I am, She is, We are

We submitted our application to the JDRF Children’s Congress early last week and in so doing took one more potential step from the shadows of obscurity into the spotlight that is the ardent voice of advocacy and awareness. Our story. Our faces. Our family.

There are two things that stand out about this. One, it is very difficult when you are trying to lead a normal (or, I don’t know, maybe it’s abnormal) life without envy to put yourself in a position of public exposure. Happiness, the great philosopher Socrates suggested, was contingent upon, among other things, living with a tolerance of being overlooked. I believe that is true and were it me, not Lia, with diabetes, I could, I think, strive for that kind of low profile life, however right or wrong it might be, if only to spare those closest to me my fear and frustration. But it is not me, it is my daughter, and her keeping that or any other source of anguish to herself is not anything I would ever wish for Lia or any of my children.

And there, as they say, is the rub. Where do you draw the line between nurturing and preparing your child for the realities of adulthood by setting a good example? Is life without envy even possible if every week you sit down and describe, vent, seek, share or make permanent all the many ways diabetes is a part of it? There is value to that, of course. I would not have done it this long were there not. But it’s important too, perhaps more than anything else, that we accept those things out of our control (diabetes) and replace the thing we most desire (a cure) with only things we are certain of obtaining (our dignity). Is that not the true measure of without envy?

The answer is obvious, we are after all human and the human condition is one of enduring acceptance: some things are up to us and some things are not up to us. It does not take advocacy or writing or championing a cause to appreciate that, but it might sometimes make it harder.

Over the last couple of weeks, through no conscious effort on my own, the kids and Franca were on vacation and time just got away from me, I welcomed a break from writing for Without Envy. I have not taken that long of a hiatus since Lia was diagnosed last December and while I don’t write or post every day, the purpose — raising a child with type 1 diabetes to live life to the fullest — is something I think about every day. During this time though I tried living as Socrates might, quietly, stoically, without metaphors, stories, or mindful stretches for deeper meaning. Those things I reserved for my fiction.

Mostly, I thought, it went well. We worked some, played some and spent time with friends and family. The only mention of Without Envy was when Lia suggested it to someone else, which surprised me as I hadn’t been aware that she was so tuned in to it, but she was, more than I even then gave her credit. Of her diabetes, we were dealing with it straightforwardly through science, smarts and intuition, not wordy contemplation.

Then, near the end of it, we sat down one evening at the kitchen table and realized we hadn’t changed Lia’s infusion set as we’d planned. Because she was out of school, her blood sugar numbers had been running high and this particular hour of the day was no different. It was pasta night and the water was already boiling. We wanted to get her levels down sooner than later, so we talked about giving her a shot instead of waiting the five or ten minutes it would take one of us to change her site and dose her. It had been since June she’d had an injection, but she’d taken hundreds of shots. It was nothing new. She’d been giving them to herself for months without flinching. But at that moment the thought for her was just too much to bear and Lia broke into tears.

What is it? we asked and when she didn’t answer right away, we backed off: All right, we said, we’re sorry. We’ll go ahead and change out the pump.

It’s not that, Lia answered through sobs.

What then?

It’s everything, she cried. It’s all of it.

******

So we aren’t, it turns out, any of us, quite ready to accept that this is just simply the way things are now. We have an obligation to Lia and to all children with or without chronic illness to be their voices for them. To raise the call for help, to bring attention, to raise money, to demand that someone listen. Through our example, Lia may one day discover her own voice and will say on her own to the world: I hear you. I am here. I want to help.

Which brings me to the second point of all this and it comes from another philosopher, Marcus Aurelius, who said that nothing is worth doing pointlessly.

I’ll say that again, nothing is worth doing pointlessly.

Advocacy. Fundraising. Research.

Whatever it is, make it count.

At A Glance

Back now to the daily opus of attention paid Lia’s diabetes. Her wellness of course is always on our minds and as such our strategy in treating the disease is simple: be open to anything that will multiply our opportunities to know it, treat it, and deal with it better emotionally, mentally, and physically.

So last week we took full advantage of a four day test run on the iPro Continuous Glucose reader from Medtronic. This is a small device, shaped like a horseshoe crab but much smaller, about two inches in length, that attaches to the skin and continually captures blood sugar readings, while the person with diabetes goes about their normal routine. At the end of the test period, the CGM is removed and the data downloaded to a computer, where it is analyzed and compared against other collected information such as exercise, food and insulin intake, so that patterns of glucose fluctuations can be marked and adjustments made to the diabetes care plan.

Though we don’t have the data yet and cannot attest to its usefulness, the alternative testing to CGMS involves skipping meals and/or testing each hour for four to five hours, making bolus or basal adjustments, and retesting. Not something Lia or anyone else in the house was too excited to undertake. So at our last quarterly checkup we asked about the CGMS. The staff supported it and a month later she was outfitted (the tape was the worse part of it; see a few poorly shot photos here).

Outside of the obvious interest in learning more about how Lia’s blood sugars behave throughout the day, is how we all sleep at night, or don’t as the case may be. That last comment will ring very familiar with some, but to others I should explain. To do that I’ll need to backtrack.

I mentioned before our eagerness to learn all that we can about Lia’s diabetes. That’s true in every aspect of her care but one: Nighttime lows, which makes little sense when you consider that during the waking part of the day someone is always with her. Should we not be more concerned of those times when someone is not?

But other than arming ourselves with an understanding of the likely causes, nighttime hypoglycemia remains a weak link in our armor against diabetes. I don’t know why that is. It may have to do with fear (here’s an excellent  post about fear); or it could be that ignorance is truly bliss and to be any wiser is folly. After all, isn’t our world affected enough with the knowledge that lows can and do happen, anytime day or night, and the consequences can be fatal? Is that not all the call that is needed to get one of us up once or twice after dark to check Lia’s blood sugar levels? Would any more general knowledge — frequencies of occurrence, tales of courage or loss, the likelihood that Lia would wake on her own if she happens to go low, or even a computer-generated chart of her nighttime averages — give us the prudence to sleep straight through?

