Journey of Hope

Ms. Potato Head is in the house

2011-11-30T12:03:00.008-05:00

Two and a half years ago when we first started researching glasses for Hope, her ophthalmologist recommended a pair that would've made Mr. Potato proud. They were one long piece of plastic that you basically bent at the arms and secured with a strap to keep them on. They weren't exactly flattering. For anyone -- Mr. Potato Head included.

Fast forward two years and Joel and I have come to realize that Mr. Potato Head may have been on to something. Hope's wire-rimmed glasses are adorable but have been a bit of a pain in the tookas. More pieces have meant more things that could break, and they have -- mostly the arms. For one long stretch, we had to hot glue and DUCT TAPE one of the arms on every day. I have far more important things to do than tape Hope's glasses every day -- like laundry. I'd much rather be elbow deep in a 6-foot pile of baby clothes every day. Now, that's fun.

Anyhow, after getting Hope a new prescription this fall, we came to an important decision: no more cute, wire-rimmed glasses. We would succumb to Mr. Potato Head's charms.

So here we are and we are THRILLED. Seriously. If this wasn't a big, old "Don't judge a book by it's cover" lesson, I don't know what it is. Hope loves her glasses. I think the new, stronger prescription has made an incredible difference -- she's studying things from further away and tracking people across rooms, both of which she rarely did with her old glasses -- and we got the transition lenses so they turn into sunglasses as soon as she comes into contact with UV light. Hope had a corneal ulcer almost two years that left scar damage and makes her very sensitive to light so that's important. They're awesome.

Aesthetically, she looks a bit like Edna from Pixar's "The Incredibles" or a German librarian. We think she looks pretty hip. Thanks, Mr. Potato Head. We had no idea you were so fashion forward.

2011-10-17T09:41:00.004-04:00

I went running yesterday -- "running" might be a bit of an exaggeration; a turtle could beat me in a foot race -- and the thought hit me again: Joel ran a marathon. He ran 26.2 miles. Pardon my language, but how frickin' cool is that?!????

Joel finished the 2011 Bank of America Chicago Marathon on Oct. 9. It was hot (a high of 77), insane (45,000 runners; an estimated 250,000 spectators), and incredibly gratifying. Joel exceeded his fundraising goal as part of Team CdLS and raised more than $2,800 for the CdLS Foundation. He finished in 4:44, about 15 minutes slower than he would've liked, probably due to the warm weather, but still great. He said he couldn't have done it without his amazing "Curb Crew" -- me, my mom, Anne, my brother-in-law Jeff, Mike, Hope, Oscar, and my niece Rose -- to cheer him on at four stops along the course. I'm convinced we deserved medals too for navigating Chicago's clogged streets and trains, which was a bit like surviving the "Amazing Race."

To everyone who supported Joel and our family, thank you so much. It was such an incredible experience and it felt so good to see him accomplish this goal, to give back to the foundation, and to honor Will and Hope.

Food fun

2011-09-25T21:57:00.004-04:00

Like a lot of kids with CdLS, Hope has some eating issues. Nearly four, she's still a big fan of mushy food and very simple finger food like goldfish crackers. Chicken wings and ribs? Not so much. She lacks the coordination and muscle tone in her mouth to do much chewing, so like the geriatric set, she tends to gum her chow. If it can't be made malleable with saliva, forget it.

It's not just food. The same muscles used to chew food help form words and communication, which is also an issue. So Hope has two days a week of occupational therapy to work on exercises to help her chew, loosen her cheeks and remove some aversions to certain foods and textures.

We're delighted to report some progress. She's not there by a long shot, but Hope is slowly starting to take bites and chew some foods. No longer is simply inhaling her food like her dad going at a White Castle cheeseburger. She's taking deliberate, cautious bites and -- like always -- taking things at her own schedule and finding humor in the whole process. We're very proud.

Oscar also is going gangbusters on the food front and thinks he's ready for silverware and done with his wrinkly ol' parents at suppertime.

Fine dining

2011-09-14T00:09:00.009-04:00

Good times in Seattle. Great company -- thanks, Aunt Molly, Uncle Al, Aunt Patti and Cousins Jeff and Mike -- good chow, super brews, fun runs and wonderful scenery. The kids did great. But we learned once again that they aren't quite ready for the white-tablecloth set.

P.S. -- We've been so lax about updating the blog these past few months that we neglected to mention that Joel is running the Chicago Marathon on Oct. 9 as part of Team CdLS to raise money for the Cornelia de Lange Syndrome Foundation.

We appreciate all who have been so generous over the years and cherish your continued support. To donate, go to Joel's FirstGiving page. We also have added a new link to the right.

Twins?

2011-09-03T20:32:00.005-04:00

The woman eyed us in the Meijer checkout line, sizing up Hope and then Oscar as they jockeyed for the steering wheel in the little plastic car attached to my shopping cart.

"Are they twins?" she asked.

"No, not twins," I answered with a smile. "Nope."

"Really?" she said, clearly flummoxed that two little redheads so similar in size could NOT be twins.

The "twins" question is a popular one these days. I'm asked about once a day when we're out and about.

It's completely understandable why. Oscar had his 15-month checkup a couple weeks ago and was just over 22 pounds and 30 inches tall. Hope had a GI appointment last week and is almost 20 pounds -- Woohoo! -- and just a smidge over 30 inches.

Maybe I'm cruel, but sometimes it's funny to see people clearly stumped when I tell them they're not twins and leave it at that. Some honestly seem disappointed. It's amazing how much our culture loves the idea of twins. Excitement brims in some folks' eyes, smiles spread across their faces. "Twins?" they ask, with great anticipation, before I quickly dash their hopes. I can be a real downer.

Now, I realize I should probably be more up front with people. I should probably tell everyone who asks if they're twins that Hope has a genetic condition that affects her growth and that's why they're so close in size. Often, I do. Other times, I don't. It just depends on my mood.

Sometimes I feel like a bad ambassador when it comes to spreading CdLS awareness. I have an opportunity to teach people about the syndrome every day. But the truth is, some days, I just want to live my life. I want to take my kids to the grocery store, find a cart with the little car attached so one doesn't have to sit in the main compartment, and do my shopping.

Fortunately, I've gotten more and more comfortable about sharing that Hope has a genetic condition -- "syndrome" sounds scary so I just leave it at "genetic condition" -- so I'm getting better about opening up to whoever asks. And as I've learned time and time again, for the most part, people are coming from a good place when they ask questions. They aren't asking to be cruel. They're often asking to be friendly.

I realize the "twins" question will fade eventually away, replaced by other questions I don't have answers for yet. A few people have already commented on how quiet Hope is. How do you say, "She's nonverbal" or "She doesn't talk" in a good way? I don't know, but I'm sure I'll eventually figure it out.

In the meantime, I plan to enjoy my twins.

So long, Dr. Brown

2011-06-15T12:30:00.005-04:00

I dreamed about this day, toying with it in my brain. What would it be like? What would I do with all that extra time? Read a magazine? Fool around on Facebook? Play with the kids more?

Alas, it's here. Earlier this month, for the first time in THREE AND A HALF YEARS, we are bottle-free. Hope has been off bottles since January and Oscar finally got the hang of sippy cups about two weeks ago. Dr. Brown has finally left the building.

No more nipples that flow too fast or too slow. No more scraggly bottle brushes. No more annoying Dr. Brown middle compartments that supposedly prevent your baby from swallowing air (the verdict is still out on that). No more microsteam bags.

Hallelujah.

I have no idea how much time being a bottle-free household has actually freed up -- do parents ever really have free time? -- but I'll take it. I love not having a big bowl of soapy water with soaking bottle parts cluttering up my counter. And I dismantled our double-decker bottle rack earlier this week. So long, friend.

Now, on to bigger things: potty-training and self-feeding. When that happens, I don't think a simple blog post will suffice as celebration. I may have to organize a parade.

Paws off the Easter eggs, Lulu

2011-04-27T20:39:00.012-04:00

If you've ever wondered if dogs find Easter eggs appetizing, they do. Our dog helped herself to a few of ours. Or six.

It was like something out of a sitcom. We decorated our eggs -- Hope was a little more into it this year and Oscar just wanted to the lick the big, cold things we kept handing him -- and then I went to the store while they dried. Joel gave the kids a bath.

When I got back and started to dismantle our dye operation, I noticed how few eggs we had. We'd only dyed 13 eggs but I could only find seven on the table. I asked Joel if he'd already put some in the refrigerator. Or did he eat some? Nope and nope.

That left one big, fat dog as the culprit. And she was so stealth about it. Joel didn't hear a peep. No other eggs were tipped or tampered with. It was like six just vanished. She could've at least challenged us to a game of cracks before she scarfed 'em all down.

But aside from our egg-head dog, our Easter was really nice. We had a low-key Easter egg hunt in our family room and then went to my parents' house for brunch. The Easter Bunny hid Hope's basket in one of her favorite places these days -- in the bathroom atop the toilet seat. Disgusting, I know. But we -- ahem, the Easter Bunny -- wanted her to find it on her own and this kid loves the bathroom, especially lifting the toilet seat up and down repeatedly and throwing bath toys in it. The toilet is cool and cleanly for kids to play with, right?

Oscar's basket, meanwhile, was hid next to another hot spot around here: The diaper pail for soiled cloth diapers.

It's hard to believe that this year marked Hope's fourth Easter. She was so tiny on her first Easter -- not even 8 pounds yet -- that she fit she just fine in a regular size Easter basket.

Last year, I envisioned Hope being steady enough on her feet by this Easter that she'd be able to carry a basket and bend down and pick up eggs. But we're not there yet. She's not strong enough or coordinated to hold a basket, stop, bend down, pick an egg up, and put it in. But one thing at a time. This time last year, she still wasn't walking on her own. Hopefully we'll get there one day.

Lulu, meanwhile, seems to have had no problem digesting six eggs. She had some toxic gas but that's just a normal Sunday for a dog who will eat any bodily fluid. A tip, though: Steer clear of her kisses.

Resilience

2011-03-21T09:50:00.008-04:00

Sometimes my heart aches for CdLS kids and how much they have to go through.

This winter has been a doozy for so many. I know of at least three (thanks to the wonders of Facebook) who've gotten so sick in the last couple months they've had to be put on ventilators and were literally fighting for their lives. One developed pneumonia and sepsis. Another little boy was sedated and sick for days. Another little girl got RSV -- a serious respiratory virus -- earlier this winter and also was critically ill. Thank God, she's home now, but the other two are still in the hospital.

With so many of our kids, their resilience AMAZES me. From reflux issues to sinus problems to muscle weakness to teeth problems, their challenges are endless. On top of it all, many can't even tell loved ones if they're hurting because they're non-verbal. And yet, they trudge on, fight back, and endure.

Our little Hope is no different. I feel so incredibly grateful that she's been fairly healthy so far. Still, there are times that I look at her and I'm awed by how hard she's had to work for things that come effortlessly to others. Just learning to sit didn't happen until she was 13 months old due to low muscle tone. She was 9 pounds when she finally sat on her own. 9 POUNDS!

Today, she's walking; getting into sit without a problem; pulling to a stand; and can stand unassisted (funny as it sounds, she could walk before she could just stand, which required a lot more strength). She no longer uses binkies or bottles, and we're full-steam ahead into potty training, which is going surprisingly well. She usually goes every morning on the potty but is inconsistent the rest of the day.

Are we anywhere near being fully potty-trained? No. But we're getting there. Every time she does her business, she gets a twinkle in her eye and grins like "I have a little present for you!" All this from a little girl I worried might never walk or be potty-trained. Ever.

Anyhow, I just wanted to send a shout out to all of the children I know with CdLS and their parents. You amaze me and remind me daily that our kids are fighters.

Spread the word to end the word...

2011-03-02T20:13:00.010-05:00

Hi all!

If it seems like we've abandoned the blog, we haven't. We've been on an extended hiatus. In between work, the holidays, visits from relatives, a recent chili cookoff fundraiser for a dear friend -- oh, and raising two kids -- we've been kind of distracted.

Things are good, though, in this neck of the woods. Hope is loving school, making good progress with potty training (she went No. 2 TWICE today on the potty; woohoo!), and working on a Picture Exchange Communication system. She's still the busiest little thing around, playing with such vigor I swear if we could just harness her energy our electric bill would be a lot cheaper. She's still really into books, stacking cups, and any and every cupboard or drawer she can find. Joel and I joke that sometimes she treats play like its a 9-to-5 job. "Time to stack the cups..."

Oscar, meanwhile, is growing and developing at lightening speed. Where did 9 months go? He's creeping all over the place, exploring everything he can get his hands on, babbling up a storm. Today, he had a major meltdown because I dared to take him away from a little activity table he was playing at to change his diaper. He was crying so hard he nearly hyperventilated. Please don't tell me his sprouting red hair has a temper to match.

I decided to write tonight because I want to spread the word about a campaign the Special Olympics launched today to end use of the word "retard."

Oh, how this word sends shivers up my spine. I've heard it everywhere -- from friends, relatives, colleagues, teenagers who think they're being funny. They're not. I often think that friends, relatives, or colleagues don't even realize how insulting and hurtful they're being when they use the r-word, especially to Hope. But they are.

Let me be clear for those who may not know: Hope is considered "mentally retarded." The correct terminology is cognitively impaired or intellectual disabled. Does that mean Hope can't learn things? Absolutely not. But does it take her longer than other kids? Yes.

Why is the r-word so offensive? It's offensive because it degrades people like Hope. It's used to describe someone as stupid or dumb. But what people don't realize is who they're really insulting is people with intellectual disabilities like Hope when they casually throw out the r-word like it's no big deal.

The Special Olympics' campaign is called "Sread the word to end the word." Take the pledge -- do it here -- and pledge not to use the r-word anymore. Because the next time you do, you're making fun of Hope and everyone with intellectual disabilities like her.

And that's not OK.

