Where Are We Now

When it was through multiple daily injections instead of a pump that we delivered insulin to Lia, minus the early emotional strain, it was a fairly straightforward method of managing her diabetes. Or as straightforward as any such nearly impossible task can be. Three times a day she ate a meal, normally of food prepared in our kitchen, and for which we bolused insulin beforehand based on her blood sugar and the food’s carbohydrate count. Before bed we gave her a long-acting shot of Lantus to cover all of her non-food requirements for the next twenty-four hour period. In between these occasions we monitored blood sugar, treated lows, used exercise to bring down high numbers, snacked responsibly, and did all we could to go about our daily lives and not be slave to the next shot. In addition, we kept copious notes in her logbook of what she ate, how much we dosed, and how she reacted to certain foods; and we read and talked often of ways to better ensure her happy, healthy future.

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.

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.

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.

Out of Sight, Out of Our Minds

We knew the invitation was coming, we just didn’t know when and it was like waiting the arrival of a dreaded phone call. On the day Lia brought it home from school it was mostly a green day, so the notion of letting her spend the night at another child’s house was not totally out of the question. Had it come a few days earlier when her blood sugar was soaring in the middle of the night and sinking in the middle of the day the dilemma we, as her parents, would have faced by this colorful cute piece of cardstock would have likely been short lived, then subsequently recycled with a succinct, but well-meant: I don’t think so. But that would have been cruelly breaking an agreement and Lia, as it were, was leaning toward wanting to go to the party and sleeping over at this little friend’s house. So even if we had wanted to brush off the affair we could not, not without there being some consequence. Just the fact that she was even thinking of not going was enough to make us consider that we should insist that she go, because the promise we’d made was that important and not something to take lightly. We knew this even as we sat in the hospital room the day after her diagnosis, still muddling through our grief, still dealing with the shock, still questioning why, but with still enough wits about us to emphatically agree with whoever commented that diabetes didn’t have to change anything that was good and good for us, like eating party foods and sleepovers. We would outlast the shock and the grief and the question of why and whatever things Lia did before, she would be able to do after. That was our agreement.

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….

Knowing Beans

Meanwhile, we were very hungry for information. We knew very little about diabetes and what we did know consisted mostly of what we had learned from my father’s type 2, which he suffered after a long while of poorly managing his congestive heart disease. Even that, because we did not live nearby, was limited to the occasional finger prick or food preparation around meal times. More often his diabetes was kept like tens of millions of others: quiet.

But where to begin? Who and what that I read could be trusted? A web search on the term diabetes alone generated 66 million results. Type 1 Diabetes yielded a little bit smaller return at 17 million. Children with type 1 diabetes, just over 4 million. In fact, you could drill down as far as you liked — cure, symptoms, treatments, statistics, research, diet, behavior, life expectancy — and still come up with millions of possibilities. And that too was part of the problem. What exactly was I looking for?

Up until then, and really the entire year prior to Lia’s diagnosis, I had been on somewhat of a fence in my life, though even that analogy, I feel now having written it, is inadequate in that it suggests I was discontented or directionless. I wasn’t. I was actually quite happy working as a writer, doing what I love best to do, and spending more time with my family than I had ever been allowed when working an outside job. But the economy, the wars and domestic affairs, were both pushing and pulling at me. I wanted to be engaged in what was happening in the world around us for myself and my family’s sake, but at the same I fancied withdrawing to a simpler life on some mountainside, writing novels no one would ever read and our family pretty much tending to itself. It was never likely to happen, with children involved even self-reliance is better in moderation. So we settled instead on a garden, which brought us some independence, good health, and much learning and work to do. Toward that end, my wife and I threw ourselves into the task, determined, in the words of Thoreau, to know beans.

But the knowledge of growing a vegetable patch is much different than the knowledge needed to fight diabetes. With a plant there is a natural order of events. The seed in the soil once nurtured becomes the tiny shoot, which sprouts leaves, gathering nutrients from the sun, and in time bears food. It is a very deceptively simple process, one for which it requires little help. My job mostly was to prevent any intrusion into the process, then get out of the way and let nature take its course. Diabetes is not that way. You do not set the seed and forget about it.

But really, where do you begin to know diabetes?

The treatment of course is important, critical, in fact, so in the first days home from the hospital we relied on the material provided by the pediatric endocrinologist’s office, which taught us the basic survival skills we now needed: dosing insulin, counting carbs, recognizing the signs of low and high blood sugar. For a more detailed picture, we devoured The First Book for Understanding Diabetes. Narrated by the Pink Panther, it delved deeper into nutrition, complications, self-management, and general support. In preparing for Lia’s return to school and the creation of a 504 plan on her behalf, we adhered almost verbatim to the School Advisory Toolkit for Families published by the JDRF. To prepare her classmates, I met with them during lunch one day and we read and talked together about diabetes. They asked questions and I answered them best as I could.