It is probably not information that would be wasted. It would be rare if that were the case. The treatment of diabetes is a lot like fighting a war: to avert disaster, know your enemy and know yourself. But is a four day clinical test substantial enough to put to rest any worry?

At a data-collected glance, the most challenge we have with her blood glucose levels are just before she goes to bed. Most of her meter readings — seventy-five percent last week, including those taken at two a.m. — are in range. There was only one case of hypoglycemia and it was minor and could be easily explained (incorrect bolus at breakfast time). She wakes most mornings within a few points of her target.

So maybe our worry is unwarranted. Maybe we’re losing sleep over nothing. Our bodies and sometimes our minds scream out: Yes, yes, you are. But our hearts cry something other.

The security of knowing first-hand, of really knowing that she is safe and sound is a thing no parent can truly relinquish, not to stories or knowledge or detailed computerized data.

Fear sometimes is impossible to let go, regardless how much you know.

Noodling

In some parts they call it catting. In others, it’s hogging or stumping or dogging. If it is trout, not catfish, you are after, it is considered art, not a sport, and known to practitioners as tickling. However, those of, shall we say, a bit more extreme-minded personality, prefer something a bit ornerier as their prey. Plus, if you are of the necessary mindset and in the mood for entertainment, there is even a DVD series called Girls Gone Grabblin’ for your catfistin’ viewing pleasure. Universally though the term for it is noodling. It involves wading into shallow water and shoving your hand beneath the surface and plunging it into a dark underwater hole where if you’re lucky and all goes well it will be swallowed by some giant catfish. Irregardless, the name you give it, it is by the very unambiguous definition of the act, hands on, and as such a fitting analogy to other such menacing matters.

We returned to the lake over the Fourth of July weekend to share in a longer visit with our friends from Connecticut and though none of us noodled or grabbled or otherwise did anything risk-worthy of a video, we did come across two young men hand-fishing for catfish along the shoreline. My good friend, Mike, and I were standing on his dock fishing when they asked did we mind if they noodled past.

At the time I had no idea what they were even talking about and went on fishing, but watched after the two boys with interest as they went about probing beneath the surface with their hands and a stick searching for probable nests. The way they felt unseen before them reminded me of searching the nightstand for my glasses in the dark, minus of course the caution (read: fear) of being latched on to by something fierce and toothy. I found also a poetic semblance in their ambitious blind hunt to the treatment of Lia’s diabetes.

Such cause for waxing lyrically may have been due to my state of mind, which after the unceremonious case of forgetting the dog, was convinced that the rest of the summer would be going much in the way of her blood sugars: A plethora of mind-numbing highs, mixed with a few startling lows, some brief, unpredictable moments of rest and contentment. For both Franca and I it had begun to feel as if much of our days and nights would be spent on the periphery of living, bound down by the sole occupation of chasing phantoms. It was a sentiment we felt sure would be backed up with scientific proof during Lia’s next endocrinologist visit, which occurred the week following our lake trip.

Fortunately our fears, like the worry of those catfish hunters who sometimes poke something they wished they had not, were not realized. The two boys got their fish, a thirty-five pound channel cat, lurking beneath a boat ramp a few houses down from our friend’s. And despite the struggles we’ve had with adapting to pump therapy, Lia’s A1c came down to 7.8.

Our relief, of course, was immense, as was that of those two fishermen when the great water cat came clean of its guarded obscurity with no injury to either of them. And after the elation settled and those wonders we’d brought to the surface and spoke of and then turned loose and after the doorway in which we’d come to know them had gently closed and we were left standing alone untroubled by the effort of our accomplishment, at peace even perhaps, we thanked ourselves for the warriors in all of us who never stop searching, probing, and reaching into the next hole.

It is the experience of our hands that we learn from, which fingers to prick, which dark holes to avoid. We are being taught to take it one day at a time, one shoreline after another, celebrating the rewards of everyone’s hard work and  mulling over the things that went wrong. But such discovery has a hard-edged strangeness about it, an awareness that leaves us weary. Yes, with it comes empowerment, but there is always the troubling forethought of what might linger in the unknown. For tomorrow is another day and fear too can be motivating. Parents of children with chronic sickness know this maybe better than most. As Franca put it to me as we were driving away from the doctor’s office with our good news: Every time I leave there, I can’t help but feel like crying.

Defying Gravity

When you first learn that a child of yours has diabetes, if there is no family history of diabetes or the root of it is not otherwise obvious, and it rarely is, the parent will do not only whatever they can to make life with diabetes better for the child but they may also work tirelessly to pin down whatever it was that caused it. There is nothing unnatural about this because if you were successful at finding the cause of the diabetes perhaps you could keep it from bringing more harm to the child or other children, which is after all a parent’s first responsibility: keeping children safe. Of course with diabetes this is impossible to do and giving up on the search is usually the most helpful advice anyone can receive in terms of finding the origin. Not all of us, myself included, ever fully reach that point but it is helpful to know that the odds are stacked against us and any tidbit of information that helps shed some light on the topic is a gift.

What is possible, almost always, is for both parent and child to accept the situation for what it is and deal with it as best you can. This is important for several reasons but mostly because it is the reality and no good comes of hiding from what is real. Always in the end the truth finds you. Once you do this and are successful enough at it you can find little ways to defy the life-and-death seriousness of the circumstances and make good on the promise to live life to the fullest.

