Without Envy

Raising a child with type 1 diabetes to live life to the fullest, and other things that make us happy

Cruddy American Lesson #One

And so it begins, Z’s American High School experience.

First lesson: Winning is Everything. And if you’re not good enough to win, you can always fetch water.

Captain_America_ShieldSo, she tried and failed to make the volleyball team. No big deal. She’d only arrived from Germany roughly 48 hours before the tryouts. I’m sure that had nothing to do with the time change of flying halfway around the world, her first trip of that kind, ever. But I’m being too soft, too liberal, or maybe it’s too progressive. I don’t really know. Either way, this is high school sports, after all. No one said she was ugly or stupid. She just didn’t exhibit the whatever-it-takes to make the team (as a consolation, she was offered the role of manager, delivered via email, second only to texting as the most insensitive and cowardly way to deliver bad news).

Furthermore, if you were to read the school’s athletic handbook you would see that the program’s focus is to complement the academic development of well-rounded students by helping to develop character, discipline, team work, and other life skills that are benefit to the student/athlete. Complement. Not build. This is not Habitat for Humanity. Our high schools are not constructing gyms and stadiums for the poor, the homeless, the un-gifted.

Athletics is not about charity, it’s about winning. Or if not winning, by God, it’s about fielding the best possible chance to win. An objective shaped by someone’s opinion. Over the course of a two-day, four-hour evaluation. With little regard for character, discipline, team work, and any other life skill they might achieve playing against their peers. No, sir, it comes down to this one characteristic: Can you crush them?

Forget the fact that there are would-be student athletes all over the world battling various personal setbacks, hardships, and challenges to even muster the nerve or find the wherewithal to attend tryouts, much less have a chance to compete. These young heroes are having to fight poverty, chronic illness, societal and self-doubt, and a host of other formidable, never-ending obstacles the sports world would rather not think existed. To be sure, over-coming adversity doesn’t fit evenly into an athletic mission statement. It doesn’t cry out: We’re number one.

But kids facing down difficulty or, as in the case of Z, pursuing a dream despite the challenges, are, if anything, exactly the kind of competitors who belong on a team. The kind that believe that the will to go out everyday of their lives and do their very best is much more important than being crowned champion. These are kids who know the difference between winning and playing to win. I’d take a squad-full of that attitude over talent any day, hands-down.

And so here we are, with Z not even one week in this country, feeling firsthand the spirited, albeit blunt, competitive drive that has on the one hand made this country strong (and at one time, well respected), but on the other seeks to separate our young people into the haves and have-nots. That sounds to me like the exact opposite of character development.

I know, too, I don’t have the answer. Not everyone can be on a team, I get that. But then again not everyone wants to. Those who do, should. Period, end of discussion. To offer anything less is saying to our future generations and the world at large, this is the true American experience: to be better than everyone else at everything everywhere.

As we’re seeing both inside and outside these proud, imperfect borders, that kind of thinking is simply unsustainable. It is time we think of character, discipline, and team work as something more than just a feel-good phrase in a handbook. It’s time they become something we practice.

Honest Open Arms

It was Richard Bach, author of Jonathan Livingston Seagull, one of my favorite books growing up, who once said: “Rarely do members of the same family grow up under the same roof.” I am thoughtful of that today as we start a new chapter in our home and also in our hearts by welcoming someone new into our family.

The opportunity came to us a few months ago: A 16 year old exchange student living in Germany was searching for a host family in America. The girl—we’ll call her Z—has type 1 diabetes and, according to the area coordinator, was diagnosed around the same time as Lia in 2008. Franca and I talked about it and thought Z perfect for us, and thought us perfect for her, too. We could only imagine the great opportunity her coming here presented, but also the obvious conflict of a teen with diabetes leaving home for a year. With Z’s courage and our experience, it seemed a perfect match.

So the waiting is over and as I write this she sits in a plane somewhere high over the Atlantic, as nervous, excited and hopeful, I assume, as we are after all these many weeks of waiting, exchanging emails, chatting through Skype and Facebook. Today, we finally meet.

