In the summer writing classes I teach at a local university, I talk to the students of there being two epiphanies in storytelling. There is the one most people think of when you ask, which comes at the climax of the story when the characters must decide how to deal with whatever force is working against them. This is the point where we, the audience, are most riveted, as the suspense surrounding the character’s fate is at its most intense.

The second epiphany, which the author James Joyce pointed out and actually comes much earlier in the story, is the moment in which, through sensual detail, the deepest yearning of the main character becomes apparent. It is, to relate it in non-storybook terms, that moment when we suddenly realize that things aren’t exactly as they appeared and we’re brought to a change of heart.

It comes not without some effort, though. You mull and turn it over, you allude to it, catch a glimpse of it at the edge of your mind’s eye. Then you see it and the object falls into focus, and with it comes a deeper understanding. Of work, of one another. Of happiness. How we live and who we are. A catalogue, were it written, according to Joyce, of our most delicate and evanescent moments.

Diabetes can be like that, I think. The outlines are a little bit fuzzy, the colors washed-out, too many of the puzzle pieces are missing to form a wholly complete, perfect picture. The aha! moments, when they arrive, help us mostly to be better caregivers, but sometimes they come and you realize just how alone you are; but even those times are good, too, as you know beyond a shadow of doubt that doing better is up to you.

Because writers are meant to record, I offer here just a short list of D-epiphanies I’ve experienced in terms of treating Lia’s diabetes in this first year and a half. Some you may recognize from previous posts. Feel free to add your own in the comments.

• Doctors are there to keep patients alive. Anything more than that’s up to you.
• Passion is great. But don’t confuse passion with need. Before turning your attention to curing the disease, spend time learning to treat it.
• Shots hurt. That’s why they’re called shots, dummy. It’s stupid to think that anyone can ever get used to them.
• Most adults, no matter how many times you tell them a thing, hear what they want to hear.
• Food can be our enemy.
• Sometimes the road less envied produces the more spectacular journey.
• Community. Community. Community.
• How you do everything is how you do anything.
• It is the experience of our hands that we learn from.
• There is no bad mood that putting on your pajamas and taking a walk can’t fix.

At the time, long ago, when it took place, I was twenty-nine years old, a jobless, war veteran and recently divorced, and the only thing certain of my immediate future was the fact that I was in store for a much needed change, starting with my address. As with any such endeavor there were challenges — as you can see if you followed the link — from the very moment the plane touched down, and what I learned about life in the months and years that followed this particular decision was that, unlike the reunion that takes place at the end of the “Digger” story, things never do quite go back to the way they were. There are histories to contend with, attitudes, beliefs, memories. Even were we able to successfully contend with those, also mudding the progress — or regress, as it were — is the fresh, undeniable reality of today, right now, this one very moment.

This summer brought a reminder of this, in many differing ways.

To begin, there was Diabetes Camp, a first for our family. The weeklong, must-do-ritual was for us all terrifying, exhilarating, liberating, nerve-wracking and totally life-changing. In a moment, I will tell you what it meant to Franca and me, but putting it into words for Lia is not only difficult but likely impossible for me, so I’ll just have to rely on a photo.

With Krista (and the dog, too!) visiting her grandmother that same week, the time Franca and I spent to ourselves was not only all of those things I mentioned above, but it was rejuvenating, too, to be alone, just the two of us, without kids, without errands, without TV and toys, without arranging play dates, sleepovers and otherwise attending to the rewarding, endless chores of parenting. And, yes, it was, for us at least, a break from diabetes.

I feel okay in saying that … taking a break from diabetes, though I know that Lia did not and will not ever, without a cure, enjoy the same freedom. I think were she to hear me say that, she might misconstrue my comment as, thankful for the break from her. But I trust when she is older, she will understand. Raising a child is demanding. Nothing in nature can duplicate the absolute pleasure or worry that being a parent employs. It is often what comes to define us, day in and day out, which is why our time alone together was so special to Franca and me. It helped us remember and relive who it was we both were before, before kids and before diabetes.

The week ended and we all came back together and picked up where we’d left off. Only we didn’t. Something had changed. Not everything, but some things. Lia, of course, was more independent, reaching new, unthinkable depths in terms of strength and confidence from living and breathing the camp battle cry, Positive Mental Attitude, with so many others just like her. Her spirit and courage are truly inspiring. Krista, too, had returned from grandma’s showing an air of young adulthood that wasn’t so much surprising as it was just delightful to see. With freshman year upon her, she is, I believe, exactly the person her mother and I always raised her to be. Happy. Smart. Trustworthy.

