Riva Greenberg wrote an interesting piece earlier this summer (and which appeared last week at A Sweet Life) on a disappointing experience she had using a continuous glucose monitor, and it reminded me of our own brief and unhappy history with one of these hi-tech devices.

About eight months after Lia was diagnosed with T1 and only six weeks after going on the Animas Ping, our CDE suggested we give a “blind” CGMS a go. Franca and I agreed, after all, what in the world did we know about diabetes management. We were still wrestling with its very presence, and on top of that (disqualifier), we thought it’d be good information to have in helping us configure the settings and maximize the power of the pump. Unfortunately, it appears, heightened emotion and naivete are two sure signs that other than the experience of trying something new, very little good will come of the extra effort. Now we know.

For starters, the device was just too big. Lia hated it and its presence, in her mind, was inescapable. She could not forget it was there and so she scratched and scratched at the area, clawing her nails over and around the little contraption until she had managed to unplug, as it were, the business end of the monitor, rendering lost the last day or two of information, a fact anyone had failed to realize until the nurse at the endocrinologist’s office saw the missing days in the data, or rather failed to see the data. In our mind, even one second spent in discomfort or otherwise hampered by diabetes is one second too much. Strike One.

Though our endo’s office had assisted us in initially programming the pump’s settings — one carb ratio, one insulin sensitivity factor, three basal rates for a 24 hr. period — it became pretty much up to us to figure out how to fine tune them. Ignoring (for now) the gross dereliction of duty I now believe that was, setting up a pump is no simple small task, no matter how long you’ve had diabetes. Six weeks later we were still chasing numbers all over the place, correcting blood sugars day and night. The fact of the matter was, it was just too soon for us to be test driving the newest technology. Going to a pump from shots is not the same as say, switching from a stick to an automatic. We were still trying to figure out the complexities we already had. Were we ready to try a CGM? No way. Strike two.

And finally was the data itself. As this was a blind CGMS, the readings were not provided to us in real time. It wasn’t until two weeks later at our endo’s office we were finally able to see them. Without going back and comparing our logbook to the data the CGM spat out, there was no way to know if the thing was even calibrated correctly. For sixty bucks, I honestly expected more than that. End of story. Strike three.

Like Riva, Franca and I would really love to have a CGM in our corner. It’s something that should be in every parent’s corner. Taking care our children is hard enough without using all available resources. Unfortunately, we’re not looking to sign one up anytime soon, and it wouldn’t matter if we were, Lia’s experience turned her off the idea anyway. In her mind the rules just aren’t that complicated. Three strikes, you’re out is plenty enough.

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.

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

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

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

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

As for the dog?

Commitment. Loyalty. Obedience.

Two out of three isn’t bad.

Now, before you say anything, I know this is probably my fault. Like most everything in and about this house, he doesn’t get enough attention. I know that. We worked with him a good deal when we first brought him home from the pound, struggled hard to get down to the bare bones of what makes a good dog tick, and for a while he did really well, and us, too, with his training. With some basic behavioral understanding and simple commands, we could get him to sit and lay down and come to a whistle. Some days he did better than others. Some habits we simply couldn’t get him to break, such as chasing after cars if one happened to invade his immediate space. Other things, for whatever reason, like learning to shake, were difficult to grasp and took a great amount of effort on both of our parts. With practice, however, we managed and eventually even the hard things became simple, too. But something in the last year has changed. I just noticed it in the last few weeks, but I think it’s been building up over time, this will to not do what we say.

In the likelihood that some animal expert out there will suggest it, I’ll be the first to say, I get what it is that I ask for. And all that I ask for from Jake is the same that I’d ask of any addition to our family: play nice. In return, I don’t make of him ridiculous requests, or ask that he do something that’s impossible, as in, say, talk like a pirate or go get his own damn breakfast. I give him his freedom to act like a dog and he gives us his love and companionship. It’s a shared responsibility, which is why yesterday morning when I asked him to come and he looked at me and saw what I wanted but just stood there staring back at me, until I told him to come once more, in a voice more suited for commanding authority, and he turned and ran away — and then stayed gone for hours — that I simply could not believe it.

