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.

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.

Without Envy for What?

I started this blog just over a year and a half ago by writing about Lia’s diagnosis and the challenges, fears and finally acceptance (or not) of living with the perplexity that is type 1 diabetes. I named the blog collectively as I did because that best describes the manner in which her mother and I want Lia to grow: without envy for those who don’t have this disease (a candid reader once pointed out that it could be read the other way: [my paraphrasing] “Without envy, indeed. After hearing about diabetes, who on earth would want it!”).

So, from the very first post to the entry marking our one year anniversary, I wrote — and we lived and breathed — in a way that allowed us to fold diabetes into the framework of our lives, not the other way around. But it has not been easy. Even now, it sometimes feels as if the struggle is all we talk about, with family, with friends, with one another. As if without envy were a premise and nothing more, a lofty achievement abandoned to a dimmer reality. That’s really not how we think about it, but the fact of the matter remains: Diabetes is worrisome, time consuming and often all-encompassing of our attention. It’s only natural that we talk about it, with anyone who will listen.

To be fair, we also talk about diet and food, about health and fitness, about achieving your dreams and living on less, about consumption versus sustainability. In fact, when I took time to think it through, it became apparent to me that the struggles and frustrations we’ve experienced with diabetes could be applied to just about anything. Money. Nurtition. Politics. Social issues. To be sure, the same care management tools for treating a health problem, individually and globally, involves each of these elements and many more, any of which could be, in the right circumstance, disabling.

That’s a roundabout way of saying there is so much more I could write about on Without Envy that I haven’t because of one reason or another, but mostly because writing about diabetes is hard. Way back when I wrote on Six Until Me that I felt “like a pilgrim setting out from our home… hoping to uncover proof that you can take charge of this beast and manage well”, I really had no idea what I was talking about. The word “pilgrim” alone implies someone on a journey toward some end. There is no end to diabetes. It is here and will be here for a very long while.

Which is why, beginning in September, I’ll write posts that seek to redefine the message and tagline of Without Envy: Raising a child with type 1 diabetes to live life to the fullest to include, and other things that make us happy.

More content. More frequency. More… (or is it, less) envy.

I hope you will join me.

Need To Know

Maybe it’s me. In my younger days, I read legal and military fiction — Griffin, Clancy, Grisham — and added to that a war-time stint in the army, so maybe I’m just overly-sensitive to the fact that some people have a need to know and for others it just doesn’t matter. For certain, the argument can be made with any number of things — like reality TV personalities and rooting out evil terrorists — the less most know the better, but with diabetes I’m torn.

How many times can you correct someone for suspecting that your daughter shouldn’t eat sugar? How many times can you explain to others that no, in time, her body will not self-correct, and no, there is not, in fact, such a thing with type 1 diabetes as naturally stabilizing blood sugars?

I’m not wanting to sound critical. I, too, was once one of those without operational knowledge. Now I know managing diabetes takes effort, tons of effort, and it upsets me that there might be this misconception out there that in time or with the right equipment Lia’s body will undergo some monumental correction that will make it somehow less of a burden on her, and us, to keep her healthy. I have said it before and I’ll say it again: We don’t worry less because things have gotten better, things have gotten better because we worry. That’s just the way it is.

Would it not be better for me and my own health to turn a spy’s eye in quiet, calculated silence, honoring with decorum and resignation the restrictive nature of such information? We know. Is that not enough?

Or does the red that I see when I hear these comments suggest to me that a Need to Know security measure is wrong in this case and to keep quiet and pretend otherwise sends the misguided message that the public perception doesn’t matter. It does, immeasurably, matter.

Which is why I have thrown my creative and financial support to the development of a short film, currently in pre-production, called DxONE. Written and directed by Dan Masucci, an award-winning filmmaker and father of a 13-year old CWD, DxONE intends to tell the story through dramatic form of what life is like for children and their families who struggle each day and throughout the night with the treatment and emotional acceptance of diabetes. First introduced to Dan through a blogger friend and then given the opportunity to be part of his worthwhile endeavor, I embraced this project as if it were my own and I believe you, too, will find within the story something personal and moving.

Dan is a lot like me: A loving father and caring husband, a courageous artist pursuing a lifelong dream. I hope you’ll check out the film through his production site or follow Kickstarter to contribute. I can promise, this is one story you’ll be happy to share.

 

 

What a Wonderful Wonderful World

So, seven days, seven things to write about what I’ve discovered is one annoying, rude, sometimes laughable, non-discriminatory disease; and what do I have to show for this most opportunistic effort? Well, plenty.