There will be a lot to learn for her and for us to learn about her, and while certainly diabetes will be a part of that—just her coming here serves as inspiration and reminder that there is nothing in life save our own fear and self-doubt capable of holding us back—there is so much more to share. About our language and where we live. About family and trust and goodwill. Already the girls and Franca and I have spent time talking about who we are as a family and what values we find important. About sharing our selves with someone else. For days now, we have been ready.

I have always used this blog as a way of culling through the little and big things life throws at us, beginning and mostly surrounding Lia’s diagnosis, using words and my writing to search for some understanding, some clarity, and maybe, perhaps, some direction. It has helped me discover things about myself I didn’t know and on other occasions it taught me nothing at all, just offered a glimpse into the peaceful, happy life we know and strive for, which on second thought, now that I think about it, standing here on the day we open our arms and our hearts and our home to another says a great deal after all.

 

Book Review: The Thyroid Solution Diet

The Thyroid Solution DietFirst off: Don’t let the title throw you. This book is not just about the thyroid or those who suffer from thyroid related issues. Second: Anyone interested in extending their life should read it.

I have for years, since well before Lia’s diagnosis with Type 1 diabetes, been interested in the connection between food, exercise and physical health and this book, which falls along the same lines of Gary Taubes’ Why We Get Fat: And What to Do About ItDr. Bernstein’s Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars and anything by Michael Pollen, does a wonderful job explaining it using both science and a keen ability to speak in terms any layperson serious about their health should be able to understand.

Though the book does not speak directly to people with diabetes (and where it does it is doesn’t differentiate from type 2), it says volumes about insulin and maintaining healthy blood sugars. It is, in short, the hard stuff I wish our endocrinologist was either trained or knowledgeable enough to discuss with us. But Franca and I learned early on that taking care of diabetes meant TAKING CARE of diabetes. Not signing that task off to someone else.

But back to the book. I was much more interested in the first two-thirds in which Arem goes into fabulous detail about sugar, fat and how these foods breakdown and based on various factors combine with the body’s multitude of hormones (but especially insulin and leptin) to regulate/affect/and in many cases generally muck up the body’s natural metabolism (i.e. Garbage in. Garbage out, which reminded me a great deal of Alejandro Junger’s, Clean: The Revolutionary Program to Restore the Body’s Natural Ability to Heal Itself, which I also highly recommend from personal experience). The last third spells out specific recipes, which I may or may not use, but offers to those not interested in coming up with their own menus, excellent examples of not only what to eat, but when to eat it. Great information to anyone, regardless of what state their personal health is in, in terms of converting food to fuel as opposed to fat.

While I don’t agree 100% with what he says—for instance, I don’t follow the low-fat-is-better-for-you theories on health—rarely have I found a food book that speaks so clearly in terms of sugar, fat, hormones, and exercise, and also of aging, stress, sleep, and detoxification and the affect these have on not just our pant size but our mood especially. And that (the mood, not the pant size) is something we all can relate.

Bardolatry

Then there are the books I should have read but didn’t, or did with so little regard for what was in them. I read them—or not as the case often was—for assignment, for a grade, because somebody said that I should. I didn’t read them for pleasure, not usually. Nor for what they said about the world and about human nature. Not for the mysteries they exposed about life.

That’s not to say I didn’t read. I loved reading and have teachers and good parents to thank that my passion for books became strong and long lasting. But given the choice what I chose to read back then did not ask too much of the reader, not with language, tone or content. They had more to do with nightmares, international espionage, occasionally a dragon, certainly a cowboy or two, than with complex multi-layered works that wrestled with universal dilemmas. Not that both can’t deliver a rousing good story, I just tended to stick to the formulaic ones that fell within certain central themes and avoided the more thought-provoking taxonomies of the human condition (nor did I ever talk like that).