This last week we met with the reps of both Medtronic and Animas to decide which pump best suited Lia’s purposes. We had attended a class at our Endo’s office to hear spiels from the three top suppliers and had settled on these two, but were finding it a difficult decision as there were characteristics of both that we liked. So we invited them each out to the house on separate days to sit with Lia and talk about their pumps. Over the last few months we had made ourselves knowledgeable about pumping through books; and the internet and online diabetes community had provided us with a wealth of information and first-person experience. But nothing, we felt, could replace one-on-one, live conversation. In this way, we could relate our own experiences with food and insulin and the effect both have on Lia’s blood sugar and use these as our foundation from which we might sort through the gimmicky talking points and uncover useful information that would truly help guide us in making our decision.

Our efforts were not lost on Lia, as many of the things we do or say are not. During one of the sessions I looked over at where she was sitting in the small chair she had pulled up for the conference and I noticed she was holding a clipboard. She was making notes on it as the rep talked to us about her pump and afterwards, I asked her what she had written down. She handed me a single sheet of paper with the title: Cool things about the Animas scribbled at the top, and this, in her own words, is what followed:

  1. It allows me to sleep in.
  2. It lets me cosumize <customize> my dose.
  3. Let’s me manage things
  4. You can disconect for an hour and be flat.
  5. Have an infushun set.
  6. It has safety
  7. You can redial it.
  8. I can get a monitor from a long way away.
  9. Your water proof.
  10. Go to 0.025 units.
  11. It can tell you to check for keytones.
  12. Back up pumps.

Lia has never asked why she has diabetes. She has on only one occasion questioned what caused it and when given the answer equivalent of Who Knows, she walked away fine with that. She’s that kind of kid. A realist. A survivor. Don’t tell her it won’t hurt if it will, she will see right through that smoke screen and if she doesn’t she will the next time. Her own experiences have taught her that too.

A few weeks ago had I witnessed her writing this kind of list about a tiny little box designed solely to help keep her body functioning the way nature intended I would’ve mourned and written about her lost freedom and innocence. For sure there will be moments for that again, brief but intense outbursts of grief, frustration, even anger at her diabetes, at science and the medical community that has failed to find a cure, at the inability to uncover what caused it, and for how Lia has had to grow up much faster than anyone would want for a child. But it is this kind of thinking that it takes to move past the sadness and shock and get on with living. If a little blue box will help with that, then all the better. Just as long as it makes you waterproof.

A Fair Goodnight

Nighttime sometimes is the hardest. You wake, you think of her. Maybe you get up and check her blood, or just feel her shoulder and listen for breathing as you might a newborn. A slight nudge perhaps if you’ve caught her in a long mid-breath. Maybe you lie there in bed thinking and wondering and tossing and turning and watching the clock, waiting for something of a less pathetic hour to just go ahead and get up. There is certainty in waking, and while there’s no justifiable cause for worry, other than her diabetes, you cannot be sure of ever getting back to sleep. If there had been good reason to be concerned we’d have set our alarm and one of us would have been up anyway to check her blood. But when you go to bed thinking all’s well, we licked it today, we managed, there is a feeling of peace that comes over you and the nighttime you think will be restful and spent sleeping.

A few days ago it was just before one in the morning when she woke us. She was standing at the bedroom door, a small dark shape backlit by the nightlight in the hall. She was crying, sputtering through the sobs about a bloody nose. You could just make out in the darkness the little figure with both hands cupped to her face. We were both awake immediately. Franca walked her to the bathroom and in the light we checked her over.

The tiny bowl she’d made with the palms of her hands were pooled with blood, so I ran them beneath the faucet while Franca applied a wad of tissue to her nose to stem the bleeding. After a few seconds, she left to get a damp washcloth, then retrieve the glucose meter from another room, and I sat Lia down on the floor and leaned her back against the tub. The bleeding had stopped and she had stopped crying and the panic in her too had subsided. She closed her eyes and looked ready to fall back asleep. I washed from her face the smears of blood and asked how was she feeling. She knew what I meant and said fine. Franca came back and pierced her toe and checked her blood sugar. And she was.

We put her in our bed and laid next to her. The worry was over but not the response as we both found it difficult to return to the sleep we’d been lost in twenty minutes prior. Was the nose bleed somehow related to her diabetes, a warning sign that we should not take lightly, or was it dryness caused by high pollen? What if the meter was wrong? What if the reading was trending down and if we didn’t do something about it now she’d suffer a low? How much longer should we wait until we tested it again?

Honestly though, it wasn’t even these questions that kept me awake. These were things we asked ourselves everyday, all day long. We work very hard to anticipate and address these questions and are learning ourselves out of necessity to work just as hard on getting rest. You run yourself ragged if you don’t. What kept me awake was the fear that the fright and the hurt and the worry of something going wrong wasn’t ever going to go away. It is something that is with us for good, unlike a newborn which grows and flourishes, the same as a parent’s confidence. What kept me awake was the cruddy and erroneous suggestion that something as commonplace as an allergy-induced bloody nose might forever be connected in Lia’s precious mind to her diabetes, simply because we had tested her blood. The same as we do when she eats, or plays sports, or stays over at a friend’s house, or feels miserable or looks tired or generally acts something other than her usual illuminating self. What kept me awake was the wonder of just where does it all fucking end?

I know the rejoinder, it doesn’t. We’re not strangers to this anymore. I get it, this is the way that it is. But hold in the palm of your own hand this little girl’s life and tell me that that is okay. Tell me that we can control it. Tell me that it gets better. Even peace of mind can prove sinister sometimes in its motives. Lia is catching on to this fact and to some extent that is good, she needs to be burdened with the knowledge that to stay healthy for every decision she makes there is a consequence. But this awareness comes at a cost that as a parent I am saddened to see her pay.

Take for instance, this valuable diabetic lesson: This past weekend she was at a friend’s birthday party. Like before, I had her call and tell me what she was having to eat. She said pizza and ice cream cake, and I dosed her for both. Later, when I picked her up I asked how she liked the cake. She said she didn’t. I said what did you do about it then. She said I ate it. When I asked her why she said because I had to.