I, too, had changed, in a way I could not have predicted. For eighteen months, I had worked, wrote and read to learn all I could about diabetes and how best to take care of our daughter. With her gone to camp and the daily necessity temporarily lifted, I — and Franca, too — reveled in the way things used to be. So much so that when the vacation ended, I was left for a moment with a wishful longing that was both pointless and questionable.

How much had I let diabetes consume my time? Was I practicing what I was preaching: life without envy despite diabetes? Had I become a victim caretaker to this disease? After all, I had read about it, blogged about it, started a memoir about our first year living with it. I had researched the origins, the treatment, the science in search of a cure; constructed elaborate spreadsheets to help track Lia’s blood sugars; grown meticulous, alongside my wife, in keeping a log. We had volunteered our time, given money, advocated to Congress for change.

In doing all of this had I so fallen out of touch with who I was that five days alone with my wife felt like a once-in-a-lifetime, dream come true?

And what of my own writing, of the novels I had envisioned having published by now? And just as important, what message was my putting that promise on hold sending Lia and Krista? That pursuit of your passion is good until some reason to not comes along?

It shouldn’t be that way, but unfortunately that is, many would agree, the challenge to parenting, holding on to our individuality. It is harder still when the reality is that as parents of children with diabetes we are in a place we never for a moment imagined we’d be. Regardless the age of our children when  diagnosed, we do remember what life was like before diabetes. That is in all honesty a difficult thing to forget. But just as true is the fact that it’s here and setting one’s heart otherwise is a fool’s whimsical errand.

I don’t know what the right mix is, but it can’t be all or nothing. There is out there some happy middle ground, and it’s important to me that I find it. Maybe the key, now that I think about it, is what Digger so innocently demonstrated: There are some things we can control in this world and there are some things we can’t. In the end it’s not the who, what, where or why that defines us, but our actions and the love we have for one another, no matter the situation. Those are the same, or they should be. Perhaps it is our human nature to forget that. Thankfully, there are dogs, who remind us sometimes that all it takes is shrugging it off and climbing into a kind lap.

There is more I could say about our summer… the collapse of the garden and other pursuits of simple living, our consideration for finding a new endocrinologist, but I will save those for another day as I look to broaden the scope of discovering what exactly Life Without Envy means to me. For sure, it will be an interesting story.

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

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

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

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

As for the dog?

Commitment. Loyalty. Obedience.

Two out of three isn’t bad.

For instance, I know how much time caring for a child with diabetes requires of a parent. The planning, the prepping, the management. We are fortunate in this last year I was able to dedicate a good part of the day learning all I could about diabetes and using that information to help us better conduct Lia’s care. The challenge of doing this alone must simply be immense. I can only imagine how much further along we are because there were two of us and at the time of her diagnosis one of us was working from home where the opportunity to self-educate is much greater.

But beyond the huge benefit to my being at home, I was not just sitting there waiting for something to fall from the sky that would occupy my time, worry and attention like nothing I have ever known. I was there to write books.

Writing has been a passion of mine for nearly as long as I can remember. When I first started out I would devour books on writing and later read with painstaking detail the biographies of my favorite authors hoping to find the secrets to their storytelling. Of course, there were none. Hard work and dedication, those are the secrets. But I learned that sometimes to get some place you really want to be, it helps to picture yourself there first. Such was my thinking when one day about six years ago, I came home from a day at the office and Franca asked if I knew anything of the Colombian writer, Gabriel Garcia Marquez. I didn’t and so she told me of how he had quit his job while on vacation, then he and his wife sold off many of their belongings in order to eke out a living while he focused solely on writing. What I had when she finished wasn’t a sudden epiphany but one that arrived over the next couple of days: For the years and years of my own hard work and dedication to pay off I would need to take some risk. So we adjusted our plans and set new priorities and eighteen months later I turned in my rung on the corporate ladder for a comfy writer’s chair and began the long, arduous, but enjoyable journey of channeling my passion for writing into paying work.

I could not have asked for anything better. Franca was teaching, the kids were in school, we had set aside savings to offset my loss of income. Finally, for the first time in my life I could just be a writer; and I did, scratching out two promising, albeit yet-unpublished novels, and in the process digging deeper into the crux of who I am that makes me a writer. It was the life I’d always wanted.

