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….

One a.m.

The Things We Have Now

The chirping alarm clock wakes her. Promptly the comforter stirs, legs skimming across the mattress. A shadow lifts out of the gloom as she pulls herself from the bed. She passes like a spirit through the room and stoops outside the door. Seconds later blue-white light fills the hall as she stands upright holding the flashlight that sits plugged into the wall socket. She points the beam ahead of her and enters the other room, where there lies a tiny figure asleep in the bed, bundled deep beneath the covers.

She stands over the child and listens for breath, watches for the shoulders to rise and fall. She sits at the edge of the bed. At this hour the house is quiet and still, there’s no sound save that of the weary resting. Some nights you feel you could sit there forever, just you and the dark and all that unparalleled quiet, if not for this darling small child.

On the beside table lies the slim black kit where she placed it the evening before. She reaches for it and pulls on the zipper and spreads the contents open on her lap: the meter, the test strip and lancet. When she is ready she reaches for the child’s hand, but the air in the room is chilly, the covers warm and snug. The arm extends only after some struggle. Then she arranges the fingers before her, holding them steady while adjusting the light and in the washed out, colorlessness of it all, the blood, when she draws it looks black. It forms a dark bead on the surface. Carefully she aims the tip of the strip at the tiny droplet and an instant later the meter beeps. Seconds pass. The beep sounds once more and she reads the number on the display.

She packs up the kit and zips it closed. She rises and turns to look back at the child. The arm has already withdrawn, tucked safely beneath the covers. She brushes the hair away from the small round face, tucks the sheets firmly about her shoulders and kisses her softly on the cheek.

The beam of light precedes her into the hall and she secures it to the  charger on the wall and moves as a shadow once more through the doorway.

The comforter lifts. The legs slip over the mattress. The stillness returns.

It’s one a.m and all’s well.

Phone Privileges

The Things We Have Now

She calls at ten a.m.

I want to talk about school. How she’s doing, what she’s learning.

She entertains my wishes only momentarily, then gives me her meter reading.

I say the number back to her and write it down.

She asks about her snack.

I tell her what it is.

She asks, What did you pack for three o’clock?

I tell her that too.

Can I switch them? she asks.

Of course, I say, you can switch them.

We talk again at noon. I ask is she having a good day.

She says that she is and gives me her number.

I write it down. She wants to get back to lunch and her friends, I can tell. I figure her dose and tell it to her and let her go.

At three she calls once more. How are you feeling? I ask.

Good, she says merrily and I believe her.

How was your day?

Good. Daddy? she says before I can say anything more.

Yes dear? I answer.

Tomorrow can you pack beef jerky?

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.

Back to School

Two and a half weeks after Lia’s diagnosis she returned to school. The holiday break was a godsend, giving us time to get our arms around her diabetes, so by the time classes started back up we all had become lay experts in the field, at least in terms of counting carbs and dosing insulin. And Lia was ready to get back. She was eager to share with her third grade teachers and classmates the news of her diabetes and the grown-up manner in which she treated it. It was something Franca and I were anxious to have behind us too.

We had always been on good terms with the elementary school and we both liked her teachers very much, as did Lia too. But neither of us were sure what reaction if any the administration might have in helping us manage her treatment. Franca is a high school teacher at the same school but on a different campus and knew firsthand of the process as well as the planning, preparation and partnership it would require of everyone, especially of Lia’s teachers. So the first thing we did was schedule a meeting with the school for the Friday before students returned.

To prepare for the session, Franca read through and followed precisely the suggestions outlined in the Juvenile Diabetes Research Foundation’s School Advisory Toolkit. This guide, which can be downloaded from the JDRF website, offers a great many details and tools for parents and educators to use in developing a collaborative and thoroughly detailed plan. The toolkit was invaluable and made it much easier for us to understand and share with the school Lia’s specific needs.

As we expected, her teachers and the principal greeted us at the meeting with compassion and promised us their diligence in attending to Lia’s wellness. We spoke about diabetes and the war it had raged inside her pancreas and we helped them understand what was required of Lia and those responsible for her to ensure she’s receiving the care necessary to keep her safe, be it food, access to the bathroom, frequent blood sugar monitoring or insulin. We went over her daily schedule and the times of the day she would need to check her blood sugar and what symptoms to be on the lookout for in the case her sugar levels rose too high or fell too low. We gave them contact numbers and instructed them in the use of glucagon kit. We showed them the supply kit Lia would be using at school. We talked about the letter we were sending home to her classmates’ parents informing them of her diagnosis and we asked to come talk to the students themselves about diabetes, to which the school agreed, as they did to everyone of our other requests, including the creation of Section 504 plan, specific to Lia, outlining in writing the modifications and accommodations the school would provide in regard to her medical disability.

There was much more still to understand and talk about but when we left the school an hour later I felt much more at ease. The principal and teachers had convinced us that we had an ally in them in fighting against this disease, and though their word was all we had, sometimes you just can’t ask for any more than that. Only the day and the weeks and months that follow will truly tell.

To find more information on the JDRF School Advisory Toolkit, click here.


Liabetes

I think about this, about her, a great deal of the time, especially when she is not near me. I wonder what she thinks of it. What she fears. What she knows about her diabetes. She is brilliant and surprises me every day with just how much she’s listened and retained and what of this she is applying to her own life.

Some of what I hear is sad: I wish I didn’t have diabetes and could just eat what I want when I want.

Some spirited. To her sister, who early one evening jumped playfully onto the bed and landed partly on where she was laying: Ow, you hurt my pancreas.

But most of what I see and hear is Lia’s unshakable resilience. Before ever leaving the hospital she was pricking her finger and checking her own blood sugars. From day one at home she was doing the calculations to determine her insulin dose. Two weeks later she’s giving herself injections. I am astounded at the grit this challenge has given her, but only so much for she entered this world pretty much fully loaded with mettle.

