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Delightful Survivors

The rigid person is a disciple of death;
The soft, supple and delicate are lovers of life.
                                –Tao Te Ching

 

For Diabetes D-Blog Week Day 2 the topic is to tell about one diabetes thing that we do especially well. So rather than go this one alone, I enlisted some help over dinner last night and what we came up with were a number of things we felt pretty safe bragging about—making good food choices, checking blood sugars regularly, working to understand her diabetes better—but all of us agreed at the tip-pity top of the totem pole is Lia’s own self control.

She has her mother to thank for that. I am much better at keeping my cool in a dire emergency, but Franca—and by pedigree, Lia—have true survivor mentalities. They are humble, gracious and love to laugh. They believe in themselves and live in the present. The decisions they make are simultaneously bold and cautious.

Diabetes is hard on a little kid. No, that’s not quite right. Hard is something you do, like sprinting or moving a piano. Putting up tobacco, now that’s hard. Living with diabetes is galaxies beyond hard. The word hasn’t been invented yet to describe this disease for a little person. Arduous. Demanding. Complicated. These simply don’t stand up to the job.

In fact, hard is the word I’d use to describe Lia, not diabetes. Hard as in: firm in her convictions, whose spirit is not easily broken. Someone who meets each day head on with humor, diligence and earnest. That’s Lia. The one who is able to come home from school not in tears, but smiling incredulously with a story to tell of her teacher who in passing out bars of chocolate to the students came to her and said, “I know you can’t have this, but maybe your sister can enjoy it.” Or who during a critical moment of a pump site change on her derriere says to her mom, who is kneeled down behind her about to release the needle, “Wait, can you move your face away a minute” because she has to fart.

Managing diabetes is an enormous, endless task, like cutting tobacco every day of your life, but it is really no match for a will and personality that are as strong and delightful as that of my lovely daughter and her stoic mother.

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A Tribute, of sorts

Franca and I work very hard and with much thought to not let Lia’s diabetes bring her down. There are good days and there are bad days and sometimes we have to work much harder and be much more creative than others. But the human spirit is resilient and we’ve found that sometimes all we have to do is let parenting get out of the way. It’s never easy to see this from just Lia’s perspective, but in most cases, Lia’s perspective is truly all that matters.

For instance:

One morning not long ago, my work was interrupted by a visit from Krista, our teenage daughter. Though I was very busy, I stopped what I was doing and gave her my attention.

Can you believe it? she said with excitement. It’s here, it’s here. It’s finally here.

What’s here? I asked.

The Hunger Games! she exclaimed.

Oh, right. I turned back to my work.

Aren’t you excited? she asked.

Very, I said. Maybe now you’ll stop obsessing so much over it.

Never, she answered and she smiled broadly and then skipped happily out of the office.

It’s true. She had been planning for the movie’s opening day for some time, had bought her ticket a month in advance and gotten her hands on every article of licensed clothing she could, every magazine, every photo. Now that the hour was almost upon her, her joy was simply too much to contain. For certain, it seemed to have the will and energy to last forever.

A couple of hours later, I was still in my office going over my notes for a research presentation I was providing to my local chapter of the JDRF later that night. The subject was the Artificial Pancreas Project and I was looking over the slide deck, when Lia came strolling in. What’s that? she asked, pointing to a picture of a small, handheld device.

That, I said, enables a continuous glucose monitor to talk to a pump to help manage blood sugars better. I scrolled back a couple of slides, to show her how the three things worked.

You mean they talk?

It’s like talking, I said. The CGM sends blood sugars to that smart phone-looking thing and it tells the pump how much insulin to give, or not give, as may be the case.

Lia’s face lit up. How cool is that!

Right, I know.

Can I see that first picture again?

I clicked back to it and I watched her face and she was smiling still and I could see her mind working through what that might possibly mean for her and I was surprised by her excitement and at thoughts that might be at that moment soaring through her head as she imagined the difference such a small, complicated thing would have on her every day life. And then I remembered back to earlier in the day and compared her joy to that of my oldest and the premiere of The Hunger Games.

