Duck, duck...

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

Grateful but guilty

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

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

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

   

(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

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

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

  
(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

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

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.