It is a story she loves to tell herself. How eight years earlier on the Sunday of Labor Day Weekend, she burst onto the scene. A tiny, gray-skinned infant, kicking and screaming in the back of an ambulance in the parking lot of a Ruby Tuesday’s restaurant.

Thirty some-odd minutes earlier, her mother and I had been at our house, first patiently counting the minutes between contractions, then panicking as without warning they skipped from ten to three minutes apart. I called her doctor from the car. A few minutes later, 911. The operator who answered the call transferred me to a highway patrolman who forwarded me to a paramedic who, after hearing me tell our dilemma, asked what I wanted to do.

Do you know where the new Ruby Tuesday’s is? I asked him. He said that he did and I told him we’d meet him in the parking lot next door.

Then, in a scene like one only joked about: Franca, her knees bent and raised high in the air, supported from behind by one of the paramedics, who had positioned himself there, I can only assume, due to the space constraint, but mostly because he could not just sit by the side and not participate, while the second man sat at her ankles, wearing blue surgical gloves and waiting, waiting, with his hands open wide, like a catcher behind home plate.

It was a favor to all that he didn’t have to wait long. In roughly the time it takes to make a sandwich Lia Rosa spared any further delay and sprung forth.

She’s been in charge of the scene ever since (or so her big sister claims, but Mom and Dad know otherwise).

It would be a great leap for any parent to make to go from that first image of her laying on her mother’s warm chest in the back of that ambulance to eight years later us sitting in a mini van in the parking lot of a Wal Mart in between doctor’s visits and coaxing her to please, just please, try and give yourself the shot, because we know, her mother and I, that we can’t always be there and that now at this very moment the most important thing our daughter can do is learn to press that needle into her flesh and it just rips our hearts to pieces when despite her fears, despite the memorable sting of that needle that she has lived with for all of two weeks, and despite the organic simplicity of her age that has been forever shaken, that she takes up the pen needle and bravely does what we ask  because she trusts in us wholeheartedly and she sinks it into her stomach.

I sit there and watch at the dimple of skin in her tiny round belly where the needle is pressed and we count up to five with her. Her voice is low and steady. I draw strength from it like a pilgrim drawing his faith from bible passages. After she’s finished and withdrawn the needle she smiles at her accomplishment. I look at my wife and I see on her face the love and the sadness and also encouragement and I know then that it will be fine. We all will be just fine, but especially Lia. She had taken charge of her diabetes. She owned it, as much as anything in this world can be owned and no matter the cure that would one day be coming or the miracle that probably would not, for just that one brief instance I saw in my daughter something beyond her mettle and resolve. I saw her stoic will to endure. That’s Lia. That’s her.

Later that afternoon, we were sitting in the classroom listening to the nutritionist talk about portion sizes when Lia, who had brought along the white board we’d been using to do her humalog dose calculations on, flashed a big grin as she held up the board for everyone in the classroom to see. It read: Liabetes.

Endurance? Mettle? You betcha. My kid has loads of it.

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.

Home Again, Home Again, Jiggity-jig

And so here we are home again. Living some semblance of living amidst the glucose readings, needles and counted carbs. You start to think: How in the hell did this happen? To her. To us. To me. Why? Was it something I caused? Some plague I’d escorted unsuspectingly into our home, a danger I’d failed to perceive, or was it merely the sentence of just punishment for my own unresolved past behavior employed by an absolute, vengeful god. You start looking, digging deeper, searching for reasons where no reason could, or should, possibly fit.

What changed in the last few months? Our diet, her hygiene, the weather? Had she been wearing a coat and a hat to ward off the chills in the air?

Was she washing her hands before meals? Perhaps it was in the water itself — how long since the well to that underground sea had been tested?

There were the flu shots taken in October, for H1N1 and seasonal influenza. Were the conspiracy theories I’d seen flooding the internet on to something? At the same time her doctor reported a slightly elevated cholesterol screening, which we nonchalantly dismissed. She’s eight years old. We eat good. We eat healthy. There must be some mistake.

Maybe it came from the garden though. An infectious diabetic microorganism that burrowed past the flesh of the tomatoes, zucchini or cucumbers and was feeding and breeding and otherwise doing its part for the life cycle, until one of us came along with snippers for the evening harvest.

Or was it the chickens? Six months earlier, in the late spring of last year, I had just finished work on a novel and took a weeklong break from work to construct a backyard chicken coop. A farmer friend of ours was moving and getting rid of his seventy-strong flock of layers and as we had recently ventured ourselves on a promise to live closer to the land, my family and I welcomed thirteen of the hens into our family. Lia and Krista went with me to the farm to pick them out and by the time we got them home, a few of the girls bore names: Nugget, Speedy, Bob, Brown Chicken. Could one of those gals be culprit? Was this onset of diabetes a half-sibling to avian flu?

And so on and so on and so on it went, in the days following her diagnosis. I wanted answers. I wanted something or someone to blame, even if it was myself. I wanted to know why my daughter was having to face such an obscured disease. I’ve never been a strong believer in faith, other than in one’s self or family, and with my child facing such an obstacle there was nothing I was not willing to question. No entity or belief that did not warrant scrutiny. These were my rules for how the new world operated and caveat emptor, let the buyer beware.

But at the same time there was reason for optimism of a different sort. The mindful human kindness of friends and from people we’ve met in these past few days has been overwhelming. In the midst of this misfortune, their acts of compassion and our further understanding of diabetes may eventually, I hope, prove that the things that happen in life are not random and for my daughter and all of us, one day some good will come of it.

If you’re finding it difficult to cope with diabetes and need some support, or are just wanting someone to listen, please follow the link We’re here to help.