Two children. Both thrilled. Each by something different.

Was it sad? Yes, to me it was sad as it highlighted something we struggle with everyday, keeping diabetes in its place, not letting it have free rein over everything else in life.

But after I thought about it, it proved something else to me, too, about diabetes, and especially about Lia. It proved that inspiration flows both ways. After all, even The Hunger Games can’t compete with a smooth-talking artificial pancreas.

 

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The Wild Blue Yonder

How do you manage? This is one question in relation to Lia’s diabetes that Franca and I hardly ever get asked. I can’t remember the last time in fact, which is both bizarre and at the same time understandable, because caring for type 1 diabetes is one of those things where looks are not only deceiving, they can outright cloak and camouflage the real dangers and challenges, making it feel like you’re piloting the Stealth bomber of incurable diseases. It’s a ton of commanding work, fraught with great risk, but one no one ever notices, until something crashes.

Helping in this is the fact that Lia is truly a champ. She does what she has to and rarely if ever bitches about it. Certainly, she doesn’t complain to anyone else. Only to us, and that is just how it is because we are her parents and parents know when their children are hurting and denying them a voice doesn’t do anyone good. I don’t care how tough you are. Diabetes hurts. A lot. And often.

As a result, however, what everyone else sees is just this kind, happy kid who sometimes has to prick her finger, give a little extra thought to her food, and fiddle with some contraption she wears around her middle. Big deal. Isn’t she handling it nicely? (Don’t you ever want to say to them: Yes, of course, she is handling it nicely. What choice does she have? She has a job to do, just like everyone else, and that job is to grow and become her own person, with or without a stupid pancreas.)

So on that hand I get it. People see Lia at her best, taking care of herself, growing, learning, further defining her person. And from that I can also deduce why no one would give a second thought to the effect diabetes is having on Franca and I. Honestly, we don’t even give it much thought ourselves. The weight is just something that’s there, we own it. Call it worry. Stress. Whatever. It’s heavy and it’s permanent, like a steel wire cable suspended from the base of your skull and rooted into the earth. You drag it dutifully wherever you go, over and about the landscape, through whatever muck, mire or meadows you find yourself.

What has been important for us is that we have been there for one another, because each other is all who we have—I say this not wonting for sympathy or to sound dramatic, it’s just the way it is for parents of children with diabetes, for the reasons I’ve mentioned above—and the days when we could leave Lia at someone’s house, anyone’s house who doesn’t just think she is handling it nicely but is fully aware of every special nuance, so that we might enjoy time alone, and not brood and toss and turn and wait for the liberating call the next morning, are a thing of the past. Lord only knows how you handle sending them off to college—we will when the time comes, I know, and fortunately we’ve got a few more years to prepare—because parenting is difficult, no matter the objectionable add-ons.

But that’s not what I wanted to write about, further making my point, I now see. People don’t ask how we are doing because they don’t understand diabetes. They don’t know how mentally, intellectually and emotionally time-consuming it can be, they don’t understand how the technology and the treatment, how the very disease itself—you can’t see it, you can’t touch it, hell, most people can’t even define it—how all of it adds up and makes caring for diabetes look easy.

It’s not, but somehow, like so many other parents and people with diabetes, we manage. We suck it up, we cope. We cram it into our schedules like a trip to the DMV, we treat it like a pilot treats their flight plan, just part of the routine, and we carry it with us wherever we go and we do it without too much griping because that is our job. We’re her parents and parents help kids learn to fly on their own.

Asking someone how they manage something so invisible as type 1 diabetes certainly may not cross anyone’s mind, it may even feel oddly unwarranted in a so-you-think-you-have-it-bad kind of way—to be sure there are plenty who suffer from worse—but if you’re reading this and you know a parent out there who is caring for someone with diabetes, do them a favor and ask them how they are handling it. They will probably feed you a lie and say: Oh, it’s just swell, thanks for asking.

But even a pilot with one of the most deceptively, undetectable roles in the world deserves the chance to brag every once in a while.

