Wednesday, November 29, 2006

C - A - T is CAT

A few months ago I transferred from working in Manhattan to a location much closer to home. I went from commuting 2 hours each way to 40 minutes. Thank heavens for that! It's a wide open office layout with workspaces very close to one another. For the most part I keep to myself and no one really knows me here. I'll warm up eventually, but for now that's just fine.

I imagine my co-workers must be perplexed when hearing my phone conversations with my wife. Ours is a language so commonplace to us yet foreign to others.

This is a fairly common dialogue from my end of the phone.


How high is he?


Did he ever come down from breakfast?


Do you think it's because of the site change?

I thought the reservoir looked fine.



Uggh! He's crying?

Tell him he can't have a snack until he comes down.

How long ago did you test him?

OK, talk to you later. Yeah, pork chops will be fine.

So what can my co-worker Candice be thinking? I imagine it's a little something like this:

Wow, this new guy is really handsome. I mean if you're into that sort of Brad Pitt meets George Clooney meets Ralph Fiennes meets James Bond type of thing.

Still, dazzling good looks aside, there's something odd going on at home with this guy. Not sure what it is. At first I thought his son was having a pot smoking problem. But he has a picture of his son on his desk. He can't be more than 4 years old. Not possible, right? Though I think I'm starting see what's going on here.

I think they recently moved. They had a "site change" as he calls it. Apparently they uprooted the family from some place near a "reservoir" and now the son is really angry. So angry that he has climbed up somewhere very high like the roof of the house or a water tower. I'm not exactly sure where. All I know is he's been up there since breakfast and refuses to come down. Meanwhile it seems the wife is "testing" him while he's up there. Just insane! I mean seriously, lady! Get a ladder and get your son before he gets hurt. Now's not the time for C - A - T is CAT!

Monday, November 20, 2006

Tuck in Your Tubing

Charlie woke at 5 am yesterday, hobbled into our room and said his tummy hurt and he had ketones. He was 470 something. He threw up. We cursed the pump yet again before seeing that Charlie was right. He had large ketones. Doctors and pump educators chalked it up to a bad site. We're growing weary of bad sites. It's happening way too often.

I wish ketone wasn't in my 4 year old's vocabulary. As his treatment for diabetes changes, we're constantly learning new words that I wish we hadn't. Bolus should be the name of an evil alien emporer that Charlie draws. Basal (basil) should just be an herb. The Ketones should be a 50's doo-wop group.

I even catch myself as I too am changing with this new pump lifestyle.

"Charlie, tuck in your tubing."

I'm like a robot dad talking to my robot son.

"Charlie, tuck in your tubing. Didn't mom ask you three times to change into clean sprockets? And for heaven's sake, when was the last time you reconfigured your vision processing system module?"

Despite our daily struggles with this all-consuming disease, I am blessed and thankful for my beautiful family. We're pretty fortunate. Charlie can run like lightning, he can swing like a monkey. He can hear, he can see. He can laugh.

Man, can he laugh.

Not everyone is so lucky.

Happy Thanksgiving.

Friday, November 17, 2006

Sugar-Free Candy Land

Something I dug up from a couple of years ago.

As my green, plastic gingerbread man stood stranded in Candy Land's Molasses Swamp for three whole turns, I noticed something troubling. The lurid temptation of sugar and candy was all around us in the games that my children played. Fisher Price's Sweet Streets lined the floors with pastel-colored candy shops and ice cream parlors. Strawberry Shortcake paraphernalia was not only everywhere, the artificial smell of chemical strawberries infiltrated the air.

It was upsetting to watch my 3-year-old son Charlie pretend to gobble up the gooey gumdrops along the Rainbow Trail. Charlie was diagnosed with juvenile diabetes when he was 1. There will be no gobbling of gumdrops for Charlie.

Why isn't there a game out there that my son and millions of his diabetic brethren can relate to? Isn't it long overdue? Perhaps Hasbro should get with the times and come out with Sugar-Free Candy Land?

Casinos also trouble me. What about when Charlie is older (7 or 8) and develops a severe gambling addiction? The slot machines will only serve as a constant reminder of treats that will spike his blood sugar. Cherries, plums, oranges - all filled with high levels of sugar. Why not have images of sauerkraut, barley and kippered herring? Imagine the joy when winning the jackpot on SOY BEAN - SOY BEAN - SOY BEAN!

It's bad enough that I have to toss a blanket over my daughter Maeve's head when she wants to eat a "real" cookie. In a distant corner of the house, she hides from Charlie like a ghost, her little head bobbing under the heavy blanket as she crunches in the darkness.

While the other kids get lollypops after visiting the doctor, we give Charlie a tongue depressor with cotton balls taped on the top. "Use your imagination," we tell him. "Mmmmm, grape!" I say, the cotton pulling on my tongue like a spider web as I give it a good lick.

His birthday parties come to an awkward and silent halt when a thwack of the pinata produces a downpour of chopped broccoli.

In the kitchen, I'm forced to stick an entire Hershey bar in my mouth as Charlie rounds the corner.

"Where's Maeve?" he asks.