Whose Woods These Are

I went away the other weekend. It wasn’t a long away, just an overnight with a friend of mine spent camping in the mountains and fly fishing the next day. Franca had been back from France for a week and with spring and the weather turning I was eager to log some solitary time on a river somewhere. It’s not healthy to never take time for yourself, even if seems requited at the time, and while Franca and I have never treated our relationship with give-and-take reciprocity, we both knew I needed a break all right.

I am not a very good fly fisherman, I lack the resources required to give it the attention you need in order to become good at it. Often I go and never even see a trout. They are there, I know, their noses pointed upstream, wavering in the slick dark current, because I see other fisherman catch them or the satisfied angler comes clomping through the brush on the path along the riverbank carrying a string of rainbows, or browns, but mostly rainbows; nodding their head in my direction and raising their catch just high enough to catch my eye. I’ve never been that fisherman, nor that much of a braggart. Whenever I did catch fish, I let them go. It wasn’t for the fish that I went there.

The morning we woke at the campsite was cold. The firewood was damp and only would burn for a while if someone was not there feeding it twigs and blowing it back to life whenever it went out. We made coffee and ate fruit and toasted slices of bread over the stove and ate it with peanut butter while waiting for the sun to peek over the ridgeline and begin to warm things up. Afterwards we cleaned up and broke down the camp except for the tent and got into our waders and readied our fly lines and watched as the daylight slowly crept down the opposing mountainside until it reached the open meadow just to the south of our camp. Then we walked down the hill through the field and followed the sound of the river. We passed through a thin strand of woods and the river was there. It was wide and fast moving and shallow too except for a couple of deep-looking pools. Already several fisherman were scattered standing knee deep in the current in the various poses of fishing, but they paid us no attention as we climbed down the bank and into the river.

I left my friend at a wide open stretch of water where low hanging branches would not interfere with his cast and I walked up along the side current to one of the pools I’d seen. I did not see any trout, but trout like most wild things understand the importance of camouflage while man only knows how to get from one place to another as quickly as possible, so there is no guarantee I would have spotted them if they were there, which they were. I was encouraged nonetheless as I made my way upstream, choosing my step very carefully and keeping to the shallower sections where the brown bottom was clear and the current was slow and the footing on the rocks more reliable.

I stood at the edge of the pool, the water up to my thighs, my feet staggered against the undercurrent driving against my legs. In the pool the water was darker and the sunlight that passed through the glassy surface reflected off the tops of sunken boulders then was swallowed by the depths of the hole. I read the lay of the pool and fed out some line with a few false casts and then laid the fly down in a spot just upstream. The nymph at the end of my fly line lit on the water and sunk and the floating line caught in the current and brought the whole rig floating back towards me and I quickly began stripping line to stay ahead of it, feeling and watching for a strike, of which none came. I cast again. And again, and again.

For five hours I fished the river, hole after hole, bend after bend, one white-capped ripple after another. I stopped only for a bite of lunch and not once did I let my mind wander to think of needles, or of test strips, or of boluses and blood sugars. At one point a river otter passed a few feet away from me on the opposite bank and I watched after it as it went bouncing and bounding over fallen trees and rocks until it disappeared into a rock crevasse and I thought how nice it would have been for Lia and Krista to have seen it too. But mostly I thought of nothing more than just being a part of that river in every moment, letting my mind clear itself of the worry that had been with me the last three months.

Not long before this getaway I was sitting at my desk one workday when Lia called to say she was having a low. I thought about it and I told her what to do and hung up and sat there and thought of my wife and felt a bit of envy for her. How nice it must be to have a job away from home to occupy her attention. Not waiting for the school to call. Not dosing from long distance. Not sitting there wondering if the treatment I’d just given was right. That was foolish thinking of course. Occupation does little to free someone from the worry and stress that is the daily routine with diabetes. There is no such thing as down time.

But that afternoon on the river did something for me that sitting at home at my desk day after day could never do. It gave me permission to play, to take a small break from the worry. To let go. And take something back of myself.

At the end of the afternoon I sat down on the riverbank with my feet still in the current. I took off my hat and my sunglasses and closed my eyes and felt the river’s heartbeat with my own. It felt good. I felt happy.

On this Earth Day 2010 I encourage everyone to get outside and enjoy the peace and pleasure and tranquility that being in nature can bring you. It’s out there, on our planet. Go find it. Get involved.

The Part of the Pancreas

Most people don’t think much about the pancreas. Most of them of course don’t have to think about it at all. But there are a few who, because of events that have occurred outside of their control, must spend a great deal of thought deliberating exactly what it means to act like a pancreas. In drama, when actors do this they may create in themselves the thoughts and emotions of the character they are playing in an effort to develop a lifelike performance. It is called method acting. I like that. I like thinking in terms of practicality, theory and emotion. They are concepts very much suited for nailing the part of the pancreas.

The event that brought about this purpose in us happened last December, or actually sometime before, though we don’t know how long before and anyway it was December when we finally found out about it so there was no casting call, no audition, no understudying. This role was simply and crudely handed over to us. Nor, because of the sudden dismissal of the prior performer, was there any time alloted for rehearsal, though we were given the benefit of learning our part in the relative comfort of our home stage, with only one major exception. Nonetheless, if we are to believe our tutors, our training has gone rather well.

On opening night our hopes were high. The stage was set, our lines committed to memory, and the mood, as the audience was seated, was positively electric.

Characters

Lia, a happy, energetic young girl

Dad, a worrisome father

Pancreas, a Patton-esque figure suffering from an identity crisis, but still wants to be in charge.

Setting: Home and Little Friend’s House who is hosting an overnight birthday party. The time is Morning, Noon, and Night.

