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.

You Should Know

Day 5 of Diabetes Blog Week. The topic: What is one thing you would tell someone who doesn’t have diabetes about living with diabetes?


This is a hard one for me. But it shouldn’t be. If you’ve followed my writing at all, you know with what vigor, emotion and honesty I’ve sought to unearth and define for myself—and for others—so many of the deep, troubling aspects of living with diabetes. I’m talking beyond the mechanics of blood sugar checks and carb counting, beyond IVs and Christmases spent in the hospital. Beyond shots and bruises and tender, hurt feelings.

These are things I never understood about myself or about life or creed or my family and the people I love. Tiny outlooks. Perceptions. Conclusions. Sentiments both large and small that arrived not at the end of some long and incredible journey as perhaps I once eluded, but which sank in slowly, over time, in the face of a mountain of resistance and struggles against them, turning them away, begging them leave us—leave her—alone. At some point there is nothing left to do but embrace them because they are all there is in this world and all there ever will be until such time as things change. And they will, one day.

Life is a revolving door. Attitudes come, attitudes go. We, too, change. We learn. We grow. We rise to the call. And I suppose if there is but one thing I would say to someone about what it is like to life with diabetes it would be that. It is a vocation, a duty, an occupation that knows no end, no weekend, no holidays, no worry-free golden years. From others it beseeches consideration, understanding, and for some: devotion, loyalty and a faithfulness that anything in life is possible with love.

D-Blog Week: A New Friend

Honestly, D-blog week caught me by a bit of surprise today. I’ve been so wrapped up in… well, let’s just say other stuff. When a friend reminded me and I went out to Karen’s blog, Bitter-Sweet, to take a look at this year’s topics I knew then I had no choice NOT to get on board. This event was such a moving experience last year. It turned writing about Lia and our family and diabetes into something else, something more than just me talking at a computer screen, it was me talking with friends. Which makes today’s topic so much more apropos:

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today!

I can’t recall exactly where or when I first met Tim Brand, writer, poet and author of the blog, Bleedingfinger. I know though that he reached out to me, which I think says a lot about a person. To be sure, Tim goes out of his way to make room in his own life to welcome others touched by diabetes, especially dads, and yields nothing whatsoever to the condition that affects two of this three young daughters. In addition to his blog, he created a popular group on Facebook called, D-Dad: A group for dads battling diabetes, and can be found there regularly posting research highlights, bits of encouragement, and friendly remarks. In fact, there is little you can count 100% of the time on when living with diabetes, but a kind word from Tim at just the right moment is one of them.

Into D-Wild

Steve and I love the outdoors. As parents, we try very hard to instill that love in our children.  When not on a His-and-Her-only retreat (for you other outdoor enthusiasts check out Mount Le Conte, a “primitive” lodge in the Smokies reachable only by hiking. You will not regret it!), we’ve had the kids join us for a wide variety of outdoor recreation in the hopes that our love and respect for nature will rub off on them: camping in the Appalachian mountains; a four-day canoe trip down the Buffalo River in Arkansas; and once to the beach (heat + sand + tent = Sad Franca, so we didn’t do that again).

Three summers ago, just months before Lia’s diagnosis, Steve and I took three days to hike 42 miles of the Appalachian Trail. It was an awesome time together and afterwards we talked of bringing the girls with us on the next one. Diabetes derailed those plans and other than visiting a couple of park-managed campgrounds, it kept us from venturing too deeply into the wild. But only for a while.

This year, we decided we would give it a try with diabetes as our fifth traveling companion. After careful planning–thanks to Mike at Rainforest Treks, a website about hiking with Type 1, as well as Melissa at meewah*betic, for all of their hints about food, insulin, and what to bring; and also to OnePanWonders’ “Dicentra,” for what to cook–we settled on a 12 mile section of trails winding through the beautiful Mount Rogers National Recreation Area of southwest Virginia.

 The Pack List

Our pack list consisted of the usual backpacking fare: tent (a four-person four-pounder, thank you very much Tarptent), sleeping bags, extra clothes and kitchen gear, but also had to include whatever diabetes supply needs and emergencies we might encounter in the woods for the two full days we expected to be “away from civilization”. Steve whittled the list down–with help from those mentioned above–to the following:

  •  Glucose meter kit w/ test strips, lancet device, extra lancets
  • 2 spare infusion sets, plus tubing
  • 2 spare cartridges
  • 2 syringes
  • 2 vials of 50ct test strips
  • 1 vial of insulin
  • spare meter
  • extra batteries for meter and pump
  • spare battery cap, spare cartridge cap (really channeling Murphy’s Law here, thank goodness these things are light)
  • 2 individually wrapped ketone strips with color chart (again, Murphy’s Law)
  • glucagon kit (Murphy again, damn you!)
  • Emergency contact info, health insurance card (we didn’t take along prescriptions, but next time we might. With Walgreens on every town block, who knows)

The Food

As you know, I love cooking and food. Being outdoors is no excuse to leave this passion at home, otherwise it’s just a walk in the woods, not a journey toward some fabulous dish prepared in a single pot on a little camp stove we toted for miles on our back. Things have come along way since the days of some fat man named Cookie serving cowboys beans around a wagon. Still wanting to keep things simple though, I had only three requirements: It had to taste good, it had to be light enough to carry, and it had to help in the control of Lia’s blood sugars. I settled on the following:

  •  Lunch at the Trailhead:  Ham and Cheese, or PB&J Sandwiches
  • Day #1 Dinner:  Gnocchi with saged butter and parmesan cheese
  • Day #2 Breakfast:  Crepes with Nutella, Peanut Butter
  • Day #2 Lunch: Modified Esmeralda wrap (whole wheat burritos with crème cheese, black beans, avocado, and bacon)
  • Day #2 Dinner:  Manly Man Orzo
  • Day #3 Breakfast: Oatmeal with dried fruit, hard boiled eggs, bacon (pre-cooked at home)
  • Day #3 Lunch: Dilly Tuna Salad Wrap

For on the go snacking, each of us carried some variety of homemade granola or trail mix, crackers with Justin’s Nut Butter, and beef jerky. For the likelihood that Lia might suffer a low, she carried glucose tabs, a bottle of juice, and sucked on Werther’s Original Hard Candies whenever she felt the need.

To get all this food where it was needed, our camp, the girls divvied it up by meal, so in addition to each of them carrying her own pack things, they carried a breakfast, lunch or dinner. Steve carried the stove and cook stuff.

 Blood Sugars

For the two days we were hiking, Lia’s BGs averaged 161 and 135, respectfully. She suffered no lows and the highest it climbed was the middle of the first night at 263 (ah, gnocchi…. and here we were worried about carry-over from all that outdoor exertion!). Helping these numbers was a +30% temp basal set for the four hour car ride, a 50% reduction during the hike, and a return to normal once we set up camp (These worked for Lia, please don’t assume they will work for you).

In fact, we noticed that as long as we kept her well-fed with proteins and whole grains, her BG was cooperating just fine. She snacked on the granola, dried fruit and nuts, and relied on the  Werther’s when needed along the trail. The Friday morning breakfast of crepes with Nutella was probably not a good choice. She was headed for a low by lunch–which we successfully avoided–a situation not helped by the empty calories of Nutella (even though it is just so yummy).

We took breaks often. Each time we stopped, we checked BGs and had a snack. We had comic relief when the girls and I put our packs back on:  it was not an easy feat and it sometimes required assistance. Lia ended up in the upside down turtle position many times and Krista took a most unflattering picture of me that I won’t share with you. We all had a hiking stick to help us get up (and down) those sometimes very steep and rocky hills.

 The Hike

When we arrived at the trailhead parking lot at Grayson Highlands State Park around noon, it was a chilly 54 degrees. The foliage in Southwest VA at that elevation is nearing its peak: bright reds, yellows, and oranges already carpets the entire landscape.

What I love most about hiking is the quiet and noticing the details of the forest floor. No one I know cares very much about moss (except my friend, Jenny), but I just love to see all the different and beautiful varieties of moss. During one of our breaks, I asked Steve if he was pointing out the flora we saw along the way. He told me that no, in fact, he was not because Lia was talking about scat and boogers. In terms of quiet well, Lia wanted to tell us all that she knew, and with Lia, a story often takes twice as long to tell.

When we arrived at our campsite on Friday night, we couldn’t believe our luck. The Scales, as they call it, is an old corral where they used to weigh livestock back in the old days, but now, it is an open field surrounded by a wooden fence, a nice, mostly-clean privy, and even tapped spring water. After a long climb to end the day, we felt like we’d won the lottery! It was getting very cold and windy so we set up the tent and the girls began arranging our beds, Steve worked building a fire, and I started on dinner. After the gnocchi, which was hot and delicious, we stood around the fire a little while and gazed at the billions of stars that aren’t normally visible from our “city” street at home. This, I feel safe in saying, was everyone’s favorite and most memorable moment, gazing up at all that dark sky.

That night, the wind howled. The sleeping quarters were cramped, what with the four of us and a big dog to occupy that four pound tent, but we managed. The next morning, we had breakfast, broke camp and set out. It wasn’t long until we ran into a few of the feral ponies that live in the park, one of which allowed the girls to get close enough to pet. The area also sports a vast horse trail network and we encountered a number of people on horseback, one man and his granddaughter stopped and spoke with us for a while at our lunch spot and even gave Lia her first riding lesson! Not long after, we had a big laugh at Krista’s expense right when her retainers (which we told her to put away in the carrying case) were blown off the rock we were sitting on and fell onto a big cow paddy. She won’t allow that to happen again! In the end, it turned out that we out-hiked ourselves and were done with the 12 miles about a half day ahead of schedule.

Our trip was a total success. We had a great time, laughed a lot and spent time together in the great outdoors. We know the girls are willing to go out into the wilderness again to do longer hikes. Lia has an appetite for roughing it. Krista likes it, too, as long as she can be fashionable.  We’d like to take them to LeConte someday soon. We feel confident enough with this experience under our belts to take on something a little more challenging.

 Steve and I would love to venture out again as a couple, too. But that will be more difficult. It’s not Lia being outdoors that worries us; it is us not being there with her. We don’t want to be out there, where we can’t be reached—just in case. Our level of comfort for that isn’t there yet, but it will be one day, we’re confident, when she is older. For now, we take comfort in the fact that she loves being outside and enjoys the small wonders of nature that surround us every day.