Oscar in Funky Town

2010-12-23T00:27:00.001-05:00

Oscar has discovered the thrill of '80s one-hit wonders Lipps Inc. Can you blame the kid?

Birthday and all that jazz

2010-11-14T15:52:00.001-05:00

Big stuff. Hope turned three. She's pulling herself to a stand — as we learned last weekend when we came in to her room and found her cruising in her crib — and Oscar is nearly sitting. More on that later.

And now, an Oscar video

2010-11-03T21:28:00.007-04:00

Oscar is a cheap smile and expensive laugh. The kid spends two-thirds of the day smiling, and doesn't give much of a hoot about what.

Lamps? Awesome. Ladies in the super market? Hey there, momma. Ceiling fans? Now, you're talking. A poster frame? C'est magnifique.

It's fun to see. But we've noticed lately that to get O really chuckling takes more than simply walking into the room. Sure, that'll generate a grin. But for a full-on, tell me another one-liner Henny Youngman, that takes some work.

Which is why we don't have a lot of video of that yet. But we do have video of him smiling and chatting a lot, so that's what we're posting.

Fundraising, surgery and a helmet

2010-10-28T22:07:00.010-04:00

A gigantic thank you to friends and family near and far for another successful Walk for Will and Hope. This year, we drew about 75-80 walkers for a picture-perfect 2-mile stroll. The weather was unseasonably warm. The leaves were magnificent. The company was terrific. Hope and Oscar were in fine spirits. We really couldn't have asked for much more.

We're happy to report we raised another $4,500 for the Cornelia de Lange Syndrome Foundation, pushing our two-year total past $10,000. It means so much to us that we could do this to honor Hope and Will, who would have turned 6 five days after the walk. It's hard to believe it's been that long. We miss you, pal.

It's also hard to believe it's been 18 days since the walk. A whole lot has happened since then. About five days after the walk -- two days after we put my parents on a plane -- Hope had her supraglottoplasty surgery. That's the surgery to correct her laryngomalacia, a floppiness of her airway that made her seem like she was wheezing or snoring when she breathed.

Laryngomalacia is fairly common and benign among newborns. Most outgrow it in about 12-24 months. But most aren't nearly 3 and still about 16 pounds. We worried Hope's breathing was compromised by the floppiness of her airway and that she had a tougher time getting over colds because of it.

The surgery involved cutting floppy skin from her windpipe that caused the wheezing. It required anesthesia and putting an oxygen tube down her throat during the procedure. So naturally, we were freaked out. We were doubly freaked when we decided on the eve of surgery to read medical studies about what could go wrong. Never a great idea.

Hope was a champ. She left the hospital that afternoon, was a total pill that night, but bounced back to her old goofy, sweet self the next day. Her breathing improved immediately. It's odd not to be able to hear Hope from 50 paces anymore, but wonderful.

Both Oscar and Hope are doing great. We realize how infrequently we've updated the blog when we look back and realize what we've neglected to mention.

Hope started school in September. I drop her off about 9 and Mo picks her up about 3. We were dreading it. But Hope seems to be doing great. In a little more than a month, she's begun potty training and is weaning herself off bottles. It's five days a week and Hope is usually pretty exhausted -- no naps for little girls -- but she's been really happy since she started.

Oscar got a cranial helmet to correct a flat spot on the back of his head about three days before the walk. We were bummed, of course, that he'll need to wear it 23+ hours a day for the next 2-4 months. He may look like Spaceman Spiff, but he is utterly unbothered. His attitude seems to be: Hey dudes! I'm wearin' a helmet!

It's ironic, after nearly three years of fielding questions about Hope's size or her glasses, to answer questions about Oscar's helmet. The other day, in the Post Office, a clerk asked Mo if it was a fashion accessory. A few weeks ago, a girl at a toy store pointed at Oscar and screamed: Look! A baby in a helmet! Her embarrassed mother found us later and tripped over herself apologizing. I told my daughter, some kids are just born sick. We don't make fun of them.

Lordy, lordy, lady. Quit while you're behind.

There's a whole lot more, but not enough time. We're busy making cupcakes and preparing for Hope's third birthday on Halloween. She's a fairy princess. Oscar is a monkey. We think they look pretty cute. But neither seems thrilled by the prospect.

Our son, the caveman

2010-09-22T12:22:00.003-04:00

Our son has learned a new skill. Don't blame Dad.

Hope makes her move

2010-09-10T20:38:00.019-04:00

Hope let go.

Saturday, unable to find her beloved Winnie the Pooh push cart or inferior-but-will-do-in-a-pinch lawnmower one, Hope stood against a wall, looked around, thought Why not? and walked.

It wasn't one of those Oh, I'll take a few brave steps and grab ahold of something sturdy walks, either. This was Lewis and Clark, Vasco de Gama and Neil Armstrong embarking on brave new world conquests.

Hope planted her flag in her bedroom, surveyed the riches, proceeded to the hallway and declared our bedroom part of her sovereign kingdom. It wasn't a one-and-done dilettantish affair either. Once Hope realized she could walk, she's become Speed Racer, moseying about the house in a royal quest quest to knock stuff over, inspect coasters, open and close cabinets and see what she can throw in the toilet next.

We're ecstatic, of course. It's been such a long time coming. She's been inching this way for some time since she began cruising on Memorial Day Weekend in 2009. Slowly but surely, she gained more confidence and strength and put the pieces together.

We thought she was ready for a breakthrough in spring and set the end of summer as a goal to get her walking. She suffered a setback. We weren't sure if it was the introduction of a baby brother or molars or outgrowing her orthodics, but her confidence sagged. So did her progress.

We were bummed. But Hope gets her determination from Mom and procrastination from Dad and pulled it out with two days to spare.

There were days, early on, when we weren't sure this day would come. Before Hope could sit, when she was a bit of a wiggly blob, her first physical therapist, Shirley, told Mo: "She's going to be a mover. I can see her running one day."

Mo cried. The affirmation came just when we needed it and carried us through some slow months. Hope's not quite running just yet. But she will.

We're walking again

2010-08-31T22:56:00.004-04:00

Last year, we fulfilled a promise to Will and honored his memory with the Walk for Will and Hope, a 2-mile leisurely trek to raise money for the Cornelia de Lange Syndrome Foundation. We didn't know what to expect, fumbled our way through and were knocked over by the reception, raising more than $6,000 for the foundation.

This year, the pressure is on. Between getting ready for Hope to start school next week (Lord almighty) a host of doctors' appointments, potential surgery to address Hope's tracheomalacia and figuring out when Oscar ever sleeps, we're sponsoring the walk again. It's at 9 a.m. Oct. 10 at Stony Creek Metropark in Shelby Township. Same Bat Time and Channel as last year.

More appropriately, Mo is putting it on again. She's the captain, quartermaster and ringleader. I'm the dork who yells into the bullhorn.

Like last year, we're not sure what to expect. Times are tough. We're reluctant to hit people up again after giving so generously last year. It's a long drive.

But we've always been surprised by folks' generosity. And, like last year, we know we can count on support from hither and yon. Unlike last year, we're making it easier for you hither and yonners.

Partnering with the foundation, we've set up a site through First Giving to donate directly to the CdLS Foundation in honor of Will and Hope. It's www.firstgiving.com/walkforwillandhope. We're also putting a link directly on the blog near Hope's photo. If you're more comfortable, you can donate directly to the foundation. The address is on that site.

Of course, we'd prefer to see folks at the walk. Like last year, we'll be doughnuts. New this year is a special guest appearance all the way from Bangor, Maine, of my parents. Some kid named Oscar will be there as well.

As will Hope, who if all goes well, will actually be walking part of the walk. She's getting very close and very determined. If not, she'll sleep through it like she did last year. Either way, it should be a hootenany.

Hope to see you there. And thanks for enduring the sales pitch.

Sibs

2010-08-11T07:28:00.008-04:00

A lot of folks ask if Hope enjoys being a big sister. We think she might.

The first day back from the hospital, I had Oscar in my lap. Hope scampered up and reached toward Oscar. My heart began to melt. She reached farther and farther toward his head. "Get the camera, Mo," I whispered, certain that Hope was responding to her biological wiring to pat the head of her little brother.

Hope inched farther still across my knee. My heart thump-a-lumped. She got closer still. My mind raced with ooey-gooey thoughts, daydreaming in fast-forward that my life from now on would be filled with sticky-sweet confectionary moments like these.

Hope's little hand almost snatched Oscar's pacifier from his mouth before I got wise.

It was a lot like that for the first few weeks. We tried to force bonding moments. Hope seemed vaguely interested that we brought home a new receptacle for binkies and bottles. She seemed to think Oscar was OK but no more so than a wooden peg or her necklace of milk jug caps.

Since then, Hope is far more cognizant of the 12-pound kid than the 90-pound dog she's spent a lifetime ignoring. When she thinks we're paying too much attention to Ozzie, Hope grabs our knees, sticks her head in our face and whines. She had a rough couple weeks with frequent crying spells that could have been attributable to sibling rivalry, the arrival of her last two molars or something else.

But she's warming to him as well. She seems to like Oscar, but quite as much as her cat, Jack. Hope pats his head. She looks at him lovingly. She gets a big smile whenever he wails in agony. We like to think it's a smile of "I've got your back, kid" rather than one of sheer sadism, but you never know.

Chatty Oscar

2010-07-16T08:40:00.005-04:00

No, we didn't name him after Oscar Wilde. But the kid is quite the raconteur.

Two words...

2010-06-22T19:47:00.008-04:00

Eating Machine!

The O-Man has gained two and a half pounds since his birth five weeks ago and continues to astound Joel and me with the sheer volume of milk he can put away. He's only five weeks old and he already drinks about DOUBLE what Hope drinks in one day. Granted, Hope also eats baby food and digests things slower than the typical kid but still. The little pork chop may not look like Mama but he's got her appetite. Wow.

Many people have asked how Hope is adjusting to her little brother. Aside from trying to steal Oscar's binky and bottle and being a little clingy with mom, she's done remarkably well. She even gave him a kiss -- after much prompting -- on the head the other day. But we'll really see what she thinks when Oscar is about 6-8 months old and more mobile and going after her toys. That may be a different story.

All in all, things are incredibly chaotic here but really good. Joel's awesome mom, Anita, helped us for two weeks after Oscar was born and my cool sister, Molly, came for a week after that. They were both a tremendous help and got to spend a ton of quality time with both Hope and Oscar.

In other big news, Hope graduated from the Macomb Infant Preschool Program last week with a special party that included games and train rides. I managed to keep my postpartum hormones in check but I could've easily bawled my eyes out saying goodbye to all of Hope's therapists. What amazing people. You know your kid is in good hands when the staff doesn't just teach your child from week to week like it's a job but really loves her. And in helping Hope, they really helped make us better parents too. We're going to miss them all. Thanks again, Maryann, Cheryl, Nelson, Carmella and Kathy.

Meet Oscar Bryce Kurth

2010-05-24T10:21:00.002-04:00

Baby Boy

2010-05-19T11:27:00.001-04:00

Baby Boy is here. Still no name yet, but everything else is hunky dory. He came at 1:08 at 6 lbs., 1 oz and 19 1/2 inches. Red hair, long arms, long legs and oh-so-fine. Big sister met him about 5 wearing her special T shirt and seemed fairly curious. Then her toys beckoned.

- Posted using BlogPress from my iPhone

He arrives...

2010-05-17T22:39:00.003-04:00

TOMORROW! We'll keep you all posted.

Thanks so much all the love and support! You guys rock.

Bittersweet

2010-05-05T10:57:00.004-04:00

As many of you know, Joel and I are journalists in the Detroit area. Last night, I covered a small election in some communities in and around Detroit -- little stuff like millage proposals, school district bonds, and the like. When the results came in from one city counting on a millage proposal (tax increase) to help them save their services as they struggle with major money problems -- it passed -- an elected official told me the results were bittersweet. It didn't solve their budget worries but it helped.

The word struck me: bittersweet. That's exactly how I felt the moment I found out I was expecting a boy. It felt bittersweet -- to lose a child, a baby boy, and now to be expecting another. Bittersweet.

As I approach the end of this pregnancy with all its aches, pains, and endless bathroom trips, I'm getting more and more anxious to meet this little person. I want to meet the little boy who likes "Bohemian Rhapsody" when I put headphones on my belly, who kicks the minute I pick up his sister, whose foot I've seen graze from one side to the other of my stomach, who I've dreamed of.

I can't wait to hear his voice. I never heard Will cry aloud (because of the ventilator). Ever. And while we heard Hope cry the tiniest of cries in the delivery room, Joel and I both long to hear a huge, throaty cry of "Where the heck am I?!???? Put me back!"

I've been wondering and worrying if this baby will need to go to the NICU like Will and Hope. I'm keeping my fingers crossed that he'll be big enough and his lungs mature enough at 37 weeks not to need the NICU. But I'm preparing myself just in case.

So that's where we are -- 13 days away from my c-section. I'm so excited to see my little boy, to study his face, kiss his cheeks, and smell his hair. And yet a part of me is sad too, sad for the little boy whose time on this earth was far too brief, missing him like always. Bittersweet.

P.S. I apologize for the heavy post. Blame the hormones.

Walking tall

2010-04-29T07:58:00.006-04:00

One day, about a year ago, Hope decided to cruise. Seemingly out of nowhere, she put one hand over another, moved her feet and scampered across an ottoman.

One day, a few weeks ago, Hope realized she didn't need the ottoman. She let go of her push cart and started walking excitedly to Mo.

Since then, her confidence is increasing and she's taking more steps on her own. At therapy this week, Hope walked about a dozen or more steps. Now, she's walking a bit more every day, even if she still resembles a drunken sailor.

We're awfully proud.

Easter passages

2010-04-09T22:08:00.006-04:00

As some who've followed our story for a while know, we like to torture Hope on Easter.

The first year, Mo put her in an Easter basket. She didn't like it much.