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Come What Come May

Any parent of a child with type 1 diabetes knows the importance of living in the present. To live any other way is to focus too much on those things that lie beyond our control. Better treatments. Soaring costs. A cure. But what about that other member of the family, the sibling?

For Krista, who’s smack dab in the midst of her teen years, awareness of Lia’s diabetes isn’t enough to keep her up nights with worry, or preoccupied with how to pay for health care, or the whereabouts and funding of research. What she observes and retains is much more immediate: frequent finger pricks, food scales and carb counting, painful repetitive procedures that appear, rightly so, to get in the way of the normal, untroubled life every teenager (and everyone else for that matter) most yearn.

So what happens when Krista gets sick, or more precisely when the symptoms of her illness mock those of what Lia experienced just before her diagnosis?

Worry, that’s what.

Worry about what might be, not what is.

“Come what come may,” said Macbeth to himself after meeting the witches, those secretariats of blind ambition, oracles foretelling the future. “Time and the hour runs through the roughest day.”

I thought of this simple yet legendary line recently when Krista experienced one such medical crisis. She’d been complaining of dehydration and of frequent trips to the bathroom and fearing an infection, or worse, had been taken to see the doctor. They tested her urine for a disorder and found nothing unusual, but a trace amount of ketones. She was sent home and we were told to monitor the situation. Nothing was said about diabetes, her blood glucose level was not checked, there was no hasty rush to the ER. But that didn’t matter. Much like the throne to Macbeth by those witches, the idea had been sufficiently sown: What if?

Later that day we did check her blood and when she wasn’t feeling better the day after that we checked it again. Both times we found it normal. So it was not—or is not yet—diabetes, but the whole thing raised the question: yes, precisely, what if?

What if diabetes struck again?

There are two answers of course to that question. There is the parental answer: We know what diabetes is and we know how to treat it. We’ll deal with it. If ever there was a motto for the parent of a child with type 1 it is “Come what come may.” If it happens, it happens. We’ll manage.

Then there is the child’s answer, which is not an answer at all but more questions: How? Why? What now?

To be sure there are answers to these, just as there were answers when we learned of Lia’s diabetes two years ago. But answers take time to arrive and telling a young person the secret to a happy life is learning to endure is like telling an ambitious but dithering brave warrior of a prophecy he would be king. The reality takes some getting used to. But as Shakespeare understood, even the worst of days come to an end.

Unless, of course, you’re Macbeth.

 

 * * * * * *

A Special Announcement

In honor of my wife and daughters and the pursuit of a healthy lifestyle by women everywhere, we are pleased to announce that beginning this week, some excerpts of the best and more memorable posts from our family’s journey of living with diabetes will appear on Lifescript.com, one of the most dedicated and respected women’s health portals on the internet.

Franca and I are honored to have this opportunity to spread awareness of Type 1 Diabetes and share with others the challenges, the small and large victories that parents, caregivers and people with diabetes demonstrate everyday to live life to fullest.

Click here to check out WOE at Lifescript


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Lending to a Wounded Hand

I’ve been thinking of what to write for this post for some time, going all the way back to last summer when I first began to see for myself the dangers of what I will call over-volunteering. It sounds strange to me even now, all these months later, quantifying the effort I applied to finding a cure for type 1 diabetes like it was some sort of muscle I’d worked to the point of straining. As if I—or anyone else—could do too much to bring an end to it. I can’t. There is nothing I wouldn’t do or give to heal Lia. Period.

But last summer I started to realize something important, something more critical to her care—and my own well-being—than fundraising, research and to a certain extent brotherhood: you must first make time for the present and learn what it means to live with diabetes in the now.

Staying fixed in a tragic moment is hard for any parent, and so very hard for a father who wants only good things for his children. You find yourself always looking ahead for the way out. When the truth is, there is no escaping this.

