Journey of Hope

Chatterbox

2012-09-07T10:54:00.004-04:00

Hope has never been a big babbler -- sometimes she goes days, even weeks, without vocalizing much at all -- so it's a total treat when she gets in a chatty mood. I like to believe she has "Ma" down pat.

This video is from Labor Day weekend. Enjoy! Oh, and go STATE!

CdLS Conference, then and now

2012-07-23T14:28:00.003-04:00

I remember the nausea I felt arriving at my first CdLS conference four years ago outside Chicago. Hope was about seven months old and at the time, Joel and I had never met another child or adult with CdLS (other than Will).

My mind raced with possibilities, fears, and worries. Where would Hope fit in the vast variability of CdLS? On the more severe side? More mild? How did the syndrome manifest itself? What was life like for each family? Hope really wasn't doing that much and I was getting eaten up by a bad case of the "what-ifs" and fear of the unknown. I was terrified.

In the end, it was such a good experience. The families we met were so welcoming. We learned a ton about CdLS and it felt great to meet a group of people and never have to explain why my seven-month-old was the size of a newborn. No explanations were necessary.

Fast forward four years and we just got back from our second CdLS conference last month, again in Chicago. I wasn't nearly as nervous as I was the first time but it was still a bit nerve-wracking. But again, we got so much out of it.

We met with specialists who actually know a lot about CdLS and are very familiar with it. We met a ton of wonderful families who again were so welcoming. And we again got to see where Hope fits in the mix. We've always known that Hope is not mildly affected; we still feel like she's more on the moderate to severe end of the spectrum.

Still, I left the conference feeling optimistic -- optimistic about Hope's future, about learning to communicate with her, and figuring out this difficult thing called CdLS and all the challenges and hurdles it throws our way.

I also left ready to work on maximizing Hope's potential. We met a speech therapist, Majorie Goodban, at the conference who has been working with CdLS kids and adults for nearly 30 years. During a consult with Hope, she told us that she believes Hope will speak one day, though possibly not until 10, even 11. She has met kids who have talked that late.

I could've bawled right then and there. Speech is kind of like potty training in my mind -- something we aspire to and hope for Hope, but aren't definitively planning on. But it felt so incredibly good to hear someone so familiar with CdLS say that it MAY be in the cards for Hope. Her only hesitation was when she asked if Hope has any autistic features and if she looks at her hands (Roughly 50 percent of CdLS kids are on the autism spectrum and Hope definitely has some autistic features; she used to look at her hands quite a bit but seems to have outgrown it). That apparently sometimes works against speech. Anyhow, it was still really good to hear and gave us hope.

We also met with a psychologist for a consult to talk about Hope's endless energy and destructive tendencies at times. She said Hope is very curious -- she said this as Hope was making laps through a hotel closet, stopping only to study her cute little self in the mirrored doors -- and that's a really good thing. She also said her energy seems high but she's doing what a lot of babies do (pick things up and drop them); the only difference is Hope is almost five. So while it may seem destructive, it's likely normal for where she's at developmentally.

One cool session at the conference involved adults with CdLS, several of whom live independently and have full, busy, happy lives. Above are two pictures of Emily Turner from Mississippi; the bottom picture is from the first time we met her at the 2008 CdLS conference when she was 14 and the middle picture is from this year's conference. Emily is a shining star in the CdLS community. She recently graduated from high school and she's off to college in the fall in Mississippi. Go Emily! As the picture shows, Hope was clearly taken with her at the final banquet on Saturday.

Will Hope be as high-functioning as Emily? Probably not. But I left the conference feeling hopeful about Hope's future -- about finding a way to communicate with her; about her developing her own tastes, interests, and sense of self; and that hopefully one day she will have some independence, but in her own way.

Anyhow, all in all it was a great conference. Oscar tore up the rug at the banquet on Saturday night. He also adores a book we got there called "Melanie and Tommy have two pet rats and one syndrome," written by a boy whose sister has CdLS. They did a special presentation about their book and yes, the rats were there too. We met so many awesome families; my mom thoroughly enjoyed the grandparents session that was held; and we learned a lot. Until next time...