Last year, we put her in again. It didn't go so well, either.

This year, we didn't bother with the big girl. Everyone is a little bit happier because of that.

The swimmer

2010-04-04T12:53:00.004-04:00

Hope loves the water. We love watching Hope in the water. It's a pretty good arrangement that works well for all parties.

Caught in the act

2010-04-03T22:45:00.010-04:00

Hope has taken to her crib. When she was much smaller, she hated being put to sleep. It was a true endurance test. We'd read to her, fill her with Pediasure, rock her 'til we nearly dropped and pray for the best. She usually didn't fall for it. The moment we put her in the crib, her back would stiffen, she'd begin to wail and we'd have to start all over.

My routine was to count backwards from 100 once I believed she'd succumbed. I needed to move very slowly from the chair to her crib, gently transfer her from one arm to the other and place her down like a princess awaiting her pea.

It rarely worked. We'd be mid-tiptoe, the crying would start and dreams of a quiet night enjoying "Intervention" reruns would be quashed again. Likewise, when Hope awoke, the entire house knew it.

Eventually, Big Mo made a declaration: No more, she decreed. We're not going to spoil her by rocking her to sleep every night. And thus it was so. Sort of.

Now, I usually have to count to only 30, but Hope doesn't mind her crib. In fact, it's become just another place in the house to play. We'll put her to bed, think she's asleep, and then 20 minutes later, the cooing and giggling comes over the monitor. It begins quietly, a tee hee there or a wee there, but often gives way to full-blown, one-hour laugh riots at the wonder that is sheets and a bed. She eventually gets to sleep. We think.

Long story short, we often catch her awake far on the other side of the crib, in the ghetto of stuffed animals. Her arms will be wrapped around a stuffed Elmo, her beloved cloth rings or the god-awful "Ziggy as Frankenstein" that I won at the crane game to make amends for thoughtlessly discarding Mo's beloved "Ziggy" address labels that came in the mail.

Thursday, we caught her in the act, two hands clutching a ring, a stuffed mallard propping her up and her upper torso surrounded by her stuffed animal pals. She had a look like, Huh? Bug off, buster. Can't you see I'm busy here with Ziggy?

We know we're not winning any plaudits from Dr. Spock with the stuffed-animal in the crib arrangement. We'll probably have to move them now. But it is pretty cute. And who doesn't like Ziggy?

Sitting pretty

2010-04-01T22:21:00.007-04:00

It's a big weekend for Hopesy. After two years of adjusting to her car seat, she's now quite comfortable in it. For months, we needed to time our trips to the minute so we could avoid putting her in the seat, lest she burst into tears.

Now, it's her mobile entertainment capsule, like a Lazy Boy with cup holders and remote-control holder for the toddler set. Two sets of rings dangle from the carrying handle. Hope meticulously takes them off one by one. She has her binky on one side and a bottle on another. It's a comfortable arrangement.

And like any good parents, when we see comfort, we set out to eradicate it. Hope may be a few pounds shy still, but we are transitioning her to a Big Girl front-facing car seat this weekend. We figure we'd better make the move now. Little Brother is fast incubating in Mo's womb and will soon need to learn the ways of pulling refrigerator magnets from Big Sister. Unnamed Baby Boy is due May 12.

So we went shopping last week for a new seat to see what Hope thinks. If the test run is any indication, we suspect she'll do just fine.

What's this thing?

We think she likes it.

Oh yeah, this'll work. We think.

Funny girl

2010-03-17T21:52:00.011-04:00

Say this about Hope: She has no problems amusing herself.

The girl finds a lot of stuff funny. Her rings? Hilarious. Mo's big pregnant belly? As good as a pie in the face of a clown and more fun to grab and pat. Her bottle? Mamma Mia. Hours of entertainment.

Part of it is hereditary, we're sure. We like to laugh. Mo laughed so hard at a rerun of "King of Queens" on a long redeye flight once that I woke up thinking a deranged person was on the plane. Mo's mother should rent her services to fledgling comedians.

Some of it probably is cognitive issues for Hope, too. But she's so infectious, it often doesn't matter. Hope laughs at her walker. She breaks into giggles pounding blocks. The back of the couch has her in stitches.

It could be punchiness or another highly clinical state known as "toddler-dom," but Hope for long stretches at a time can border on giggling hysteria. Everything is hilarious! Mom has elbows? Oh my God, I can't stand it! Dad's wearing a striped shirt! Stop! Stop! You're killing me! The cat walked by. No more! No more. I'm a lady!

Hope's newest source of hilarity is bending over. She has discovered that when she drops stuff, she can move bend one knee and reach with her arms to try to retrieve it. Funny! She will lean over for 30 or more seconds and laugh and giggle away. Soon, she will realize her arms aren't long enough to reach her toy. She could bend both knees. But no, no. She is laughing too hard now. So she stays there, half-leaning and in complete hysterics.

This has persisted for about a week. At some point, Hope had a Eureka moment: I don't have to drop anything to bend over and it will still be awesome.

So she does. One minute, she will be cruising along, slavishly obeying the toy that commands her to "Touch the little bear ... and play with me." The next, she's half bent over, tee-hee-heeing at the marvelousness of arms, backs and the floor.

We'd be lying if we said it wasn't a little weird sometimes. But she pulls it off. And makes us smile.

Swinger

2010-02-22T20:30:00.002-05:00

We took Hope to the swings on Sunday. She may not be much of a sledder yet, but that girl loves her swings.

Photo o' the day

2010-02-16T16:28:00.004-05:00

Mo and Hope last weekend at a museum in Detroit.

- Posted using BlogPress from my iPhone

Hell on wheels

2010-02-16T00:44:00.006-05:00

A few months ago, our friends, Joe and Sheila, gave Hope a hand-me-down push cart their daughter used. Apparently, she loved it so much they had to hide the evidence of their betrayal, sneaking the Winnie the Pooh-themed vehicle into the car while she was unaware, employing the stealth and foresight of high-school sophomores stashing a six-pack of Blatz in the woodshed for Homecoming.

Now we can see why. The cart has given Hope the freedom of a young go-getter's first moped. It took her a while to warm up to its charms and figure out how to maneuver it. But now she's hell on wheels, making the rounds of the house like a milk-man dropping off Half and Half to Aunt Ethel back in the day.

Until a few weeks ago, she would travel in straight lines and cry when she reached the wall. Now, she's figured out routes even more circuitous than Northwest pilots. She rounds corners with ease and aplomb, makes hairpin turns worth of Mario Andretti and generally terrorizes Mo's beloved but otherwise vile tabby, Jack. Lulu has already learned to give Hope a wide birth when she's in the cockpit of the Winnie the Pooh mobile.

Here's our girl in action. And thanks, Joe and Sheila. And sorry to their daughter. Hopefully, she can't read yet. But she is awfully precocious.

Busy Girl

2010-02-08T20:58:00.037-05:00

For a toddler who can't walk yet, Hope is one busy little girl these days. She's got places to go and things to do.

She has to explore the kitchen -- and everywhere else, for that matter -- with her push cart.

Along the way, she has to stop at the refrigerator to rearrange the magnets and even sample a few:

Then it's off to the dishwasher to rearrange the cups (and sip out of a few; yes, they're dirty. And yes, I'm a bad mom. But she likes the cups!), bang the door to the garbage and bang whatever cupboard within reach:

Eventually, around noon, it's time for a nap. After 2-3 hours, it's time for more fun:

A new addition

2010-01-26T20:03:00.009-05:00

Forgive me if I've been totally MIA when it comes to my blogging duties lately. I have pregnancy brain.

Yes, Hope will officially become a big sister this spring (note the big smile on her face above; she has no idea what's ahead). I'm five months along now and due in early June, though I'll likely have a C-section in mid-May because of two previous ones.

Now, some of you may be wondering why two people with a known genetic condition in the family would even CONSIDER having another child. As incredibly grateful as I am to be Hope's and Will's mom, I've always longed for a healthy child. And shortly after Hope was born, Joel and I learned that the possibility existed that we could -- through science.

Joel and I were able to do some very, very detailed genetic testing at the embryonic level before I even got pregnant. It's called Preimplantation Genetic Diagnosis. Basically, people way smarter than me -- scientists -- can build tests for families with known genetic conditions to test future pregnancies for that same condition. In an amazing coincidence, we went to a facility in our own backyard, Detroit, and a test was built using my DNA, Joel's, Hope's and Will's (which we banked before his death, hoping that we'd one day be able to have an official CdLS diagnosis). Using that test, we were able to test specifically for Cornelia de Lange Syndrome at the embryonic level. PGD, which has been around for about 13 years, is 97 percent accurate.

It's a lot to get your brain around. To do this testing, we had to go through in vitro fertilization. We went through our first round in September and got the amazing news a week later that I was pregnant. In vitro is not an easy process in and off itself. I gained so much empathy for people with fertility issues because it certainly isn't easy. It's physically, emotionally and financially challenging.

But the amazing news is this: About a week after Christmas, I had an amniocentesis. We had to send everything off to a special lab at the University of Chicago which is the only lab in the country (I think) that tests for the NIPBL gene mutation Hope has and Will had, which causes CdLS.

Our baby does NOT have the NIPBL mutation. I just cried when the genetic counselor called me. I had tried to prepare myself for every possibility. But to hear those words, I can't even describe my relief. For a couple days afterward, I jumped every time the phone rang because I kept worrying the genetic counselor was going to call back and say she got it wrong. It's been two weeks now and I don't think she's calling.

I realize that some people may disagree with our decision. Joel and I could've chosen adoption. But adoption has its own challenges and I just hope that those who don't agree with our approach withhold judgment until they've walked in our shoes. Again, I feel SO blessed to be Hope's and Will's mom. And yet, I've always wanted a healthy biological child -- a child who'll hopefully one day learn to read, play soccer and graduate from college.

I realize there are no guarantees. So for now, I just feel thankful. And I'm keeping my fingers crossed that this pregnancy continues uneventfully. All I'd like in the world is a boring pregnancy. Oh yeah -- and a healthy kid!

One last thing: We're having a BOY! As I said before, Hopesy has no idea what's in store for her. I can't wait.

The blog lives

2010-01-10T22:50:00.007-05:00

Contrary to my lonely heart proclamation in November that we'd do better with the blog, we clearly failed. But it's a new year, a time for grand proclamations and terrific intentions. Hey, anything is possible.

The holidays were lovely as always. Hope survived a nasty one-two punch of seasonal maladies shortly before Christmas. First, she caught a virulent stomach flu that made the rounds of Mo's family faster than the Japanese Bullet Train pulling into Osaka. This holiday will be remembered in the family annals as "Oh Yeah, That Time Everyone Was Barfing."

We feared Hope would have to spend Christmas in the hospital. She lost nearly 2 pounds through dehydration, which is the equivalent of about 20 pounds for a 15-pounder, and generally had the temperament of a damp dish towel. She did spend about three hours in the ER on Christmas Eve Eve, but perked up with the nourishing drops of IV fluid and we were discharged.

But her bout with the Ralph Macchios was only half the problem.

The clues, as they are wont to do, emerged gradually. No. 1: Hope screamed for four hours straight two nights in a row. No. 2: She would only sleep in the darkest, coldest part of the house. No. 3: She liked standing in front of the freezer. No. 4: Her eye began to cake.

Naturally, I read the signs, used my advanced powers of deduction and solved the caper: I think she's hungry. Her wails are those of a famished child confronted with a cruel paradox: She wants to eat, but cannot, because she has the John O'Hurleys.

Fortunately, I'm married to someone who may have married a lummox, but isn't one herself. Mo took Hope to the eye doctor. She had a corneal ulcer. Those are bad. They are formed when an abrasion to the cornea becomes infected. Somehow, Hope must've scratched her eye. Untreated, they can cause permanent loss of sight. If nothing else, we feared Hope might have to take a cue from Jack Sparrow and wear an eyepatch for Christmas.

But doubly fortunate, we caught it in time and, after about a week, the nasty milky spot in her iris has disappeared.

We missed most of the local festivities, quarantining Hope, but she rebounded in time to fly with us to Connecticut for Round Two of the Yuletide Hootenanny: Seven days with my family. Hope regained her weight and her spirits. We ate. We played ~~too many~~ not nearly enough games of Monopoly. We hit all sorts of touristy, geeky yet thoroughly entertaining historical sites in Hartford (who knew?) and generally had a merry, merry time.

Too merry to document, in fact, but not too merry to steal a video from my dear ol' Mom documenting Hope's continued efforts to walk. She's still got a ways to go, but she finds it all tremendously entertaining. And so do we.

We heart Xmas

2009-12-11T19:54:00.004-05:00

By some misfortunate fluke of scheduling, Hope's annual heart examinations always seem to fall near Christmas. And nothing pauses the Holly Jolly quite like anxiety over aortas.

True to form, Hope's annual checkup was Thursday. We switched doctors this year, transferring from the lovely cardiologist in the suburbs to a doctor at Children's Hospital of Detroit, which performs surgeries should they ever be necessary.

It was a long checkup, 2-hours plus, all told, and Hope performed like a champ, giggling at the EKG leads and fiddling with the echocardiogram as the docs checked out her ticker.

The good news, and it's great, is that Hope's issues are status quo. She has a bicuspid aortic valve, which means the valve that regulates blood flow from the heart into the aorta has two leaflets rather than three. She also has a slight jog in the curve of her aorta, which could be suggestive of a very mild coarctation or narrowing. That could present an issue down the road with blood getting to where it should, and worse case, one day lead to a stint to open it and keep things moving.

Or maybe not. So far, neither present a problem. Her blood pressure's great, the blood is flowing like a trucker on 5-hour energy drinks. As it was last year, these are just things we have to wait and watch as they develop. We see them again in a year.

Until then, it's back to the holly jolly stuff.

Good stuff

2009-11-30T22:44:00.002-05:00

Hope is doing good stuff, feeding herself cheese and cereal puffs and beginning to take her first steps with a bit of encouragement. But as you can see, it's a work in progress.