Our first introduction to the Juvenile Diabetes Research Foundation was at a family retreat we attended one month after Lia’s diagnosis. I can remember quite vividly sitting through the various seminars feeling like I was lost, and I was, like some naive countryman having stumbled upon someone else’s battlefield. I had no idea even what kind of war we were waging. Still later while writing about it, my focus was not on the daily onus of survival but on a clinical trial that afforded me some genetic and vaguely-understood glimpse into the future, a worthwhile effort to be sure, that might help us see if the same thing could happen elsewhere in our family, because even as children we know that monsters can’t hide behind doors that don’t remain closed.

I discovered too there were others like us and it was comforting to know them and to hear their stories and the stories behind the volunteer army that had staged this special event. I was inspired by their mission and especially by their commitment. And so after the retreat I did what anyone might do, I signed up.

One month later I wrote about that lattice work community and how I felt strong and invigorated, compelled by the burden of everything that is good about fatherhood to join the cause and fight to deliver a cure. How could I not? It was my daughter, my Lia who stood to benefit. Just point me, I said, in the right direction.

I was warned at the time that like a cellular organism victory rested not with one individual but on the unified strength of an entire community, and I knew from my own experience that was true of any war. But this was no ordinary war, and the analogy was wrong. Only last summer did I finally start to piece together why.

First, let me say something about a cure. I believe in it. I believe in science and I have faith in the work being done to rid the world of this disease. I support it and will always. I don’t think this way because I have no other choice. I do. Just as Lia will have a choice of her own to make when it’s time. But it is my right as her father and parent to believe that one day there will be a cure for type 1 because I want the best for my daughter and that means living without diabetes.

I believe also in volunteering. Before Lia had diabetes, we worked every summer for the Special Olympics and our time spent there was as rewarding and as special as the name implies. Volunteering, caring for others, caring about others is one of those things that separates us from every other animal on the planet. But we all, myself included, need to aspire to give back as a way of life, not an occasion.

But having diabetes, I now see, is not like any other war, so much so that I’d like never to use that analogy again. This, what we do day in and day out to treat this disease is not a war. War implies two sides and when that person hunkered down on the opposite end of the battlefield is your own body, well, you can see, the comparison just doesn’t fit, and therefore, neither does the role of a volunteer army.

We are, each of us, first individuals and what I had failed to see was what Lia needed most from me was not a hero, not someone larger than life swooping in, giving  their time and their energy to rid her of this awful, invisible thing. What she needed from me was just to be by her side, to help her and hug her and hold her hand, to love and stay close to her here in the present.

She tried to tell me that in many ways. Every time I got dressed up to go to a board meeting or attend some event. I thought it was just her innocence talking or her not liking that daddy was leaving the house. I thought I could do both, be a caretaker and also a knight. Now I believe you cannot. Before you can swing a sword, you have to know how to sharpen it, and that is the point of this:

Learning to care for someone with diabetes takes time, it takes patience and paying close attention. There isn’t the benefit of knowing firsthand what it feels like for your blood sugar to drop, or go high, or your thoughts turn angry by this thing that is such a part of you and at the same time so utterly out of your control. I don’t know what it is like to carry diabetes inside you, other than as a worry, which is why even now I still feel implored to connect this metaphorically to an epic conflict, as if it were Me against Them. It is not. It is Me, and then it is Lia. It is All of Us. Individuals.

Within weeks of that first visit to JDRF, I was mentioned to chair the Walk Committee, then asked to join in another leadership role and was invited to serve on the executive board. By summer, I had become a regular presence in the office, both figuratively and literally. To an outsider, it surely must have looked, as some have mentioned, as if I had drunk from the proverbial Kool aid (an even poorer analogy, if you ask me.)

But then, in the middle of last year I began to see things more clearly and I came to the conclusion that it was a mistake to jump like a general headfirst (and headstrong, I might add) into the foray of finding a cure. I decided it was best to take baby steps, even if that meant backing up, so I could spend whatever amount of time was necessary to learn more about diabetes and what entails taking care of it today, not tomorrow, not for the someday there comes a cure. This moment. Right now.