First, to those who do this every day of the week, I commend you. Because I’m a writer I had some inkling of how difficult it might be to write every day about your lives and diabetes, but I underestimated your compassion, your drive and the regard you must have for this community to share your stories day in and day out. You are really superheroes. Thank you. Thank you. Thank you.

Second, I may bitch and moan and sob, like plenty of others out here in the blogging community, about diabetes and the effect it has on our family, but there is nothing like putting all that into perspective by taking a stroll around the block in someone else’s narrative shoes. Truly illuminating.

Third, it doesn’t take long when you spend time together sharing so much about something so personal as type 1 diabetes to realize there are shades of differences in to what degree it’s accepted, differences in the treatment, in the worry and sometimes the hopelessness of it all, and through these subtle — and some not so subtle — nuances you learn a certain tolerance for others and because of your own experience you are reminded time and time again of that most notable of kindergarten teachings: treat others the way you want to be treated.

Fourth, there is incredible strength in numbers. History is full of examples (see Blogger). One day someone will write that type 1 diabetes, though afflicting only a small percent of the population (but rising), was cured because those living with the disease believed so strongly in fighting for it.

Fifth, they say it takes a village to raise a child and while that may or may not be the case, what certainly stands up to any debate is the unparalleled courage it takes for a child with diabetes to grow into a healthy, caring, contributing adult. To those adults of this community, we look to you to set the example. Thank you for not letting us down.

Sixth, there is a way of life attributed to Ernest Hemingway’s characters and style of writing that comes to mind whenever I think of Lia, her d-peers and their parents, adults T1s and everyone else so deftly managing their diabetes: Grace under pressure. Poise. Grit. Guts. Whatever you’d like to call it. It is, for me, the quality that best sums up the nature of those I’ve read of and about these last seven days. You are old men in the sea in my book, and I mean that as a compliment.

Now for lucky number seven, and it is lucky — and fortunate — because without it diabetes would just be an incurable, life-threatening disease void of possibility and hope. It is the steadfast belief that better is not just a word that people who don’t understand diabetes use to show how much they care but an unquestionable certainty, defined not by numbers, technologies, or even by a cure, but in the wisdom, dream and the purpose by which we live our lives, without pain, without fear, without envy.

From the poet, Alexander Pope, who brought us the line, Hope springs eternal:

Know then thyself, presume not God to scan
The proper study of Mankind is Man.
Placed on this isthmus of a middle state,
A Being darkly, and rudely great:

That is those who live with diabetes: finding respect in their neighbors, sharing fresh perspectives, learning through tolerance that strength is as much about one another as it is about ourselves, and discovering that courage and grace may carry us through the valley, but it is hope that moves the mountain.

What a wonderful world after all.

 

D-Blog Week: Admiring Our Differences

“Tomorrow is always fresh with no mistakes in it.” Anne of Green Gables.

 

When I first read about the Diabetes Blog Week, I thought it just wasn’t the thing for me. In theory it sounded great. An opportunity to engage other writers for a week on a similar topic, sharing in different perspectives, stories, and experiences. But I worried about the time and creative commitment, about the topics and whether or not I had anything worthy to contribute. But mostly I worried — and this will sound strange — of opening myself fully to this community.

I know, I write a blog. I put myself out there every time I post something. You can’t get much more open than that. But as I’ve written before, like many of you, I don’t write it for others… well maybe I do some occasionally now, but it didn’t start that way. It began as a way for me to personally come to terms with my daughter’s diagnosis. The fears, the raw emotion, the anxieties that greeted us every day, those were my audience. My goal then and still today is to root those devils out, expose them in their deepest, darkest hiding places and in making them public learn to live in plain sight of them.

For me, to achieve that must take, in part, a better understanding of myself through the words that I write. But I am reminded, often in my writing, that I am not the one with diabetes, Lia is, and to be honest gaining an understanding of what that must be like for her takes so much more and is so much bigger than just sitting down to a keyboard or a computer screen. It takes walking in her shoes, something I and everyone else is incapable of doing; so there are times when I finish with what I have to say and I realize I have no better understanding for what I think about it than when I began. They’re just words on the page, my blabbering on about this or that, knowing full well that buried amongst the squiggles and straight lines is the deeply unsatisfying truth that this is not nor has it ever been my burden to carry.

I wish that it was. Everyday, I wish that it was.

Bad things happen to good people. We know that. It’s been that way forever. The hardest thing for a parent to accept is not that it happened but that we cannot take it away from our children. We can read of how others have learned to deal with diabetes, how young people have grown up and learned to live full, long lives; how they traveled, married, had children of their own. We can read books, watch documentaries, participate in other ways of communicating the same message: life with diabetes is hard, but not impossible.

