Family Affair

For another account of the effect diabetes has had on our family since Lia’s diagnosis I’ll turn to one of our two other children. Though I am not always a very good practitioner of this, if you can be successful in getting them to open up honestly or are yourself perceptive enough, children can be a good gauge for ascertaining which things work well in a home and also for those things that do not. Sometimes, if a parent is in the midst of a crisis, as we were and sometimes still find ourselves, children may be the better and only true barometer for how well a family is functioning.

I’ve written some about them before: Krista’s worry over becoming diabetic herself; John’s thespian talent. But those were stories of them reacting to Lia’s diabetes and not real depictions of the ways in which they and us all were being made to change because of diabetes. That I have tried in some part to do on my own. Besides, change requires some level of acceptance and because it is not their body that has come under attack and must now be reliant on something external to keep them from harm, how could either of them possibly react in any other way but disparagingly toward its relevance and necessity?

I can remember when Lia was first diagnosed with diabetes there was a period of time where none of us knew what exactly it meant to have diabetes. Later that day, driving John and Krista to the hospital, I was asked about it — or maybe I just took it upon myself to inform them — nonetheless, I shared with them a few of the words I’d held onto from the doctor’s office: high blood sugar, ketones, pancreas, hospital. When those had left me and I had only my own worry to keep me I said nothing at all.The children listened and they were quiet too afterwards, of such little use was my ignorance. I can only imagine what they were thinking. What message of foreboding had I conveyed?

Since then, of course, we know more, and they too. So not long ago we asked our oldest, our son, to put down in words what Lia’s diabetes meant to him in terms of change. It was, we thought, a fitting request. John had been in deep water himself for some while on an unrelated matter and both Franca and I were interested in how diabetes may have altered for the better his own personal mindset. In hindsight, neither of us were prepared for his answer.

We had hoped his awareness now of this chronic disease had illuminated in him the need for direction, for finding opportunity and taking action. He would see in his sister just how fragile life can be and so with fervor would launch his pursuit of whatever bright future awaits him. Much like the mantra I use with my students at a writing conference I teach at each summer: How do I know what I think till I see what I say? I borrow this phrase from the English writer, E.M. Forster, in order to challenge them with this theory that even our own thoughts are a mystery to us until we take time to write them down, only then can we know their effect. This is what we were hoping to inspire in John. Revelation. Understanding. Acceptance.

Of course, roads everywhere parents travel are littered with ambitious pipe dreams for their children. This one was no different.

John’s essay began straightforward enough, highlighting Lia’s inspiring rise to the occasion of her diabetes, then went on to talk about the subtle changes to his eating habits. He mentioned, incorrectly, how his mother and I became incited, because of Lia’s diabetes, with corporate food processing and its effect on nutrition, specifically sugar. From there though the essay took a much more open and personal turn, as he accused his mother and I of constantly reminding him and his sister of how lucky they are for being healthy, thus adding more guilt than he already felt to the insurmountable truth of that fact.

I read this and at first I was angry. Constant reminder? Guilt? Blame? Where was the inspiration to make all he could of his life? Where was the yearning, the passion, the power of persuasion an illness like this should have over him? His essay wasn’t about him. It was about us, about me, about how Franca and I were treating him and his sister in relation to Lia’s diabetes. And that, as they say, is the rub.

I approached Krista and discovered that this was how she felt too and began to realize that although what we got from John wasn’t exactly what we had asked, it was honest and had required his private reflection. A parent can ask for no more than that and while it may not have been completely accurate, it did in it’s own way reveal a good bit about him (and us) and was, with some hope, inspirational, or at the very least empowering, for him to share.

So where does this bring us?

How do I know what I think till I see what I say?

It is nearly impossible under normal conditions for a family to know the aftermath our words and actions will have on one another. When you add something as frustrating and time consuming and as puzzling as diabetes, it’s a hundredfold harder, so the consequences are greater. John’s essay reminded me of that. He meant it not as a condemnation of our actions, though it felt that way as I read it and maybe even to him as he wrote it, but it was simply the view from another set of eyes watching out for the many dangers that lurk on this rough passage we now find ourselves. Like the view of the ocean from the ship’s crow’s nest, no other sailor aboard sees that vast body of water the same way. Of course there will be swells of uncertainty, periods of grief and solitude, far-off distant mirages that bring false hope, and also false sorrow. But there will be wonder too and the comfort of togetherness as we each rise above those occupational hazards to find that we are not after all alone, but a family.

