Wednesday, July 30, 2008

(Mostly) Wordless Wednesday

Mo belongs to a fantastic Yahoo group of parents with CdLS children. It's been a big source of information, assistance and a virtual shoulder. Occasionally, members challenge parents who operate blogs to post specific topics -- 10 things about your child and the like.

This week's challenge is Wordless Wednesday. Just a photo of your pride and beauty. No words. Clearly, I already violated that caveat, so here's a few more: The pix is courtesy of my Pop, the acest of the ace shutterbugs in the family. Great as usual. You rock.

Sunday, July 27, 2008

Obligatory vacation video

I'm perpetually amazed at my cruddiness as a bachelor. Some days, when work beckons until 9 and Mo hands off Hope the moment I return home, I fantasize about weekends like this: Nothing to do, nowhere to go, no alarms to monitor, bottles to mix and nary a chore in sight.

Thirty-six hours removed from Mo and Hope, I have regressed to that Scary Dude. You know the one. The guy who hasn't shaved in a week and smells of body odor and TAG spray to cover it up. The weird one who goes to the grocery store in his lawnmower shoes with no socks and buys three frozen pizzas, a case of beer, two bags of chips and smiles proudly after tossing a pound of ground chuck in the cart because it now contains actual "food."

I tried to keep busy in a half-hearted, layabout way. I mowed the lawn, but convinced myself it was getting too hot to weed-whack. I resumed some long-neglected wall painting. I screwed both up: One is the wrong color; the other is splotchy from a lack of sanding.

Another two days like this and I'll be amazed if I'm not lying in my underwear on a sheet spread out in front of the television, stray cans of SPAM and Easy-Cheese at my side and pet vomit in my ear.

I can't help it. I miss my ladies. I'm a wreck without 'em. In retrospect, I'm glad I figured out "left shoe on left foot, right shoe on ..." for 12 years between leaving home and meeting Mo.

Maine was a blast. Most of our worries about traveling with Hope proved for naught. She's a Grade A traveler who seems to enjoy the distractions and hubbub far better than lounging at home. She was fine on our frantic trip out, which involved waking up at 4 a.m., transferring airlines and terminals in New York and driving two hours to my parents' house.

She's been to the Maine coast at least four times now and seemed to enjoy those uniquely Atlantic sensations: touching sea urchins, grasping rocks, staring at the tides and all their possibility, smelling the sea air and dodging black flies.

I grew up in Bangor, 40 minutes from the coast. My parents still live there. Some of my favorite memories from childhood seem like cliches straight from Robert McCloskey or E.B. White: exploring tide pools, jumping on rocks, skipping stones, wandering just a bit farther out during low tide, muddying my knees looking for shells and generally wasting time by the water.

It was important to me to pass on those experiences to my children. I've talked to Hope a lot about what we would do when we got there and how much fun we'd have. I made the same promises to Will and never got to keep them, so it was profound to take Hope to Mount Desert Island and dip her toes in the chilly waters.

She cried. I knew she would. But I had to do it. It was a moment too long in the making, one of those instances in which you fore sake your baby's needs for your own. Ever the sport, she rebounded well and delighted in touching granite in no time.

She'll never remember. I will.

Now, if I can just find another 15 household projects or frozen pizzas to fill the void for the next 10 days.

Saturday, July 26, 2008

Photo shoot

Years ago, deep in my bachelor wilderness, I had grand daydreams of fatherhood and what I'd be like as a pop. Long story short, you never fantasize about your shortcomings.

I would rule as a Dad. My awesomeness and generosity would know few boundaries. Parents would lobby me for advice. Like a grand pooh bah dispensing favors, I would impart morsels without giving away the secrets that would come so naturally.

Nine months in, I acknowledge that I'm a pretty good dad who still has a lot to learn. It seemed so easy for my parents. I thought it would be a snap to follow their lead and call it my own. But one thing I've learned: It isn't always intuitive to a 38-year-old who has spent much of his life refining the art of selfish pleasure. Time moves fast and you realize -- holy jeepers -- there's much you planned to do but haven't.

Like having professional portraits shot of your pride and joy. We have hard drives full of Hope's every bray, hiccup and smile, but none captured by anyone who knows what they are doing. It seems like a natural and rite of passage: Put your baby in her Sunday finest, trot her out to the studio, wave a lollipop in front of her face and pray for the best.

Somehow, it eluded us.