How could this be? We had worked so hard. We had an understanding. We had accepted him and his imperfections and though our arrangement with him was not ideal, what with the lack of time and attention, there was never a shortage of need or respect.

They say a dog’s motivation is tied closely to its social order, that is, how goes the pack goes the animal. If that’s true, and I believe that it is, then we do have ourselves to blame. But it’s not the question of blame I am searching to fill. I just want what’s wrong to be fixed. I want him to listen. I want what we have in our lives to play nice and if not, at least have a good reason.

Perhaps if we could trade places, Jake would see that I only want what’s good for him, too. The world is a dangerous, sometimes godforsaken place. It is full of  unwelcome things that want to invade our space. It’s important we all stick together. And on my end, I think maybe it’s time to dust off those books and training manuals, because in them, I’m sure, there is something I missed and like anything else in this life, if you give a thing an inch it’s bound to take a mile.

Lia and her dad are on a field trip to visit a Native American settlement that had been founded and recreated along the banks of a very old river. It is a three hour car ride from school, for which they program a +30% temp basal. They arrive and while watching a documentary film of the tribe, Lia indicates she’s feeling shaky. Fearing a low, they apply an alcohol swab to her finger and check her blood. It reads 331. To bring it down, the pump suggests a dose of 4.10 units of insulin. The two of them talk and decide that 4 units is just too much, especially for the way she is feeling. They agree on a dose half that number. They finish the film and go outside and stand in the rain to watch a demonstration of primitive hunting, after which it is lunchtime. Ninety minutes has passed since Lia received the dose. Before eating, she checks her blood and the meter reads 64. Lia and her dad share a perplexed look with one another. With almost one full unit of insulin still on board, what might have happened had they given the full amount?

It may be that Lia is still honeymooning, though her endocrinologist thinks not. It may be the first reading was just wrong, perhaps her finger wasn’t cleaned properly, maybe it was a meter accuracy issue.

Or it could be that treating diabetes isn’t really just a matter of science. It requires more than mathematical logic and the relationship of quantity, patterns and conjecture, but must also take into account the most primitive and genius of the human condition, the element of instinct.

Not to take anything away from science. It is science that made the field trip that Lia and I were on even possible, without it the village would’ve stayed lost forever. But just as emotion and intuition were certainly a part of the people of that great settlement, and possibly even its demise, I wonder where in the complex world of artificial re-creation does the word hunch fit in.

On November 14, World Diabetes Day, Juvenile Diabetes Resource Foundation Advocacy is hosting Type 1 Talk in an effort to bring type 1 communities together from across the country for a lively and engaging discussion on various pertinent topics. To join the talk on Facebook and host or find your own Type 1 Talk event click here.

If you too use intuition for treating diabetes and would like to suggest your own question for the moderator or cast your vote for Without Envy’s suggestion, click here before the end of the day today, October 22, and under topics search: emotion.

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.

As a result we were rewarded with the majority of her blood glucose readings in target range and a three month HbA1c two full points lower than when she was diagnosed. But besides being hurtful to Lia, the shots were time consuming, inflexible, and less precise than we wanted to be. The strongest thing they had going for them was that in theory a shot has minimal lasting impact in the course of a day. You deal with it and move on. Lia could dose and as long as that dose was marginally accurate she could within reason forget about diabetes. The key word, of course, is marginal, which when held up against the sexy appeal of technology doesn’t stand a chance. Add to it the reality of what it means to deal with diabetes and move on and we naturally leaned toward the pump.

So it has been three weeks since Lia switched over to the Animas Ping and while there have been some great improvements to her treatment, chiefly the absence of needles, the verdict — for us anyway — is still out on the MDI vs. Pumping debate. On the one hand, it is much easier to dose. Just enter a few numbers, press Go and voila, insulin delivered. The remote meter makes it even less intrusive, enabling us to not even bother Lia except for the blood test. The logbook reflects blood sugar results similar to what we were getting on shots, perhaps a bit higher as we are still trying to learn the pump’s capabilities and fine tune the many settings; and while we haven’t yet had a glycated hemoglobin test while on the pump, all indications are that it will be acceptable.