And that much, I am happy to say, Diabetes has not changed.

Double Blind

Word of his death came to me in the middle of the night as I was making my lone way back to where he had lived. I had been far away visiting other family when his heart condition worsened to the point that I felt that was where I needed to be. I came as quickly as I could but he died before I arrived, in his sleep, at his home, with my mother and my siblings close by. He was old and tired and very sick and I will always have the regret of not being there with him at the end.

I wonder what he would have thought about this, my father. A patient himself of chronic illness for over two decades, what might he have to say about Lia’s diabetes? Would he accept it for the illness it was and as such assign to it his steady and unrequited worry, much as he did for his own incurable condition? Would he become an expert at her treatment, studying everything he could get his hands on in order to keep his grandchild from harm? Or would he, as he had proven himself in the past during times of child-rearing hardship, serve quietly and simply as our faithful companion as we went about our parental duties of caring for her?

His response, I imagine, would have been a grandfatherly concoction of all three: worry, preparation and support. But people will surprise you and my father was no exception to that rule and so in saying he would have reacted in any one manner over another would seem purely a guess on my part. Life is such the classroom that no one holds all of the answer keys. Instead, we all lack bits and pieces of information, some of which might be good to have, while others might lead to prejudice and like some scientific experiment skew the results, perhaps even sometimes favorably. There is no question, for instance, how my regret would have found closure had I prior knowledge of the minute and hour of my father’s last breath.

Such as it was, for months afterwards, whenever I visited my parent’s house I would wander and look through the things that my father owned and with which he spent his time: books, tools, containers and cartons of goods he’d collected over his seventy-six years. Amongst them I hoped to find some less rueful memory of him than that of my irreparable mis-spent time. Then I quit one day after my mother caught me in this act of inventorying his life and she looked at me with tears in her eyes and said, You walk around here and you see the places he used to be. I walk around and all I can see are the places he isn’t.

She was right, and my father, I think, would have agreed. We live each day blind to all the things we don’t know, about ourselves and especially about one another. We try as best we can to move past the hurdles, the biased and skewed results, the many unintended consequences, and look for meaning not in the things we own or the activities we pursue or even in the afflictions that haunt us, but in the simple, daily presence we share in the lives of those we love.

It has been almost three years now since my father died and that lesson is still not lost on me, nor has it sunk in permanently. Just the other day I was in my garage and I opened the door to the extra refrigerator we keep there and several bottles fell from the shelf in the door. One of them shattered on the floor. I cleared the mess and saw that what had broken was a bottle of non-alcoholic beer. The beer had been bought for my father during one of his last visits to our house, I couldn’t remember which. With so much time having passed though, I don’t know why I’d chosen to hang on to it, other than it was his and as such had become a part of him. More likely, I was just not throwing it out as I was keeping it for some intended purpose. As it were, I cleaned up the bottle to throw it away but before I did I thought to check the label to see if there was a date that might suggest just how long the beer had been lingering in my cold storage. It read: Best if used before October 2007. One month after his death.

Strangely, I felt only a tinge of grief over throwing the broken pieces away, just as it finally felt right to stop wandering his house like some misinformed ghost hunter. I was never going to find him in any of those things, and it’s true I’ll never know how he might have reacted to Lia’s diabetes, you can bet he would have handled her with tender loving care. Of that much, I am certain.

Balancing Act

Other than Franca, there are a few people who know me very well to whom I look for friendship and support in handling the routine face-off between family, work, and pleasure, and of which of course in our house, diabetes plays a significant part in all three. Their opinions, advice and experiences help shape my own philosophies and behavior. So when not long ago one of these friends, a person of very strong faith and commitment, appeared surprised by my use of the yin yang symbol to represent Without Envy on the web, I responded candidly, but with some  nonchalance: It represents balance, I said simply and then went on in some disjointed, ineffective manner trying to connect this image of well-being to my concept of spirituality. After all, overcoming hardship has always been a process of moderation and mind-over-matter for both Franca and me, regardless of the circumstance. Why shouldn’t it be the same for diabetes? With the right focus, discipline and prioritization we could do for Lia’s diabetes what we had done with every other conflict that had entered our lives: we’d manage.

But days after my friend’s comment I decided to take a bit more time to consider the question again. What exactly was it about this icon of circling light and dark that I felt it could represent something as momentously crucial as raising a daughter with type 1 diabetes to live life to the fullest? Wasn’t the very concept of yin and yang — two equally dependent opposing forces, each giving rise to the other — in stark contrast to what we most wanted for our child, a life free of this damned chronic illness?

