Sunday, November 23, 2008
In Michigan, these days, doom is inescapable. Pick your cliche: Rolling fog, tidal wave, ship careening toward the rocks, plague or pox, despair has become an entity, an awakened Golem on the march to wipe away life as we've known it.
The Big Three is dying. Deputies taped foreclosure notices to the house two doors down. The value of our home has crashed. Friends have lost their jobs. I haven't opened a 401k statement in months.
We do well if we only worry about the economy and discuss our fears -- and options, such as they are -- once a day. We rarely succeed. I tell myself it's an abstraction, numbers on a page, nothing more than worry.
And sometimes, like yesterday, I'm reminded that's all it is.
A little boy we never met named Nicholas died. He was 4. He has CdLS. His parents thought he had a cold. They put him to bed. He didn't wake up. Mo found out through a Yahoo discussion group about the syndrome.
She was crying when I got home.
"I don't care if our house is worth nothing," she said. "I don't care if we lose our jobs. I just don't ever want to lose Hope."
The night Will died, we held him and made certain promises. Chief among them: We would never forget what's really important. We've tried. We haven't always done as well as we could. Sometimes we need a reminder.
So thank you, Nicholas. Rest in peace. Our deepest sympathies.
Wednesday, November 19, 2008
Big splash on the front page: "THIS GUY IS A DIRTBAG!" Then, nine months later, the case winds its way through the machinations, memories fade, the news trudges forward, more scandalous dirtbags emerge, follow-ups get fewer and farther between until -- woopsie daisy -- a blurb is printed on page 43B reading: "Allegations of alleged dirtbaggery allegedly could be unfounded, prosecutors allege."
Critics call it a conspiracy by dirtbag newspapers to rake muck. I say it's human nature: Crises and scandal always get more attention than process, minutia and murky outcomes. When the answers aren't always clear-cut or better than you initially feared, it's even easier to forget the initial problem.
This blog is no exception. In that vein, here's some answers to issues that no longer loom as large as they did a few months ago and some that do.
The spitting of blood: Once a weekly nuisance, it's faded considerably in the past few months but hasn't disappeared. For about two months this summer, Hope would wake up crying. We'd rush into her nursery and see her laying next to a pool of dried blood. We did two endoscopies to pinpoint the problem.
Old pal Dr. Spitenup concluded it stems from her hernia and stomach rubbing against her esophagus. His solution: Well, it stinks, but it doesn't bother her, so live with it. We investigated on our own and believe it was exacerbated by supplemental oxygen fed through her nose as she slept. We have a good friend with cystic fibrosis who uses oxygen. She reasoned that the oxygen dries out her nasal passages, leading to blood that Hope swallows, and then eventually spits up.
We stopped using the oxygen at night. Viola. No more blood twice a week. But the issue persists. A few weeks ago, Hope awoke coated in a mammoth pool of blood so old it was black. We think it was from the rubbing of the hernia.
The eyesight: Six months ago, Hope's eyesight was tested as a matter of routine. The opthamalogist, a kindly, geriatric fellow who inhabits a wood-paneled office that looks like a hunting lodge and I'll call Dr. Speakupsonny, found that Hope was extremely near-sighted and would need glasses when she turned 1. We were crushed. We always thought that, given her hearing issues, it was highly unfair she'd have to wear hearing aids and glasses.
We had a follow-up appointment on Election Day. Dr. Speakupsonny found that her vision has improved, but she'll probably still eventually need glasses. We return to the hunting lodge in six months.
The laryngomalacia: Hope wheezes when she breathes because her larynx is floppy. It's a fairly common, and mostly benign, condition that most kids outgrow by about eight months. She hasn't. That's probably because she is so small. At the rate she's growing, it could be an issue for another 2-3 years. This remains a cause of concern because she could have a very difficult time breathing if she catches a bad cold. Once again, this year, she is having the monthly Synagis shot, the uber-expensive shot to ward off RSV (a respiratory virus) that is recommended for preemies. Dr. Frosty also worries that she's expending so many calories breathing that Hope has a harder time gaining weight. There is a surgery to correct the issue. We are exploring it.
The teeth: Six months ago, I foolishly wrote a blog item proclaiming that Hope was teething. She still could be. But there is little evidence of it. Children with CdLS take forever to cut a tooth. The tooth fairy got tired of waiting by the door, checking her watch and tapping her feet, and was last seen speeding away in a used K Car, listening to, of all things, "'99 Luft Balloons."
The heart: Learning my lesson from the teeth, I am declining substantial comment. For about two months, soon after her birth, this was our biggest concern about Hope. Six months ago, we were told the situation looks good. We have another follow-up appointment soon. I ain't saying another word.
The Dice-K: For weeks, Hope's favorite friend in God's green Earth was a teddy bear of Red Sox pitcher Daisuke Matsuzaka, also known in this age of lackluster nicknames as Dice-K. Lulu ate the doll. My sister faithfully mailed a duplicate. Alas, love is fleeting at a tender age and Hope's affections have wandered. Her new love: Big plastic cow on wheels.
The cutie: I am doing fine, thank you very much. And Hope is getting cuter by the day.
Tuesday, November 18, 2008
One year into raising a special-needs child, we're realizing the worries never go away. Sometimes, they're more prominent than others. Sometimes, they rotate. But they're always lurking, ready to leap up, grab your lapel and say, "don't get so comfortable."
We're still not sure what to do about Hope's weight. She's about 9 pounds at 12 1/2 months and is stubbornly clinging to the 10-15 percentile in the CdLS growth chart. It's a chart that is heavily skewed toward small, so she is on the small side of tiny.