George Bernard Shaw—a playwright I never read but probably should’ve—once said, “Youth is a wonderful thing. What a shame to waste it on children.” I’ve found myself thinking about that a lot as I turn the page on another year, with the next chapter a few pages back just sitting there looming alongside my future membership card to the AARP. I think about where the time went and those books I should have read and I wonder how in the world did so many words slip past me. Words once belonging to such a long, storied list of authors I’d fail just mentioning a handful.

There is another famous saying though (un-attributable, but backed up by science nonetheless): You’re only as old as you feel, and with that sentiment in mind I’ve made a New Year’s Resolution to re-visit what should have served as my formative discover-myself-in-literature years. For the next year, starting with January, once a month I plan to read a work from one of the greatest writers ever known—or not if you believe in those identity theories—the Bard of Avon himself, William Shakespeare.

(Oddly enough, Shaw himself, apparently, would have thought such a commitment ludicrous, at least in terms of following down that path in pursuit of a serious observation into social problems, as he disapproved of Shakespeare as a thinker and philosopher and to show it coined the term bardolatry.)

That said, it might be too late for Shaw to change his tune, but it’s not too late for me. Besides, with Zane Grey and Louis L’Amour having given up the ghost, I need something to fill their esteemed place.

Here’s my list of books and the month I’ll be reading them. If you’re interested in tagging along and sharing your own thoughts, I’d love the company. Think of it as an invitation to the D-Bard Book Club.

  • January              Hamlet
  • February            Romeo and Juliet, of course
  • March                  Much Ado About Nothing
  • April                     Macbeth
  • May                       Henry V
  • June                     The Sonnets
  • July                       A Midsummer’s Night Dream
  • August                 Othello
  • September         King Lear
  • October               The Tempest
  • November          Julius Caesar
  • December          The Winter’s Tale and Twelfth Night

 

 

Just Around the Next Bend

As Steve mentioned a few weeks ago, we packed up the gear and the kids and headed off to the mountains of Southwest Virginia for some much needed back-to-nature time. No cell phones, no computers, no television or Red Box. A chance to detox from the connections that keep us firmly rooted in our busy lives. And also the opportunity to remember that there is a great, big, beautiful world out there and the best entertainment is often the sharing of stories with those with whom we share it.

This was our second foray into the wild with diabetes and to be honest we felt like pros. Meals were planned to the nth detail, the food pre-measured, pre-packaged and pre-labeled, and in some cases even pre-cooked. The load divvied up amongst us. Supplies checked and re-checked. Our plan for managing all things diabetes researched, discussed and settled. All that was left was the leaving.

In terms of blood sugar control, we opted to try something new: dose 100% for the food Lia ate, and use negative temp basals to reflect the increase in activity. This turned out to be a better plan than last year’s and easier to manage. The first half-day, we only put the temp on for four hours and then forgot to renew it, so she battled some lows later in the day. For the rest of our trip, we put on temps for twelve hours before we left for the day and this worked out perfectly for the most part:

By the Numbers (Data from Diasend)

Average Blood Sugars While on Trail: 153
BGs within range: 67%
BGs above range: 16%
BGs below range: 5%
Average daily basal insulin: 8.2 U (a full 2.3 units less than at home)
Average daily bolus insulin: 11.5 U
Average BG correction: 8%

The Hike

We hiked a total of 22 miles: 8 miles the first day to the top of Mount Rogers; 8 miles the second day to the Scales; and 7 miles the third day back to our car (two miles on VA 603).  Both girls did a great job keeping up and staying in high spirits, even when feet and backs hurt from the rocky terrain and from the climbs and descents.

On the first day, Lia hiked all day with her pants on backwards and didn’t even notice until lunch. She also fell over once when having to get over a fallen tree and needed help getting up from her overturned turtle position. Our hike was mostly uphill, and rocky only in places. The night was cold but not unbearable and it took us longer to get up and going on the second day than on the first. We lost time and had to adjust our route by cutting across the park on a horse trail, which in hindsight was a bad idea.

