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.

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.

The Beginnings of a Long-term, Long-distance Relationship

It is difficult for me to write about the research being done by the Juvenile Diabetes Research Foundation and others like them. This is partly because of the science involved and the fact that I have not yet fully educated myself on the terms and studies being done to cure and treat diabetes. To pretend to know what I mean when I say the community is working hard to use anti-CD3 therapies to preserve the function of beta cell insulin production in newly diagnosed cases would be a disservice to myself as a writer and to you as a reader. I don’t have any idea what it means or what it involves. Writing about research is difficult also because when I write I try my best to look at the words I use as if it is the first time I am seeing them. That way, the emotion in them is fresh and visible, and hopefully it is that way too for you when you read them.

Diabetes, however, is a disease with a history, and as such is no easy thing to write about. With history comes eyewitness accounts, expectations, and above all else, context. All of these are things that can derail good writing, but context especially can ruin the results. For instance, within the same year that insulin was discovered, explorers uncovered King Tut’s tomb in Egypt. Since then, science has revealed that the young Egyptian pharaoh died as a result of a leg injury and a bout of malaria, not of murder as was long suspected. The discovery of insulin, therefore, taken in the context of this shared history with a mummified king seems to have fallen far short of its potential. How is it researchers can unmask the cause of death of a three thousand year old boy-king, and not unlock the secrets that will rid the world of diabetes?

I don’t know, but fortunately there are others stepping up to explain it. One of those is John Brady, a chairperson and member of the international board of JDRF. I recently had the opportunity to meet and listen to John speak at a research update hosted by my local chapter.

The event was sparsely attended, a result perhaps of a plethora of same information easily pulled from the web and not from a lack of interest in the subject matter. I suspect many are like me, armed with only inspiration, and not proven scientific knowledge. Certainly, with a population of nearly one million in the region in which I live there is no shortage of diabetes patients or caregivers. Nonetheless, if the dozen of others like me in attendance of the one hour debrief is indicative of the other two sessions there is, it might suggest, a dearth of interest in face-to-face communication. Sadly, that’s to be expected: where the internet gains in information sharing it loses in direct personal involvement. Let’s hope that the spirit for receiving such news has not dampened amongst its strongest supporters and those who would benefit the most and that the slight turnout was a matter of timing and inconvenience.

That said, I found the update to be both reassuring and a tad bit troubling. First, the work being done is astonishing. I can only hope that it translates into something useful and concrete in terms of a cure for my daughter’s diabetes. But listening to Mr. Brady speak I could see how someone who is familiar with the history of the disease and has been around diabetes for a long while could grow weary of all the pledges. It’s like telling your kid you’ll play catch with them but never getting past the front door. A promise is not the same thing as action, and eventually, the kid will quit asking.

Mr. Brady prefaced his discussion with the comment that JDRF changed its strategy in 2004 and moved from a position of passive funding to one of active management. This was necessary, he claimed, in accelerating the discovery, development and delivery of a cure. The preceding environment was apparent. Throughout his talk, he referenced still-inconclusive studies that had been decades in the making. Though exceptional in both terms of treatment and cure, such lengthy trials with no immediate plans to bring to market don’t sound exactly promising to the father of a newly diagnosed child. They were needed available yesterday.

But as even as the scientists working on an ancient murder case discovered: yesterday’s not everything it seems. It’s tomorrow that’s often the torch bearer of better and brighter news.

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.

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?

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.