What happened next is no surprise. It is what this blog is all about, lives harnessed in mid-step, plans altered. When I think to four years ago and of my departure from the financial security of my job, I am reminded of the many people close to me who applauded my action, assigning it credits like courage and commitment and while I’ve never thought of it as that, more just a stubborn tenacity and a wife who generously allowed me to entertain it, now after what we’ve been through this past year with my daughter, I can tell them what true courage looks like.

And I can tell them, too, how difficult it is to live without making a shed load of money and treating this outrageous disease. It’s beyond hard, maybe impossible. I don’t know yet. Maybe there’s a way to do both and I just haven’t learned enough yet; and wouldn’t that be a wonderful lesson. But the burden of cost is one of my greatest fears, now and especially as Lia grows older. So much so that I’m torn between suspending this dream and focusing now on a new dream: doing all that I can to ensure that one day ten, twenty, thirty years from now when Lia is sitting in some office somewhere dreaming of some other life for herself and worried about the risk, she won’t be bound in her decision by the cost of treating diabetes.

It was wrong to be driven by emotion though; even when it was your own child and your own family at risk. There was nothing to guide us then other than what we knew and what had been made perfectly clear before we had even left the hospital to come home was that controlling the risks of type 1 diabetes rested soundly on the shoulders of the patient and their caregivers. There were some people who thought that because we’d been made aware of Lia’s diabetes and the symptoms of it had been treated the danger for her was over. Others mistook what she had for type 2 and their attitude leaned casually more toward pity. The most well-meaning but less informed of them all would question aloud were things getting better, and they were of course getting better, imminently speaking in terms of health and emotion. But better and cured are no more related than a book is to ignorance. What it really took, other than knowledge, was self-control and a willingness to reshape our reality to fit the new routines on which Lia’s livelihood now depended.

You could look into your own heart and listen to what it was saying to you only after her blood sugar had been taken and the insulin administered because it was then you felt the safest; you’d done what you needed to take care of her and so this was the best time to surrender to it with little worry of there arising any immediate problems. But you put yourself in jeopardy if you allowed yourself to stay in that one place too long. We were new to the whole operation and things could go wrong, sometimes quickly, so it was important not to forget that the requirement of any situation, good or bad, is not what you find in your hearts but how what is there turns to action.

And so it has been with brevity (and more than a little unrest) that I have over the past eleven months listened to my heart and considered the origin of Lia’s diabetes with no real hope of learning what it is and certainly without having any expectation of doing anything about it. What I uncovered was not a surprise: a family history (myself included) of an auto-immune disorder that has been linked to type 1 diabetes. This along with irrefutable proof that one other genetic mis-coding of mine — congenital anosmia, or the inability since birth to perceive smell — found its way into one of my other children suggests that nothing good would come of digging into this any further.

Or would it? Is there not danger too in following the path to discovery only to turn away in shame? Can anyone tell which grain of sand will cause the sand pile to collapse and which will not? Even rescuers learn something from a mudslide, if only to confirm firsthand that shit does in fact roll down hill.

To relate it in terms of our fear and the bear and the question so often posed, even by ourselves: The worry hasn’t diminished because things have gotten better, things have gotten better because of the worry.

That is the trouble with looking into the heart. Sometimes it works in your favor, sometimes it doesn’t. On some days it felt like nothing else mattered, but mostly there was so much more to think about.

There are two things that stand out about this. One, it is very difficult when you are trying to lead a normal (or, I don’t know, maybe it’s abnormal) life without envy to put yourself in a position of public exposure. Happiness, the great philosopher Socrates suggested, was contingent upon, among other things, living with a tolerance of being overlooked. I believe that is true and were it me, not Lia, with diabetes, I could, I think, strive for that kind of low profile life, however right or wrong it might be, if only to spare those closest to me my fear and frustration. But it is not me, it is my daughter, and her keeping that or any other source of anguish to herself is not anything I would ever wish for Lia or any of my children.

And there, as they say, is the rub. Where do you draw the line between nurturing and preparing your child for the realities of adulthood by setting a good example? Is life without envy even possible if every week you sit down and describe, vent, seek, share or make permanent all the many ways diabetes is a part of it? There is value to that, of course. I would not have done it this long were there not. But it’s important too, perhaps more than anything else, that we accept those things out of our control (diabetes) and replace the thing we most desire (a cure) with only things we are certain of obtaining (our dignity). Is that not the true measure of without envy?

The answer is obvious, we are after all human and the human condition is one of enduring acceptance: some things are up to us and some things are not up to us. It does not take advocacy or writing or championing a cause to appreciate that, but it might sometimes make it harder.