So far, we've erred toward caution and non-intervention because her height and weight are proportional. But the experimentation never stops. Eager to squeeze in a few more calories with every feeding, we've added coconut oil, butter, heavier formula, and myriad combinations in between. Our kitchen sometimes resembles a mad scientist's lab, with carefully calibrated concoctions prepared with blenders, heated, then cooled oil and syringes. This week, we're beginning to try to wean her onto Pediasure, a calorie-rich milk substitute that tastes a lot like rich, chocolatey Ovaltine.
Often, the experimentation works. Others, no. The frustration comes with the vicissitudes. For weeks, Hope will eat like a linebacker, devouring bottles and fruit with frightening relish. Then there are stretches like last week: Little interest. frequent spitups and tiny triumphs if she finishes half a bottle.
Few variables change to explain why she's just not digging her chow. So we fret and obsess. Is she constipated? Did we feed her too much chicken? Is she dehydrated? How much did that diaper weigh? Should we cut back on the oil, sacrificing a few calories in the hopes that she might make up for it by drinking more formula?
There may not be an easy answer. It's a common issue for those with CdLS. The metabolisms are lightning quick. The appetites come and go. The digestive systems are problematic.
Dr. Spitenup encourages the long view: Slow and steady gains, without getting caught up the daily fluctuations. But that's often easier said than done. So we ponder, second-guess and hope for the best.
Meanwhile, we're happily watching her blossom as a boom, boom, lickety-split player. We finally were able to capture the elusive prey at play on the exersaucer. Usually, she freezes the moment a camera emerges, but we got lucky.
Saturday, November 15, 2008
And does she ever. Round and round, laughing and giggling, Hope twirls from one station to the next.
First it's the big apple on a stick thing. Thwack, thwack, thwack. What could be better? It sways. It's red! Oh life is a joy!
Ten seconds later: Hey, what is this? Big plastic bones that make woof, woof sounds and spin? Twirl, twirl, twirl. Life couldn't possibly get any better, until ...
Be still my heart! It's a green car that goes beep, beep! Tee hee, hee!
And on it goes for about 30 minutes. Hope forgets that we exist. Few are so serious about play. She breathes heavy. She shakes her head. She stares intently at a blue walkie-talkie thing. It has buttons! Wow!
We've tried to capture the frenzy on film, but Hope is an elusive prey. As soon as the camera is produced, the wonder of the exersaucer ceases. She becomes transfixed and stares intently at the camera.
Perhaps we'll have do go the 20/20 hidden camera route and catch her in the act like the butcher flicking cigarette butts onto a flank steak.
It's a sight to behold. Not the butcher. That's gross.
Hope is doing some great stuff for a nearly-9 pounder. She's getting closer by the day to sitting on her own. Yesterday, she made it for 30 seconds before tipping over. This morning, she began banging her binkie on the table like Krushchev at the United Nations.
She has a new stunt that involves vigorously shaking her head, as though she was asked if the Detroit Lions would ever win a football game.
Here's a peek into her evolving repertoire.
Sunday, November 9, 2008
I've been thinking a lot lately about Hope's first year. I wish I had some new conclusions. I've been reluctant to try to write any of them, though, because they're about as illuminating as a Successories poster.
In my heart, this year has been incredibly profound, moving and personal. Trying to capture those feelings in words, though, ends up sounding like a Peace Corps slogan (Parenting: The Toughest Job You'll Ever Love); commercial for a clog remover (Plumbing the Depths of Infinite Love); or a blurb for a Lifetime move (A Forbidden Love, An Unspeakable Crime).
OK, I made that last one up. But it sounds cheesy enough.
The point is, it ain't easy. I guess this is the sort of stuff that keeps poets in business, if anything could. So here goes.
It's been a great year. It's been challenging, rewarding and transcendent. I look back, and I'm not sure I ever recognize that guy from a year ago (but he sure is handsome.) As much as I accept Hope's condition, I've come to realize it's not an instant process. It's still difficult. There's still residual tears of frustration, anger, questions I'm afraid to pose and moments of self-pity.
But above all, there's great love. I'm still humbled that I get to see that little girl every morning, hear her cry, make her smile and pat talc on her bummity-bum. I'm proud she's doing as much as she is. I'm wowed that spending hours knocking down blocks can be so rewarding. If the world has ever built a better tonic that her little smile, I haven't seen it.
Maybe it's that simple: She's got my heart. If she's happy, I'm happy. I guess that is love.
Wednesday, November 5, 2008
Ahh, the perils of blogging. Every once in a great while, between the pablum, the idiocy and forced "ain't I so cute" jokes, you strike gold with something like "The Night the Dog Ate the Hearing Aid."
Not long after the exceedingly rare moments when the heavens align and pour forth USDA AAA Comedy Sirloin, a few hours of smug satisfaction quickly give way to the terror of the next act. Like astronauts returning from the moon, you know you'll never again reach those heights.
So terror gives way to depression, futility and procrastination -- which is one hell of a way to say I have writers' block. Between preparations for Hopes first birthday, trick or treating and the madcap Midwestern urge to decorate every square inch of the house in autumnal bunting, I've run out of anything interesting to say.
That's not to say things are quiet. Hope dazzled as a turkey for Halloween and bumble bee for her first birthday party, which followed two days later.
Somehow, we survived both the party and the preparations. I realized I had crossed a symbolic, never-to-turn-back threshold while discussing the shindig with Mo. I suggested beer, costumes and a great big submarine sandwich that we could eat with French Onion dip.
Her counter: Halloween-themed cookies, finger foods, something called Vampire Punch, phony eyeball meatballs, pass-the-pumpkin children's games and, by the way, you are a knucklehead.
Three guesses who won.