Monday, March 21, 2011


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.

Wednesday, March 2, 2011

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.