San Diego fun

2009-11-17T09:11:00.002-05:00

They're back safe, sound and happy. Good times in San Diego with Mo's sissies.

Bachelor days

2009-11-07T20:02:00.011-05:00

Globe-trotting Hope is at it again, flying to San Diego early this morning with Mom and her Aunt Annie for five days with Aunt Molly -- or as I call her, Dirtbag. Lulu and I are holding down the fort, raking leaves, ripping apart the bathroom, eating frozen pizzas and generally having unsatisfying, one-sided conversations.

It's been about 13 hours and I already miss my ladies. It's terribly lame, but the cycle repeats itself: Count the days until sweet bachelor freedom; feel sad for at the airport, sing a song of emancipation and return home, look around, realize it's awfully quiet and begin to re-shingle the roof. If this keeps up, I may have the foundation of the house up on jacks tomorrow.

I probably sound like a dullard, but Hope has been even more of a joy lately. If something isn't bothering her -- and she lets us know when it is -- she's one happy kid. It's a cliche, but that's all we can ask. And her joy is infectious. It's hard to be in a bad mood around Hope.

Mo always dogs me for writing long and skimping on facts, so here are some:

To our surprise, Hope has done well with her new pink spectacles. She's much more engaged and only whips them off when something is bothering her or feeling neglected.

Hope took to a fancy, schmancy new gait trainer the Intermediate School District let us borrow. It had a long handle so we could help her steer without breaking our backs, like her current loaner. She made repeated circuits and giggled all the way, like her heifer won top prize at the county fair. That's the good news. The bad news is we had it for four days on loan to see if she liked it before ordering it through supplemental insurance. That could take three months. So it's back to the low-tech red walker and more Ben Gay for our backs.

We're switching cardiologists. We had to cancel Hope's annual check-up to monitor her narrow aorta because we were Up North. We like our cardiologist a lot, but are thinking about switching HMO networks to a children's hospital.

I'm going to try to be better with the blog. It's gotten away from us for a while, but I'm feeling recharged for the moment.

A new do at two

2009-11-05T23:01:00.004-05:00

Like others with CdLS, Hope has hair issues. Sure, her locks are adorable, but they don't always cooperate. For months last year, Hope sported a faux-hawk worthy of Glenn Danzig or other punkie poos. She gets her color from her mother's side and her fly-away, instant hat head from mine.

Lately, we've tried to solve some of the issues with hair bows. But Hope likes to eat those. We've tried bands, pigtails and jaunty caps. Eventually, she tires of dress-up and yanks them off. Over the months, Mo has tried to trim Hope's hair with mixed success. Once, a friend from overseas did a do for Hope worthy of Oooh-La-La Sassoon.

Mostly, though, we've washed it, combed it and hoped for the best. This week, we did what we should have done months ago: Taken her to a salon and done her up right.

Party people, unite

2009-11-02T23:29:00.003-05:00

With all due respect to those lucky kids born on Arbor Day or Feast of Our Lady of Guadalupe, Hope still has you suckers beat. For our money, no birthday is more fun than Halloween, and we did it up again this weekend.

Continuing a tradition of future humiliation that began last year when we dressed Hope up as a turkey, she was a ladybug this year. For the uninitiated, a ladybug costume is a lot like a turkey one, only it's a big red sack with red dots rather than a big brown sack with feathers.

No matter, she the envy of the aphid colony, getting gussied up after a hard day of pumpkin carving. We had every good intention of trick or treating this year, but the weather was cold, the porch railing beckoned and Hope is accursed with lame parents. We had planned on hitting a few houses, but instead stuck to custom and sat on the porch and doled out Almond Joy, Baby Ruth and Big Boy coupons to all comers. We feel a bit guilty that we punked out, but rationalized that Hope couldn't eat any candy besides lollipops. Next year, we promised.

Sunday we partied like Norse Gods, eating Elmo cake, ate ghoulishly themed food prepared by Mo (Mmm. Mmmm. I love me some Zombie Fingers, but wish I didn't have to pick around the green olives of the Eyeballs of the Undead) and played Mo's all-time favorite game, Pass the Pumpkin. It's a lot like Musical Chairs in that it involves music, flying elbows, bruised egos and lots of arguments. Somehow, the party acquired an Elmo theme. Like a lot of new-ish parents, our qualms about embracing rampant commercialism gave way to wanting to make happy our girl who loves the Tickle Me Kid.

All in all, we whooped it up like we were at Greek Row in an archetypical Big 10 School. It's tough to believe sometimes that Hope is 2. Some days, it seems like forever. Others, it seems right. But it's a great milestone to chart progress. Last year, Hope wasn't even sitting up. Now, she's cruising like a big girl in a loaner walker and seems more like a toddler every day.

Next year, we hope she's walking for real.

Walk for Will and Hope

2009-10-12T22:30:00.012-04:00

The weather was swell. The cause, worthy. The company, wonderful.

Under cool but crisp skies, about 75 kindly souls trekked 2 miles Sunday for the First Annual Walk for Will and Hope. We're proud to report we smashed our fundraising goal and raised nearly $5,000 for the Cornelia de Lange Foundation. We're absolutely tickled and humbled by the response.

All credit goes to Big Mo. This was her dream and goal for the five years after Will died, so we were honored and grateful to host the walk four days before what would have been his fifth birthday. Mo sweat the details, wrangling insurance, designing T shirts, coordinating refreshments, charting the course, navigating surprisingly cumbersome park bureaucracy and cajoling donations from near and far.

My job was mostly comic relief and doing as told. As such, I'm updating the blog as she enjoys a well-deserved lounge, Cheez-Its and "Dancing with the Stars."

We are terrifically appreciative and have so many people to thank. The response bowled us over and we're lucky to have such great friends and family to come out and support a cause that means a lot. There's a video yet to come with some highlights, but right now, we're just basking in the glow and preparing to write thank-you notes.

So thanks to all. It was terrific.

They're here....

2009-10-10T10:28:00.011-04:00

Two months and four optometry office visits later, Hope FINALLY has her first pair of glasses. As you can sort of tell from the pictures, they're pink wire frames with cable arms that wrap around her ears and a rather large plastic thing called a universal bridge. They're a little big but I think we did the best we could given Hope's small head and features. I went to four different places -- two of which had to order special frames for us to even try on -- before we found these on Tuesday and I decided to go with it. They arrived yesterday.

So far, Hopesy is actually doing pretty well with them! She kept her head down for the 15 minutes she had them on yesterday, as if they were heavy. Today, she's doing much better. Apparently this seeing stuff isn't so bad.

But some sights, as you can tell from the picture below, are good no matter whether you can see them clearly or not -- like Hope's thumbs. She's been fascinated with her hands, and particularly her thumbs, for about a month now.

Back to Higgins

2009-09-24T22:11:00.004-04:00

We have steadfastly resisted the buzzword of the recession: The loathsome staycation.

We work too hard and our cat annoys us too much to even consider the pitter-putter, dilly-dally, couch-potato siren call of lazing around home for a week, watching "Gilmore Girls" reruns until we can predict their oh-so-clever-banter, occasionally trekking to places we've already been a gazillion times and looking out the window and staring at that taunting bent nail keeping our storm drains in place, begging to be fixed.

So it was off yet again to the poor-man's time-share, our rent-free and oh-so-scenic home away from home, Mo's parents place on Higgins Lake in northern Michigan. The leaves had changed, the tourists had fled and the wooded trails nearby practically inviting Lulu to poop on them.

As usual, we had a grand time: Boating, eating much dip, sitting in the sands, introducing Hope to the wonder that is acorns and strolling through the tranquil woods, the gentle song of the swaying branches punctuated only by our calls of No, Lulu! No, No! Stop!

Chasing our bliss, we made like college freshmen and skipped Hope's first week of school. What the hay: It was registration week anyway. She begins in earnest next week, receiving her therapy schedule today. Unlike party-boy freshmen, Hope has scheduled school before 11 AM, with both sessions starting before 9:30 AM. That's bad for any dreams of marathon keg-stands, but good for dear ol' Dad: This year, I can make them.

Hope is doing great stuff. It's nifty to return around the same time each year to Higgins Lake because we can better visualize her progress.

Last year, she couldn't sit on her own. This year, she not only sits, but spins in circles and has devised her own, quite ladylike, method of getting around by sitting spread-eagle, throwing her arms to the floor and pulling her to heart's content. Over Memorial Day, we were delighted when she took four tentative cruising steps next to a chair. Now, she's skipping from the chair to the bookshelf to the coffee table to the end table and onto the wall, a la Sylvester Stalone in "Cliffhanger." Last year, she could barely fit in the Snugglie. Now, she loves it.

It's fun to look at photos from then and now to remind ourselves how she's become such a little girl while we weren't noticing. Of course, I could have made a video comparing and contrasting. That would make a lot of sense. Instead, I made one about hypnosis. Go figure.

Back to School

2009-09-10T10:28:00.006-04:00

Hopesy had first day of school Wednesday. It was really an orientation more than school day but we got to see her therapists, which was nice (we haven't seen them since June). We were only there an hour and Hope spent a good half of that rubbing her head, trying to get her bow out. Apparently bows are so last year. I tried to tuck it way on the back on her head, in the middle, so she couldn't get it with either hand but she on was on to my tricks. I didn't even attempt to put her hearing aids in.

We don't have her schedule yet but like last year, Hope will have two hours of therapy a week. That isn't much time to jam physical, occupational and speech therapy every week but it is what it is. Next year, she'll be in pre-school five days a week so I should enjoy this two day a week stuff while it lasts. My heart starts to palpitate just THINKING about plopping my 18-pound three-year-old on school bus next year. As Joel would say, those are worries for another day.

Gotta run! We're off to get a flu shot.

Summer Reading

2009-08-26T11:49:00.005-04:00

Hope has always loved books but this summer she seems to be even more book crazy. I have no idea if she loves the pictures or if it's just about turning the pages. Lately she's been touching her nose to pictures she especially likes (the one above is a picture of a red-haired little boy. Her first crush maybe?!????). It's too cute.

In other news, we got her ankle-foot orthotics last week and she seems to be adjusting to them well. They're not too big or bulky, though I did have to get new shoes a size bigger so they'd fit inside. We also checked out glasses this week. They weren't a lot of options for small babies but we did find one set of frames from Fisher Price (who knew Fisher Price made glasses?) that seems to fit the bridge of her nose nicely and go right around her ear. She looks like a little professor in them. Hope thought they were hilarious and promptly yanked them off.

Happy Wednesday!

Mark your calendar (if you live in Metro Detroit)

2009-08-22T12:18:00.011-04:00

It's official: We're FINALLY hosting a walk to raise money for the CdLS Foundation.

This has been a dream of mine ever since Will died nearly five years ago (I actually picked the date, Oct. 11, because Will would've been 5 on Oct. 15. I get a lump in my throat just thinking about that). I got close to organizing something one year -- found a location, pulled a permit, talked to the foundation about liability insurance. But for whatever reason, I couldn't pull it together. I don't think I was ready emotionally.

But with some prodding from a good friend and my supportive hubby, I finally decided to just DO SOMETHING this year. It may not be a 5K but it's a start and that feels good.

So here it is: The 1st annual Walk for Will & Hope. It's going to be an informal 2-mile walk at a park near our house, Stony Creek Metropark. There won't be any clocks or mad dashes to the finish line. And there's no registration fee. We'll be accepting donations only so all people have to do is show up, walk for a good cause, and donate as much or as little as they'd like. Our goal is raise $1,000. People who can't make it can also write a check and mail it directly to the foundation: Cornelia de Lange Syndrome Foundation, 302 West Main Street, #100, Avon, CT, 06001 (Put Walk for Will & Hope in memo line). We also may have sponsor sheets that walkers can take to work or wherever and ask people to pledge a certain amount per mile.

I just wanted to share. If you're in the area, join us! We'd love to see you.

Peepers

2009-08-18T11:15:00.009-04:00

Good news about Hope's peepers: They're not as bad as we thought.

We had her six-month check-up with her opthamologist, Dr. What-did-you-say-Sonny?, on Monday and apparently Hope's vision has IMPROVED. He said that as the eye develops, that can happen. I'm not sure if it's that or the tests aren't that accurate. Basically, they dilated Hope's pupils with drops that also paralyzed her focusing ability. Dr. What-did-you-say-Sonny? then flashed a small light into each eye while holding a lens of different prescriptions into each eye. I wasn't quite clear on his explanation but he said when something-or-other is neutral, he can determine what prescription Hope needs.

Regardless, according to the testing Monday, Hope is nearsighted and is -4 in both eyes, which is about the same as my prescription (she was -6.5 the last time we saw him). Anyhow, I'm going to make an appointment with an eye place today to get her glasses.

I have a feeling that getting Hope's glasses will be the easy part. Getting her to actually WEAR them on a daily basis will be a whole different story.

I love...

2009-08-11T18:18:00.004-04:00

...pancakes!

We've been working hard on transitioning Hope from baby food to table food. And while we still have a long way to go, we are definitely making progress. Last week, I made pancakes and she ate about three pieces -- one of which she picked up on her own! That's big news around here.

Of course, she picked two more pieces and proceeded to bang them together but that's OK. Baby steps...

New tricks

2009-08-03T23:04:00.009-04:00

Rumor has it that summer is in full flower, although you wouldn't know from actually living through it. Word is the Mercury climbed all the way to 70 degrees Thursday. Pity. We were too busy warming our cockles by the wood stove to pay much attention.

Lousy weather or no, we have persevered, barely having a moment to tend to our ~~crab grass~~ lawn or ~~rotting pit of algae and muck~~ koi pond, much less the blog. Indeed. Like it not, Hopesy and company have become full-on, 24-7 party people.

