Father Knows Best

The following post is a slightly longer version of something I wrote up for the T1D Tuesday blog at TypeOneNation.org. Gina Capone asked me to write a little ditty as Father's Day approaches and to give a bigger audience a look at Type 1 diabetes from the Dad's perspective:

The Maxwell Show. Starring Cassie, Red and Miller

I grew up in a generation raised on a steady diet of television sit-coms and cop shows. Gilligan was always infuriating the skipper, Lucy would scheme on Desi, and Joe Friday always got his man. Strong archetypes like Robert Young and Mike Brady taught us how dads should act. They were all knowing, all patient and had great hair.

No matter what kind of trouble the TV kids got into, you could count on TV dad to sort things through by the end of a thirty minute episode.  Feelings would be assuaged, relationships mended, boo boos properly kissed and cared for.  If a mystery was involved, TV cop or TV dad could piece together the most obscure clues to neatly solve the case.

Real life and being a diabetes dad is nothing like what Hollywood writers prepared us for.

When my first child, Miller was born, I had unreasonable expectations. Upon childbirth, I somehow imagined that an encyclopedic knowledge of automobile and home repair would automatically and magically enter my skull.  Alas, there was no bolt of lightning that granted me the god-like wisdom of TV dads.  Still no bolt with our second daughter Cassie and her diagnosis of T1 diabetes as a 1 year old.

Watching re-runs offered no answers. So I had to rely on real work. I researched online, read voraciously and met with lots of other dads with "daddybetes." Slowly, I began to comprehend the true nature of the disease and the proper use of a socket wrench.

It's going to take longer than 30 minutes (including time for commercials). Unlike network television, life with diabetes can't be solved within reasonable time limits. It takes perseverance, patience and huge helpings of hope. When Cassie was first diagnosed, the doctor told us diabetes would be cured by the time she got to college (she graduates next high school, and there's little chance of a cure happening by next May). We've heard  grandiose claims from well respected institutions and quacks alike. "Our cure's just around the corner," they claim. But we know better. It's not going to be a magic, silver bullet kind of discovery. We believe it will take many steps to get us to a cure.  The good news is that we will make progress along the way - like better pumps, better medicines. We have to celebrate the small successes and research advances, even though we want a true Cure right this very minute. But until we find that cure, dads, like JDRF, will keep working towards "less diabetes until there is none."

And real-world parent problems are messier than TV too. Diaper malfunctions. Girl drama. Boyfriends. You may have seen Bill Bixby wrestle with single fatherhood on The Courtship of Eddie's Father, but he never had to struggle with a missed insulin bolus or faulty test strips. There are intense physical, emotional and social stresses associated with the day to day management of diabetes. Real tears are shed. Yet the rewards and bonds my daughter and I encounter as a result of our struggle with type 1 diabetes is deeper than anything I've ever seen on "Must See TV." Real joys come from real challenge.

Ward Cleaver is great. But this post is my Father's Day salute to the real dads out there. They're the ones that truly deserve the applause.

Bouncing Back (hard)

Last October Cassie's sinus infection turned to pneumonia. Then she got the flu. Then she had a persistent fever. For three months.

We've been in and out of the hospital and seen a battery of specialists. Six months after the first sniffle, she's still not up to her bright and bushy self. It's worried us and frustrated us to no end.

Still not sure what's going on, but the best explanation is that she's been through the wringer and is healing sloooowly. But like a flat basketball, it's been hard for her to bounce back. She's utterly exhausted and her body is run down.

We'd always heard that diabetes could make you more susceptible to things. It  makes it hard to recuperate too. Especially after a big ol' one-two punch. Keep her in your thoughts.

Nutrition Survey for Teens

It doesn't take a rocket scientist to figure out that knowledge about nutrition leads to better diabetes control. Or does it?

All too often, we rely on assumptions and guesses. The only sure way to know is research.

One of our community members at TypeOnenation.org (formerly juvenation) is a graduate student at McNeese State University and is conducting a survey about nutrition counseling and T1D teens (ages 10-18). The survey is for the parents to fill out. It only took me a whopping 3 minutes to zip through. No personal information is gathered. So give our budding researcher Ashley a hand if you can by taking part. Here's the link: http://www.surveymonkey.com/s/QH57FGQ

Monday Morning QB

I'm absolutely amazed at the flurry of analysis after last night's Superbowl game. Every sports show obsesses over one big question: "What if...?"  What if the power in the Superdome hadn't cut off for 34 minutes? What if the Ravens had been called for holding on a fourth down play in the endzone? What if Joe Flacco had been injured in the playoffs?

I guess we're all prone to placing an inordinate amount of attention on hindsight. As we manage diabetes, we constantly second guess ourselves with questions like: "What if we had bolused more for that baked potato," or "What if we hadn't switched to formula so early," or "What if we had checked at 4 am too?"