On top of that, I had spent less than an hour, at most, on the internet searching for an appropriate image in response to what had, in an instant, changed our lives forever. Granted in the weeks leading up to Lia’s diagnosis, the Tao philosophy of kindness, moderation, and humility had been a focus in my reading, so it had clearly been on my mind for some while. But where was the balance and natural order of opposition and equality in a life made more difficult because of a non-functioning pancreas? Where does the sunset end and the sunrise begin? How does the seed reach its greatest potential?

The answer: I don’t know.

I honestly don’t, which I suppose is the challenge. Living with reality. Creating a path of sorts through the universe, finding balance where you’re able and learning to embrace the whole and not the parts of who you are.

Lia has diabetes. That is a fact. Also a fact is her wonderfully ordinary life. This journal is where I write about how we manage the two of those things together. There are days where the words and our lives unfold easily, without tears, without envy, without too much of any one effort. Then there are days when they don’t, when it seems only darkness prevails. For comfort we look to one another, or find it in the community and from friends such as the one I mentioned above. For hope we turn to science. Both make the journey we’re on feel like we’re not so alone. Yin yang is there for those times we feel like we are.

A Walk in the Park

With Lia unable to attend the JDRF Walk to Cure Diabetes because of stomach ills the morning of, we decided to host our own and invited some friends to participate in a Walk to Cure Liabetes this past Sunday at a local park. It was Mother’s Day and the weather that afternoon was gorgeous and the park was crowded with families and everyone was happy. After a short walk we ate picnic dinners and listened to a free concert that was being presented by the town. There is much more I could write about our day and the feeling of community which it brought us but I am happy, on this one occasion, to let a few pictures speak for me. For this and more pictures of Without Envy, please check out our recently created Flickr page.

Can’t Take My Eyes Off You

The bed shuttered slightly as the train passed out of sight in the dark just down the hill from my sister’s house. Franca and I were sitting on either side of Lia, holding the hair back from her face as she vomited again into a wastebasket. The nausea had come on just after midnight when she’d woken from sleep with a whimper, then jerking upright in the bed and clutching both hands to her mouth we hurried with her to the toilet. The spells of sickness continued every thirty minutes or so and after a while we stopped making her get up and shuffle through the hall to the toilet while trying to catch what we could with a towel and I carried the wastebasket to the bedroom and set it beside the bed. We checked her blood sugars and felt for a fever, and believed by the looks of the contents she’d thrown up that she was sick because of something she’d eaten, a clementine perhaps, or a cracker. By morning the vomiting had ceased and Lia said she felt better. She asked to get up and we did, relocating downstairs to the couch, but after a few minutes she was back asleep. Two hours later when she woke again, her urine tested positive for moderate to large ketones. I looked at Franca, she looked at me. Both of us knew what was coming.

We were there visiting my sister and her family for the weekend to attend a JDRF Walk to Cure Diabetes. It was our first Walk since Lia had been diagnosed and we were excited to be participating in such an event and moved by the opportunity to see and meet other people so intimately connected and familiar with juvenile diabetes. With my sister as captain, we’d formed a team, collected donations, had t-shirts designed and printed. For Lia and everyone of Team Liabetes this was our chance to experience firsthand the compassion, commitment, and community of which we all now belonged. But by now everyone was awake and there was a collective sense of dread in the room. No one mentioned the Walk. We knew we had to get fluids in her to bring down the ketones and we focused on that while we waited for the nurse hotline to call us back. So then Franca filled her in on the details and the nurse confirmed what we both had been thinking, that Lia should go to the hospital.

Hospitals, I think, especially emergency rooms, are typically not very good places for people who are sick and wanting to get better quickly. They are cold and impersonal, with form-letter questions offered and responded to in haste and in some cases not asked at all and therefore let unanswered, which may be okay if what you need is a broken bone set — all the proof is in the x-ray — but in caring for chronic illness you have to be on your guard, and in the overheard words of the doctor treating Lia, we looked like a couple of novices. Had I heard her then I might have had something to say about that, but later, after we took her back to my sister’s, well after the Walk had ended, it occurred to me that it wasn’t our lack of experience that had gotten us in trouble. It was our confidence, and it started really before we’d even left our house.