Horse trails, designed for horses, are filled with large loose rocks that are difficult to walk on. The horse trail was four miles long and muddy. At one point, Steve was out front and saw a copperhead snake. He turned around just in time to see Lia nearly step on it! Their quick reaction saved her from a snakebite and a disastrous end to our trip

(and possibly an upcoming plot line for a novel). We were all shaken so much after this that we just wanted to get to our destination and take a load off. The four miles felt like eight and Steve’s near-constant assurances that Scales was “just around the bend,” made Krista and I want to scream.

Change in Plans

We love Southwest Virginia. The beautiful vistas we saw during our three days were some of the most breathtaking views we’ve seen as a family. We saw our favorite friends, the feral ponies of the park. At Scales we encountered 50-60 heads of long-horned cattle, and continued to hear their lowing long into the night when a mama and her young were separated at dusk. Unfortunately, on the second day, our memory card malfunctioned and all the pictures from the first two days were mistakenly erased! We did manage to take a few on the last day.

On our last morning, we awoke to frost and a temperature of 25 degrees! Before the girls woke, Steve and I decided not to spend our final night at the campground as originally planned, but to head to West Jefferson, NC for a night at a hotel.  We ate breakfast and everyone was ready in record time. On our way down the mountain, we encountered a young man who was through-hiking the Appalachian Trail with his beautiful black German shepherd, as well as several other

campers who were short-term hikers like us. The last two miles on the road were brutal. We were once again subject to Steve’s continued assurances that the end was “just around the bend.” We were happy to finally see a sign designating the Grindstone Campground.

For all the preparation and work that we put into going on our trip, nothing compares to going to the great outdoors. It sounds like a cliché, but the clean air of the countryside, the reduction of noise and light pollution, allowed us to see things we would ordinarily miss. We noticed each other, our idiosyncrasies and habits, manner of speaking, and things we say. We listen.

And yes, diabetes, our unwanted companion, is always along for the ride. But the planning, preparation and organizing we do in advance allow us to put diabetes second, and Lia and Krista time first.

To say that we enjoyed our trip is an understatement. For three days the girls didn’t bicker, they rarely complained, and we, the parents, did not need to scold. We were surely tired when it was over, but this is the one time a year that we truly reconnect, without electronic intrusions of any kind. We are connected through our disconnectedness. We live simply and purely for these days, and we are better for it. We feel confident that we can plan for even longer trips, even if diabetes has to come along for the ride. It is Lia’s favorite activity that we do as a family and this year it has made me think of the old Steve Winwood song. It is true that life goes on too fast with these trips we hope to slow it down.

“We’ll be back in the high life again
All the doors I closed one time will open up again
We’ll be back in the high life again
All the eyes that watched us once will smile and take us in
And we’ll drink and dance with one hand free
And have the world so easily
And oh we’ll be a sight to see
Back in the high life again”

Metaphorically, that is.

 

For those interested in our supply lists and menus, here they are:

Supplies

  • Glucose meter w/ test strips, lancet device, extra lancets
  • 2 spare infusion sets 2 syringes
  • 2 vials of 50ct test strips 1 vial of insulin
  • spare meter extra batteries for meter and pump
  • glucagon kit spare battery cap, spare cartridge cap
  • Emergency info, copy health insurance card, and prescriptions
  • glucose tabs

The Menu

  • Dinner on Friday:  Fried chicken, potato chips
  • Saturday
  • Breakfast: Whole Wheat Bagels with cream cheese (with chives, bacon, and sundried tomatoes)
  • Lunch: Veggie Burgers, dried apples
  • Dinner: Gnocchi with sage butter, bacon, and sundried tomatoes
  • Sunday
  • Breakfast: Apple Almond Couscous
  • Lunch: Ollalie Wrap (spinach and whole-wheat tortillas, cream cheese, roasted pepper pesto, and Israeli couscous, with bacon)
  • Dinner:  Manly Man Orzo
  • Monday
  • Breakfast: Strawberry Almond Couscous
  • Lunch: Esmeralda wrap (spinach and whole wheat tortillas with cream cheese, avocado, sundried tomatoes and bacon)

