

In the end, we didn't want to blog because we didn't want to repeat history.

Fat lot of good that did.

Nearly three years after Will's birth, Oct. 15, 2004, Mo and I once again are graced with a growth-restricted child with health problems and a genetic condition who likely will be in the hospital a while. Hope Beatrice Kurth is a 3 pound, 15-ounce, auburn-haired beauty with big, bright eyes, pudgy cheeks who looks like neither of us. She is a spitting image of her big brother. And it took doctors about four hours to preliminarily diagnose her with the same condition that contributed to his death.

We fought so hard, prayed so long and employed every superstition we know to avoid this fate. We were assured the condition they likely have, Cornelia de Lange Syndrome, is a random genetic mutation that doesn't strike twice. We read the fine print -- 1 percent of families have more than one child with the syndrome -- but barely acknowledged it.

Instead, we worked like the dickens to control outcomes that we couldn't. We developed rituals to ensure fate wouldn't strike twice. Will came out of the blue. Mo was 32 weeks pregnant, measured small on Tuesday and gave birth via a "not-quite emergency, but we better do this quick" C-Section.

When we learned Maureen was pregnant in March, we thought we learned our lessons and steered clear of bad mojo. We had well-defined taboos: Don't park in the hospital's parking garage during ultrasounds, don't arrive late and don't talk about lunch plans in the examining room. We did all those things with Will, and he was born about 17 hours later.

This week, walking through the same Neo-Natal Intensive Care Unit we swore we'd never again visit, exchanging awkard hellos with doctors and nurses we never thought we'd see, I was struck by lessons from high school Latin.

My teacher didn't always comprehend the concept of "Latin," so we read a lot of Greek fables. They had a recurring theme: You can't escape fate. Achilles' mom could dress him up like a girl, but he'd still die in the Trojan War. Oedipus' dad could leave his son on a mountain to die, but he'd still grow up to kill him.

You can't escape fate. And having a child with challenges is ours.

That's where the morbid analogy ends. Those are lessons from tragedies, and Hope is anything but.

She is a wonderful, beautiful, squeaky little fussbudget who is already making us so proud. Her first three days on earth were chock full of tests: three echocardiograms to pinpoint progress with a few heart abnormalities; an EEG on her brain to ensure she didn't suffer seizures in utero; a full skeletal X-ray; and ultrasounds of her brain and major organs to verify they're all OK.

They are, and she's passed all her tests with aplomb. She's already doing little things that most parents take for granted but amaze us because Will never could. She's breathing on her own. She is drinking milk from a bottle. She has graduated from a heated platform that allows doctors easy access in case of emergencies to an enclosed incubator. Hope is doing so well there's murmurs a regular ol' crib could be in her near future.

Mo went home from the hospital today. She's still in a lot of pain from her C-Section, and it's so hard to leave your beloved little girl in the hospital. This is going to be a difficult, but rewarding journey. There's already been so many tears, late-night anxieties and big questions that can never be answered and will drive us crazy if we try.

But this is our fate, and we accept it. The situation may seem eerily familiar, but the details so far are better. Hope's delivery was as it should be: A nerve-wracking, hand-gripping, "Oh My God, What Are We Getting Into?" miracle. Unlike with Will, no one asked us if we related 15 minutes later. The doctors we used to view with suspicion are now kind. Most importantly, our girl seems to be doing well. So we count our blessings.

Some things haven't changed. The hospital soap still smells the same, the food is still lousy and the NICU still sucks.

But things will be OK. Sometimes, the fate you fear the most just isn't so bad.

11 comments:

beth said...

Joel, you write so well and are so eloquent. We love all of you bunches and are so proud of you and Mo. Can't wait to see my niece and spoil her rotten. Two weeks!

Love,
Beth & Rob

Revolving Door said...

The name Hope inspires in all of us of a great quality needed for trusting in God's gifts as they are given!!!!! Life is a gift to be shared and fruitful.

Love, Grandpa & Grandma Feighan
xoxo

Jackie said...

My thoughts and prayers are with all of you. Hope is absolutely precious.
-Jackie (Molly's roommate)

Pam said...

So good to see you all, and a big sigh of relief that you all seem ok. I may be far away, but I'm along for the ride! She is absolutely GORGEOUS! and I'm so glad she's a redhead...let the fun begin!!
Love you guys!
Pam

Karen Bouffard said...

Is it just me, or is Hope trying to smile? Sure looks like it! Joel, are you ready for another fiesty redhead? I think she has some of her mom's Irish in her. I'm so happy for you both!

Warmest regards,

Karen

Shantee' Woodards said...

Congratulations! She's beautiful. I'll keep you guys in my prayers, as always.

Love,
Shantee'

Gary said...

What a beautiful, beautiful, beautiful little girl! You 2 are soooo lucky! You have your love and also the love of Hope and Will. Isn't parenthood just a "kick in the pants"? There's nothin' better in the world! We cannot wait to see her in person!

Love,
Gary, Lucy, Alex & Jeff La Hood

Aunt Norm said...

Such a little beauty. Trully good things come in little packages. Already looks like this little one has Mom and Dad around her finger.
Joel, you are a gifted writer, thank you for sharing this adventure with us. Keeping my fingers crossed she'll be HOME soon!!! Lots of Love,
Aunt Norm & Uncle Tom

Amy said...

Congratulations Joel and Mo! Hope is absolutely gorgeous! What a cute little bugger! I'll keep you guys in my prayers, and am overjoyed that she's doing so well already! I'll keep checking the blog for updates -- an awesome tool for us out-of-towners, though I hope to meet in person soon!

Love,

Amy Lee

Margy Lee said...

"Hope" is a thing with feathers--
That perches in the soul--
And sings the tune without the words--
And never stops--at all--

These words of Emily Dickinson came to mind immediately when I read your blog. Your little Hope is certainly perching in the souls of everyone and singing sweetly. Congratulations!

Reba said...

Little Hope is just beautiful!
My dad shared this good news with me today. Thank you for sharing it with all of us. We'll continue to keep your family in our prayers.
Reba (Geromin) Bloom