When you do something day in and day out, hour by hour, minute by minute, it becomes routine to you, and though it seems the first rule of diabetes is that there are no patterns, our watchdog treatment of it had become second nature to Franca and I. Checking blood sugars, monitoring food intake, giving multiple daily injections, observing activity, evaluating temperament, watching for signs of physiological distress. We’ve learned in the last four months to do these things in the dark, while half asleep, at work and in keeping a house and while struggling to preserve a strong hold to our family’s non-diabetic identity, and though we never feel like we have it licked, we do work hard at maintaining — a word I hesitate to use — Lia’s blood sugars.

The trouble with travel is believing that the confidence you carry at home is the same one that comes with you when you go to another place. I knew that it wasn’t from when Franca was gone to France. It may look and feel like confidence but away from home routines crack and break, they fall apart. There are too many new things to consider, new people, new foods, new lifestyles. If you let them they will get in the way of what has worked for you in the past and instead of having the effect you’re familiar with it has the opposite. When that happens it takes great courage to move beyond it.

We think it was something she ate, we said. Plus, there was lots going on, the car trip, then we stayed up later than usual. There was other company too, lots of running around. It may have just been the excitement.

Did anyone else get sick? the doctor asked.

No, just Lia.

The doctor looked over her vitals, checked her ears, peered down her throat. Asked her to take deep breaths. She stepped back and wrapped her scope around her neck. I knew what was coming and had already cautioned the doctor that it wouldn’t be easy. Lia would soon know this too.

The doctor looked down at her as she spoke. Well, little miss, we have two choices.

Okay, Lia replied.

We need to get some fluids in you to help your body get rid of those ketones. One way of doing that is for you to drink lots of liquid and stay here for five or six hours while it does its thing. The other is you let me put in an IV and you’re out of here in two or three.

I can go back to my aunt’s then?

That’s right.

Lia looked thoughtful. We had already talked about this, about how when she’d had an IV before, on the day of her diagnosis, her body was severely dehydrated. Then her blood vessels were collapsed and very thin, it’d been very difficult to insert a needle into them. Today was different. Today she was much better, stronger and it would hurt but not like before.

Lia made her mind up and when she spoke her voice sounded strange, far too grown up for the small little figure sitting up in the bed. Then I’ll take the IV, she answered.

The doctor nodded and left to go put in the order. Lia looked over at me and her mother.

I didn’t know what to say to her. Somehow sorry was just not enough.

The Part of the Pancreas

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

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

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

Characters

Lia, a happy, energetic young girl

Dad, a worrisome father

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

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

Scene I

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

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

LIA. What?

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

LIA. (Reading the meter) 276.

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

LIA. How much?

DAD. Well, it comes out to 5H, but…

PANCREAS. 5 units is way too high.

DAD. Why’s that?

PANCREAS. It just is.

DAD. Could you be a little more specific?

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

DAD. Yes, but that was thirteen hours ago.

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

DAD. Can you just skip to the point?

PANCREAS. There’s no reason to get snippy.

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

PANCREAS. It’s not my fault.

DAD. Whose is it then?

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

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

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

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

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

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

PANCREAS. 3H.

DAD. (Looking skeptical.) 3H?

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

DAD. 3H seems low.

PANCREAS. It isn’t.

DAD. Why not 4?

PANCREAS. Because 4 is too much.

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

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

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

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

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

DAD. Shut up.

Scene II

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

PANCREAS. Told you so.

DAD. Spare me the attitude.

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

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

PANCREAS. Good luck with that.

LIA. I’m hungry, Dad. Can I eat?

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

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

DAD. Half a unit?

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

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

PANCREAS. It will when you see the result.

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

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

Scene III

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

LIA. 241.

DAD. 241?

LIA. Yeah.

DAD. What time did we eat lunch?

LIA. I don’t know. Twelve o’clock.

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

PANCREAS. What’s what all about?

DAD. 241?

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

DAD. Or maybe the dose wasn’t enough.

PANCREAS. It wasn’t the bolus.

DAD. Then what is it?

PANCREAS. I don’t know.

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

PANCREAS. Be patient. You’ll see.

Scene IV

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

LIA. Hi Dad, my number is 122.

DAD. 122, really?

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

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

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

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

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

PANCREAS. What’s that?

DAD. I didn’t say anything.

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

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

PANCREAS. Is she going to bed now?

DAD. No.

PANCREAS. Then back off.

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

PANCREAS. How many carbs?

DAD. 58 grams.

PANCREAS. 1 unit.

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

LIA. All right, Daddy. See you later.