We got back a week ago from a delightful week with my family on the coast of Maine, searching for the perfect seafood platter, swimming, kayaking, playing on rocks and watching from the deck of our rented ocean side home as picture-postcard lobster men pulled their traps to pay the note on their BMWs. We liked the sunsets, sipping wine and vistas of Boothbay Harbor. Hope liked that the house had a mammoth coffee table that she could cruise round and round.

We've become adept moochers, spending the weekend shamelessly cajoling invitations from friends with pools (Have we told you, Deb and Louie, how much we love your company?) and those with boats (Anne, Jeff, you mean the world to us). Between the begging, we're pleased to report that Hopesy is a Class A water baby. We took her swimming twice this weekend. Both times she giggled with glee, rearing back her head to reveal her burgeoning set of choppers.

The choppers -- Li'l Jimmy Carter has even more front teeth coming in atop the ones Mo chronicled last week -- have her a bit crankier than usual. But she's still super company, and is developing a nifty repertoire of tricks. She began cruising days before the Independence Day and now that's all she wants to do, adroitly turning corners and even beginning to hold her own on the Look Ma No Leaning Scooter Thing-a-Ma-Jig scooter that Hope's physical therapists loaned her to get her walking. For weeks, she walked tentatively, needing us to guide her hands and she walked, frequently stiffening her back and refusing to go farther. Now, she's making circuits in the house. Stopping, though, could take more practice.

More good news came last week from Dr. Spitenup, the wily gastroenterologist who speaks in Zen riddles but proclaimed himself so happy with Hope's weight (about 13 lbs.) and progress that we don't have to endure his interrogatories for another six months. That's a record.

So we're happy campers. Now, about that crab grass...

One year and five pounds later

2009-07-29T11:54:00.006-04:00

(Above left: Ocean Point, Maine, July 2009. Above right: Schoodic Point, Maine, July 2008).

What a difference a year makes, huh? We just got back from another great trip to Maine -- this time to picturesque Boothbay Harbor -- and looking through the photos reminded me just how much Hope HAS grown. The picture on the right was taken last July when Hope had just hit the 8 pound mark. We're now hovering at 13 pounds. Yes, she's wearing the same pink hat in both pictures but it actually sort of fit her this year (aside from the pesky chin strap)!

I hope everyone is having a relaxing, fun summer. Ours has been a little frenetic but things should slow down now. We had a groovy time in Maine -- whale-watching, eating tons of seafood, shopping and playing on the rocks. I'm not sure Hope was exactly impressed with the scenery. Her favorite part of the trip was cruising around the coffee table in the living room (more about that another time).

On the home front, Hope has four teeth now -- two bottom teeth, a molar, and one front tooth -- and seems to be cutting her other front tooth because she's been a big crab apple most of the week. The only thing that seems to make her happy is her toothbrush. She's also cruising a ton and is just starting to shift from one piece of furniture to another or whatever is close by. She was fitted for ankle orthotics yesterday to give her a little more support with walking which we should get in a couple weeks.

Happy Wednesday!

Summer fun

2009-07-13T23:36:00.006-04:00

Ahhhhh, summer.

We're only a month in and I'm EXHAUSTED. From chaperoning a girls camp for a week up in northern Michigan to spending some time with Hope and my parents on Higgins Lake, I feel like I've been on the go nonstop since the school year wrapped up. And I have. But there are certainly worse things. I'm really lucky I've gotten to do so much.

My first big foray of the summer was a week at Girls Rule Our World (GROW) camp at Chalfonte House in Elk Rapids, Michigan. Joel briefly wrote about Chalfonte in January but it's an incredibly special retreat house that a family friend started years ago. It holds a special place in my heart and it's where I've gone every March since I was 19 to spend a weekend away with some amazing women to bond, reflect, eat and shop for Women's Weekend. Anyhow, about three years ago, the family friend who started Chalfonte (it's his beautiful Victorian house), Jimeyer, asked if I'd like to be involved in GROW, a retreat for teenage girls. The idea was to give girls who may have medical issues, emotional problems, unstable family situations, or just need a break from home a week to away to experience new things and thus, grow. I agreed and it was such an incredible (and exhausting) experience that first year I've been back twice more as staff. It's a ton of work but by the end of the week you really feel like you've given these girls an experience that will last a lifetime.

This year was no different. We swam like fish, hung out at the beach, went to Sleeping Bear Dunes, camped out in the woods one night, got beautiful portraits done by an incredibly a local artist, made tie-dye shirts, and went tubing. I was the main staff person so it was my job to coordinate all activities, meals, etc. for the girls.

The good news is I was so busy cooking meals and moving from one activity to another that I didn't have a lot of time to dwell on Hope and the fact that I was away from her for SEVEN DAYS. I missed her but I knew she was in good hands with my mother-in-law, Anita, and Joel and that they were having a good time. The other good news is we had a fulfilling, unforgettable week and I really believe a lot of the girls experienced things they'll treasure for the rest of their lives. Some left crying, asking if they would be invited back next year.

Now, the bad news: After dropping off the last of the girls -- I also drove the girls around all week, along with another staffer, in a van the size of Toledo -- I couldn't wait to get home. I kept envisioning Hope's smile and couldn't wait to feel her little hands on my cheeks.

So much for visions. As soon as Hope saw me, she didn't smile. I don't know if I was too loud or what -- she did have her hearing aids on which we've been kind of lax about this summer for various reasons -- or she wasn't feeling well but she stiffened up when I held her for the first time and even cried a little bit. I thought I handled it pretty well. I calmed her down and gave her back to Joel. I waited until she went to bed and then I cried.

Things are fine now but I honestly wonder if she was mad at me. Does that happen? What do you all think?

Anyhow, sorry for the long, rambling blog post. I hope everyone is having a great summer. We're off to Maine next week to hang out with the Kurths & Konniks in Boothbay Harbor. We can't wait!

In the meantime, Hope continues to dazzle us with her cruising -- she's now turning corners. She's still nowhere near being able to pull herself to a stand but this kid is ready to move. She's also obsessed with her toothbrush and about to cut her fourth tooth. She got a molar out of the blue in late June. I knew kids with CdLS could cut teeth in an unusual pattern and I guess Hope fits the pattern. So now she has her two bottom teeth and a big molar on the left. It's kinda funny.

Happy summer!

Beach beauties

2009-07-11T09:31:00.005-04:00

Mo and Hopesy just returned from a week of beach-combing, ice-cream eating, blink-and-you-miss-it-parade watching and copious card-playing Up North. They let me come for a few days over Independence Day, and then said: "Beat it, punk."

Those two are becoming regular cottagers. Next week, it's off to the coast of Maine for a week. Last I checked, I get to come as well.

Surviving without Mo

2009-06-28T22:56:00.007-04:00

Mo went off to do good deeds last week, leaving her only daughter and only known husband to fend for themselves. We looked in the fridge, saw three slices of hard salami, two packages of Arby's Sauce and a six-pack of forlorn, long-neglected, non-alcoholic beer. We wept.

We looked a Lulu, sized up who would win in a starvation match and surrendered. We called Grandma in for reinforcements. She arrived from Maine just in time. Hope was wearing Scrabble tiles for diapers and bottle caps for hearing aids. In two days, I lost 45 pounds, grew a beard and began delightful conversations with a volleyball I called Wilson.

Things are tough around here without Mo.

Actually, her semi-annual, volunteer trip as a camp counselor in Elk Rapids -- I'm sure she's champing at the bit to dish details -- was planned months ago, as was my mother's visit.

Her timing was great. The weather was terrific, the Detroit scandals are in full flower and Hope was in mighty fine spirits. She's doing so much so quickly these days, it's hard to keep score.

Suddenly, our cuddly lap pal needs to move. A few weeks ago, she began to cruise, and now there's no stopping her. She has several hobbies, including a nifty game my mother taught her called "Librarian" that involves scampering from one side of a bookshelf to another and knocking off all the titles except one, David Simon's excellent "The Corner: A Year in the Life of an Inner-City Neighborhood."

She stops and flips all the pages, either fascinated by the gritty tale of urban decline or the book's spiffy red cover. We call another game "Go Get the Remote Control." It is similar to "Librarian" but involves a remote control, a leather couch and a noticeable lack of detail about the economics of the heroin trade.

Another new hobby is something called "Look at that Beautiful Creature in the Mirror." I taught her that one. It involves staring at the most beautiful creature in the mirror, waving rather coquettishly and coyly, having difficulty containing your excitement, waving your arms in joy and breaking into hysterical laughter. It took me 10 years to perfect the game. Hope has mastered it in a month. Smart cookie.

While Mo did good deeds, we ventured north for a mini-getaway to Michigan's kitschy Little Bavaria for 24 hours of eating chicken dinners and bratwurst, riding in paddle boats, swimming and looking at ourselves in the mirror and laughing with delight.

Great times. Big Mo is back and we are so happy we broke from the revelry to stop at the world's largest Christmas store to buy her a taco ornament with an inscription showing how much we missed her. It reads, "Big Mo's Taco."

My mom left town on Saturday, and we were all very sad, but we see her in three weeks for another vacation. That makes us so happy we need to head soon to the bookshelf.

The Bubble Man

2009-06-12T11:29:00.002-04:00

There are moments when you step outside your body, listen to the words leaving your mouth and realize: Holy Tamole, my life has really changed. It went down at work, last Friday, idly chatting about the weekend.

Co-worker X had concert tickets. Co-worker Y was leaving town. Co-worker Z had two parties.

"We're going to see the Bubble Man," I said, as if we were going to the post office.

Blank stares.

"Y'know, the Bubble Man? He's at the Bubble Festival."

The words came so casually, so naturally, so predictably, as though the Bubble Man requires no explanation. Like Cher, only jollier and not quite so cougar-ish. The Bubble Man blows bubbles. Big ones, little ones, funny shaped ones, ones that make you say "ooh" and then "ahh."

The Bubble Man indeed headlined the Bubble Festival in Ann Arbor, a celebration of -- wait for it -- bubbles. We went because Hope likes bubbles. We blow them on the deck. She claps her hands with glee. We blow them some more and Lulu tries to eat them.

So it seemed appropriate that we would make the trek for bubble-mania. We caught the Bubble Man's final show of the weekend, a 20-minute extravaganza of bubbles-within-bubbles, ginormous bubbles, gazillions of tiny bubbles to make Don Ho proud.

Somewhere, there is a handbook of children's entertainers. Buried deep within it, perhaps in Subsection 12, Article 7, there is a mandate: You must wear suspenders and brightly colored T shirts, ponytail optional but strongly recommended.

It must have been the end of a long weekend for the Bubble Man, who held court at the Hands-On Museum. He flubbed some tricks. His finale popped prematurely. At times, he seemed frustrated, but the Bubble Man is a pro. He soldiered on, to the delight of his tot-sized fans and us.

Hope seemed to dig the Bubble Man, but enjoyed the museum more, especially its mirrors. Like her old man, her new hobby is staring intently into them, eyeballing the gorgeous specimen on the other side and clapping with delight. Can you blame her?

Summer-summer-summertime

2009-06-11T21:46:00.006-04:00

It's the kind of thing that can keep you up at night. You flip through magazines. You scour the aisles at Hallmark and your local craft store. You wonder, "Will they like it? Will it be just right?"

You know what I'm talking about (especially moms): What to get your kid's therapists or teachers for an end of the school year gift. I know Heidi from God's Grace in Practice blogged about this a couple weeks ago.

I'm still learning what the etiquette is for all stuff but I figure a small holiday and end-of-the-year present is the least I can do for the important people helping Hope learn to walk and talk.

Last year, I bought each therapist a small basil plant (I was obsessed with growing herbs in my backyard). This year, I stole an idea from Parents magazine for a homemade pencil holder. It sounds very fourth grade-ish -- paint a tin can, put some colored rubber bands around it along with a nifty name tag on it and you're all good -- but I thought it turned out cute. Joel promptly mocked me when he saw me painting the cans. I know what he WON'T be getting for Father's Day.

Our last days of therapy were Monday and Tuesday and we finished the school year with a big party at school on Wednesday. There were train rides, duck games, and cupcakes galore. Of course, Hope liked the balloons attached to the table centerpiece more than anything else.

So summer is here again. We won't see Hope's therapists again until September which bums me out in a way but it'll be nice to have a break, too. I'm off to northern Michigan for a week at the end of the month -- I'll post about that later -- and we're all going to Maine for a week in July. In between, I'd love to take Hope camping, dip her toes in her own sandbox, take her for a swing ride and go swimming again (she's only been once -- ever -- in a heated pool at the CdLS Conference in Chicago).

What are your big summer plans?

Return from exile

2009-06-01T05:28:00.004-04:00

Aloha, sports fans:

I've been away from BlogLand for precisely one month, and I gotta be honest: It's not all it's cracked up to be. Reality is spooky! It's hot outside, there's yard work to be neglected and diets to abandon.

Fortunately, Mo filled in superbly in our small corner of the cyber village. OK, more than superbly: Mo rocks this blog thing. Granted, there was a conspicuous absence of Finnish disco dancers and fat men playing xylophones -- and a disturbing proliferation of exclamation points -- but I was entertained, enlightened and impressed. So much so, in fact, that 18 months into this social experiment, we've decided to do what adults would have months ago: Share the blog love. She'll write. I'll write. She'll share feelings. I'll post inappropriate videos of our 19-month-old cherub to the tune of "I Drink Alone." A 1,000-year reign of mirth will ensue.

Perfecto! It's just like the Romper Room preached decades ago: Sharing is fun!

Duck, duck...

2009-05-31T09:08:00.002-04:00

A quick shot of Hope from our trip up north last week. Ducks aren't for playing; they're for snacking!

Grateful but guilty

2009-05-30T12:09:00.009-04:00

Driving to work this week, I noticed a billboard perched on the side of the highway.

It was covered in notebook paper and it said, "Interesting fact about recessions: They end."

As much as I appreciated the message -- it was from CBS News of all places; a page from Katie Couric's "notebook," I assume -- it certainly doesn't feel that way in Michigan, and Metro Detroit in particular.

