Wednesday, February 25, 2009

Reminder from afar



A few admissions. One: I am a loser. Two: There was a time, more recently than I'd like to admit, when I spent an inordinate amount of time checking traffic for the blog, hitting "refresh" to see if anyone logged on in the past 3 minutes and raising my clenched fist to the sky and wondering, "What, dear God, must I do to get a reader from North Dakota?"

In the past few months, like a lot of losers with blogs, I've grown slack, felt guilty and wondered whether it's run its course. Then, today, out of the blue, I open an auxiliary e-mail account that I haven't checked in weeks and think, "Wow."

A woman from far away found the blog. Her child had recently been diagnosed with CdLS. Shock gave way to fear and anger. Presented by doctors with a grim prognosis of raising child with behavioral difficulties, she dreaded the future. She wondered if she would stop loving the child. She wondered if she should because what the child would do to her and her family.

It was a gut-wrenching note. Her message bowled me over: Thanks for writing, thanks for giving her hope that life with CdLS can be full of joy.

It brought tears on a hectic day when I was beset with worry about too many things that aren't important. It reminded me of the things that are.

Her note brought back a lot of memories, a lot of worrisome nights not too long ago when I was wrought by eventualities. What if Hope grows up to bite me? What if she never walks, talks or feeds herself? What if the rest of our lives will be spent caring for a severely disabled, self-destructive girl?

What if, what if, what if. Fear, fear, fear. Marcia, Marcia, Marcia.

Those fears haven't disappeared, but they no longer consume me. What does is the progress of this remarkable little red-haired beauty who is laughing more every day, trying to figure out how to crawl backwards, cutting her second tooth and seems to have kicked whatever nasty bug waylaid her.

The note also reminded me of the comfort I've found as well through this nifty little network of blogs by parents of children with CdLS. Peeking into each others' lives reminds me that, we all have challenges, some more than others, but life goes on, and it can be great in ways we never imagined.

Monday, February 16, 2009

Presidents' Day

video

Last Memorial Day, I publicly proclaimed that Hope was teething. A month later, sitting in a hotel conference room at the CdLS conference in Chicago, a woman in our group with a syrupy Midwestern drawl held her toddler and asked a simple question.

How's come nobody tells you these kids take forever to cut a tooth?

I held Hope, pretended to nod sympathetically and thought: "Maybe your kid's choppers take forever. Mine are already coming in. Yee haw."

Nine months later, we're proud announce that Hope has --part the clouds, shout "Heavens to Murgatroyd" and strike up the band -- cut a tooth. And, oh yeah, I'm a cement-head.

After several months of sticking my fingers in her mouth and retrieving them in a pool of saliva and despair, I all but forgot that children grow things called "teeth." Independence Day begat Labor Day, Thanksgiving and even the Feast of St. Pacifico of San Severino. Alas, no Chiclets for the chickie.

We felt bumps around New Year's. I resolved not to get too excited, figuring we may to cycle through another set of holidays for actual tooth-age. But lo and behold, Presidents' Day is good for something beyond Zero Percent Financing With Prices This Low We Must Be Crazy car sales.

As she has for days, Mo jammed her pinky in Hope's mouth.

Chomp!
Ouch!

We have a tooth.

And just in time for our sanity too. We needed a pick-me-up. Hope caught a nasty strain of something that's been going around, lasts forever and causes you to cough like you have the plague. I had it for 2 weeks and was miserable. Ditto for Mo. And we're not 10 pounds with compromised breathing.

So far, Hopesy is managing as well as she can. She's on regular breathing treatments and wearing oxygen full-time until she can get over the hump. It could be a while.

Wednesday, February 11, 2009

The hunt for K

One thing about our girl; We've never seen anyone so serious about play.

Hope approaches toys with an intensity rarely seen outside of "Rocky" movies. She dives in her Exersaucer like a lunch-bucket working stiff clocking in for another 8 hours and inspects her Happy Meal toys like a jeweler scrutinizing a ruby.

But Hopesy's devotion to toys is fleeting. For weeks, she'll absolutely adore her Dice-K doll or xylophone, giggling at the sight of them and lavishing them with her love. And then -- poof -- the spell has past and she's moving on.

The new objects of her obsession are foam letters. They're intended as bathtub toys, but we keep them in a bucket. Hope sits on the floor, purposefully rifling through the letters until she finds just the right one. She discards the Os and Ds until -- jackpot -- she uncovers the H, K or Z.