PANCREAS. Just like that? No argument?

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

Scene V

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

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

DAD. How’s the party?

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

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

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

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

DAD. Nice.

LIA. (Shrugs.) What?

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

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

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

Scene VI

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

DAD. Hi Sweetheart!

LIA. Hi Daddy.

DAD. You getting ready for bed?

LIA. Yes.

DAD. You sound tired.

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

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

LIA. 181.

DAD. That’s great, honey.

LIA. Ok. Goodnight Daddy.

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

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

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

Scene VII

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

PANCREAS. What is it?

DAD. Was that the phone?

PANCREAS. I don’t think so.

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

PANCREAS. I didn’t hear anything.

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

PANCREAS. Everything okay?

DAD. I thought I heard the phone.

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

DAD. I know.

PANCREAS. What time is it?

DAD. One-thirty.

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

DAD. Yes.

PANCREAS. Then go back to sleep.

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

Scene VIII

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

Lonesome du Jour

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

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

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

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

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

You’re disappointed? I asked.

She nodded.

You really hoped it would come back positive?

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

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

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

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

The White Deer

One fall evening around dusk we had gathered around the kitchen window to see out into the woods on the northern side of the yard where there was making her way down the trail toward the house a small white deer. There were ten or so other does with her but she was the only white one, and she was all white except for her eyes, nose and hooves, which were pink. As the herd meandered into the yard and the garden, we stood  in wonderment huddled over the sink and staring through the windowglass, careful to not make noise or any sudden movements from fear of startling them.

Lia named the white deer Isabelle and for four years we watched after her, glimpsing her whiteness first through the woods then spotting the others and following their wanderings which took them more often than not to the garden’s edge, where depending on if it was growing season or not, one of us would step outside and shoo them away. Mostly we were simply in awe, ruined tomatoes be damned. The white deer, a mythical harbinger of good things in times of turmoil, had appeared at just such a time and in just such a manner, if one is to believe in these things, as for us a long and tenuous family situation was coming to an end for the better. Though there was no reason to think her arrival had anything to do with the outcome, we welcomed the white deer anyway for the accompanying liberation as much for her rarity. Through the seasons, hunting and rut, while the herd changed in number and member, Isabelle remained, a token of our continued good fortune.

When late last year word spread that she had been struck and killed by a car not far from the woods we debated not telling the children the truth about her, preferring the more palatable excuse, if they asked, that she must have moved on with her family, a large buck and the small spotted fawn she’d been seen in the garden with months earlier. The rumor turned out to be false, however, and when she was sighted once more we were spared having to tell them anything. Calamity and mishap averted, good charms restored.

But it wasn’t, and one month later Lia was diagnosed with diabetes.

Though the diagnosis has done nothing to alter how we feel about Isabelle, hearing someone call her name still draws us to the window, but it does raise two important and relevant questions. One has to do with faith, and the other with what truths we reveal to our children in the face of tragedy.

The second, I’m much more comfortable answering: what we tell our children depends. With Lia and her diabetes, we tell her what she needs to know to treat herself. We talk about carb counting, about insulin and dosing. We talk about the impact of exercise on her blood sugars and about eating and snacking and the importance of monitoring her numbers. We talk about recognizing the symptoms of hypoglycemia and hyperglycemia. We talk about the pump and doctor’s visits and her school and how well she’s managing this complex new thing in our lives. We talk about a cure, but not much. She knows people are working on it, but her thoughts and energies are better spent on the much more immediate future and that is how her mother and I like it. There will come a time for her to think about the more frightening aspects of diabetes but that’s our job for now, to worry, not hers.

For that other, I don’t know. You grow up most of your life feeling invulnerable, then you have a child and that child grows older and becomes with the rest of her family the center of your universe and one day that child falls chronically ill and it feels after that like everything you’ve ever been told about faith is a lie. What you may already have begun to believe is confirmed: we are alone.

I’m not saying that this is the truth, but you can see how one could arrive at the point on two parallel lines of finally accepting that they may never meet. It is the courage and strength we derive for ourselves that’s important. For some that comes from within, others seek it elsewhere. Few might not find it at all. But one thing survivors all seem to have in common is that they all draw on something from somewhere to fortify their intent to prevail against whatever odds have been set against them.