I do still volunteer with the JDRF, but in a slightly lesser role, and the chapter, I’m encouraged to hear, is working on developing a more effective volunteer program that benefits everyone, not just fundraising. It’s a tricky situation when someone with passion and goodwill comes strolling into your office. You’d be a fool to turn them away. But also I think, and more importantly I believe my chapter thinks, at least in theory, that there is an obligation as well—to borrow from a past U.S. President—to ask not what they can do for you, but what you can do for them, because diabetes is that kind of disease. Where everyone could use a helping hand.

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Man vs. The Empire Brain Building

epiphany / iᴵpif ǝ ni/ n. pl – nies 1. a usually sudden manifestation or perception of the essential nature or meaning of something 2. an intuitive grasp of reality through something (as an event) usually simple and striking.
A shining forth
Aha!

In the summer writing classes I teach at a local university, I talk to the students of there being two epiphanies in storytelling. There is the one most people think of when you ask, which comes at the climax of the story when the characters must decide how to deal with whatever force is working against them. This is the point where we, the audience, are most riveted, as the suspense surrounding the character’s fate is at its most intense.

The second epiphany, which the author James Joyce pointed out and actually comes much earlier in the story, is the moment in which, through sensual detail, the deepest yearning of the main character becomes apparent. It is, to relate it in non-storybook terms, that moment when we suddenly realize that things aren’t exactly as they appeared and we’re brought to a change of heart.

It comes not without some effort, though. You mull and turn it over, you allude to it, catch a glimpse of it at the edge of your mind’s eye. Then you see it and the object falls into focus, and with it comes a deeper understanding. Of work, of one another. Of happiness. How we live and who we are. A catalogue, were it written, according to Joyce, of our most delicate and evanescent moments.

Diabetes can be like that, I think. The outlines are a little bit fuzzy, the colors washed-out, too many of the puzzle pieces are missing to form a wholly complete, perfect picture. The aha! moments, when they arrive, help us mostly to be better caregivers, but sometimes they come and you realize just how alone you are; but even those times are good, too, as you know beyond a shadow of doubt that doing better is up to you.

Because writers are meant to record, I offer here just a short list of D-epiphanies I’ve experienced in terms of treating Lia’s diabetes in this first year and a half. Some you may recognize from previous posts. Feel free to add your own in the comments.

  • Doctors are there to keep patients alive. Anything more than that’s up to you.
  • Passion is great. But don’t confuse passion with need. Before turning your attention to curing the disease, spend time learning to treat it.
  • Shots hurt. That’s why they’re called shots, dummy. It’s stupid to think that anyone can ever get used to them.
  • Most adults, no matter how many times you tell them a thing, hear what they want to hear.
  • Food can be our enemy.
  • Sometimes the road less envied produces the more spectacular journey.
  • Community. Community. Community.
  • How you do everything is how you do anything.
  • It is the experience of our hands that we learn from.
  • There is no bad mood that putting on your pajamas and taking a walk can’t fix.
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Dog Days of Summer

A few years ago I wrote a story about a dog we owned named, Digger. The piece was for a local publication which every August ran a special “Dog Days of Summer” edition printing favorite pet stories submitted by their readers (you can read it here, if you’re interested). The story was, originally-enough, titled “Digger”, and centered around an account of a transatlantic flight the two of us took to Italy. But the story wasn’t about him. It was about me.

At the time, long ago, when it took place, I was twenty-nine years old, a jobless, war veteran and recently divorced, and the only thing certain of my immediate future was the fact that I was in store for a much needed change, starting with my address. As with any such endeavor there were challenges — as you can see if you followed the link — from the very moment the plane touched down, and what I learned about life in the months and years that followed this particular decision was that, unlike the reunion that takes place at the end of the “Digger” story, things never do quite go back to the way they were. There are histories to contend with, attitudes, beliefs, memories. Even were we able to successfully contend with those, also mudding the progress — or regress, as it were — is the fresh, undeniable reality of today, right now, this one very moment.

This summer brought a reminder of this, in many differing ways.

To begin, there was Diabetes Camp, a first for our family. The weeklong, must-do-ritual was for us all terrifying, exhilarating, liberating, nerve-wracking and totally life-changing. In a moment, I will tell you what it meant to Franca and me, but putting it into words for Lia is not only difficult but likely impossible for me, so I’ll just have to rely on a photo.