We beat ourselves up with all these after-the-fact insights. Like football, Diabetes isn't a game of perfect. You just need to make sure you show up, work hard and stay in the game.

MMMMM...Bacon

Superbowl Sunday gives everyone an excuse to make a momentary lapse in their resolutions to eat healthy. The potato chips and nachos come out. 10-piece buckets "go boom." Anything that can be slathered with barbecue sauce is slapped on the grill. This year the network news reported on an impending chicken wing shortage for the big game.

Just because you have to deal with T1 diabetes doesn't mean you have to excuse yourself from all the fun. You just have to be smart about it, and remember to take insulin.

Like her daddy, Cassie has a primal love of bacon. What is usually a low carb (but high fat) food has been exquisitely transformed into a magical gastronomical delight by my vegetarian(!) wife. Below is a snapshot of pecan-caramelized bacon appetizers. It's fitting for a night watching the pigskin, as long you bolus properly for it.

Mmmmmm...Caramelized Bacon for the Big Game

T1D: All in the Family

Cassie, Papa, Mom and Uncle all have T1D

It's unfortunate when I hear of families that have more than one family member stricken with diabetes. It's like that old gag where the comic says, "at least it's not raining," and then a cloudburst erupts.

Yet...

I'm heartened when those very families tell me stories of meeting and overcoming their (multiple!) challenges. No matter how much gets thrown at them, silver linings eventually appear.

In the latest JDRF Annual Report, they feature our family because of our multi-generational T1D connection. Marinda has had type 1 diabetes strike both her maternal and paternal sides of her family tree. It's not something we're happy to be famous for - but I hope we can be a good example of how you can still have full lives, despite the disease.

The lesson we'd  like everyone to learn: that you can and need to take action so future generations don't suffer the same fate.

You can check out the JDRF article here: http://www.jdrf.org/files/General_Files/2012annualreport/reason_31.html

A Diabetes Resolution

Before January is over, I think it's important to set a yearly goal. Lots of people call them resolutions. I like to think of them as self-reminders about what's important for the larger picture.

Sometimes, the day-in/day-out drudgery of managing type 1 diabetes (or any disease) can wear you down. This year I'm taking inspiration from American songwriter Woody Guthrie. In 1942, he wrote his resolutions down in his personal diary. Resolution 19 was "Keep hoping machine running." Resolution 33 was "Wake up and fight." What was true in 1942 is still true today.

We all get worn down. It's essential that we remind ourselves to keep our spirits up and to never give up.


Make sure to read Woody's whole list of resolutions by clicking on the picture below. It's absolutely beautiful:

Woody Guthrie's New Year's resolutions- 1942

How was your day?

My wife Marinda made a very insightful observation yesterday. Diabetes makes us talk differently to our daughter with T1D. And it's not fair.

When Cassie comes home from school, from a sleep over, or to the breakfast table, the default question that immediately pops out of our mouths is, "how's your blood sugar?"

REALLY? How annoying must that be? Parental worry pushes aside normal conversation.

We've done it for so long that even if we simply ask, "how was your day?" it seems like we're asking about glucose control. I imagine that an unspoken, parenthetical question hangs over the innocent question - "How was your day (with diabetes)?"

So we've made a conscious effort to not make a diabetes question the expected greeting from mom and dad. I've tried, "did anybody get into trouble at school today?" or "did anyone make you mad today?"

What do you ask your T1 child?

Superhero

It happened again. That feeling of hopelessness and dread. Cassie had been running high fevers. Her hacking cough progressed to pneumonia. She started showing large ketones and her blood sugars  went through the roof. Two nights ago I was faced with a reading on her glucometer that simply displayed two symbols: H-I. That meant her blood sugar was dangerously high;  her meter could not register a measurable result. It was HI at midnight, 1 am, 2 am and 3 am. It finally got down to 400 (normal is 100) near dawn.

I'm completely spent.

But then... something odd happened.

I got a sweet kiss on my cheek for no apparent reason after a little daddy daughter dinner tonight. A hug and a giggle passed between us. Then I swear I feel a cape drape around my shoulders and a big red "S" appear on my chest. I grow ten feet taller and sprout wings. Suddenly, I'm ready for much more.

Walk Team Kick Off!

One way we fight this crazy disease is by taking part in JDRF's annual Walk to Cure Diabetes. Our local walk is going to take place on Saturday, October 27th. It's getting close to sneaker time.

Cassie wrote an amazing letter that makes it hard not to be a philanthropist for our cause: check out what she had to say on our fundraising web page: http://www.cassiemaxwell.com  

Please consider joining us if you're going to be in Winston-Salem!