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.

 

Worth a Thousand Words

I love the idea of documenting our d-journey through pictures and while it’s true we have captured a few memorable events on film (or in pixels, rather), unfortunately, there’s just not that much more that’s worth posting beyond what I’ve already shared. So, instead of inundating you with pictures of say, the combined quarter-century worth of kid’s birthday parties, I thought I’d offer those photos that best sum up what I personally find most endearing and important about our journey.

Each, I think, carries nicely a personal sentiment of how it sometimes feels to live life with diabetes. It’s fitting, I think, that only with Lia did I need more than one.

 

Leap of faith

 

The Bright Side

This is a tough one. Today’s post for diabetes blog week is to write about something good that diabetes has done for Lia. The problem I’m having is that accomplishing this tiny task is made a bit more difficult by any number of obvious reasons: It’s a disease. It’s incurable. And mostly it acts like a dick. So it’s kind of like asking the guy who got shot by Dick Cheney to be thankful for the face-full of lead because the quail hunt he was engaged in with the VP wasn’t going all that well for him.

But I get it, positive thinking is all the rage today and so in setting the whole chronic, dick-headed disease thing aside, I wonder where to begin in revealing the flip side of the coin, that is the bright-sidedness of diabetes.

Should I start first with the physical and mental courage it takes to confront diabetes everyday? Courage to endure pain. Courage to not be intimidated. Courage to face fear and take measure several times a day, through the tiniest pinprick of blood, of one of life’s greatest and most ultimate uncertainties. But is it fair to say that courage sprouts out of hardship, or is it already inside us, and rises forth like a bad-ass commando out of the depths and fog where it’s been keeping watch all along?

If not courage, then what of humility? It cannot be easy sharing the stage with such a pinhead of a co-host, when diabetes behaves like a persistent April Fools joke, acting contrary every day of the year. How else do you explain the steadfast grace needed to put up with such mischief if not with humility?

Or might the gift from diabetes be best described as empathy? This is one I could point to were it not like saying in order to better understand the blind one must walk the world with their eyes closed. Honestly, empathy needs no point of reference, just as hope needs no foothold on imagination. They just are, if we let them.

So where does that leave me?

Gratitude for the fact that diabetes is not something worse than it already is?

The experience of overcoming one struggle so that it makes her stronger for the next?

The motivation that turns fear into an advantage?

An appreciation for life?

A sense of community?

The peace of self-content with what is versus what should be?

The truth is Lia is who she is in spite of diabetes. Putting a positive spin on this life-threatening condition — while invigorating to write about — feels strangely like falling into the trappings of a culture driven by the ideological desire to find something happy in everything (though the numbers suggest otherwise). But how can I not play along, if only to satisfy myself that I did everything I could for her physical and mental well-being?

Yes, she’s stronger.

Yes, she has more courage, more empathy, more appreciation, more everything.

I would steal for her the naming rights to whatever life-affirming attributions have yet to be identified if it could mean that for just one day she didn’t have to think about diabetes. But it’s just not that easy. I say so not because I’m a pessimist, I’m not. I believe very much in believing in yourself, and I understand also that in taking this position, I might be making a serious leap in linking my daughter’s regard for her diabetes to a half-century of national schooling in what could be described as social optimism pumped-up-on-steroids.

Seriously, though, I know, I’m taking this too far, and probably out of context of what was the intended assignment. Maybe this whole diabetes thing is still just too fresh for me. Maybe I’ve worked myself into a tizzy because I haven’t yet fully bought in to the critical importance of finding something good about this thing that will be with my daughter the rest of her life. No, that’s not true. Will be with her until there’s a cure.

But I know also I’m not alone. When Lia gives herself a shot or pricks her finger for the umpteenth that day, she does not think of the bottomless well of courage such an act requires of her.

When she feels low, she doesn’t appreciate the fact that it could be much worse.

When she explains again and again to her classmates what that thing is on her hip, she doesn’t think: Because of this, I’m a better person.

She thinks, like I do now, or she will at some point one day: This shit totally blows.

And so speaking to her as her father, mindful also that I’m not one who has diabetes, to help her get through those days where she feels downtrodden and out of sorts, I would say: You are many things, sweetheart. Brave. Smart. A true fighter. You were these things before this moment and you will be these things long after it’s passed. Diabetes doesn’t give you strength. It doesn’t give you courage. Everything you need to get upright and get through these times is dwelling inside where it has been, like the mettle of this little guy, making you you all along.

Fear and Loathing in D-vegas

It sounds crazy, but it’s easy sometimes to forget, who in our house has diabetes. Just for this post, for example, I mentioned to Franca while standing at the kitchen sink last night that today’s blog week assignment was to list ten things I hate about diabetes. We were alone and for both of us the usual noxious sentiments we’d been feeling the past seventeen months began sounding off in our heads, things like the greater health risk, the predicament of tighter control, the regrettable loss of youth and spontaneity.

At the same time, Lia was in the next room over playing the piano and when she overheard us talking, she called out, “Can I do that?” And there it was, her small-but-heedful voice keen to remind us: this isn’t your disease. You’re not the one with diabetes.

And we aren’t, though there’s never a moment in the day we wouldn’t trade places with her, and while the things we don’t like about diabetes have certain similarities in the overall manner of speaking, there is no mistaking our long-term worry for the malice harbored by a nine-year old in the day-to-day struggle for dominance.