 

With Krista (and the dog, too!) visiting her grandmother that same week, the time Franca and I spent to ourselves was not only all of those things I mentioned above, but it was rejuvenating, too, to be alone, just the two of us, without kids, without errands, without TV and toys, without arranging play dates, sleepovers and otherwise attending to the rewarding, endless chores of parenting. And, yes, it was, for us at least, a break from diabetes.

I feel okay in saying that … taking a break from diabetes, though I know that Lia did not and will not ever, without a cure, enjoy the same freedom. I think were she to hear me say that, she might misconstrue my comment as, thankful for the break from her. But I trust when she is older, she will understand. Raising a child is demanding. Nothing in nature can duplicate the absolute pleasure or worry that being a parent employs. It is often what comes to define us, day in and day out, which is why our time alone together was so special to Franca and me. It helped us remember and relive who it was we both were before, before kids and before diabetes.

The week ended and we all came back together and picked up where we’d left off. Only we didn’t. Something had changed. Not everything, but some things. Lia, of course, was more independent, reaching new, unthinkable depths in terms of strength and confidence from living and breathing the camp battle cry, Positive Mental Attitude, with so many others just like her. Her spirit and courage are truly inspiring. Krista, too, had returned from grandma’s showing an air of young adulthood that wasn’t so much surprising as it was just delightful to see. With freshman year upon her, she is, I believe, exactly the person her mother and I always raised her to be. Happy. Smart. Trustworthy.

I, too, had changed, in a way I could not have predicted. For eighteen months, I had worked, wrote and read to learn all I could about diabetes and how best to take care of our daughter. With her gone to camp and the daily necessity temporarily lifted, I — and Franca, too — reveled in the way things used to be. So much so that when the vacation ended, I was left for a moment with a wishful longing that was both pointless and questionable.

How much had I let diabetes consume my time? Was I practicing what I was preaching: life without envy despite diabetes? Had I become a victim caretaker to this disease? After all, I had read about it, blogged about it, started a memoir about our first year living with it. I had researched the origins, the treatment, the science in search of a cure; constructed elaborate spreadsheets to help track Lia’s blood sugars; grown meticulous, alongside my wife, in keeping a log. We had volunteered our time, given money, advocated to Congress for change.

In doing all of this had I so fallen out of touch with who I was that five days alone with my wife felt like a once-in-a-lifetime, dream come true?

And what of my own writing, of the novels I had envisioned having published by now? And just as important, what message was my putting that promise on hold sending Lia and Krista? That pursuit of your passion is good until some reason to not comes along?

It shouldn’t be that way, but unfortunately that is, many would agree, the challenge to parenting, holding on to our individuality. It is harder still when the reality is that as parents of children with diabetes we are in a place we never for a moment imagined we’d be. Regardless the age of our children when  diagnosed, we do remember what life was like before diabetes. That is in all honesty a difficult thing to forget. But just as true is the fact that it’s here and setting one’s heart otherwise is a fool’s whimsical errand.

I don’t know what the right mix is, but it can’t be all or nothing. There is out there some happy middle ground, and it’s important to me that I find it. Maybe the key, now that I think about it, is what Digger so innocently demonstrated: There are some things we can control in this world and there are some things we can’t. In the end it’s not the who, what, where or why that defines us, but our actions and the love we have for one another, no matter the situation. Those are the same, or they should be. Perhaps it is our human nature to forget that. Thankfully, there are dogs, who remind us sometimes that all it takes is shrugging it off and climbing into a kind lap.

There is more I could say about our summer… the collapse of the garden and other pursuits of simple living, our consideration for finding a new endocrinologist, but I will save those for another day as I look to broaden the scope of discovering what exactly Life Without Envy means to me. For sure, it will be an interesting story.