There were other sources, of course. Personal accounts, research updates, clinical trials, articles and books on food, treatments, d-kits, and tips on coping. Works of investigative journalism by Hirsch and by Hurley. Blogs by Kerri and Patricia and Leighann. We exhausted the internet, the library, the educators, and all that we learned was and is still not enough. But at the same time it’s a bit much and overwhelming. It’s almost like being on that fence again, straddling two worlds, one that seems dead set against you and the other that makes you feel safe, protected, and cared for.

Still I wonder: with raising a garden there’s an end, a harvest. At the end of knowledge is what? Empowerment? Inspiration? Action?

As a parent of a child with diabetes, I can honestly hope it’s all three.

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.

Without Envy

When the three of us arrived at this lavish resort there was much excitement and gaiety. It was sunny and warm and the hotel and landscaped grounds were elegant and stunning. We had travelled before as a family to other various interesting places — Paris, Rome, Belgium, Germany — but those trips were mostly family visits and Lia, the youngest of us, especially, could count on one hand the number of times she had stayed in a hotel, much less one as deluxe as this. For her, the very moment we entered through the enormous revolving door everything turned wondrous and magical. From the woodcrafted staircase and textured floors to the foosball table in the sports lounge, Lia was thrilled beyond measure.

The exuberance Franca and I were feeling was of a bit different nature. We had both wanted and needed to get out of the house if for no other reason than to shake the fresh hellishness of the holidays. Though our house was far more pleasant than the hospital, it had become little more than a cafeteria and nursing station, with around the clock food prep and health analysis. We had to get out and get away, in much the same way new parents must eventually venture outside the home with their newborn baby. We had to be tested. Could we handle the pressure? Did we know enough to control any situation? Could we be careful enough not to cause our precious little package more hardship? On the surface this trip was to attend a family conference on diabetes, that was our reason for being there, but on a much more innate level it was about us reasserting ourselves as parents, as the ones in charge. The Head Honchos. The first thing we did, of course, was screw things up.

Because we were in the car at the time we missed Lia’s afternoon blood sugar reading, which when we finally checked at the hotel came in at whopping 315 and should’ve been treated with insulin, but the time was too close to dinner for us to dose then. So we went downstairs to the lobby, where more people were coming in from the parking lot, and checked in with one of the volunteers, who directed us to the registration area. We signed in and walked and looked around the hotel some and by dinner her level had dropped to 237. Not good, but manageable. We juiced her and ate and listened with interest to the guest speaker, all the time believing that with her numbers trending down, we were back on top of things. Ninety minutes later, she complained of feeling dizzy. Her blood sugar read 49. We treated the low with juice and fifteen minutes later she was back up to 109.

Parents 1, Diabetes 0.

An hour after that she complained again of dizziness and was back down to 64. Tied up.

Fifteen minutes later, she tested at 59.

Advantage, Diabetes.

We were were exhausted, feeling outwitted and a little bit afraid, but thirty minutes later her blood sugars leveled out in the 120s and we went to sleep. At one o’clock, Franca took another blood sugar test. It read 271.

It’s maddening, this disease. We left home hoping to find something positive, some promise on which to build on our faith that one day our daughter won’t have to deal with this contrary illness. Instead, we found contradiction and opposition. We weren’t ready to leave the house. We weren’t ready to be put in charge again.

The next morning we rose and went about attending the conference, which went actually very well. Other than one minor afternoon low, Lia’s body did what we asked of it. Some of the speakers at the information sessions we attended talked over our heads, some not high enough. Mostly though they shared with us many useful things: techniques for coping, techniques for cooking, techniques for finding resources. They lectured us on the objectives of diabetes research and we met a number of people, in fact, who’ve been managing their diabetes for years, even decades, and been the beneficiary of such scientific breakthroughs. We made many helpful contacts with those who live near us and discovered a fellowship of like-minded people, who try to look past the wonderful, amazing assortment of tools aiding in the treatment of diabetes for a cure.

That is the real test, finding a cure, becoming part of that discovery. Perhaps only then can a parent lay down their heads at night and sleep without worry, without envy.

An Irregular Regular Routine

Here’s how it begins, our waking hours: Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

Our life at every meal. In the mid-afternoon. At bedtime. In the middle of the night when everyone used to be sleeping. It is what we think about, what we talk about, what we worry ourselves sick over at all hours of the day or night, struggling with the fear that in any one of those critical steps we’ll make a mistake. On the dosage. On the carbs. On how we react to the intelligence we collected. And always, always, there is the one nagging question: how did this happen. How?

Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

Somewhere in the midst of all that is hope, but for now our focus is much more immediate and we are working hard to handle that well, Lia especially. Remarkably well for someone so young, so innocent. True, there are moments of anxiety, frustration and pain, mostly around the shot, but sometimes with the regimented snack schedule too, but she owns this and she knows that she owns it and I honestly hate that for her. I hate it. We all do. If only there were some way to take her place. But the hard truth about diabetes is that it is not hers to give away and she knows this. It is something that she has accepted and so this is what we must do.

Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

To read more about the care of Type 1 Diabetes, please follow the link Type 1 Diabetes Control and Management.