It’s easy, also, especially as a parent, when you get such a gift from a child as involvement and ownership to find error in their understanding and then attempt to correct it. Indeed, as Lia read her list to us it was difficult not to stop her and say, “Well, sweetheart, that’s not exactly true, is it?” But “sometimes” for kids means “always” and sometimes “always” means “on occasion”, so we started then rejected the urge to auto-correct her on any part of her list. This is, after all, how she sees it and how she sees it means everything to her, whether or not that assimilation is accurate. It fits perfectly  the age-old adage, don’t knock it till you walk in my shoes, and is, for all of us, one of the most valuable life lessons we can learn.

So, without further ado, here it is, the unadulterated, Ten Things I Hate about Diabetes, Lia Rosa edition.

.

Ten Things Why I  Hate Diabetes
by Lia

  1. I hate to test every single hour when I’m doing testing w/ my BG numbers.
  2. Whenever I’m high, I always have to wait so long.
  3. I can only eat “FREE” stuff in the morning for snack sometimes.
  4. When I’m at school, every time I’m low or high, I need to call my dad and I miss most of the lesson, so I have to read it over.
  5. I always hate getting asked what my pump is and when I tell them they always say, “Huh!?”
  6. When I test, I always get stared at and even if I do it in my desk, and I ask them to stop nicely, they look away, and…..BOOOM!…….they look again.
  7. I always have to change my site when I am having fun or a friend over.
  8. I always have to weigh everything that we don’t have a carb count.
  9. My dad always has the JDRF meetings.
  10. I always get asked or told, “Are you allowed to have this?” or, “I know you aren’t allowed to have this, so I got you sugar free cookies.” or, “Do you want me to give you this so you can give it to your sister?”

 

I Didn’t Just Do That, Did I?

Being so new to this, there are probably a great number of things we do wrong when it comes to treating diabetes. But everyday brings us new levels of confidence and also, strangely, periods of disbelief and elementary head-scratching that make us wonder have we been paying any attention at all. It ‘s much like a daydreaming child must feel who, upon waking from their mid-morning trance, suddenly realizes the teacher has asked them a question. But they say success comes in cans, not can’ts, so fortunately we keep trying again and again, and just like that poor little schoolboy, begging forgiveness and hoping our mistakes don’t lead to something worse.

As opposed to writing about two of our bloopers, I’ll choose a more subtler way to illustrate. Can you spot the difference?

 

Always read the label

 

Double vision or over-confidence?

 

Letter To My Children

 

Dear Kids:

As I write this letter I imagine it as a pin hidden in a haystack, buried beneath dawdling levels of virtual white pages, layers upon layers of words and wordsmithed images and deliberation. How many, heaven only knows. Plenty, I hope as that means I have plenty of time to write them. I picture one of you, Lia most likely coming across it, years from now, perhaps as an adult who upon finding herself on a rainy day lamenting her lost childhood, taps on the computer and logging online enters the words, Without Envy.

And you read. And you read and you read and at some point you come to this letter where by then, if you don’t know already it, you will have some sense of just how much your mother and I love you, and how much we love your brother and sister, and especially how hard we’ve worked for and wished for you all beautiful, long, happy lives. Little of what you have read, it’s my hope, will surprise any of you. I try to wear my beliefs on my sleeve, that is, for all the world to see, by not saying one thing and doing another. If your mother and I have done our jobs well, you will all know that the fruits of hypocrisy are smells not so easily removed with the laundry.

I’ve tried also to be honest with what I’ve written and how I felt about diabetes, about each of you,  your mother and our family in whole, and I’ve especially wanted to be honest about life and growing older. Nothing in life is guaranteed, regardless how hard you may want to believe it. There are some things you just can’t control. That is a lesson as painful as any you will ever learn. Focus on the things you can change and live satisfied with the fact that your efforts were not wasted on that which you cannot. Your courage, confidence and ability to adapt will not ever let you down. Trust yourself.

Here, too, are some things of our lives you will read about that you will have likely forgotten. Maybe you will have forgotten all of it. Some might say that’s for the better. I don’t know if that’s true, but I’d like to think that it’s not. I’d like to believe that there is always something to be gained, not lost, from knowing a thing. Undoubtedly, some of what I’ve written will make you feel sad and unhappy and I hope you will forgive me, but one day you will understand my reason for wanting to write about those things. I wish with all my heart that none of you will ever have to feel that way about anything but chances are that you will and it’s important for you to know that writing can help you overcome it, or at least come somewhat to agreeable terms with it.

In fact, as you read this it might seem as if our entire world revolved around diabetes and moments of grief, worry and hardship, of which I’ll admit there have been plenty. But I know you all and I know that each of you knows better. There simply aren’t enough words, images or seconds in the day to share with you all the joy, happiness and love that our children have brought us. You have all made us better, healthier, happier people and for that your mother and I are grateful.

For John, the oldest, but uniquely the newest member of our family, the quiet performer of the bunch, whose own story is worth writing down in a novel.

For Krista, the one always stuck in middle. You understand much more than you sometimes let on or that we give credit for. You are as much a survivor and hero as any one will ever meet.

And for Lia…. Well, way back when I started this blog and was coming up with a title, I wanted to find something that represented not only how I felt about you and diabetes, but how I felt about life on the whole. Diabetes had become a part of us, but it would not become the whole of us and in searching for a way to represent the fine balance between the life we start out wanting for ourselves versus the life we are handed, I thought of the day you were born, two weeks early in the back of an ambulance, far from design and the doctors and modern conveniences of childbirth. To be sure, it wasn’t part of our plan, but I understood then with humility that sometimes the road less envied produces the more spectacular journey.

This is the reality, children. The path you must carve through the universe is yours to decide. Choose your dreams wisely. There’ll be struggles along the way, for you as there is for everyone, but if you trust in your heart and lead with an open mind there is nothing out here that can stop you.

I love you all equally, with all of my spirit.

Yours forever truly,

Dad

 

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.