And My Hero Is…

The overdue final chapter of Diabetes Blog Week. This from the champ herself:

 

My heroes are my mom and my dad. They’re my heroes because they help me through type one diabetes. Also, because they make me feel special. They do that just by talking to me. Just a few people do that at school and anywhere else. I’m glad that they are my parents because then I wouldn’t be able to tell them how big a difference they are in my life. I don’t know where I would be at the moment if I didn’t know them. They’re my hero because they care about me and they love me. And I love them, too.

 

 

You Should Know

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

 

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

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

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

Say No More

Today’s topic on Diabetes Blog Week is to write about our Fantasy Diabetes Device. The one item we’d love to see developed to make the care and treatment of diabetes better, easier, simpler, less painful. You name it. The sky’s the limit. Here is my fanciful wish:

 

Say no more

 

Say no more,
Say no more.

These are pretty neat things,
I would say if I’m asked,
And the things that they do
Well…they seem up to the task.

But if I had my way,
I would tell you this much,
I would toss out those names
In one alphabet bunch.

I’d start over from scratch, with every last one.
I’d make it my job… dare I say, my mission
That every last one of those needful devices,
Would get a new name…a kinder edition.

Take Test Strip for instance…just for example,
After a spin through the Name Fixer-Upper,
The word it spits out so cheerfully better.
Now call it a Bodiddly Beandip Whopper?

Or look at this meter and alcohol swab,
Down the word chute they go… now up on the lever
The names that pop up on this dandy Name Namer
Could be Bartle or Bob and a Cootie-free Cleaner.

And who ever heard of an infusion set,
Who didn’t think first and foremost about it,
That an object of such animosity
Would serve us much better if we just called it Mit.

Finally there’s a thing called an Animas Ping—
Wait a minute just now… that’s not really so bad.
But pairing it up with the surname One Touch?
How about we lighten it up with Do-dad.

I hope you see now, it all makes perfect sense,
A machine that names names without any offense.
There is one more item I feel is amiss
Instead of a painfully sharp pointy prick,
I wish lancets would render a butterfly kiss.

Hulk Smash

Yesterday I wrote about Franca and Lia and their strength and indomitable spirit to stare down the maw of diabetes no matter what, any day of the week, standing firm behind the motto: You want a fight? Bring it. For day 3 of Diabetes D-Blog Week the focus shifts to development, a topic for which I will turn the attention to me.

I am by no means a tinkerer. I have no patience for the preciseness it usually requires and would rather do just about anything than spend my time fine-tuning, adjusting, or otherwise engaged in the activity of repair. For me, playing the guitar (if that’s even what I should call it) is about as much experimentation as I care to do. Life, I believe, is to be lived, not calibrated. Besides, my Dad didn’t know how to fix shit and never taught me and so despite my collection of sockets, screwdrivers and power tools, I’d just as soon leave them in the packaging they came in. As it is for the most part, they’re just cluttering up the garage. If something is broken or out of tune, my preference, or should I say, my skills would lend to smash it and start over.

But if anything taking control of diabetes requires a good bit of routine and extra fine-tuning, let’s call it D-regulation (don’t say I never reach across the aisle). The things that can and should be governed are as confusing as they must sound to someone unfamiliar with diabetes. Total Daily Dose. Insulin to Carb Ratio. Correction Factor. Twenty-four hour basals. Insulin on Board. And so on and so forth. Each of these  elements weighs heavily on just how effective we are at managing Lia’s blood sugars. Changing the settings of just one of them could mean the difference between this (thereabouts):

______________________________

or this:

Engineering all those factors to obtain level blood sugars depends upon the precise application of tiny little tweaks, not smashing. You make one little change to just one of those elements (not six), wait a few days and see what happens. Didn’t get the results you wanted or expected? Make another little tweak, wait some more. It should feel like you’ve gone back in time and are trying to tune in a television station by ever so slightly adjusting the antennae rabbit years, not banging the crap out of the side of the box.

With diabetes I’ve got to change my attitude and techniques. Lia is ten now. Next year she wants to do cross country. Then her teen years are fast approaching. Smashing won’t work. Smashing will work against us. It’s time the Hulk in me developed a little more patience.

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.

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.

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.

 

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.