I wish it were as easy as trusting good fortune to the reoccurring appearance of a solid white deer, but it’s not, of course. Chance happens to those who are prepared, not wishful. But that won’t stop me from swinging by the window from time to time to see if Isabelle is out there. If not her then, who knows, maybe the truth lies with the Great Horned Owl, a herald of wisdom and knowledge, who recently set up house in those very same woods. It sure would be nice to think so.

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.

Fortunate 2 Know U

There were many ways our family and friends and other people we knew showed their concern for Lia and our family in the days following her diagnosis. The best one was the visit by John, Jenny and Jessie, who detoured their travel plans to see Lia in the hospital on the morning of Christmas Eve. They came bearing breakfast and gifts like the three gracious wise men. At the time we did not know we’d be spending another night in the hospital, almost two in fact — though Franca and I both suspected it — and knowing through experience with my father, who died in the night on the same day of leaving a hospital, there was no easy remedy for a patient wanting to leave when they thought they were ready, which by this time Lia desperately wanted. So our already depressed moods were made even more pensive as we neither wanted to be there nor knew if we were ready or not for the challenges of treating Lia’s diabetes at home.

But it was Christmastime and if hospitals are generally tragic places to begin with, being there on Christmas Eve would have made it almost heartbreaking were Lia not feeling better. You could see it in her eyes, in her face. The color was back, her eyelids no longer drooped, she could be prompted on occasion to smile. It wasn’t that she was not still severely sick, she was. Her blood sugars were elevated and she was still suffering from the Diabetic Ketoacidosis that had sent us to the doctor in the first place. But we were optimistic, despite our resignation to the reality of another night in hospital.

Such misfortune drew compassion from everyone, but especially of course from the nursing staff who understood better than most, better than patients even, the meaning of loss when being home with family on a holiday wasn’t possible. As it was we did what we could and made the best of the situation by spending the day with Lia.

I left around five that afternoon and drove home. Our older children were having dinner at an aunt’s and the house was empty and quiet. I poured myself a beer and got busy wrapping presents, a private event my wife and I annually observed on Christmas Eve. Tonight I was to do it alone. There was no flirting or playfulness, no sex. No glasses of wine. I rushed through it, slowing only to tie the bows as that was traditionally Franca’s job and I didn’t want to let her down. When John and Krista got home at nine I sat with them for an hour or so before they went off to bed and finished wrapping the gifts. Around midnight I loaded Lia’s stocking and Santa’s gifts into the van and drove back to the hospital. I slipped quietly through the corridors and into her room where Franca lay awake in the bed beside Lia, who was sleeping. I set the gifts in the corner where she could find them the next morning and drove home and fell into bed for a couple of hours before waking John and Krista. The three of us gathered around the tree. Absent was the usual excitement, the thrill of discovery of Santa’s delivery. We picked through our stockings and ate a quick breakfast and hurried on to the hospital, where Lia had already woken to the surprise that Santa had found her. She was happy and eager and needed no prompting to smile that day, we came home.

It is weeks later now that I write this and the emotion and dread of those days in the hospital has slowly evaporated. But of the friends and family who offered their love and support I am reminded daily of their genuine compassion, often through the actions of others as news of Lia’s diagnosis spreads, some of which are neither genuine nor compassionate, but taken in context seemed only designed to make someone else feel better. Such as the email my wife received last week. Sent by the mother of our daughter Krista’s best friend in response to hearing of our situation, it read: So sorry 2 hear about Lia.

At first I was angered by the trivial and insensitive manner in which she addressed her comment. So sorry 2 hear about Lia. As if what she’d come down with was a cold and missed a soccer game. But that’s how this thing comes at you, this diabetes. It so far off the radar that you have to believe there must be something wrong, that it must only be a cold, a virus. How else do you explain it?

And in Lia’s case there’s some precedence. About three years ago I brought her home from school complaining of severe stomach pain. Nothing I did reduced her discomfort so I took her to the doctor. Franca met us there. We were sitting in the waiting room. She walked up and took one look at Lia and asked had she been to the bathroom. Lia looked at me and then at her mother and shook her head. They went down the hall and came back a moment later all happy and smiles.

Everything better, I asked.

Lia grinned sheepishly. I guess I just had to pee

That’s what part of you is waiting to see come about. The moment of the truth, the answer. A short little stroll down the hall, and then all of this will be over.

But it won’t be over and the other part of you that is listening to the facts knows that it won’t be over and so reality awaits. If you have any fortune at all those you keep close to your heart will be waiting there to greet you.

To read other personal stories from people who’ve experienced juvenile diabetes, please follow the link. To donate, please click here.