Over the last couple of weeks, through no conscious effort on my own, the kids and Franca were on vacation and time just got away from me, I welcomed a break from writing for Without Envy. I have not taken that long of a hiatus since Lia was diagnosed last December and while I don’t write or post every day, the purpose — raising a child with type 1 diabetes to live life to the fullest — is something I think about every day. During this time though I tried living as Socrates might, quietly, stoically, without metaphors, stories, or mindful stretches for deeper meaning. Those things I reserved for my fiction.

Mostly, I thought, it went well. We worked some, played some and spent time with friends and family. The only mention of Without Envy was when Lia suggested it to someone else, which surprised me as I hadn’t been aware that she was so tuned in to it, but she was, more than I even then gave her credit. Of her diabetes, we were dealing with it straightforwardly through science, smarts and intuition, not wordy contemplation.

Then, near the end of it, we sat down one evening at the kitchen table and realized we hadn’t changed Lia’s infusion set as we’d planned. Because she was out of school, her blood sugar numbers had been running high and this particular hour of the day was no different. It was pasta night and the water was already boiling. We wanted to get her levels down sooner than later, so we talked about giving her a shot instead of waiting the five or ten minutes it would take one of us to change her site and dose her. It had been since June she’d had an injection, but she’d taken hundreds of shots. It was nothing new. She’d been giving them to herself for months without flinching. But at that moment the thought for her was just too much to bear and Lia broke into tears.

What is it? we asked and when she didn’t answer right away, we backed off: All right, we said, we’re sorry. We’ll go ahead and change out the pump.

It’s not that, Lia answered through sobs.

What then?

It’s everything, she cried. It’s all of it.

******

So we aren’t, it turns out, any of us, quite ready to accept that this is just simply the way things are now. We have an obligation to Lia and to all children with or without chronic illness to be their voices for them. To raise the call for help, to bring attention, to raise money, to demand that someone listen. Through our example, Lia may one day discover her own voice and will say on her own to the world: I hear you. I am here. I want to help.

Which brings me to the second point of all this and it comes from another philosopher, Marcus Aurelius, who said that nothing is worth doing pointlessly.

I’ll say that again, nothing is worth doing pointlessly.

Advocacy. Fundraising. Research.

Whatever it is, make it count.

So last week we took full advantage of a four day test run on the iPro Continuous Glucose reader from Medtronic. This is a small device, shaped like a horseshoe crab but much smaller, about two inches in length, that attaches to the skin and continually captures blood sugar readings, while the person with diabetes goes about their normal routine. At the end of the test period, the CGM is removed and the data downloaded to a computer, where it is analyzed and compared against other collected information such as exercise, food and insulin intake, so that patterns of glucose fluctuations can be marked and adjustments made to the diabetes care plan.

Though we don’t have the data yet and cannot attest to its usefulness, the alternative testing to CGMS involves skipping meals and/or testing each hour for four to five hours, making bolus or basal adjustments, and retesting. Not something Lia or anyone else in the house was too excited to undertake. So at our last quarterly checkup we asked about the CGMS. The staff supported it and a month later she was outfitted (the tape was the worse part of it; see a few poorly shot photos here).

Outside of the obvious interest in learning more about how Lia’s blood sugars behave throughout the day, is how we all sleep at night, or don’t as the case may be. That last comment will ring very familiar with some, but to others I should explain. To do that I’ll need to backtrack.

I mentioned before our eagerness to learn all that we can about Lia’s diabetes. That’s true in every aspect of her care but one: Nighttime lows, which makes little sense when you consider that during the waking part of the day someone is always with her. Should we not be more concerned of those times when someone is not?

But other than arming ourselves with an understanding of the likely causes, nighttime hypoglycemia remains a weak link in our armor against diabetes. I don’t know why that is. It may have to do with fear (here’s an excellent  post about fear); or it could be that ignorance is truly bliss and to be any wiser is folly. After all, isn’t our world affected enough with the knowledge that lows can and do happen, anytime day or night, and the consequences can be fatal? Is that not all the call that is needed to get one of us up once or twice after dark to check Lia’s blood sugar levels? Would any more general knowledge — frequencies of occurrence, tales of courage or loss, the likelihood that Lia would wake on her own if she happens to go low, or even a computer-generated chart of her nighttime averages — give us the prudence to sleep straight through?

It is probably not information that would be wasted. It would be rare if that were the case. The treatment of diabetes is a lot like fighting a war: to avert disaster, know your enemy and know yourself. But is a four day clinical test substantial enough to put to rest any worry?