We can do these things and are lives are better for it, but that shared experience only partially eases our worry, because there are other stories as well, some that aren’t being told because no one could stand up to the telling of them, and that’s all good and well. But it is in these moments of gloomy despair, when we feel most vulnerable to the frustration, confusion and uncertainty of fighting this disease, that we need a helping hand; it’s then that we realize, ultimately, that we just simply cannot do this alone.

With that in mind — and finally to theme of this blog day (sometimes discovering what you think takes a strangely circuitous route) — I’d like to share that my inspiration of late comes from someone who doesn’t even write a blog. To my knowledge this parent of a CWD doesn’t write at all. They do read plenty of d-blogs, however, (in fact that is how we first met) and most importantly, they are as involved in their own child’s health and well-being as are Franca and I. To our benefit, they have been with diabetes a good bit longer than we have and are willing to share their insight, knowledge and personal experience with what it has been like for them rooting out their own marauding demons.

It’s not just us, but Lia, too, who has benefited. She had the chance a couple of months ago to spend some time with their child. This little girl, we’ll call her R, is the same age, in the same grade, and has the same good-natured qualities as Lia. The two spent the day together and it seemed on the surface like any normal play date between kids. They ran around, they jumped on the trampoline, and other than testing together, seemed not to pay their diabetes any attention. But that evening after R went home, Franca and I went to bed forever grateful for having found someone else with whom Lia could relate to on this important level. Unbeknownst to us, however, Lia had been soaking up much more than a new friendship. The next morning when she came downstairs to where we were sitting, she announced to us her BG, how many carbs she was eating for breakfast and how much insulin she had bolused.

This was surprising in that it was the first time she had ever taken such charge of her diabetes and in all honestly it was a degree of intellectual involvement that Franca and I both knew was important for Lia to reach, but after only six months on the pump and just over a year of having diabetes, was something that neither of us were ready to ask of her  ourselves. We — I, especially — was still stuck in the theory that diabetes might be her burden, but it was mine to carry. Lia, it turns out, disagreed and she didn’t need one of us to ask this ownership of her, she only needed to spend time with a little friend, who showed that life with diabetes can not only be normal but also extraordinarily special and confidence-building, and that is a lesson, my friends, that I would not trade the world for.

 

A One Sea Reality

But first, a funny and embarrassing story. Several years ago I had a truly terrific doctor. I mean a one-of-kind physician-that-you-only-read-about who got to know the well-being of your mind and spirit at the same time he learned of your body’s. He would call — yes call — with the results of whatever blood tests he’d ordered and before handing over the details he’d ask about my wife and kids by name. He followed my work and my writing and seemed genuinely interested in my, and indeed all of my family’s, pursuits of happiness.

Dr. Murphy is gone now, moved on to a different town and practice. Every once in a while I’m reminded of him and his interesting ways, the following of which, I’m sure, will illustrate. I was there for my annual physical and near the end, when the discussion turned to the issue of a prostate exam, he must’ve assumed because of my youth (40’s are the new 20s) and the look on my face, that I was unfamiliar with the procedure. Or maybe he was just having fun.

“You ever play flag football?” he said.

“Sure,” I replied.

“Well, you know how after the quarterback snap.” He assumed then the half-crouched position of a quarterback snapping the ball. ”He steps back and if you’re a defensive lineman on the other team you have to count to five Mississippi before you can rush?”

“With you so far.”

“Well, this will be like that. Once we start, all I need is five seconds.”

I looked at him, wondering how in the hell that was supposed to make me feel better. There’s a lot of ugly, unwanted things that can happen in five seconds or less. Accidents, pregnancies, hurtful words. Suddenly I wished he wasn’t so damn considerate, or funny.

Next, apparently questioning my honesty and experience with flag football or unsure of my ability to relate time in my head, he felt the need to further demonstrate. Holding the quarterback pose still, he hiked the imaginary ball and took a step back and started counting, “One Mississippi.”

He stepped one leg forward and counted “two Mississippi” and extended his right hand and size 12 index finger in a smooth, upward motion, from his waist to the sky. Mississippis three, four and five culminated the experience with him holding that pose and effectively sealing the deal, and quite possibly our relationship. He dropped his arms to his side and looked at me.

“Just like that,” he said with a smile.

I stared back at him, in a slightly new and different way. “I get it,” I said, “but I don’t know where you played flag football. Where I did we kept our pants on.”