Scene I

Breakfast. That morning. Lia is sitting at the kitchen table, in theory testing her blood glucose level, but in reality farting around with paper and magic markers. Dad is at the refrigerator preparing her breakfast.

DAD. Can you please check your blood, sweetheart? (There is no answer from Lia). Lia?

LIA. What?

DAD. Can you please check your blood? (Lia puts down the marker and takes up the lancet device and pricks her finger, then touches the test strip to the droplet of blood.) What’s it say?

LIA. (Reading the meter) 276.

DAD. Really? (Lia holds the meter up from him to see for himself. He walks over to the white board and rights the number down. To the right of it he scribbles a calculation, and beneath that he adds up the carbs of her english muffin and banana).

LIA. How much?

DAD. Well, it comes out to 5H, but…

PANCREAS. 5 units is way too high.

DAD. Why’s that?

PANCREAS. It just is.

DAD. Could you be a little more specific?

PANCREAS. (Sighs with exaggerated exasperation.) Well, Mr. Amateur, for starters, she had pasta last night. You know the effect pasta has on her blood sugar.

DAD. Yes, but that was thirteen hours ago.

PANCREAS. (Ignores Dad’s comment.) Secondly, she has a party tonight and that means she’ll be running around, playing, yelling and screaming like her and her young friends do whenever they get together, generally making it hard for anyone else to think much less–

DAD. Can you just skip to the point?

PANCREAS. There’s no reason to get snippy.

DAD. There would be no reason for this conversation at all if you’d just do what you are supposed to.

PANCREAS. It’s not my fault.

DAD. Whose is it then?

PANCREAS. Blame those little white blood-sucking cells. They’re the ones gunking things up.

DAD. Whatever. I still hold you responsible. This is your job and you’re not doing it.

PANCREAS. You can’t talk to me like that.

DAD. I can and I will, now back to her breakfast. Why not a 5H?

PANCREAS. Because, if we want her to be a little high tonight so you don’t lose any beauty sleep worrying your balding head over her suffering a low, then you have to factor in the carbs she’ll use burning up all that energy.

DAD. It won’t matter, I won’t sleep anyway. But okay, what do you suggest?

PANCREAS. 3H.

DAD. (Looking skeptical.) 3H?

PANCREAS. That’s right. That should just about hold her steady at 125. Then this afternoon we can back off a little bit.

DAD. 3H seems low.

PANCREAS. It isn’t.

DAD. Why not 4?

PANCREAS. Because 4 is too much.

LIA. (Holding the insulin pen and looking a little peeved that she isn’t eating now that he made her put away her drawing things.) What’s the dose, Dad?

DAD. (Dad studies the calculations a moment, then looks over at Lia.) 4H.

LIA. (Lia sets the dose and gives herself the shot in the stomach.) Can I eat now?

DAD. Go ahead. (He walks over to the sink and stares out the window at the garden.)

PANCREAS. You’re welcome, but I think you’re making a mis–

DAD. Shut up.

Scene II

Lunch. Lia is sitting at the kitchen table before a plate of graham crackers, yogurt and a cheese quesadilla. In her hand she holds the blood glucose meter, which reads 89. Dad is standing over her looking perplexed.

PANCREAS. Told you so.

DAD. Spare me the attitude.

PANCREAS. Well, maybe you’ll listen to me next time.

DAD. Maybe I’ll have you replaced with one that works.

PANCREAS. Good luck with that.

LIA. I’m hungry, Dad. Can I eat?

DAD. (He looks at Lia.) Not yet. (He studies the white board where all the data has been collected.) What do you think? (Pancreas doesn’t answer. Dad sighs.) All right, I’m sorry. Yes, I should have listened to you.

PANCREAS. There, that wasn’t too much to ask, was it? My theory is we cut her bolus by half a unit and give a 2H.

DAD. Half a unit?

PANCREAS. You’re already factoring in her low sugar level. You don’t need to go overboard cutting the dose to match the carbs. This is lunchtime, remember. Her body converts energy differently than at other times of the day, but she still needs insulin.

DAD. Yeah, but cutting only half a unit doesn’t make sense, not with her sitting at 89.

PANCREAS. It will when you see the result.

DAD. And if not? This isn’t some lab rat were testing your half-baked theories on, this is my daughter.

PANCREAS. I know who it is, and my theories are not half-baked. They are based on millions of years of complex, fine tuning. Listen, just trust me, trust yourself. Together we’ll get her through this.

Scene III

In the truck, on the drive over to Little Friend’s house. Lia is sitting with her diabetes kit open in her lap and waiting for the meter to give her the blood glucose reading. After it beeps, she reads it and looks at him.

LIA. 241.

DAD. 241?

LIA. Yeah.

DAD. What time did we eat lunch?

LIA. I don’t know. Twelve o’clock.

DAD. (They come to a stop sign. Dad waves a pickup through the intersection. Lia is occupied putting her kit away.) What’s that all about?

PANCREAS. What’s what all about?

DAD. 241?

PANCREAS. Could be anything. Leftover carbs from lunch, excitement at going to the party. Could be the little cold she’s been fighting, or she’s growing, or–

DAD. Or maybe the dose wasn’t enough.

PANCREAS. It wasn’t the bolus.

DAD. Then what is it?

PANCREAS. I don’t know.

DAD. You’re a lot of help, you know that.

PANCREAS. Be patient. You’ll see.

Scene IV

Dad is home working on the computer when the phone rings. He answers it.

LIA. Hi Dad, my number is 122.

DAD. 122, really?

LIA. Yeah, and I’m having two pieces of pizza and ice cream with Oreo cookies.

DAD. I can do the pizza, but is it ice cream and a cookie, or Oreo cookie ice cream?

LIA. (Talking to someone in the background.) How much is 21 grams of ice cream, Dad?

DAD. (Dad walks over to the freezer and pulls out a container of ice cream and reads the nutrition information.) 21 grams is half a cup. That’s about two scoops, honey.