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Speaking of Dogs

Take diabetes, for instance. In many ways, raising a dog is a lot like controlling blood sugars, minus of course the extreme health risk. You study the science. You learn the technique. You get up every day determined to do your best and when things go the way you had planned you celebrate. You applaud and pat yourself on the back. Maybe you even dance and talk silly. Whatever shape it takes, you know in that very moment you’ve done something right. And if it goes the other way and not as you’d intended? Well, you might wonder perhaps, as I’d done with the dog: What on earth did I do wrong.

I find myself doing that more than I should and I hope that my feelings of underachievement go by Lia unnoticed. It is something that comes with parenting, I think. Wanting the best for your children, disappointed when you fall short. Even when something like blood sugar can’t always be explained. Trying to understand why it goes up or down is like asking Jake to account for his running off and then, because knowing why is only half the battle — it still doesn’t fix it, you have him describe what he saw. He just looks at you.

The alternative to that is easier, but frankly no less productive. Such was the case when Jake finally returned and I saw him out front in the yard, tearing through the trash bag containing the shells of moules à la marinière we’d had the night before. I stomped and got blistering mad and banished him for good to the outdoors. By dusk I was over my anger and went out to clean him up, only to find him gone once more.

Oh, were yelling to work with diabetes. I could curse and threaten and abandon all thought of ever showing it kindness again, but it would not listen and before the day would turn over, I’d have shed myself of the disillusion and disappointment and let it back into my heart because so much of who we are is not chosen but given or comes to us freely. In learning to accept that about diabetes, I have also learned to love it.

That is a strange thing to say. I love my daughter’s diabetes. I don’t, of course, love it. I hate it. I despise every moment that I or my wife or Lia, or anyone else, has to spend trying to understand and outwit it. I wish it were different for all of us, and especially for Lia, but wishing won’t change anything and if it could there is one thing I would not want for and that is that she were any other child or I any other parent. I love her and so love all that comes with her.

As for the dog?

Commitment. Loyalty. Obedience.

Two out of three isn’t bad.

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Quandary
(Or the Worst Autobiography Ever)

What a bind I feel in these days; yet also prepared, illuminated, and forewarned. The problem, in fact, may be that I know too much, which don’t get me wrong, in this case that’s a good thing.

For instance, I know how much time caring for a child with diabetes requires of a parent. The planning, the prepping, the management. We are fortunate in this last year I was able to dedicate a good part of the day learning all I could about diabetes and using that information to help us better conduct Lia’s care. The challenge of doing this alone must simply be immense. I can only imagine how much further along we are because there were two of us and at the time of her diagnosis one of us was working from home where the opportunity to self-educate is much greater.

But beyond the huge benefit to my being at home, I was not just sitting there waiting for something to fall from the sky that would occupy my time, worry and attention like nothing I have ever known. I was there to write books.

Writing has been a passion of mine for nearly as long as I can remember. When I first started out I would devour books on writing and later read with painstaking detail the biographies of my favorite authors hoping to find the secrets to their storytelling. Of course, there were none. Hard work and dedication, those are the secrets. But I learned that sometimes to get some place you really want to be, it helps to picture yourself there first. Such was my thinking when one day about six years ago, I came home from a day at the office and Franca asked if I knew anything of the Colombian writer, Gabriel Garcia Marquez. I didn’t and so she told me of how he had quit his job while on vacation, then he and his wife sold off many of their belongings in order to eke out a living while he focused solely on writing. What I had when she finished wasn’t a sudden epiphany but one that arrived over the next couple of days: For the years and years of my own hard work and dedication to pay off I would need to take some risk. So we adjusted our plans and set new priorities and eighteen months later I turned in my rung on the corporate ladder for a comfy writer’s chair and began the long, arduous, but enjoyable journey of channeling my passion for writing into paying work.

I could not have asked for anything better. Franca was teaching, the kids were in school, we had set aside savings to offset my loss of income. Finally, for the first time in my life I could just be a writer; and I did, scratching out two promising, albeit yet-unpublished novels, and in the process digging deeper into the crux of who I am that makes me a writer. It was the life I’d always wanted.