"guh ree uh froe rer rumph," I tell him, the chocolate blocking the airway to my lungs.

"What's in your mouth?" he asks.

"Duna gish."


"Duna gish."


I finally swallow. "Tuna fish."

"Yucky," he says.

"Yeah, it's yucky. You wouldn't like it."

Halloween is not exactly a blast for a diabetic child. It's like winning a 10 minute supermarket shopping spree - overstuffing your cart with 200 pounds of ground beef, prepackaged cheese, detergent, etc. only to be told you get to bring home just one box of Kleenex.

At some point in his young years, I fear he will lose interest in Halloween altogether and view it as pointless. Maybe if I made his diabetes more known in the community, neighbors would offer him pretzels rather than smorgasbords of Starbursts and Skittles. Maybe next year we'll dress Charlie up as a 3 1/2-foot-tall sticky pancreas, holding a sign that says "out of order." I think it best to be subtle. I wouldn't want to embarrass him.

After Charlie's diagnosis, I said there was nothing funny about diabetes and vowed never to write about it. I also thought he would never get used to the daily routine of numerous finger pricks and insulin shots. He's just a little boy. Things change. Charlie's strength and bravery overwhelms me.

Tuesday, November 14, 2006

Pump: Should it Stay or Should it Go Now?

If it stays, there will be trouble. And if it goes there will be double.

That's how we're feeling about the pump these days. We're at a crossroads. I know it's only been two months with the pump, but we're losing our patience. We're just not seeing the progress we had hoped to see. The wife is so fed up, she's even set a 6-week deadline. If it doesn't clean up its act, it's outta here.

We're still waiting to see the pump in action. Waiting to really see it do its thing. In the past two months, we've tinkered with our settings ad nauseam. It's just so damn frustrating that we still can't get it right. Sure, Charlie has decent blood sugars occassionally, but rarely for a full day from beginning to end. Very often there's at least one part of the day when he's too high or too low.

We want to see the pump keep his blood sugar level overnight, when food is not a factor. But we almost always find ourselves running in circles. "OK, tonight's the night," well say confidently, doing our best to stay positive. But it never fails. We almost always have to intervene in some way. The result often makes him too high or too low.

"Wake up, Charlie, you need some juice."

Or we just flatout lie, taking advantage of the foggy, dreamy state he's in.

"Charlie. Charlie! Here's the juice you asked for. C'mon Charlie, open your eyes."

We're not waking him up because he's low per se. But he's about 110 with still some active insulin working. So we feed our little lab rat just 2 ounces of apple juice because we don't want him too high, don't want him too low. Want him JUST right. Charlie falls back heavy on his pillow and is out.

Half an hour later he's 88. Fuck! More juice.

"Charlie! Charlie, wake up. Here's that juice you wanted."

He sits up, his eyes still closed. He moves his lips and reaches blindly like he's playing an imaginary saxophone until we manage to navigate the juicebox straw into his mouth.

My wife will get up again and test him at 1 am and again at 3 am. Somewhere in between that or after that (it's all a haze), we'll get up again to change his clothes because he's soaking wet with pee because of all the juice we force-fed him.

7 am comes and my wife looks like a beaten up heroin addict. I do the honors.

"What is he?" she asks weakly.

"Not bad. 119," I say proudly.

"Huh," Susanne says. "Was a pretty good night."

Monday, November 06, 2006

$14,830 !!!

Wow! That is how much Team Charlie's Angels raised for juvenile diabetes research in this year's Walk to Cure Diabetes. Thank you all so much for your support in what was an incredibly successful fundraising campaign.

Scientists are closer than ever to finding a cure and many believe it could be reached in Charlie's lifetime. Your generous contributions have brought us one step closer to that momentous day. We are so grateful.

We have also received so many kind notes and words of support. We're fortunate to have such great friends. The response from our team's fundraising efforts has been overwhelming and heartwarming.

A special thanks to our family and friends who braved 40 mph wind gusts, c-c-c-c-cold conditions and the ever-present odor of farm animals as we walked the Cook College campus of Rutgers University. We looked splendid in our DIABETESAURUS - MAKE IT EXTINCT t-shirts.

Charlie enjoyed the day. He sloshed in a muddy field, scared the bejesus out of a group of horses and even got a chance to use his Jedi mind tricks on rival walkers. Sorry about that Madeline's Mission.

Me and the boy manning the Charlie's Angels table

Strolling for a cure

Shivering for a cure

'Ssup. Now ya see me ...

... and now yooz don't

Lady Maeve

The fam (after several attempts)


How you doin'?

Brooke and Charlie

Charlie with Brendan, Jade and mom

Friday, November 03, 2006

It's not a rollercoaster

I have described diabetes as a rollercoaster for the last time. I had to stop myself from using the metaphor in describing this blog. It's not at all a rollercoaster. I happen to like rollercoasters. Rollercoasters are thrilling. Rollercoasters are also predictable. The ascent, the descent, the twists, the turns. You can see it before it happens. You can brace yourself. Nope. Diabetes is not at all like a rollercoaster.