At a data-collected glance, the most challenge we have with her blood glucose levels are just before she goes to bed. Most of her meter readings — seventy-five percent last week, including those taken at two a.m. — are in range. There was only one case of hypoglycemia and it was minor and could be easily explained (incorrect bolus at breakfast time). She wakes most mornings within a few points of her target.

So maybe our worry is unwarranted. Maybe we’re losing sleep over nothing. Our bodies and sometimes our minds scream out: Yes, yes, you are. But our hearts cry something other.

The security of knowing first-hand, of really knowing that she is safe and sound is a thing no parent can truly relinquish, not to stories or knowledge or detailed computerized data.

Fear sometimes is impossible to let go, regardless how much you know.

We returned to the lake over the Fourth of July weekend to share in a longer visit with our friends from Connecticut and though none of us noodled or grabbled or otherwise did anything risk-worthy of a video, we did come across two young men hand-fishing for catfish along the shoreline. My good friend, Mike, and I were standing on his dock fishing when they asked did we mind if they noodled past.

At the time I had no idea what they were even talking about and went on fishing, but watched after the two boys with interest as they went about probing beneath the surface with their hands and a stick searching for probable nests. The way they felt unseen before them reminded me of searching the nightstand for my glasses in the dark, minus of course the caution (read: fear) of being latched on to by something fierce and toothy. I found also a poetic semblance in their ambitious blind hunt to the treatment of Lia’s diabetes.

Such cause for waxing lyrically may have been due to my state of mind, which after the unceremonious case of forgetting the dog, was convinced that the rest of the summer would be going much in the way of her blood sugars: A plethora of mind-numbing highs, mixed with a few startling lows, some brief, unpredictable moments of rest and contentment. For both Franca and I it had begun to feel as if much of our days and nights would be spent on the periphery of living, bound down by the sole occupation of chasing phantoms. It was a sentiment we felt sure would be backed up with scientific proof during Lia’s next endocrinologist visit, which occurred the week following our lake trip.

Fortunately our fears, like the worry of those catfish hunters who sometimes poke something they wished they had not, were not realized. The two boys got their fish, a thirty-five pound channel cat, lurking beneath a boat ramp a few houses down from our friend’s. And despite the struggles we’ve had with adapting to pump therapy, Lia’s A1c came down to 7.8.

Our relief, of course, was immense, as was that of those two fishermen when the great water cat came clean of its guarded obscurity with no injury to either of them. And after the elation settled and those wonders we’d brought to the surface and spoke of and then turned loose and after the doorway in which we’d come to know them had gently closed and we were left standing alone untroubled by the effort of our accomplishment, at peace even perhaps, we thanked ourselves for the warriors in all of us who never stop searching, probing, and reaching into the next hole.

It is the experience of our hands that we learn from, which fingers to prick, which dark holes to avoid. We are being taught to take it one day at a time, one shoreline after another, celebrating the rewards of everyone’s hard work and  mulling over the things that went wrong. But such discovery has a hard-edged strangeness about it, an awareness that leaves us weary. Yes, with it comes empowerment, but there is always the troubling forethought of what might linger in the unknown. For tomorrow is another day and fear too can be motivating. Parents of children with chronic sickness know this maybe better than most. As Franca put it to me as we were driving away from the doctor’s office with our good news: Every time I leave there, I can’t help but feel like crying.

What is possible, almost always, is for both parent and child to accept the situation for what it is and deal with it as best you can. This is important for several reasons but mostly because it is the reality and no good comes of hiding from what is real. Always in the end the truth finds you. Once you do this and are successful enough at it you can find little ways to defy the life-and-death seriousness of the circumstances and make good on the promise to live life to the fullest.

This last week we met with the reps of both Medtronic and Animas to decide which pump best suited Lia’s purposes. We had attended a class at our Endo’s office to hear spiels from the three top suppliers and had settled on these two, but were finding it a difficult decision as there were characteristics of both that we liked. So we invited them each out to the house on separate days to sit with Lia and talk about their pumps. Over the last few months we had made ourselves knowledgeable about pumping through books; and the internet and online diabetes community had provided us with a wealth of information and first-person experience. But nothing, we felt, could replace one-on-one, live conversation. In this way, we could relate our own experiences with food and insulin and the effect both have on Lia’s blood sugar and use these as our foundation from which we might sort through the gimmicky talking points and uncover useful information that would truly help guide us in making our decision.

