Resilience

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...

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

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

Birthday and all that jazz

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

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

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

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