Fortunately, my brother, Steve, has willed himself into becoming a professional-caliber photographer. Always artistic and the son of an ace shutterbug, Steve somehow taught himself skills in about a year that it's taken others decades to master. This time last year, I was vaguely aware that he bought something called a ''camera." Today, I am in awe.

Steve converted my childhood bedroom into a makeshift studio, complete with multiple flashes, muted backgrounds and umbrella-type doodads whose names elude me. Our 12-year-old nephew, Matt, was his eager assistant, distracting Hopesy with toys, making silly faces and cooing "Work it, baby" as though he had spent a lifetime on the runways of Milan. Hope did the rest.

The session was cut short by a nasty bout of gas, but we think the results are remarkable. I'm lucky to come from such a talented family.

I left this morning from 10 great days in Maine, taking Hope to the coast, showing her sea urchins, dried seaweed and the salty mud of the Atlantic. We ate too much; celebrated my father's 70th birthday with food of the world, beer and an elaborate barbershop quartet performance with my niece, Kate, and nephew; yukked it up with my generous sister, Beth, and her hubby, Rob; ate my aunt Denise's guilty-pleasure Midwestern dip; watched too many bad movies; and bathed in the glow of the people I love the most.

Mo and Hope get to continue the fun for another 10 days. I get to go back to work. I miss them all terribly.

PS: Much more to report on Hope's first big vacation. Hours of video to distill and photos to sort. But once again, she exceeded our expectations and proved herself a trouper and party girl of the highest order.

Tuesday, July 15, 2008

Big vamoose

My standard line on the eve of big trips is always the same and sounds depressingly oldman-ish: "We have more gear than Hannibal crossing the Alps." With a special-needs child, it's more like the Allies massing at Normandy.

Late Monday, nearly every inch of the living room was covered with stray luggage, toiletries and clothes. There's a suitcase filled with Hope's green Boppy (for lounging), a portable high chair (for eating) and cans of formula. Diapers and baby clothes line the sides. It's weighed on a bathroom scale nightly. 47.5 pounds! Still room for rechargeable batteries!

The Don't Forget Lists are everywhere: Car seat, bottle brushes, hearing aide lubricant, copy of Hope's birth certificate, Mylanta for the vacation, Mylanta for the plane, extra plastic syringes, oxygen attachments and extra Prevacid.

The loose ends could fill the space shuttle. Stop the mail. Arrange the complicated seven-point transfer that gets us to an airport at 5 a.m., Lulu to the grandparents, then the kennel, and our car somehow back to us. Find someone foolish -- or brave -- enough to administer oral bladder-infection medicine to our ill-tempered tabby, Jack. Coordinate portable oxygen.

And it's all fallen on Big Mo. Mr. Dithers has been riding me hard lately at work.

We leave Thursday for 2 1/2 weeks in Maine, visiting my family. We're fret the details: coordinating flights and hotels, how Hope will respond to a new environment and whether airlines still have honey-roasted peanuts.

The reward should be great: Family-soaked fun and a trip to the coast. When Will was in the NICU, I used to cradle him and tell him how we'd play by the ocean. I'm haunted that we never got the chance, but delighted Hope can dip her toes in salty waters, look at snails in tide pools and smell low tide, the best bad smell in the world.

Saturday, July 12, 2008

Fed up, Spitenup

The more I learn about Cornelia de Lange Syndrome, the more I realize the health issues keep on coming.

We're reminded of that again this morning after Hope spat up another batch of old blood. It's becoming a weekly ritual. Last Friday, we were at the movies. My mother and sister babysat. Mo ducked out, placed the obligatory call for reassurance and heard: "Well, she soaked her shirt and bed with what looks like blood and bile ... But she seemed really happy afterward."

She's had about five episodes, each about a week apart, since an endoscopy in late May showed no major damage to her esophagus from reflux. She underwent that procedure -- a scope snaked down her throat -- because we found a few drops of old blood. These are geysers.

The mercurial Dr. Spitenup is on the case. He examined the blood, pontificated and analyzed before arriving at his diagnosis: Hey, it happens.

For months, Hope has moved toward sitting on her own, crunching her abdominal muscles like Jack Lalanne. She's not quite there, but Spitenup thinks the pressure is exacerbating her hialtal hernia, a mostly benign condition in which her stomach pushes into her esophagus. He doesn't think it's a major issue unless it happens more frequently.

Our answer: Uh-unh.

We're pressing Spitenup yet again for better answers. It's taken us months to grow accustomed to his strange ways. We've come to respect him because, so far, he's been spot on -- even if his bedside manner is straight out of 20 Questions or a police interrogation.