LIA. Okay. (Dad holds the phone in the crook of his neck and walks over to the white board to work over the figures.)

PANCREAS. What’s that?

DAD. I didn’t say anything.

PANCREAS. Oh, I thought I heard you say something.

DAD. I didn’t say anything because I don’t want her at 122. I want her at the higher end of her range like 170 or 180 before she goes to bed.

PANCREAS. Is she going to bed now?

DAD. No.

PANCREAS. Then back off.

DAD. All right, smart ass. What should I dose to get her to 180?

PANCREAS. How many carbs?

DAD. 58 grams.

PANCREAS. 1 unit.

DAD (Talking into the phone.) 1H, honey.

LIA. All right, Daddy. See you later.

PANCREAS. Just like that? No argument?

DAD. Do you want one? Cause you and I got plenty of other things still to talk about. (There is no response from the pancreas.)

Scene V

Dad is standing outside Little Friend’s house. It’s 8:30 at night. He rings the bell and Little Friend’s mother answers and leads him inside. He finds Lia sitting on the sofa with Little Friend and a group of other young girls. A movie is just starting to play on the television.

LIA. Daddy! (Lia jumps up and runs over and hugs him. She has changed into pajamas. Dad picks her up and holds her in his arms.)

DAD. How’s the party?

LIA. Great. Can I have popcorn with the movie?

DAD. Of course. (Dad sets her on the floor and finds her diabetes bag leaning against the wall in the corner and picks it up and takes it over to where Lia has settled back on the couch.)

DAD. Do you want to do this here? (Lia nods and jumps up and takes charge of testing her blood.)

LIA. Everybody watch. (The other girls follow her movements as she pricks her big toe and squeezes the blood a little too hard. She takes what she needs for the test strip and then pulls the foot to her mouth and licks the big toe clean.)

DAD. Nice.

LIA. (Shrugs.) What?

DAD. Nothing. Where do you want your Lantus? (Lia pulls up her sleeve. The meter beeps and they read it together. Dad stands then and fixes her bedtime dose and gives her the shot in the arm but winces as he pulls the needle out. A small dot of insulin appears on the surface of her skin. Lia winces too but she looks at her friends watching her and the look quickly disappears. Dad hugs her and whispers something in her ear. The scene then cuts to him back in the truck driving away.)

PANCREAS. What did you say to her back there? (Dad doesn’t say anything.) You don’t have to tell me, I was just wondering.

DAD. (Finally answers after a minute passes.) I told her she was the bravest little girl in this entire world.

Scene VI

Dad is sitting alone on the sofa with his feet propped up and a glass of red wine on the table beside him. The computer is on his lap and the television on. The phone rings and he answers it right away.

DAD. Hi Sweetheart!

LIA. Hi Daddy.

DAD. You getting ready for bed?

LIA. Yes.

DAD. You sound tired.

LIA. I’m not. We’re going to go to bed but we’re going to talk some.

DAD. That sounds fun. What’s your number?

LIA. 181.

DAD. That’s great, honey.

LIA. Ok. Goodnight Daddy.

DAD. Goodnight sweetheart. I love you. Call me in the morning. (Dad hangs up the phone. He looks out into the room at nothing in particular with a contented look on his face.)

PANCREAS. You did it. 180, just like you wanted. (Dad sits quietly.) You should feel good about that.

DAD. I’ll feel good when this night is over and she’s back home.

Scene VII

Dad is sleeping in bed beneath the covers, breathing heavily. The room is dark. Something startles him and he wakes suddenly. He leans over and reaches for the phone.

PANCREAS. What is it?

DAD. Was that the phone?

PANCREAS. I don’t think so.

DAD. (He listens but no one is there, just a dial tone. He sets it back down.) I thought I heard it ring.

PANCREAS. I didn’t hear anything.

DAD. Just a minute. (He gets up out of the bed and turns on the light and looks at the display on the phone, then he sets it back in the cradle and goes down the stairs and turns on the light in his office and picks up that phone and reads the display there and then sets it back down too. He runs a hand along the back of his head and walks slowly back upstairs and lays back down in the bed.)

PANCREAS. Everything okay?

DAD. I thought I heard the phone.

PANCREAS. She’s fine. We did everything just right.

DAD. I know.

PANCREAS. What time is it?

DAD. One-thirty.

PANCREAS. You told her to call when she gets up?

DAD. Yes.

PANCREAS. Then go back to sleep.

DAD. (Closing his eyes, whispering to himself.) She’s fine. She’s fine. She’s fine. She’s fine.

Scene VIII

Dad, looking tired and still dressed in his pajamas, is sitting at his desk looking at pictures posted online of his wife’s trip to France. Every now and then he glances at the telephone sitting on the desk, or at the clock in the corner of the monitor screen, or out the window. He is on his third cup of coffee when the telephone rings. He looks at the caller ID and smiles and brings the handset up to his ear.

Lonesome du Jour

It gets very lonely when there is just one of you because there is no one to share in the worry and fatigue of what has become a daily ritual so that the headaches and sleeplessness and frayed nerves are yours and yours alone. When being apart was something you were just planning for at a time when your child had been recently diagnosed with diabetes and one of you was going to be gone for a significant period of time it looked much easier to carry out those plans if you made travel arrangements of your own for yourself and the rest of the family. Then everyone could be removed from whatever drudgery had become the routine and make something new of it. But there is little to find good in a new regimen if it includes the same troublesome tasks and lively misgivings you had to begin with at home. You are just packing up and taking those obligations with you and then unpacking them in a place that for all its homeyness suddenly is made to feel alien and strange with this excess baggage.