Snacks

The Kitchen

  • 2 stoves
  • 2 pots with lids (1 small, 1 large)
  • 1 serving/stirring spoon
  • 4 sporks
  • 4 bowls
  • 4 cups
  • 1 cutting board
  • ½ sponge
  • camp dish soap
  • 4 small cloth placemats
  • 1 wiping cloth (for drying dishes)

 

Back to D-Wild

In honor of our upcoming 2nd Annual Into D-Wild Backpacking Adventure, I’d like to share the post Franca wrote about last year’s family trip. We’re taking what lessons we learned and  heading back into the woods, this time hiking longer (4 days) and further (27 miles)—but with hopefully less gear. We’ll follow up with a fresh story in a few days of diabetes and the great outdoors.

Click here to read Into D-Wild, published October 9, 2011, by Franca.

Logic, Strength and Love

One of the great things the internet has brought is the ability to reach out and make a difference in the lives of people we’ve never met. I’ve been a part of that phenomena for almost three years now, since starting this blog about raising a child with type 1 diabetes to live life to the fullest. To me, helping others is essential to fulfilling that goal. I might even argue, it’s the entire goal.

Last summer, I was thrilled to discover & support my good friend, Dan Masucci, as he was just starting his loving and exceptional short film about a family coping with diabetes called, DxOne. If you’ve somehow never heard of it, well, get ready, it’s about to take the diabetes community by storm. Dan’s a fantabulous director, an excellent writer and the film is a true to this world depiction of what life is like for a child with diabetes.

Now comes another film about diabetes I’m pleased to support. Give a listen to Jason’s video intro.

“Logic, strength and love”. That sums up just about everyday with diabetes. How could you not support that?

If you’re a parent of a kid with diabetes, have diabetes yourself, or just interested in doing something good today, don’t wait. There’s only a few hours left for Jason to hit his funding target of $7,000. The good news is he doesn’t have far to go. So click on over to kickstarter, here, and give your pledge.

Good luck, Jason

A Lesson on Atoms
(or Letting Go)

When it was early summer vacation and close enough to the end of the school year for Lia to still be considered an elementary student and not a rising sixth grader Franca and I weren’t sure what changes we’d make to her diabetes care plan to meet whatever new challenges arrived with middle school. Other than a few frustrating moments—a teacher withholding candy for some asinine reason, the immaturity and arrogance of young boys, chaos around the lunch bolus—school and her diabetes for the most part had gotten along. At least there were no panicked drives across town or phone calls that made us question why in hell we weren’t home schooling (not that had to do with diabetes anyway).

In fact, Lia’s school does a pretty good job of making us both feel like we’re not wasting our time sharing with them—sometimes more than once—facts about highs and lows, helpful tips for teachers of students with diabetes, unique details of Lia’s own treatment and management of her disease. They appear interested, concerned. They ask questions for clarification, offer personal testimony and eye witness to Lia’s strong character, her stoicism, her quietude and composure. By their words, or mostly with just their silence, they acknowledge this one true thing: In terms of diabetes, Lia is in charge.

It’s a question of independence and one that her mother and I were, and still are and will be for many years to come, struggling with as we sat down and talked about the upcoming school year. To understand why you must first have a child and then that child must get sick and be diagnosed with an illness for which is there no cure. Only then will you understand a parent’s worry of letting go. There is no other training for this, no software simulation that will help you understand. And, as I’ve alluded, children with diabetes make taking care of it look like a breeze. Poke. Test. And Bolus. Move on. Next lesson, please.

I’d like that to (but it won’t) help you appreciate our routine for the past couple of years which has been for Lia to call from a phone in the classroom, or the office, if necessary, and talk with one of us about her blood sugar before she does any bolusing. Same with lows. Call, then correct, or correct if you have to but give us a call right after. Because there is no school nurse, it’s just what we had to do. It’s what made us feel safe, because we were in charge, not Lia.