Eureka! The mother load! And now, the denouement, the final payoff: She plops the letter into her mouth, sucks on it for 5 minutes, laughing like mad, until, just like that, she's done and back to combing through the bucket for another prize.

Wednesday, February 4, 2009

Hot to trot



Classic good news/bad news this week. Since everyone loves the good news, that's where we start: Hope had a whiz-bang, woowie-kazowie, tip-your-waiters-and-waitresses 50 percent Super Bowl, and not just because she won two squares and $10 in the pool.

It was after halftime. The commercials were blah as ever. We had bellies full of pig-in-a-blanket mini weenies and were looking for kicks. So was Hope. Literally. Laying on her back on a blanket, Hope began her windup: She flapped her warms, shook, shimmied, twisted, grunted and melodically kicked her leg four times on the blanket like she was cajoling a reluctant motorcycle.

Hope got the rhythm. The momentum followed. Like an uncorked, windup dervish, she heaved. Umph. One leg over. Hunka-hunka-oomph. Two legs over and presto! She was on her belly. We cheered like we cared who won the game. We returned her to her back, watched as she began her signature windup: Kicking her right foot four times, allowing the mojo to flow and -- thwump -- rolled over again.

She did it three times that night. Each time, the cheers grew louder. After 15 months and creeping ever-so-close, Hope had finally -- consciously -- rolled from her stomach to her back. We add the caveat because she's been rolling over in her sleep for weeks. But we figure that doesn't count for the Guinness Book unless she really wants it.

We're thrilled, of course, so much so that the bad news seems minor.

Our wood-paneled-dwelling, septuagenarian optometrist, Dr. Speakupsonny, reminded Mo that Hope will need glasses in the next six months or so. Since Hope already wears hearing aids, he thinks she should wear something durable. Something unobtrusive. Something plastic and multicolored.

They are known as the Mira Flex. They are billed as "flexible and safe." Here are beautiful models wearing the glasses whose instructions include tips such as "warm and shape according to need, compensate by overfolding. Make sure the temple is cool before placing on child's face."

Mo is mortified, insulted and practically speechless. One week later, she's still steamed.

"There's no way ... and I mean no way ... I'm putting our baby in Mr. Potato Head glasses."

Upon further review, I'm not sure she's that far off.











(Note: Dad is a dum-dum. An earlier version of this post said Hope had rolled from belly to back, which she's done for month for months. It was the back to the belly that made our zoom-zoom go boomity-boom)

Sunday, February 1, 2009

Chalfonte Kid



Hope became a Chalfonte Kid last weekend. She's in good company.

Founded by a childhood friend of Mo's father, Chalfonte House in Elk Rapids is more than a big, Victorian home in one of Michigan's most-picturesque lake communities. It's been a retreat for kids and families in need of TLC for more than 20 years. And it's got a big place in Mo's heart.

She began spending weekends at the house as a teen amid a rough patch. Her parents thought she could use some guidance from their pal, Father Jim Meyer (who trained for the priesthood with Mo's father and is forever known as Jimeyer.) She connected with an amazing network of friends, some of whom have endured loss, hardship or illness, some haven't, but all of whom have friendly ears and knowing souls. It's the sort of place you aren't compelled to explain or share anything, but usually do anyway and feel better for it.

Mo has been part of a Women's Weekend for more than a decade that meets once a year at Chalfonte to drink wine, talk, laugh and cry. She's also a camp counselor there for a weeklong retreat for teenage girls. Adult Chalfonte weekends are full of wine, laughing, great food, rituals, sharing and euchre and backgammon matches that last well in the morning and so vicious they've been known to inspire grown men to call 70-year-old priests "jackasses." (OK. Maybe it was only one grown man and one priest. Guilty as charged.)

Initially formed for those with cystic-fibrosis and other life-threatening illnesses, Chalfonte has seen its share of triumph and loss. Some of those who've spent weekends dipping toes in Lake Michigan have died too young. Others went to support others and left touched by the support they received.

None depart before signing a leaf on a mural of a tree in what's called the trophy room. I added my name in 2002, a year before Mo and I married. Hope signed her name, with a little bit of help from Mom, last weekend. It was a special moment in a weekend that's always special.