I share that story today for two reasons. One, this week is Earth Day and if ever there was a need to drop our illusions (sorry, couldn’t resist) and get down to the nitty gritty (pun here is definitely not intended), it is in the unprecedented times of environmental change that our world is presently facing. Seriously. Dying rivers. Farms that don’t produce food. Climate-related illnesses. Whatever side of the myriad Earth Day debates you fall on, the facts are alarming (I encourage you to click on the links. I think you’ll find the information both remarkable and inspirational):

The need for involvement goes well beyond the three R’s of Refuse, Reuse, Recycle (these are very good places to start, however). It will take more effort, more sacrifice, and dramatic change to the way we think, how we vote (with our spending as well as our ballots), and how we live our lives, all things which, by the way, as people used to dealing with diabetes, we are already and quite effectively accustomed to doing. It calls for a collective voice and an action on each of our parts as equally unprecedented as what brought us here, because the reality is that no matter where you call home there is only this one world. One sea. One mountain. One opportunity to make it a better place for ourselves and those who follow behind us (for some ideas, see some suggestions from The Nature Conservancy below).

The second reason I shared the story of my doctor is to more directly reiterate the belief that the platform we all speak personally from — one of health and diabetes — should not be dismissed as a non-player in the challenges and struggles facing the planet. True, buying veggies grown locally may not seem related to diabetes care but every time you do so you are voting against genetically modified foods, which the American Academy or Environmental Medicine has suggested “pose a serious health risk”. I would argue that the individual and collective effort and experience of the diabetes community advocating  for better care, better science, and better practices makes us perfect stewards for this call to action.

The effort you put in is up to, and it doesn’t take much to get started, a few seconds the next time you go to the grocery and choose one tomato over another. It may seem small, but like Dr. Murphy showed me: There are a lot worse things you do in those five seconds.

 

Easy Things You Can Do To Help Our Climate (from the Nature Conservancy):

1. TIP: Travel light. Walk or bike instead of driving a car. Cars and trucks run on fossil fuels, which release carbon dioxide into the atmosphere. In the United States, automobiles produce over 20 percent of total carbon emissions. Walk or bike and you’ll save one pound of carbon for every mile you travel.

2. TIP: Teleconference instead of flying. For office meetings, if you can telephone or videoconference, you will save time, money, and carbon emissions. Airplanes pump carbon emissions high into the atmosphere, producing 12 percent of transportation sector emissions.

3. TIP: See the light. Use compact fluorescent light bulbs. These energy-efficient bulbs help fight climate change because they reduce the amount of fossil fuels that utilities burn. You will save 100 pounds of carbon for each incandescent bulb that you replace with a compact fluorescent, over the life of the bulb.

4. TIP: Recycle and use recycled products. Products made from recycled paper, glass, metal and plastic reduce carbon emissions because they use less energy to manufacture than products made from completely new materials. For instance, you’ll save two pounds of carbon for every 20 glass bottles that you recycle. Recycling paper also saves trees and lets them continue to reduce climate change naturally as they remain in the forest, where they remove carbon from the atmosphere.

5. TIP: Inflate your tires. If you own a car, it will get better gas mileage when the tires are fully inflated, so it will burn less gas and emit less carbon. Check your automobile monthly to ensure that the tires are fully inflated. Follow this tip and save 300 pounds of carbon dioxide for every 10,000 miles you drive.

6. TIP: Plant native trees. Trees absorb carbon dioxide from the air and use it as their energy source, producing oxygen for us to breathe. A tree in the temperate zone found between the tropics and the polar circles can remove and store 700 to 7,000 pounds of carbon over its lifetime. A tree that shades a house can reduce the energy required to run the air conditioner and save an additional 200 to 2,000 pounds of carbon over its lifetime.

7. TIP: Turn down the heat. Heating and air conditioning draw more than half of the energy that a home uses in the United States. Turn down the heat or air conditioning when you leave the house or go to bed. You can easily install a programmable thermostat that can save up money and carbon.

8. TIP: Buy renewable energy. Electricity generation produces 40 percent of carbon emissions from the United States. A growing number of utilities generate electricity from renewable energy sources with solar panels, windmills and other technologies. If your utility offers renewable energy, buy it. If not, send them a message asking for clean energy.

9. TIP: Act globally, eat locally. If you shop at a supermarket, the food you buy may travel in a plane from the other side of the world, burning fossil fuels the entire trip. Shop at a local farmers markets and you will find fresh and healthy food, and help save our climate.

 

Words Without Envy

The way the year ended was pretty much the way that it started with a trip to the children’s wing of the hospital. Only this time our purpose there was not to admit Lia for what would become a very long and arduous twelve months discovering and treating diabetes, but to visit the children who now, like herself one year ago, were suffering through the holidays confined to a hospital room.