Our efforts were not lost on Lia, as many of the things we do or say are not. During one of the sessions I looked over at where she was sitting in the small chair she had pulled up for the conference and I noticed she was holding a clipboard. She was making notes on it as the rep talked to us about her pump and afterwards, I asked her what she had written down. She handed me a single sheet of paper with the title: Cool things about the Animas scribbled at the top, and this, in her own words, is what followed:

1. It allows me to sleep in.
2. It lets me cosumize <customize> my dose.
3. Let’s me manage things
4. You can disconect for an hour and be flat.
5. Have an infushun set.
6. It has safety
7. You can redial it.
8. I can get a monitor from a long way away.
9. Your water proof.
10. Go to 0.025 units.
11. It can tell you to check for keytones.
12. Back up pumps.

Lia has never asked why she has diabetes. She has on only one occasion questioned what caused it and when given the answer equivalent of Who Knows, she walked away fine with that. She’s that kind of kid. A realist. A survivor. Don’t tell her it won’t hurt if it will, she will see right through that smoke screen and if she doesn’t she will the next time. Her own experiences have taught her that too.

A few weeks ago had I witnessed her writing this kind of list about a tiny little box designed solely to help keep her body functioning the way nature intended I would’ve mourned and written about her lost freedom and innocence. For sure there will be moments for that again, brief but intense outbursts of grief, frustration, even anger at her diabetes, at science and the medical community that has failed to find a cure, at the inability to uncover what caused it, and for how Lia has had to grow up much faster than anyone would want for a child. But it is this kind of thinking that it takes to move past the sadness and shock and get on with living. If a little blue box will help with that, then all the better. Just as long as it makes you waterproof.

A few days ago it was just before one in the morning when she woke us. She was standing at the bedroom door, a small dark shape backlit by the nightlight in the hall. She was crying, sputtering through the sobs about a bloody nose. You could just make out in the darkness the little figure with both hands cupped to her face. We were both awake immediately. Franca walked her to the bathroom and in the light we checked her over.

The tiny bowl she’d made with the palms of her hands were pooled with blood, so I ran them beneath the faucet while Franca applied a wad of tissue to her nose to stem the bleeding. After a few seconds, she left to get a damp washcloth, then retrieve the glucose meter from another room, and I sat Lia down on the floor and leaned her back against the tub. The bleeding had stopped and she had stopped crying and the panic in her too had subsided. She closed her eyes and looked ready to fall back asleep. I washed from her face the smears of blood and asked how was she feeling. She knew what I meant and said fine. Franca came back and pierced her toe and checked her blood sugar. And she was.

We put her in our bed and laid next to her. The worry was over but not the response as we both found it difficult to return to the sleep we’d been lost in twenty minutes prior. Was the nose bleed somehow related to her diabetes, a warning sign that we should not take lightly, or was it dryness caused by high pollen? What if the meter was wrong? What if the reading was trending down and if we didn’t do something about it now she’d suffer a low? How much longer should we wait until we tested it again?

Honestly though, it wasn’t even these questions that kept me awake. These were things we asked ourselves everyday, all day long. We work very hard to anticipate and address these questions and are learning ourselves out of necessity to work just as hard on getting rest. You run yourself ragged if you don’t. What kept me awake was the fear that the fright and the hurt and the worry of something going wrong wasn’t ever going to go away. It is something that is with us for good, unlike a newborn which grows and flourishes, the same as a parent’s confidence. What kept me awake was the cruddy and erroneous suggestion that something as commonplace as an allergy-induced bloody nose might forever be connected in Lia’s precious mind to her diabetes, simply because we had tested her blood. The same as we do when she eats, or plays sports, or stays over at a friend’s house, or feels miserable or looks tired or generally acts something other than her usual illuminating self. What kept me awake was the wonder of just where does it all fucking end?

I know the rejoinder, it doesn’t. We’re not strangers to this anymore. I get it, this is the way that it is. But hold in the palm of your own hand this little girl’s life and tell me that that is okay. Tell me that we can control it. Tell me that it gets better. Even peace of mind can prove sinister sometimes in its motives. Lia is catching on to this fact and to some extent that is good, she needs to be burdened with the knowledge that to stay healthy for every decision she makes there is a consequence. But this awareness comes at a cost that as a parent I am saddened to see her pay.

Take for instance, this valuable diabetic lesson: This past weekend she was at a friend’s birthday party. Like before, I had her call and tell me what she was having to eat. She said pizza and ice cream cake, and I dosed her for both. Later, when I picked her up I asked how she liked the cake. She said she didn’t. I said what did you do about it then. She said I ate it. When I asked her why she said because I had to.