But this is different. If he can't make this stop, pronto, we're going elsewhere. Among all of life's nuisances, spitting up old blood doesn't strike us as something to get used to or shrug off.

Monday, July 7, 2008

Will's roses

When I was a little kid -- pre-school, maybe a bit older -- I threw a tantrum for the ages in the hardware store. I wailed, flailed my arms and sat in the middle of an aisle screaming for more than 10 minutes. At last, my flustered mother acquiesced and bought the object of my desire: A rose bush.

I'm still not sure why I wanted such a thing, but buying it shut me up, and it was soon planted. Last I checked, it was still blooming, mostly forgotten by the side of the house but faithfully sprouting reminders of my career as a brat.

It is my last and greatest triumph as a gardener. Hanging plants die in two days. I've killed cacti.

But when Will died, I remembered my childhood rose and planted another bush. In a garden of neglect, it was pampered: sprayed with weed killer, fed with top-shelf spikes and pruned regularly. It flourished the first two summers after his death, giving forth one perfect red beauty after another to match his hair and his spirit.

Inevitably, my gardening skills intervened. It grew so wild and so hearty, I worried it would take over a fence. I trimmed it down. Too much. Last summer, amid the stress of Mo's pregnancy, it looked sad and nearly dead. I felt terrible. And then I rationalized: Perhaps, with another child on the way, the bush had done its job.

Two days before Hope was born, it bloomed again. It was gorgeous, as though Will was blowing his sister a kiss.

I thought that may have been its parting, poignant shot, but bundled up the bush to protect it from the winter a few weeks later. This spring, as the rest of our garden stubbornly sprang to life, Will's rose bush gave off all appearances of a moribund stump.

I went through the motions, fertilizing and feeding but believing we'd seen Will's last rose.

It bloomed again two days before the cousins he never got to meet came to visit his sister for the first time.

The timing is touching. We've always known Will is looking down on us, sending us small reminders that, no matter how difficult the path, there is always beauty. Sometimes, we don't do as good a job listening as we should.

Tuesday, July 1, 2008

CdLS conference

I give up. I've tried for two days to gather my thoughts and write about a tangle of emotions after the CdLS National Conference in Chicago. I went for the profound, the conversational and the funny. I weighed a meditation on my struggles with faith and surrender. None worked. So what the hay. When in doubt, lead with the facts:

  1. 85 children, 125 families and a whole lot of love. It was overwhelming, comforting, heartwarning, relaxing, sad, powerful and sometimes a little scary. I'm still putting my mind around everything, but there's no doubt I'm glad I went. Left to my own devices, without the expectation of disapproving tut-tuts from Mo, I probably would have chickened out.

  2. Hope is a party girl. After cloistering her for months during cold and flu season, we're rapidly discovering she digs the night life. Truly the belle of the ball, Hope was the youngest and smallest child at the conference. Strangers stopped to take her photo. A photographer asked to be her agent. It was wonderful to be in a place where people appreciated Hope only as a true-blue cutie, where we weren't on guard for the inevitable follow-up: Why is she so small?

  3. It's true: There is a vast spectrum of affectedness with CdLS. I had thought it was bunk. We saw children who we wouldn't have suspected had any condition. We saw those with profound disabilities. I spent altogether too much time trying to size up Hope and determine where she might fall in the mix. I immediately felt guilty, as though I'm setting conditions rather than simply accepting the unknown. But I'm a parent. I worry.

  4. Grandma Clem is kick-ass at the license plate game. Mo's mom went along for Hope's first big road trip, loading the Oldsmobile Silhoutte with junk food, cheesy books on CD and a yellow highlighter that never strayed far from the map of the United States. Lookit! It's Missouri!

  5. CdLS is heady stuff. We caught a fascinating but too-brief seminar on research that made us want to rush for our biology books. I always wondered how 1 mutated gene can cause so many issues, from short stature and reflux to curved eyebrows and small feet. I naively assumed each of the 30,000 human genes controls specific traits: One for blue eyes, one for bad posture, etc. Nope. The gene that goes astray to cause CdLS is something of a regulator. Its job is to tell a slew of other genes how much to turn on and off as life is formed. How much is lost in the translation could determine the level of severity. And there's hope. More research = a chance to pinpoint how the gene interacts with the brain and develop drugs to actually treat retardation. It sounds crazy, but it's exhilitating.