What happened next is no surprise. It is what this blog is all about, lives harnessed in mid-step, plans altered. When I think to four years ago and of my departure from the financial security of my job, I am reminded of the many people close to me who applauded my action, assigning it credits like courage and commitment and while I’ve never thought of it as that, more just a stubborn tenacity and a wife who generously allowed me to entertain it, now after what we’ve been through this past year with my daughter, I can tell them what true courage looks like.

And I can tell them, too, how difficult it is to live without making a shed load of money and treating this outrageous disease. It’s beyond hard, maybe impossible. I don’t know yet. Maybe there’s a way to do both and I just haven’t learned enough yet; and wouldn’t that be a wonderful lesson. But the burden of cost is one of my greatest fears, now and especially as Lia grows older. So much so that I’m torn between suspending this dream and focusing now on a new dream: doing all that I can to ensure that one day ten, twenty, thirty years from now when Lia is sitting in some office somewhere dreaming of some other life for herself and worried about the risk, she won’t be bound in her decision by the cost of treating diabetes.

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External Genetistry

It was a common yet unproductive habit in the days, weeks and months following Lia’s diagnosis to do as any worried parent might do and question every external encounter or genetic mutation in our family history in pursuit of where had this come from. Often it wasn’t a very long thought, really more of a bothersome prelude to something more bothersome still than it was anything else, like waiting in line for a flu shot or the feeling you might get when inspecting a food’s nutritional label for what turns out to be no better understanding. Sometimes it appeared irately, a frantic obligation to safeguard everyone in the house, as it did last Winter when I almost convinced myself the diseased scoundrel was hiding amongst our flock of backyard chickens. If you let it you could spend countless, unfavorable hours glued to data of the electronic sort looking into plausible theories. In the end, finding an answer was as elusive (and contrary) as the century-old debate on emotion: do we run because we are afraid of bears or are we afraid of bears because we run.

It was wrong to be driven by emotion though; even when it was your own child and your own family at risk. There was nothing to guide us then other than what we knew and what had been made perfectly clear before we had even left the hospital to come home was that controlling the risks of type 1 diabetes rested soundly on the shoulders of the patient and their caregivers. There were some people who thought that because we’d been made aware of Lia’s diabetes and the symptoms of it had been treated the danger for her was over. Others mistook what she had for type 2 and their attitude leaned casually more toward pity. The most well-meaning but less informed of them all would question aloud were things getting better, and they were of course getting better, imminently speaking in terms of health and emotion. But better and cured are no more related than a book is to ignorance. What it really took, other than knowledge, was self-control and a willingness to reshape our reality to fit the new routines on which Lia’s livelihood now depended.

You could look into your own heart and listen to what it was saying to you only after her blood sugar had been taken and the insulin administered because it was then you felt the safest; you’d done what you needed to take care of her and so this was the best time to surrender to it with little worry of there arising any immediate problems. But you put yourself in jeopardy if you allowed yourself to stay in that one place too long. We were new to the whole operation and things could go wrong, sometimes quickly, so it was important not to forget that the requirement of any situation, good or bad, is not what you find in your hearts but how what is there turns to action.

And so it has been with brevity (and more than a little unrest) that I have over the past eleven months listened to my heart and considered the origin of Lia’s diabetes with no real hope of learning what it is and certainly without having any expectation of doing anything about it. What I uncovered was not a surprise: a family history (myself included) of an auto-immune disorder that has been linked to type 1 diabetes. This along with irrefutable proof that one other genetic mis-coding of mine — congenital anosmia, or the inability since birth to perceive smell — found its way into one of my other children suggests that nothing good would come of digging into this any further.

Or would it? Is there not danger too in following the path to discovery only to turn away in shame? Can anyone tell which grain of sand will cause the sand pile to collapse and which will not? Even rescuers learn something from a mudslide, if only to confirm firsthand that shit does in fact roll down hill.

To relate it in terms of our fear and the bear and the question so often posed, even by ourselves: The worry hasn’t diminished because things have gotten better, things have gotten better because of the worry.

That is the trouble with looking into the heart. Sometimes it works in your favor, sometimes it doesn’t. On some days it felt like nothing else mattered, but mostly there was so much more to think about.

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