Franca had organized and booked an eight day trip to France last fall for herself and several of her students. This came months in advance of Lia’s holiday diagnosis and though she no longer looked forward to the trip with as much anticipation as when she had planned it, she was the group’s leader and could not hardly cancel. Besides, originally the timing of it worked out well because it occurred over the kids’ school break so I could take them for a short visit to my mother’s, who lives five hours away, thereby lessening, I hoped, in some small increment the impact of my wife’s absence in our lives. The kids were due a visit anyway. We had intended to go at Christmastime and had not been to her house since last summer so the girls were anxious to get back. I was excited too as I found the idea of a change in scenery very persuasive. But mostly I went just so I would not miss Franca as much.

Her flight departed on Thursday. Lia, Krista and I left Saturday after Lia’s soccer game. Despite her afternoon activity, Lia’s blood sugar levels had been high since dinner the night before and by the time we arrived at my mother’s house around suppertime it had been hovering for most of the day in the low to mid 200s. We treated it and ate and went outside and played until well after dark with my sister and her three children, who had kindly come too for a visit. By 10:30 and bedtime, her sugars had dropped to 73. I treated it with two glucose tabs and set my alarm from 2:00 a.m., at which time it checked out at 83. Still worrisome, I set the alarm again to wake me up two hours later and check it again, where it read finally, 114. I fell back asleep beside her imagining that this is what it might be like if I were to do this always alone: Restless sleep interspersed with periods of wakefulness filled with an edgy worry over the balance of food, activity, stress, insulin, and excitement and what effect these basic necessities of life were having on blood sugar levels, and with no end in sight whatsoever.

Meanwhile Franca has been providing daily updates of her tour through Paris and the lovely and picturesque Loire Valley; of visiting grand chateaus and dungeons and ancient troglodyte caves; of eating mushrooms and escargot, and tasting splendid wines; then of driving north up through Brittany to Mont Saint Michel and Saint Malo, where on the bay each spring the crashing high tides transform the sea into a raging spectacle. I have been to Paris and traveled the French countryside with Franca before and though the weather this time has been wet and cold and her schedule hurried and crammed with events, this trip has been good for her. It’s been a chance to get away and experience the food, scenery and culture of a world foreign and vastly disconnected from what our lives have become since last December.

But it has been hard on her too, and not just in the way you might miss being with your family. Back in January we had all taken part in a clinical trial to screen for diabetes-related autoantibodies. Two weeks before she had left, the results came back indicating everyone’s test was negative. When Franca read her letter there was real sorrow in her eyes.

You’re disappointed? I asked.

She nodded.

You really hoped it would come back positive?

She had told me once before almost in tears that she wished she had diabetes too so Lia wouldn’t have to do this alone, so she would have someone there with her testing their blood, taking their shots, counting their carbs together. Now this letter had come in the mail informing her that the chance of that was low.

Since then nothing has changed. That is simply how strongly she feels about being away while in the midst of this life-altering adjustment. That no matter how far we travel, five hours or an ocean away, diabetes is with us wherever we we go.

After two nights at my mother’s and another at the house of friends, we returned home. It was a nice visit with mostly nice weather and everyone, especially the girls, enjoyed themselves, which was what they had both expected. I, myself, had not known quite what to expect — Family, camaraderie. Certainly not a vacation, not relief from the concerns and struggles that accompany diabetes — and so in return I have little to say about it, other than it was pleasant and I have few regrets. It was good to see everybody and it was good for them to see Lia too, so they can understand better what diabetes is to her and what her life and our lives are like because of it. But this trip was very hard because I was alone and Franca was not there to worry and hold hands and lose sleep together, so I can see the welfare in our staying put and accepting things as they are and not trying to tinker too much with them when there is only one of you.

In these early months after diagnosis, though, every new thing is a learning experience and someday, I hope, even the ritual will feel routine; but until then we have Lia’s sleepover at her little friend’s house, which means one more lonely sleepless night.

Logbooks, Lows and Larry

Before, much earlier, a year or two prior to Lia’s diagnosis when all of our children still lived at home, including our now-collegian son, one of the kids would be given the task of setting the table for dinner. Then if they lingered too long afterward we would ask them to call their siblings to dinner when the time arrived. Normally that task would fall to Krista, because she was the middle child and because John, as the oldest, was pretty much head-dishwasher designee. So Krista, when directed, would turn and face the rest of the house from wherever she stood in the kitchen and lowering her voice as deep and as authoritative as she could muster would bellow, Time to eat (thus raising the ire of both of her parents — and our parents before — as with that kind of effort we could have done the job ourselves!).

But occasionally we’d feel sorry for John and his dishpan hands or, more likely, we would be thinking that soon he’d be leaving and Krista required some on the job training for when she assumed his dishwasher role, so he would be called to set the table. John is a funny fellow. He loves theatre and performance. For him, the world is truly an apron upon which life’s tragedies and comedies unfold. He takes nothing too seriously. The joy for him is in the presentation and the art of participation. On one of these role reversal occasions, instead of just calling his sisters to dinner, he walked to the bottom of the stairs and cupping his hands around his mouth as if speaking into a microphone, called out with curt, radio-announcer precision: Krista Bear to the office for a brain scan. Lia Rosa to the office for a brain scan.

It was funny and amusing, in a teenage kind of you-had-to-be-there-to-appreciate-it moment. For the sake of preserving the performance in my memory, I assigned his character-voice a name: Larry.

Larry is a solid guy, one facing life’s struggles head on, with purpose, optimism and resolve. He tells it like it is, without sugar-coating or dancing around the issue. Come to the office for a brain scan. No please. No handholding. No discretion. Just get there and get there now. I like Larry. He ma not be the kind of guy I’d want to share a beer with on a Friday night, but I respect him for that. His kind of stoic, no-nonsense way about him is admirable when it comes to addressing life’s more difficult challenges.

We all have a little bit of Larry in each of us. He’s the voice in our head who tells us what we should have said minutes, hours, or days after a particularly emotional incident. That take no crap kind of voice. That tell me you understand one more time, I’m going to lose it on you kind of voice. He’s forthright and bold and at various times we all wish he could be real.