So why not stop there, with acceptable? Why muddle things up with second-guessing the reasons for abandoning what had so far proven to be an effective means of treating diabetes? Lia prefers the pump. It works well. Her numbers appear fine. Everyone is happy to be rid of the shots. Why can’t I be content with that?

Part of the reason why is the complexity of it all. Our expectations were high on the pump, either because of our lack of understanding or it being oversold to a couple of amateurs. The pump is no silver bullet. It is an intricate piece of equipment that requires extensive thought and expertise to use it to the fullest of its capabilities and achieve tighter blood glucose control. Tighter control, however, it appears at the moment, is synonymous with greater worry, and possibly even risk.

I’m not opposed to worry or work, especially if it will benefit Lia, but we are still newcomers to diabetes and there is much I’d still like to learn about it, and time I’d like to devote to research and advocacy. I wonder if the energy to calibrate the pump to Lia’s insulin requirements would be wiser spent, at least in this early diagnosis stage, better understanding the effect food and exercise has on Lia’s blood sugars. It feels at the moment like taking off in a plane without having thoroughly learned how to land it.

Complexity is one thing. It can be overcome through knowledge and experience, two things of which are both in short supply around here. But the other reason I am not quite sold on pumping over the shots has less to do with technology and Lia’s treatment than it does her way of life. It comes back to that minimal impact thing. MDI, as sad as it may sound, fit our lifestyle nicely. We eat real food, enjoy both vice and virtue in moderation, and take seriously the health of our mind, body and spirit. The shots, since she had to take them, became simply another part of the way we live our lives. Not a preferred part, mind you, but a part nonetheless. They were a few seconds of discomfort. We tried not to dwell on them, only the results.

But any loss of the privilege to live life unattended is the same no matter the treatment. Whether it is a shot taken before a meal or the programming of a highly specialized device, ultimately it will be Lia’s overall health that will direct us. I just hope that as these and more and more options open up to her they don’t come at some greater cost.

To find out more about the research being done for the treatment and cure of Type 1 Diabetes, click here. To get started as an JDRF diabetes Advocate, click here.

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.

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.

Then why was she not clamoring to go spend the night with her friend? What had changed?

Plenty, of course, but other than the fact that diabetes is not something you simply ride out as you would a visit from a crazy step-cousin, we knew what had been entrusted to us from the moment we left the hospital: bring Lia home to the same energetic, exciting and promising life she had before she got diabetes.

But once we were away from the round the clock care of the hospital, reality intruded and we alone were faced with raising this child we love dearly, a tiny little someone to whom we could never explain how all this had happened, and pretending that it didn’t terrify us was impossible. So for the first sixty days Lia slept with us, a habit she so contentedly formed she began keeping her PJs in the same nightstand as her mother. For that long and longer we’ve been pricking her finger seven times a day in an effort to capture and record data, half of which we may have little use for other than just the security of knowing. She’s seldom been out of our sight, other than school, and even there we are a presence. Away from the classroom, our work and our play revolve around the timings of food and of shots and of blood sugars, and always of someone being with her.

It has been breathless and time consuming, her care. But it has been both a good and necessary kind of breathlessness, like climbing a mountain top or falling in love. The experience and confidence and payback is beyond anything ever imagined.

But there have been drawbacks as well: privacy, diverted attentions, lost sleep, fruitless work, and now, with this party invitation, we see that Lia may be changing as well, in a way that no one had intended. Her joy, which is that of being with others and making them laugh, is as true and perfect and as uncomplicated as a good friend’s request to come celebrate her birthday. Neither are the sort of pleasures that should be compromised by diabetes.

In the end of course we won’t let it, we can’t allow it any more than we can let it take over our bedroom or curb the routines we used to keep for ourselves or obstruct us from the activities we enjoy, and it will be a wonderful victory to celebrate; but I hope when the party is over and Lia is safely back home and there is no more doubt of who is in charge of our lives, diabetes or us, the feeling that had been like doubt when Lia brought us the invitation will be just one more thing we outlast.

To be continued….