A quiet girl

2012-02-21T13:24:00.004-05:00

Not long ago, a fellow CdLS parent posted a status update on Facebook about his son's 10th birthday. He mentioned how proud he was of his son and then he wrote something that brought tears to my eyes. He said, "I'd give anything to hear you speak just a single sentence." I get teary-eyed just thinking about it.

Suffice it to say, Joel and I -- and I'm sure most CdLS parents -- can relate. Hope is four and in medical-ese, she is "non-verbal." That means she doesn't speak -- at all. Nada. Nothing. Zilch. She occasionally "vocalizes" -- another medical-ish terms that basically means she makes sounds here and there -- but it isn't often and it can't really be considered babbling or even attempts at language.

The closest I've ever heard Hope to saying a word or even a consonant sound is when she's very upset. She'll say "Ma." You have to listen closely but both Joel and my Mom have also heard her say, "Ma." She may or may not be saying "Ma" in reference to me, but I don't care. I'll take it. I'll take anything that sounds like a word and I'll certainly take "Ma."

Speech delay is very common in CdLS. Most kids don't speak, if at all, until five or six, according to the CdLS Foundation. To be honest, I'm not entirely clear on the physical reasons why CdLS kids don't speak but for Hope, I think low muscle tone may have something to do with. She's considered hypotonic -- meaning she has floppy muscles -- and it makes sense that affects the muscles around her vocal chords, making speech difficult. I think her hearing impairment also is a factor. That's Dr. Mo's take on it.

But just because Hope can't speak doesn't mean we're giving up on communicating with her. We'll do anything to communicate with her.

Earlier this month, Joel and I sat down with Hope's teacher and therapists at school -- PT, OT, speech, vision consultant, and hearing consultant -- and hammered out Hope's IEP (Individual Education Plan) for the new school year. Communication -- in any form -- is our No. 1 goal. Right now, we're working with what's called PECS, Picture Exchange Communication System. Basically, they're pictures with a heavy black outline that kids who can't speak can use to communicate. We have several hung on our refrigerator that Hope can grab and the goal is to get her to give them to us when she wants something.

On occasion, Hope will grab a card when she does, in fact, want a drink. Unfortunately, she also really digs the plastic covers on the PEC pictures so she often grabs them to chew on them. We just got a new set of PEC pictures because our first set was so mangled it looked like it been left on the floor during a Justin Bieber concert. Not pretty.

We've also used devices that have an audio component and a template for PECS pictures to slide into. For example, the last device, called a Go Talk, had 4 pictures in it, all of which had a recorded command such as "I want a drink" or "I want to eat." Occasionally, Hope would use it appropriately. There have even been times where I've seen her grab the "Drink" card from the fridge and go to the Go Talk device and hit the correct button. What a smart girl!

But Hope was very inconsistent with it. Recently, we just had to give the Go Talk back to her school so someone else could use it. We're now trying out a similar device.

Our goal is to eventually get an iPad. Tons of CdLS parents now are using iPads for their kids and I think Hope would love one. Will she use it to communicate? I have no idea, but I think she'll like using it. But before we buy one, Joel and I agree that we need to find some kind of extra duty, super-strength padding to go around it because no one can chuck toys like Hope can. We call her "Shiva, the Destroyer" for a reason.

So that's where things stand with Hope and her communication skills. In the meantime, I'm getting more comfortable telling people that she doesn't talk, or she's "non-verbal," which still sounds so clinical to me. I just had a technician out today to check some of Hope's medical equipment and he was very nice in acknowledging both kids -- I've noticed some people don't acknowledge Hope because she is quiet, which bothers me -- and he said "Hi" to Hope. She looked at him, which for Hope is as close to "Hi" as she gets, but didn't respond. I probably should've told him she doesn't talk, but I didn't. I said nothing. I'm not sure if that's the right response or not.

One last thought on having a child who doesn't talk: Just because Hope doesn't speak doesn't mean she isn't paying attention to what's going on around her or isn't aware of things. She does pay attention and she really does have a lot to say. We just need to figure out the best way to bring it out.

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.

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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.