Michigan is mired in what seems more like a depression than a recession. We have the highest unemployment rate in the nation, 12.9 percent. Our biggest employer, General Motors, is teetering on the edge of bankruptcy and will likely file on Monday. Foreclosures are through the roof. We know couples who have lost two jobs and are surviving on two unemployment checks.

I know we're not alone in our pain. I read about the job losses and foreclosures across the country. But while the entire nation is hurting, Michigan is really hurting. We need a tourniquet.

So seeing that billboard this week really struck a chord with me. Joel and I have been very fortunate that we've been able to ride through this recession relatively unscathed so far. Yes, our house has lost thousands of dollars in value (a realtor told us earlier this year that we could sell it for $70,000 less than we bought it for) but the most important thing is we have Hope, our jobs and our health and that's all that really matters.

But a couple weeks ago, our newspaper announced that they need to make "budget reductions," meaning layoffs. Joel and I, who met at the paper working on a story together, weren't entirely surprised. If the car industry is doing badly, the newspaper industry is doing even worse. As ad sales nosedive and more and more readers get their news online, newspapers everywhere are slashing staff, downsizing, and in some cases even closing.

In early April, our paper, The Detroit News, along with the Detroit Free Press, made the radical decision that we would stop home delivery four days a week and only deliver the paper on Thursdays and Fridays. The move cut production costs but still allows us to put out a paper six days a week (we don't have a Sunday paper). It was a bold move but one we realized the paper likely needed to take if it wanted to survive.

Anyhow, with the impending layoffs, I knew I would likely lose my job. I work two days a week and according to our union contract, part-timers go first in the event of layoffs. So since mid-May, Joel and I have been nervously getting ready to live on one income: calculating how much unemployment I could collect, scrutinizing our budget to look for other areas to save, thinking about jobs I could do on the side for a little income. I was sad but resigned to the fact that my 10-year career as a journalist would basically come to an end.

But I got a surprising call Friday: I would not be losing my job. Management decided not to cut at all from the reporting staff and instead they were able to reduce costs from the business side of the operation -- dozens were laid off -- and three managers, one of whom Joel and I know well, lost their jobs. Several people who were also planning on leaving the paper anyway also volunteered to get laid off.

I'm so thankful I still have my job -- for now -- but I also feel guilty. While I get to keep working -- part-time at that -- other people, some who I know personally, will have to figure out what's next in an industry where there are no jobs in a state whose economic structure is collapsing. As a colleague put it yesterday, it's almost like survivor's guilt.

So we'll keep hanging on here in Michigan. If recessions do end -- and I know they do -- I just wonder when this one will. I hope soon.

Look who's talking

2009-05-22T00:10:00.017-04:00

We should've known this was coming given her two bigmouth parents: Hope is becoming a Chatty Cathy (or so we hope -- no pun intended).

For whatever reason, our little pipsqueak has finally realized that when her lips, tongue and vocal chords work together, she makes sounds. I think it started with raspberries a couple weeks ago and this week she's progressed to actual sounds. It's not babbling but it's something. She doesn't say any consonant sounds yet but I did hear a "la." And I have no idea why but she's especially vocal when she's on her belly or standing next to our couch, facing the back of it. Again, I have no idea why. I just go with it. Joel thinks she sounds like a wounded seal. I just love hearing her voice at all.

To the other CdLS moms, is this typical? Some CdLS kids are non-verbal. They use sign language or other devices to communicate. So I've never taken it for granted that Hope would talk. I've prayed and hoped that she would but I always knew that speech is very, very delayed. So I'll take any sounds from her, even wounded seal sounds.

Other than Hope's vocalizing, we've just been enjoying the nice weather the last couple days (though I had to work Thursday and Friday). We went for a nice long walk on Wednesday. Unfortunately, it was too long for Hope and she had a meltdown & refused to sit in the stroller without wailing for half of it. I had to hold her along with Lulu's leash and push the stroller at the same time. I'm sure my mother of the year applications will be rolling in any minute now. I had several passers-by look at me like I was completely nuts. About a half mile from home, I finally realized I needed to just strap her in, let her cry and she would get over it. And she did. Lesson learned for next time.

Happy Memorial Day Weekend!

Shake, rattle and roll

2009-05-18T21:50:00.004-04:00

First, an apology: Steven Spielberg, I am not.

Above is a little video snippet I shot of Hope this weekend. After months of refusing to roll or even really be on her back (or belly), the little stinker has decided that rolling isn't that bad after all. She's still not doing full, continuous rolls on her own but she's getting much, much closer and she's so much better at rolling from her back to her belly. Sometimes she needs a little nudge but that's it. I've decided that I'm going to try really hard to do everything I can to get her to crawl so rolling is a good start.

In other news, Hope has an ear infection in one ear and has decided clapping is the most amazing thing ever. She claps for everything. Getting her pajamas on? YAY! Can't sleep? YAY! Lulu licked my face? YAY! I have thumbs? YAY! It's pretty cute.

As a friend said today while watching Hope gnaw on a foam "W" (yes, the foam letters are still incredibly popular around here): "It's all about the simple pleasures." YAY!

Also, as you'll notice from the video, my obsession with hair bows continues. I went to a friend's house over the weekend and she introduced me to a friend of hers who makes the most amazing little headbands, bows and hats. The headbands -- one of which Hope has on in the video -- have been great so far at keeping the little hearing aid picker-outer from prying them out the first chance she gets (Today I caught her gnawing on one in her car seat while I was driving). I'm just glad we can finally take a break from the bonnets. I'm sure Hope is too.

A new transition

2009-05-13T23:49:00.010-04:00

(Shirley, Hope's physical therapist, left; Barb, her OT, right)

Hope & I dropped off some presents this week for two very special ladies -- her occupational therapist, Barb, and physical therapist, Shirley.

About two weeks ago, Hope officially "transitioned" from the Early On home program into the school setting, meaning she'll no longer get any therapy at home. It'll all be based at a school about 25 minutes from us. As part of the transition, she also has a new OT and PT. And she's getting one-on-one speech therapy, which I'm really excited about it. All in all, Hope gets two hours of therapy a week. Sometimes I wish it was more but two hours is the maximum you're allowed in the Early On program in our county.

The hard part of transitioning out of the home program is that we won't see Barb & Shirley anymore which makes me sad (thus the "thank you" gifts). When Hope started working with them about a year ago, she barely had any head control, was nowhere near sitting, and the binky always had to be nearby in case of a major meltdown. Today, she's sitting great on her own, getting better and better trunk control, can hold her own bottle and can push a little pushcart thing on her own with just a little extra support. She's come so far.

And Barb & Shirley didn't just help Hope. They taught me exercises I could do to build Hope's strength, ways to maximize her independence and the importance of "play." They taught me that I didn't have to set aside time for "therapy" each day but to just to incorporate certain things into our play together. I really feel like they've helped make me a better parent.

And they gave me optimism about Hope's future. When you have a child with special needs, you don't take anything for granted. Nothing is a given. I never assumed that Hope would sit, walk, run or talk. Maybe I'm a pessimist. Or maybe it was just a way of protecting myself. But Barb & Shirley always made me feel good about all of Hope's achievements and milestones, no matter how long it took to get there. I'll never forget the day Shirley said Hope was a "mover" and she sees her running one day. I really hope she's right.

Anyhow, thanks to Barb & Shirley. Thank you for being amazing teachers, good listeners and just compassionate people. Keep spreading that optimism around. We'll miss you!

Mother's Day montage

2009-05-13T23:39:00.008-04:00

Just a quick glimpse of how we spent Mother's Day.

I had a great day: slept until 8 (tried to sleep in longer but the body is programmed now to wake up at 7); enjoyed a great breakfast of waffles and bacon by Joel (yummmm....bacon); read the paper; watched some old videos of Hope when she was about the size of a chickpea and marveled at how much she's grown; had a mimosa with the fam; and then went to a nice brunch with my parents, brother and sister.

We came home and had strawberry shortcake and opened some presents. And later Joel & I watched the "Amazing Race" season finale and "Cold Case" (the only show Joel really watches). Perfection.

Happy belated Mother's Day to all the mommas out there!

CdLS awareness day

2009-05-08T23:54:00.003-04:00

It's 11:54 p.m. on Friday night. Hope is conked out in Joel's arms after her nightly bottle and I have six minutes to quickly spread the world about CdLS Awareness Day, which is today, before it's over. I feel terrible I didn't get to it sooner. So much for staying on top of the blog. How do you regular bloggers do it?

The truth is I wish every day was CdLS Awareness Day. I wish I could spread the word so much that I wouldn't have to tell people every day why Hope is so small, why she wears hearing aids or isn't anywhere near walking on her own at 18 months old (though she can make a mad dash in her walker). I wish thousands of children, often on the more mild end of the syndrome's spectrum, wouldn't go undiagnosed, missing out on vital services and resources that a diagnosis could provide. I wish one day everyone would just know.

But we're not there yet. And I'm not sure we ever will be. Until then, that's why days like today are so important. If you didn't know, CdLS, or Cornelia de Lange Syndrome as it is formally known, is a congenital syndrome, meaning it is present from birth. Common characteristics include low birthweight, small head size, slow growth, eyebrows that meet in the middle, upturned noses and thin downturned lips. It is thought to occur in one in 10,000 live births. And while recurrence is rare-- there seems to be some debate on the recurrence rate but it could be as high as 1.5 percent -- it does happen. Joel & I are evidence of that. Neither of us has the syndrome but one of us is carrying that genetic mutation that causes it in some of our reproductive cells. That's why we've had two kids with it.

To learn more about CdLS, visit the CdLS Foundation Web site. Spread the word!

P.S. Above is a picture of Hope in a pair of fuzzy wool slippers Joel & I got her from the beautiful island of Corfu in Greece while I was pregnant. She wore them for about three and a half minutes today, doing everything she could to kick them off before she finally succeeded.

Special exposure Wednesday

2009-05-06T21:52:00.006-04:00

(Easter 2009, almost 17 months old, left; Easter '08, five months, right)

A year ago, Joel & I thought it would be fun to stick Hope in her Easter basket because she was so tiny. This year, we decided to do it again. She didn't fit as well and was none too pleased. Her legs didn't fit and I had to kind of squeeze her in (another example of my great mothering). It made me realize that as slow as we think Hope is growing -- about two ounces a week -- she IS growing and these photos remind me of that.

By the way, Hope has officially gained back all the weight she lost from the nasty stomach virus she caught (10 ounces) and then some. She's now up to 11 pounds, 8 ounces. Hip-hip-HOORAY! (You'll notice I use 50 million more exclamation points than Joel. I love 'em!)

Happy Hump Day!

A new sheriff in town

2009-05-05T22:25:00.005-04:00

Sorry, folks. You've seen your last karate-kicking chimpanzee for awhile.

Yes, you read the last post correctly: I'm taking over the blog. For a year and a half now, Joel has dutifully signed my name to the end of the each post but in reality, he was really the man behind the curtain. Yes, I did the fact-checking (he tries but I'm better remembering all the details) and editing but the magic was really all his.

And the truth is, the blog is Joel's baby (besides Hope and Lulu, of course). He'll probably hate that I'm sharing this but he spends HOURS lovingly crafting videos of Hope as Godzilla or the night Lulu eating Hope's hearing aids (one of my favorites; I still laugh thinking of that steam coming out of Hope's ears). The writing part only takes Joel about 15 minutes but it's the videos that he puts so much effort in. And he's so good at it.

But now it's my turn. So, fellow bloggers & readers, here's what you can expect from me for at least the month (or until Joel goes nuts and is dying to put together some whacky video on Hope on "Dancing with the Stars" or a Lulu western. I'm sure there's some footage out there with chimpanzees in cowboy hats and holsters):

1. More basic details & milestones: I laugh sometimes when Joel writes long, windy posts about Billy from Family Circle and how it helped shape his cynicism (or something like that) but fails to mentions that Hope has two teeth now, is almost waving, hit the 18-month mark last Friday and just transitioned from home therapy to all school-based therapy. I think there's nothing wrong or boring about sharing the basics. I want to share more of those because they may be small beans to some people but they're huge to us.

2. A mother's point of view: Let's face it. Moms and Dads approach things differently. I realized that once again when Joel's family came to visit two weeks ago. I spent days cleaning, washing sheets, scrubbing the floors and menu-planning. Joel put the newspaper in the recycling bin the day before they arrived and his work was complete. Anyhow, I'm excited that I get to share my thoughts on things.

3. More of a dialogue: I'd like to create a little more give-and-take with this blog while I'm in charge. I follow a lot of other families who have children with CdLS and I love the posts where someone poses a question about a situation or circumstance and wants feedback from readers. I like that.

4. Less videos: Sorry! I wish I was a video mastermind but I'm not. I'm going to learn how to make my own, soon, so maybe I will post some. Who knows.

5. Honesty: I hate sugar-coating things. Maybe it's my Midwestern background. But I promise to be straight with you all about what's really happening, warts and all.

Well, I think that's it. I'm really excited to be taking things over for awhile. I think one of the biggest challenges for me will probably be posting regularly but I'll do my best.

Thanks for following and hold on for the ride! Hee haw (imagine chimpanzee in cowboy hat here)!

Billy's taking charge

2009-05-03T16:38:00.008-04:00

I learned cynicism at a very early age from, of all places, "The Family Circus."

Even as a 7 year-old, I found it maudlin, repetitive and ripe for ridicule. Every day, the single-panel comic strip had the same plot contrivances: Grape soda is spilled, all the kids say "Not Me" and a smirking ghost named "Not Me" sneaks away; dorky Dad asks Billy to run a simple errand and he walks around the house, jumps on the bed, eats cookies and completes a labyrinthine circuit before, 45 minutes later, takes out the trash; bratty Dolly tattles on Jeffy for a mild transgression like praying with his eyes open; and one of the kids asks an aw-shucks, so cute-it's poignant question.