For some time we’d been scratching our heads as to how we could mark the anniversary date of her diagnosis and our thinking at first to be honest — or mine anyway at least — mostly veered in the tempting and frankly much warranted direction of we-can-do-anything in making amends for last year’s depressing celebration. Diabetes could not and would not keep us down. We all having weathered it together deserved something big, something memorable. But like many things in life often the best place to mark such a passage is not carried away with intentional bliss but closing the loop in the very same place where it started. So we shelved all ideas of a personal family statement and made plans to visit the hospital bearing notebooks and pens for the children.

In Walden Thoreau writes of his wood-pile and how during the coldness of winter and the howling windy nights he endeavored to keep a bright fire in his house and also in his breast. Writing too sustained him, as it has me too over these past many mind-numbing, inescapable months. This story-journal has been my wood-pile, my writing the axe, and just as Thoreau could look out through a window and admire his work by the volume of splintered wood chips, I look back over the words that I’ve written and the words of the friends fireside and I find admiration as well. There has been sorrow, yes, and worry and much frustration, but the moments of pleasure and pure wonderment of the grace and the courage of Lia, my family, and everyone touched by disease resonates warmly and endlessly throughout my heart.

There is much to be thankful for. For John and Krista, who have suffered from the lack of attention or too much of the wrong kind of attention and in who I love and would trust wholeheartedly would something tragic ever happen. For my parents and siblings, who have appeared here only occasionally but have shaped my beliefs and actions more perhaps than anyone. For our friends, there are no better companions. You know who are, we love you. For those strangers we’ve met on the way who promised us open arms, not once did you disappoint. Thank you for your attention, your comments and your compassion.

And, of course, there is Lia. There is nothing I could write that would adequately express my love, my pain, and my hope for her. I have tried to be honest in writing about all that has happened this year, the ups and downs, the many new things we’ve learned about each other and ourselves. The truth that’s been steady throughout is this one conflicting opinion: There is no better nor no worse person in the world this could have happened to. She has truly been like an angel.

Especially, I’m thankful for Franca. This year has been trying for both of us, in ways only parents could understand. For most of the day and night we’ve had to shift our focus on where it was needed and that has been costly in terms of being a couple. It would be a lie to say there have not been moments I did not wish to return to the lustful, love or be-damned carefree days of our past. But she more than anyone else has shown me that living without envy is not only possible, but the only way to live life. They say that marriage isn’t a word it’s a sentence. We are, this journey and she have taught me, the better story.

Like everything, there is much that changes in a year. We grow, we discover, we make our own history. We learn what we are made of, and also who we are not. Every day is an opportunity.

As we left the children’s hospital and walked across the street bridge to the parking deck, Lia was feeling especially happy. For her, our visit wasn’t about marking this date of one year with diabetes. It wasn’t even about her. It was about giving back. As she skipped along in the cool sunlight, squeezing my hand, she spoke up and said, “That was nice. Can we do this again next year?”

Little princess, you betcha.

Payday

Back in the late summer my local branch of the Juvenile Diabetes Research Foundation invited me to take part in, among other things, the logistical and production planning of this year’s Walk to Cure Diabetes. When the offer came, I thought it was long overdue as Franca and I had been noodling them since Lia’s diagnosis to become involved volunteers. But I had little appreciation then for the challenges of finding essential work for people like us, with strong passions to give their time freely. What I did understand was that in addition to doing what we could to help raise money for a cure, what we were most needing then, and still now — and of which has been the topic of many WE posts — is a community of which to belong.

Lia’s diabetes and my working role with JDRF provided me the opportunity to not only experience such a community, five thousand people strong, but it gave me the good reason to push my chair away from the desk, step away from keyboard and writing and do a bit more heavy lifting with my hands. I had been feeling drained of both emotion and creativity and could not have asked for better therapy.

It was Albert Einstein who said, “People love chopping wood. In this activity one immediately sees results.” With The Walk this past weekend, I caught myself thinking wouldn’t it be great if finding a cure were just something that needed a bunch of us to haul it or build it or power it. It won’t be of course, but it was nice for just one day to feel like I was doing something other than waiting on someone else.

Thank you to all who donated in honor of Team Liabetes, and also to those who gave their time to put on this wonderfully optimistic event. It wasn’t until two days later, while sitting at the table for breakfast with Lia that I understood the impact it had on her own confidence.

She said to me: “You know what, I think I am starting to not mind having diabetes.”

It’s not a cure, not by any measure, but for a life without envy, it’s sure as hell a great start.

For a few pictures of the day, please check out Without Envy on Flickr.