I think of Larry whenever I sit down to decipher Lia’s diabetes logbook. The logbook is one I special ordered because we didn’t like any of the ones that came free with the meters or were given to us in the hospital. Designed like a teacher’s weekly grade book, this one has some real oomph behind it. It’s serious business. There are places to record blood sugar six times a day. Places to indicate food, exercise, carb counts. Places to record blood sugar before exercise and after. Places for daily notes and comments. Places to indicate normal and night basal rates for the pump. This logbook has everything. It is the bee’s knees of logbooks, as far as I can tell, thus justifying a $30 price tag.

Our practice has been once the week is finished, usually on a Sunday afternoon, I take the logbook off the counter and sit down at the table and highlight the blood sugar recordings in the following fashion: Low is red. Normal is green, and High is yellow. It gives us then a colorful visual image of how the week just went. The result is normally a neon-salad mixture, the week is never just green or yellow or red, though there have been days we cheered about where it’s normal all the way through. Mornings and evenings, however, seem to be the best bets for green. At night and the late afternoons are when the reds appear, and for whatever reason late morning and the middle of the day has the best chance of turning up yellow.

These are not rules, you could not set your watch to them, but they are the best information I have. So I sit at the table with this wondrous and marvelous tool at my full disposal and I try to interpret what exactly it means, something beyond just the colors. I analyze the food, the carbs consumed, I consider the dosage and times of the blood sugar reading. I compute and total and average and sum and divide and break all these figures back down again into their simplest denominator. Nevertheless, I glean very little as to why on one day the eggs and banana she had for breakfast caused her blood sugar to rise more than 150 points by lunch and on another day it dropped. Tuesday is pasta night at our house, always, for ever and ever. Last week on Tuesday her blood sugar dropped 100 points before bed. This week on Tuesday it rose by 100.

I scratch my head. I search for clues. I sift among this color-coded rubric of my daughter’s innermost recent history tormented by what it won’t tell me. I wonder what more I could do, the values we aren’t tracking, the variables not plotted, and I worry that it’s this very lack of knowledge that brings her to her mother or me several times a week saying, Mommy, Daddy, I feel shaky.

I know, there is much we still have to learn about this invisible intruder. There is much we don’t understand, and might never understand. This is indeed very serious business. It’s the kind that a made-up guy named Larry would tackle just for its incurability, because somebody has to, somebody must. We’re fortunate real people do, and in remarkably exceptional ways. But even Larry knows when it’s time to back away and let things cool a bit, and so it is with his same confidence and his same good judgment that draws me to close the logbook, forget about what was and disregard for a while the things that we don’t know and focus instead on the things that we do, such as family and sharing and life’s little funnier moments, and let these inspire our performance.

A Simple Question

Things are getting better now, aren’t they?

I was standing outside my daughter’s school preparing to go in for a Valentine’s Day party when my sister asked me this question over the phone. I paused only briefly, my hand on the door. It had been seven weeks since Lia’s diagnosis and my sister and I had been talking about the management of her diabetes, but for some reason her question had caught me off guard. My very first impulse was to say, yes, yes, of course, things are going much better. To say otherwise would make me sound weak and incapable, a whiny victim to the situation. But because her question, when she asked it, had come at the end of our conversation, I was able to let it go until later in the day when I forced myself to revisit it.

Things are getting better, aren’t they?

It doesn’t sound like a difficult question and though my sister had the best intentions in asking it, it is not, I think, the kind of question that people affected by diabetes like to consider. Because without a cure, no is the only correct answer: No, things are definitely not getting better.

But on the one hand they are. We are better for having the knowledge of what we are up against, much like the early-yet-shocking discovery of a water leak is to a soon-to-be-shipwrecked sailor. Knowing is better than not knowing. You can react to such information. We are better for having a greater understanding of what diabetes is, for knowing how Lia’s body is unable to convert food into energy, how when this chronic condition raises her blood sugar, she turns thirsty and tired and irritable and how if it’s left untreated will cause her serious health problems. We are better because we discovered her illness sooner than later, so she is not part of the millions of people with undiagnosed diabetes getting sicker and sicker by the day. We are better because we have all, especially Lia, moved past the shock and fright and pain of the diagnosis and are taking very seriously every single daily aspect of her life-saving therapy. In these terms, yes, things are better.

Things are better too in that Lia’s classmates understand and care about her diabetes, as do her teachers and the school staff. We’ve become better mathematicians, better nutritionists, better fitness trainers and food scientists, better planners and packers and time managers, better family crisis counselors. What with all our focus on diabetes, we’ve even become better attention-getters.

What hasn’t gotten better, and what I believe is at the heart of the issue, is that the question hinges on the now, not the future. Where every day, according to the American Diabetes Association, up to 65 adults go blind from diabetic retinopathy. Where every day 128 adults with diabetes enter treatment for end-stage kidney disease. Where every day 195 lower-limb amputations are performed due to complications resulting from diabetes. Where every day insurance and the cost of care too often dictates the treatment. Where every day children become adults facing a life expectancy 10 to 15 years shorter than their peers.

Yes, we are optimistic. Yes, we are managing. Honestly, there is no other choice, and while I can say that today things are getting better — right now, right here, at this very moment, having just spoken to Lia myself, things are just fine — in an hour or two, or a day or a month or a year or twenty, who’s to say?

What, other than our own diligence, will keep her safe?

What, other than our own initiative and self-discipline, will prevent her from suffering as one of the tens of thousands who fall to those grim, terrifying statistics?

We are getting better because to dwell on these things is to dwell to no avail, like that sailor now clinging to the outside of his raft while adrift in a raging sea. At some point you simply must pull yourself over the side and pray that rescue is imminent. For that, we need a cure.