There's also my favorite: Artist/dork Dad goes on vacation and leaves 8-year-old Billy in charge. He draws crude cartoons that make his father and mom look like Do-Do birds. It was the redeeming feature of the strip for me -- an anarchic, Kids Rule the Roost takedown of The Man -- until I realized the Billy had been 8 for three years, his drawing never improved and the artist, Bill Keane, was pulling a fast one on impressionable minds.

Thirty years later, I'm pulling my own "Family Circus" routine, but this time, it's legit. I am going on a blogging vacation for at least a month, and Mo is taking over. For 18 months, the division of labor on the blog has been thus: I write 'em; she edits 'em, hectoring me until I tone down the over-the-top metaphors and -- horror of horrors -- get my facts straight. Usually, I complain, scream, stomp my feet in protest and relent. After five-plus years, I am beginning to learn a few things about marriage.

Mostly, I'm eager for a break from the computer and want to enjoy the sunshine. But I want to keep the blog going and feel I haven't maintained the quality or quantity I'd like in the past few months.

I am excited to share the wealth. Mo is a great writer, quite funny and spins a good yarn without resorting to obscure pop-culture references. She has a perspective that I, as a knuckle-dragging, hard-salami-eating male, lack. Plus, let's face it, after 18 months anything could use some new blood. After a while, I acknowledge some of my posts so verged toward self-parody that they nearly read like Mad Libs.

_____________ (Outdated saying), Hope is _______ (verb ending in 'ing') her pacifier with the vigor of ________ ('70s TV show star) cruising with Herbie the Love Bug or _________ (Cold War figure) banging his _______ (article of clothing) on ________ (piece of furniture.)

So no more ado. I'm eager for Big Mo to get started. And remember: The dorkwad dad in "Family Circus" always came back.

Out of time

2009-04-30T00:03:00.008-04:00

Mo's mother is so continually behind in her reading that she carries an ever-expanding sack of old newspapers. Not only does she never catch up, but with each passing day, she falls further behind, prompting some weird time-space continuum moments and great fodder for teasing.

"Shhhhhh. Don't tell Clem that 'Falcon Crest' went off the air." "How are you preparing for Y2k?" "I dunno why, but something tells me this whippersnapper Ronald Reagan has a shot at the White House."

Well, hardy har har. Suddenly, I can relate, as time becomes an ever-shrinking commodity and it takes me until midnight to complete a month-old collage on Easter. At this rate, I'll be putting the finishing touches on my "Sister and Mom Come to Town" video by Columbus Day.

Back on the radio

2009-04-29T13:36:00.003-04:00

The frequency was fuzzy. We kept fiddling and diddling with the dial, jiggling crumbled aluminum foil over the broken antenna. But we're back on the radio.

Few things in life are more boring that blogs about the lack of blogs, so we'll spare the gory details. The long answer involves a not-as-swift-as-it-seems-on-TV conversion from Windows to a Mac, Lulu eating our homework and a strange cat who popped on our doorstep and promised three magical wishes but instead gave us powerful lesson on love.

OK. We're making the last one up. The short answer is, as they say in the news business, no news is good news. As most with blogs know, the longer you go without posting, the easier it is for the urge to post to atrophy.

And the truth is, things are going pretty well. Hopesy kicked her cold, she's been a terrific mood, laughing at everything and nothing and infecting us with her giddy enthusiasm for the same. My dear ol' Mom, lovely sister and suddenly-stronger-than-me-and-it's-scary tween nephew visited as well, giving us another excuse to avoid the blog like a bacon-chomping tourist back from Mexico.

We'll get better in May. We promise. Unless the sun starts shining or something.

The Impostor

2009-04-13T22:25:00.018-04:00

The Impostor has left. We don't know who she was. We never did get a ransom note. But we're happy she stopped wearing Hope's clothes, slurping her Pediasure and soiling her diapers.

It was a strange, creepy trick, not unlike whoozit -- Beelzebub? -- and Regan MacNeil in "The Exorcist." We figure the Impostor must've pulled the switcheroo somewhere in Cleveland, giving Hope the heave-ho and pulling the doppelganger routine on us.

We know it couldn't have been our happy-go-lucky, inquisitive, curiously-obsessed-with-buttons-and-zippers-fussbudget. The Impostor cried a lot, didn't seem to care about much besides sleeping and generally seemed aloof and miserable.

After two weeks of dealing with the no-goodnik, we were happy to show her the door and welcome back the kid who laughs uproariously when we put a pair of way-too-big glasses on her face. We dig her. She's mostly all the way back now, although the Impostor has been seen lurking in the driveway, tossing dice and muttering under her breath.

It was a rough go for a while, dealing with the Impostor. But Hope had it far worse, dealing as she was with whatever it was for two weeks. The fog lifted slowly, but it's been sweet and nice to be reacquainted with our happy girl. We missed her a lot.

Jiggity jig

2009-04-08T08:30:00.006-04:00

We're back. Hope was released from the hospital mid-day Tuesday. After a week doing her best imitation of wet laundry, Hope has perked up. She's eating again, plays with her toys and isn't sleeping away the day.

We're happy campers. But mostly tired. For a place that is dull as dirt, the hospital sure can be exhausting.

Yuck face

2009-04-02T09:01:00.002-04:00

We're now into Day Six of the "Whatever It It, It's Sure Got Her Sick" mini-crisis, hopeful for some serious, double-whammy, reverse-mojo "announce it on the blog and the opposite is sure to happen" luck.

After waffling, we took Hopesy to the Emergency Room about 3 a.m. Wednesday. She stayed for about 10 hours, felt a little better, and has since settled into her new, troublesome routine: Serious lethargy, a lot of sleeping, little if no appetite and the all around blahs.

Poor Mo has called the doctor about six times, we went back to the hospital Friday afternoon for blood work and are trying our darndest to avoid dehydration. But it seems like Hope is stuck in a bit of a vicious cycle: The more she feels bad, the less she eats, the less she eats ...

We're hoping it'll run its course soon. Some nasty stomach thing has been making the rounds that usually lasts about 48 hours. With her, we double that and cross our fingers. The docs say she should emerge by the end of the weekend. Still, we fret and worry. It's tough seeing our little spitfire mope around like a sack o' moldy potatoes.

Update: Hope went back to the ER on Saturday afternoon, not long after my lame attempt at harnessing the reverse mojo of the blog failed miserably. She was admitted late Saturday night and probably will be here at least another day or so.

Rock city

2009-03-31T22:18:00.005-04:00

We're the first to admit it: Cleveland may not top anyone's vacation list. Sure, the onetime Mistake on the Lake has some fabby public places, a nifty waterfront and a gee-whiz Rock and Roll Hall of Fame. But as vacation destinations go, it's probably somewhere between York, Penn., and, well, Detroit.

But Cleveland does have one big advantage: It's 3 1/2 hours from Detroit, which makes it an ideal weekend retreat for a little girl who can endure just about 3 1/2 hours in a car seat before going absolutely bonkers.

We spent Saturday and Sunday in the Forest City, as a weekend getaway mystery trip birthday excursion from Big Mo to Yours Truly. We stayed in a nice hotel, walked around, saw the sites, went out to dinner, took in the very cool Rock Hall, ate junk food and, all and all, had a lovely time.

In fact, we would dare say it was liberating. With winter and Hope's slow growth, we're still tepidly emerging from our nourishing yolk. But as she does every time, Hopesy made us proud: The kid is a terrific travel companion. She barely fussed, endured her old man's stories at the Rock Hall about The Clash and, when it all got too damn boring, took a nap.

We returned Sunday night full of vim and newfound courage to spread our wings further and more frequently. We can do this! We were lame to be so careful! The only limitation is our own mind!

Monday, the vomiting began. Then came lethargy, dehydration and an overall peaked appearance. Three calls to the doctor and some waffling over the emergency room later, we're still in the throes. Cross-our-fingers, sign-of-the-cross, knock-on-wood, we think Hopesy is slowly emerging. She's at least begun to keep some food down tonight.

We're kicking ourselves for what we did or didn't do, but maintaining our mantra: She could have gotten sick anywhere. Don't blame Cleveland. It's got enough problems.

Seriously, we're worried like anyone and hopeful the experience doesn't curtail our travels. Hope digs the out-and-about. It's good for her, and it's good for us.

Hoofing

2009-03-23T20:47:00.001-04:00

More walking from the mover and shaker. New computer. Still getting the hang of it.

Round of applause

2009-03-17T21:23:00.007-04:00

Hope has a new hobby. After months of encouragement -- some quite silly -- that involved exaggerated jumping up and down, shimmying and shaking in front of her, and so many "pat-a-cake" games that the baker man has filed a union grievance, Hope is finally clapping.

We come up to her, wiggle about and clap like we've seen a monkey solve a Rubik's Cube. She puts her hands together, ever so hesitantly, in delight. And we squeal like the aforementioned monkeys.

It's been a gradual evolution. For a while, Hope would simply clasp her hands like a contemplative Nelson Mandela. She liked it so much she would sleep with her hands together, evoking those corny but be-still-my-heart illustrations of praying kids that are in dens of grandmothers everywhere.

Then, for what seemed like months, Hope would slowly bring her hands together, discover something off in the distance and forget what she was doing. Then, at long last, she finally put it all together and is clapping like she was in the Catskills.

Mo is pleased as punch. So am I. So put your hands together for the girl who's finally putting her hands together.

Goody Hope

2009-03-07T13:04:00.006-05:00

Hope got new hearing aid molds recently. They're a bit too big, making her ears jut out. Hope is so self-conscious of the goofy look that she's become adept and whipping them off seconds after we put them in.

Mo's solution: A bonnet that makes Hope look like she's gearing up to share the first Thanksgiving with those kindly Wampanoags or burn witches at the stake along with those other no-goodniks in "The Crucible."

It works. Sort of. Hope is so stunned by the fashion effrontery that she becomes paralyzed with shame. She doesn't grab her hearing aids. But she doesn't do much else either. She just sits there, dumbstruck, thinking, "Why am I wearing this silly hat?"

Too bad for her. She looks too cute to take it off.

Saturday night strutting

2009-03-04T00:18:00.009-05:00

We have to admit: Our first reaction was Huuunnnh? The thing looked like a pizza box on wheels, the sort of unsteady tippy-toppy, woopsie-daisy death trap yanked from store shelves eons ago.

The thingamajig -- I guess it's a walker -- was a gift from Hope's grandparents, Clem and Beef. They taught four kids to walk using the contraption, which is little more than a white piece of plastic, wheels and a little basket for a carriage.

It seemed hopelessly outdated, the toy equivalent of treating a cold with cod liver oil or leeches. But, hey, they're Hope's grandparents. They're good enough folks. We'd humor them, take it out of the box, throw it in the basement, move it to the living room when they visit and tell little white lies.

Of course, Hope's in love with the thing. Initially, she would hang out and play with her toys. Slowly, she learned Hey. If I stand up in this thing and lean a little, it moves. From there, she would lurch about the house, thrusting herself like Michael Phelps -- minus the boutique bong -- leaning toward the finish line.

Like parents seeking to strike a Pavlovian cue, we would encourage her with objects she desired -- a remote control, a straw, her own shoe. She'd huff. She'd puff. She'd lunge and lean until she got her prize and promptly plopped it in her mouth.

Now, she's using it to walk. Honest to goodness, across-the-living-room, Look at Me It's Saturday Night strutting. In no time flat, she'll be a menace to the cat, we're sure.

It's a sight to behold and another reminder that the ol' grandparents may yet have a few tricks. We're still not sure about the cod liver oil, the miracle cureall that is A&D ointment or claims that a little water with bay leaves can cure the common cold, but credit where credit is due ...

Reminder from afar

2009-02-25T21:23:00.017-05:00

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.

Presidents' Day

2009-02-16T22:33:00.007-05:00

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.

The hunt for K

2009-02-11T20:46:00.003-05:00

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.

Hot to trot

2009-02-04T21:38:00.018-05:00

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)

Chalfonte Kid

2009-02-01T14:15:00.006-05:00

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.

Audacious Hope

2009-01-20T07:52:00.005-05:00

We hear the cynics. We travel a treacherous road. We foresee tough days, but emerge heads high, countering fears with strength, resolve and optimism.

We're talking, of course, about Hope's weight. She has finally, officially, surpassed the 10 lbs. barrier, weighing in at the doctor the other day at 10 lbs. 4 oz. For those keeping track at home, that's 15 oz in about five weeks, a nice spurt for someone who took four months to gain 1 lb over the summer.

After much experimentation, heated coconut oil and carefully calibrated concoctions, we've switched from formula to Pediasure, which has about 6 calories more an ounce. Plus it tastes awesome, like a warm malted milkshake, rather than the diluted puke water that was her staple.

And like Mom's old saying about watched kettles, we've given up religiously weighing Hope every week, holding our breath as the numbers moved, and then exhaling in frustration in disappointment. We still fret about her weight, and are meeting soon with a pediatric endocrinologist to determine whether hormone therapy would help.

But today, we're happy and hopeful. That other thing that happened yesterday was pretty cool, too.

Fate and frostbite

2009-01-18T08:48:00.012-05:00

("Hope, I am your cousin!")

Oh, winter. How I hate you.

It's been an intriguing week: Numerous single-digit days, another 8 inches of snow, a stir-crazy dog who hasn't had a walk in days, two blown tires on two cars, a mistaken confidence in my ability to change the second tire of my life on the coldest night of the year, and a "What were you thinking?" from a doctor who gave me penicillin for the frostbite on my knee and fingertips.

The tale of comeuppance and coincidence begins with one dumb declaration.

"Actually, I don't think it's that cold," I told colleagues Friday morning, hours after the mercury dipped to -15 and set a record.

Never mind that my winter-survival skills consist of walking 20 feet from my car to the garage. I grew up in Maine. I know cold.