With age comes change however. Like atoms, of which humans are made up of many (about 7,000,000,000,000,000,000,000,000,000), diabetes is not something that can be divided. We cannot take some, say just the parts of it that keep her safe and sound, and leave the rest for Lia (those parts that let her cut in line if she has to pee, or drink juice during English class). As she gets older she’ll gradually assume more and more of the whole until there is nothing but worry and hope that is left for her mother and father. I don’t like it and would do anything to change it, but it is what it is. I can’t fight it. But what we give up we give up in the smallest of increments.

Already Lia is showing signs of her readiness—wrong word. Surrender, perhaps is more fitting—to take on more. So for middle school we’re giving her a new tool to help her succeed, but at the same time still keep us informed. With a cellphone, she’ll no longer have to endure phone calls standing in the doorway next to the hall, where kids are pushing and shoving past, jockeying in the way kids do, while trying to share with with me her blood sugar number. She’ll no longer have to take time out of her measly lunch period fielding questions from me that usually start with: So, how’s it going? As if I forgot she’s at school, and not a sleepover at Grandma’s.

Now—she’s been back to school for four weeks—she texts us from her seat. Before or after she eats, sometimes not at all, but those rare occasions we remind her of our expectations. She texts us, too, if she goes low and has to correct. She texts us other things as well—”Can BB (her friend) come over.”—but mostly she keeps her messages on topic, so she can get back to the things that a middle schooler finds important, like how in the world did anyone ever arrive at a number with twenty-seven zeroes. Okay, maybe that’s not exactly important, but it is, at least momentarily, a bit mind-boggling. Which will likely for her and most others pretty much sum up middle school.

Inspiration: For When You Need It Most

A Moveable Feast

I don’t even own this book, but for some reason it is always there on my mind or in the back of my mind or otherwise someplace near to it. When I check it out of the library, I usually keep it through the maximum amount of renewals (9 I think) and thumb through it almost daily, reading bits and pieces of it here and there, discovering something new every time, and not just about Paris, or Hem, or that era, but amount myself and how I choose to view the world. Having written that just now, it sounds heavy, I know, but trust me it’s not. It’s actually quite simple and down-to-earth.

I can’t remember what drew me to A Moveable Feast the first time I read it—it was probably at my wife’s suggestion, but I do know it was on my writing desk the day my daughter was diagnosed with the autoimmune disorder, type 1 diabetes. Obviously there was no connection to Hemingway’s Paris and this affair—we live in the American south and there was no drinking, no horse racing, no boxing or famous people involved—but I found nonetheless something buoyant about the writing itself that helped me come to grips with this, our own life-changing event.

Shortly after the diagnosis, I began writing this blog and what Hemingway’s writing of Paris, and his other, fictional work, too, of course, but Paris was real, what it taught me was to identify the emotion, find it in whatever action or person that gave it to you and write it down in such a way that it’s honest and clear so that if any one else reads it they will see and experience the same emotion too. It set a perfect example for a father who was facing what is and will probably be one of the saddest, most painful situations in his life, if only because of how unprepared and little I knew about it. For as Hemingway once wrote himself: The world breaks everyone and afterward many are strong in the broken places —A Farewell to Arms, so too had the world, it seemed, broken me and those I loved, but through writing about it I felt stronger. You can’t ask much more from a book or its author.

 

Originally posted on my Goodreads Q&A

Fix. It.

Not quite related to diabetes care, management, complaints of, progress in, fed up with, tears over, yada yada yada….but I think this relates to my recent post Hulk Smash, in which I reflected on my inability to fix things.

Annie Leonard’s project The Story of Stuff has always counted Franca and I as two of their biggest fans—we love the idea of Reduce, Reuse, Recycle and now this, her latest venture in responsible consumerism: Repair. Give a listen as she talk to the folks at Ifixit.org and instructables.com and maybe it will invigorate you, too, to think about how you fix something when it breaks BEFORE you buy it, or going when step further, how to make it yourself.

The Good Stuff — Episode 4: Fix it, don’t nix it!