Hours later, in keeping with my habit of delaying routine maintenance until the eve of big trips, I changed the oil that was 7,000 miles overdue and bought a spare tire to replace the flat one that hung on the back of the Jeep for four months. Mo was leaving the next day for the birthday party of her nephew three hours away in Grand Rapids.

A snowstorm was forecast, and I had a vision: Mo and Hope, stranded by the side of the road, eating upholstery to survive. I'd blown a tire in our other car on the freeway four days before and been rescued by a drunk hobo and another passerby who actually knew what he was doing. That stuff temporarily jolts you into becoming a responsible car owner.

Feeling smug, I was driving home when I heard a rumble, rumble, rumble. Two lanes over, I spied a ramshackle van and sneered "You, sir, have no business on the road." Twenty seconds later, the distant rumble became immediate thunder, and I knew I was in trouble. Again.

I called AAA. Thirty minutes just to talk to an operator. I eased into a gas station, called Mo and shrugged off her entries to pick me up. How hard can it be? I did this once 20 years ago: Raise the jack, remove the wheel, put a new one on. I'd be on the road in 10 minutes.

She called back three times, offering to drive the 2 miles to get me. Each time, I assured her I had it covered. Within 30 minutes, I adopted a new strategy: Look as pathetic as possible and hope someone takes pity on me.

Someone did. A postal carrier named Michael with a sweet tooth. We were out there another 30 minutes, in sub-zero temperatures, jerry-rigging a too-small jack with bricks and remnants of the blown tire.

I asked how I could pay him back.

"Just do something nice for someone else," he said.

Faith in humanity renewed and proud of halfway changing a tire, I drove home in triumph. Twenty minutes later, my knee swelled to a stiff magenta mass. The next day, waiting to buy more tires, a silver-dollar sized blister formed on my knee, while smaller ones popped out of four fingertips.

I went to the doctor. Mo and Hope didn't make the birthday party. It snowed all day, while I thought of what could have been: Both of them stranded with no spare tire, eating the dashboard and cursing me. I was grateful fortune smiled on them by frowning on me.

I hugged them extra tight. Mo had other ideas. She inspected the pants I carefully hid in the hamper, producing Exhibit A in People v. Dunderhead.

"I can't believe you wore jeans to work with a hole in the knee," she said.

"But it was casual Friday!"

Early birdy

2009-01-15T21:01:00.002-05:00

Success! I have beat my self-imposed deadline of posting Christmas photos before MLK Day.

Prodigy

2009-01-10T21:34:00.006-05:00

Hopesy has a new obsession: A plastic xylophone toy my parents gave her for Christmas. It's a standard-issue, nine-key, "Do, a Deer" affair that Hope has embraced after initially viewing as a big, red pacifier.

It's been nifty watching her progression the past 10 days. When she first got it at my sister's house in Connecticut, Hope didn't know what to make of the thing. She tipped it over, certain there was frosting or another yummy treat lurking on the other side. We played the keys, hoping she'd get the hint. She'd eat the mallet.

Soon, she realized that -- now, wait a minute here -- noises come from the thing when the keys are struck. That was a revelation. She'd smile, wave her arms, and then eat the mallet.

Eventually, she learned that she needs to hold the mallet and strike it with the keys. This was such terrific insight that she'd wave her arms as fast as she can, drop the mallet, pick it up and eat it.

But slowly, a bit more every day, her body is acting in concert with her mind. She'll grasp the mallet, strike the xylophone in quick, thunderous succession, giggle and laugh at the wonder of it all, before eating the mallet.

We think it's an early sign of prodigy. Or perhaps, finally, after lo these many months, she's teething. Either way, it's a great show.

We're back

2009-01-08T23:31:00.007-05:00

Thousands of genuflections for the prolonged blog break. We have good excuses -- a holiday season that gets longer, more exhausting but richer every year, too many Christmas cookies to eat, a mini-vacation from the computer -- but there's nothing more boring about pontification about the lack of pontification.

We have much to report: A wunderbar trip to see my family in Connecticut; Hope's new found prowess as a xylophonist extraordinaire; secrets to surviving her second airplane ride (there aren't really any. She's a swell traveler); and Mo's uncanny knack for stuffing two downcast suitcases with the contents of the Smithsonian and still hitting 50 pounds on the nose every time.

We'll get to all that stuff soon. Promise.

But first, a film that likens Hope to Godzilla. We have priorities, after all. And I have too much time on my hands.

Cardiac Christmas

2008-12-24T08:12:00.004-05:00

Hope saw the two most important people yesterday: Santa and her cardiologist. She was ho-ho-hum about Santa, but kicked, giggled and waved her arms for the cardiologist. The girl's got some suspect priorities.

But maybe she was on to something. The cardiology appointment is a biggie. We've worried about it for weeks, in our familiar way. First, we deny and refuse to discuss. Then, as it approaches, we feel sick to our stomachs and paralyzed by dread until we're in the waiting room thinking, "Oh God, we're going to spend Christmas in the hospital."

It's not the ideal strategy, but so far, so good.

And it sort of works: Hope's appointment went well. Her heart is still a bit abnormal. She has a narrowing of her aorta, which could be suggestive of a mild coarctation. Some blood appears to be flowing a wee bit faster than it should, which could lead to other problems down the road. But not now. Her numbers are great. Her heart is working as it should. There's no change from seven months ago.

In short, good news. We don't have to see the cardiologist again for nine months.

Merry Christmas indeed. Phew.

Holiday mayhem

2008-12-21T22:29:00.005-05:00

Silent Friday

2008-12-19T07:13:00.004-05:00

It's snowing like kookoo crazy. No time for prose.

A parable of poop

2008-12-12T08:46:00.001-05:00

The call came precisely at 4:50 p.m., EST, on Dec. 10.

"We have a breakthrough," Mo reported.

Cue the joyous exultation.

As if we needed a reminder, we learned again this week that all of life revolves around poop (except perhaps those pesky 65 years or so between toddler-dom and seniorhood.)

We had, plainly, a poop emergency. Hopesy hadn't taken care of the TCB since Saturday. Granted, there was one mere nugget on Monday. Beyond that: Lots of moaning and groaning and writhing and ughhing, but four days without satisfaction.

What had we wrought? We broke the cardinal rule of regularity: consistency. We switched Pediasure to Pediasure with fiber, and then fed her an organic chicken baby food she'd never eaten. We strayed from the routine of only switching one foodstuff at a time.

Bingo, bango: Disaster and restless nights. We tried prunes. We force-fed Milk of Magnesia. We begged and cajoled. But during stretches like these, bowel movements have a way of dominating life and conversation.

"Say ... do you think the tragedy in Mumbai is an outgrowth of failed colonialism or an inevitable flare-up of tribalism?"

"I can't believe she hasn't pooped."

"If I do say so myself, that $700 billion bailout sure seems like money well spent. Cheerio, Congress!"

"Smell her diaper. Has she pooped?"

"An army of aliens is swelling at the front door, singing Christmas carols that only Anne Heche can understand."

"Why won't she poop?"

On and on it went. Already saddled with a nasty cough, poor Hopesy would strain so hard tears streamed down her cheek. During a visit to the doctor, she made odd guttural sounds that vaguely replicated the mating call of a libidinous right whale.

Finally, relief came. Hope huffed, puffed and blew ... OK. Enough with the metaphors. We shared our plight with old friend Dr. Spitenup.

"Had you considered suppositories?"

We had one reaction: Duh. Thirteen months on, we're still slow on the uptake on this parenting thing.

Knock on wood

2008-12-08T08:26:00.009-05:00

This is the 100th post of 2008. I probably should write something profound, about the continual comfort of the community we've found through the blog or the cathartic effects of being able to occasionally unburden -- and perpetually make yahoos of -- ourselves.

All are true. No doubt. But I've got nothing. And that's great.

When we started the blog 13 months ago, we didn't know what we were in for. Hope's health seemed dodgy. We were astounded we got to take her home from the hospital, and then terrified by the prospect of taking care of her alone. We worried about surviving a winter of seclusion. Her heart issues seemed so grave we didn't dare verbalize them. We feared the future -- not only the prospect of life with CdLS, but getting so far ahead of ourselves, beyond the immediate crisis, that we could even have the luxury of far-flung fear.

In short: perfect material.

Good news for us, bad for the blog: As it always does, life seems to have rocked itself into an equilibrium. We have the same concerns and worries we always do. We still visit the same roster of doctors and have the same over-arching concerns. They just don't keep us awake like they once did. Sometimes -- coin over shoulder, pat Buddha on the belly -- life seems downright mellow.

It's been trending that way for a while, which is good. Hence three months of videos recreating Lulu eating hearing aids, mashups with Scooby Doo and imagined debates. It's caused no small amount of angst, chin-scratching over the direction of the blog and occasional publish-or-perish paralysis. During my most self-important moments, I've asked: "Oh no! Have I run out of things to say?" as though I'd once dispensed pearls of wisdom worthy of Mao's Little Red Book.

But then I remember what a kid told me once in high school detention: "Don't take yourself so damn seriously. Let's party."

Such encouragement sent me on a 12-year spiral of cigarettes, beer and video games, but the point remains: We have fun with the blog and are grateful we've found a small corner of the Internet. We're blessed to connect to so many CdLS families and honored so many folks still care. As Mr. T says, the rest is just jibber-jabber.

And of course, as Mo ruefully notes, I've probably jinxed us for life by proclaiming things to be easy as Sunday morning. As we've learned the hard way, there's a lot worse in life than a lack of material.

Sniffle, sniffle

2008-12-07T19:00:00.005-05:00

My mother used to tell me we get sick when we can afford it. Forget germs. Forget hand-washing: Colds only strike when we let down our guards and -- uh oh, look out, sneak attack -- those nasty viruses sneak up and bop us in the nose.

I'm still not completely sure what she meant, but I've repeated the homey axiom for years and even believed it in a weird, kizmit-meets-karma kind of way.

Well, we let down our guards. The first snow has fallen and the whole house is sick. Hope has some serious snot and a cough worthy of a pack of Salems. I'm walking around the house with wads of toilet paper stuck up my nose. They cut down on tissues, and Mo thinks it looks sexy. She's feeling a bit better, but was blowing her nose like the Boogie Woogie Bugle Boy from Company C. Lulu is lying around, hound-doggedly, barely interested in Hope's soiled diapers.

Amazingly, this is the first time we've all been sick. Last year, when Hope's health was more precarious, we avoided any ailments. Going by my mother's standards, that's probably because we absolutely, positively couldn't afford to fall ill. Or it could be that we were germ-phobes worthy of Howard Hughes, rarely left the house and insisted or surgical masks and gloves at the first sign of a cold.

We've since slackened, of course, and this episode is a healthy reminder that we need to get back with the program. Thankfully, Hope seems to be in a good mood and only slightly cranky, but we're also aware that she's a 9+ pound 13 monther and our margin for error is slight. She's again getting a monthly Synagis shot, the super-expensive antidote to ward of the RSV infection.

So it's back to hand sanitizer, vigorously sterilizing toys after kids touch them, massive doses of Vitamin C and, for good measure, hot toddies for everyone.

Holiday siesta

2008-12-03T20:53:00.015-05:00

Hands down, no question, ask us again and we'll roll our eyes and utter juvenile remarks, Thanksgiving is our favorite holiday. Some of the appeal is the simplicity, aw-shucks goodness of eating good food with loved ones and the lack of pretense about the day.

Much of it is comfort from the Groundhog Day-like sameness of it all, year-in, year-out.

Wake up late. Eat. Look at the circulars. Half-heartedly discussing shopping on Black Friday. Laugh at the nonsense of the prospect. Eat. Turn on the parade. Don't watch it. Eat. Watch the Lions humiliate themselves. Turn it off. Dress. Head to dinner. Sit around. Yum-yum, turkey. Mmmm. Seconds. "Oh no, I shouldn't." OK, thirds. Pie. Coffee. Sit around. Give thanks. Let's play a game. No, honest, we won't argue this year. Keep promise for 10 minutes. Argue. Laugh. Huggy-huggy. Happy happy. "This was the best Thanksgiving ever." Sleep. Wake up. Uh Oh. Everyone is sick.

So it was once again this year, and perfectly so. This time, there was a twist: Hope didn't get sick. (Knock on wood, rub rabbit's foot, toss salt behind shoulder, Beetlejuice, Beetlejuice, Beetlejuice) Everyone else did, at least for a little bit. And we extended Thanksgiving with a long weekend up north, hence the blog break and .... introducing ... snow girl.

We think she dug it.

To Nicholas

2008-11-23T11:53:00.014-05:00

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.

Updates galore

2008-11-19T11:22:00.006-05:00

In newspapers, you get blamed sometimes for failing to follow through.

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.

Small side of tiny

2008-11-18T18:58:00.004-05:00

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.

New tricks

2008-11-15T19:01:00.007-05:00

It's 10 a.m. on Sunday, and these are the moments that make me smile. Hope is in a strange contraption known as an exersaucer. It's a big gizmo toy companies created after parents sued the bejesus out of them for baby walkers: Round, orange and plastic, it has a seat in the middle and allows Hope to spin around 360 degrees and monkey with about 10 gadgets.

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.

Two Scorpios

2008-11-09T20:06:00.005-05:00

The bad news: I live in a house with two Scorpios. The good news: Lulu is a Leo.

Big Mo turned the Big 33 today. Good times abounded: Massage (pros, not my rub-a-dub-dub, you're done); religion; culture at the Detroit Institute of Arts; good food; good sweets and, soon enough, neck-twisting and booty-shaking at 50-and-still-kinda-sorta-kicking-it Madonna.

I've gushed enough about Big Mo, but a little more couldn't hurt. I'm one lucky doobie. Look at her. Look at me. She makes me laugh, she tolerates most of my poop jokes and has the world's biggest, toughtest heart ... even if she does insist on dressing our daughter in Halloween gear six months a year.

Who loves ya, baby?

One year

2008-11-09T13:09:00.013-05:00

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.