Come What Come May

Any parent of a child with type 1 diabetes knows the importance of living in the present. To live any other way is to focus too much on those things that lie beyond our control. Better treatments. Soaring costs. A cure. But what about that other member of the family, the sibling?

For Krista, who’s smack dab in the midst of her teen years, awareness of Lia’s diabetes isn’t enough to keep her up nights with worry, or preoccupied with how to pay for health care, or the whereabouts and funding of research. What she observes and retains is much more immediate: frequent finger pricks, food scales and carb counting, painful repetitive procedures that appear, rightly so, to get in the way of the normal, untroubled life every teenager (and everyone else for that matter) most yearn.

So what happens when Krista gets sick, or more precisely when the symptoms of her illness mock those of what Lia experienced just before her diagnosis?

Worry, that’s what.

Worry about what might be, not what is.

“Come what come may,” said Macbeth to himself after meeting the witches, those secretariats of blind ambition, oracles foretelling the future. “Time and the hour runs through the roughest day.”

I thought of this simple yet legendary line recently when Krista experienced one such medical crisis. She’d been complaining of dehydration and of frequent trips to the bathroom and fearing an infection, or worse, had been taken to see the doctor. They tested her urine for a disorder and found nothing unusual, but a trace amount of ketones. She was sent home and we were told to monitor the situation. Nothing was said about diabetes, her blood glucose level was not checked, there was no hasty rush to the ER. But that didn’t matter. Much like the throne to Macbeth by those witches, the idea had been sufficiently sown: What if?

Later that day we did check her blood and when she wasn’t feeling better the day after that we checked it again. Both times we found it normal. So it was not—or is not yet—diabetes, but the whole thing raised the question: yes, precisely, what if?

What if diabetes struck again?

There are two answers of course to that question. There is the parental answer: We know what diabetes is and we know how to treat it. We’ll deal with it. If ever there was a motto for the parent of a child with type 1 it is “Come what come may.” If it happens, it happens. We’ll manage.

Then there is the child’s answer, which is not an answer at all but more questions: How? Why? What now?

To be sure there are answers to these, just as there were answers when we learned of Lia’s diabetes two years ago. But answers take time to arrive and telling a young person the secret to a happy life is learning to endure is like telling an ambitious but dithering brave warrior of a prophecy he would be king. The reality takes some getting used to. But as Shakespeare understood, even the worst of days come to an end.

Unless, of course, you’re Macbeth.

 

 * * * * * *

A Special Announcement

In honor of my wife and daughters and the pursuit of a healthy lifestyle by women everywhere, we are pleased to announce that beginning this week, some excerpts of the best and more memorable posts from our family’s journey of living with diabetes will appear on Lifescript.com, one of the most dedicated and respected women’s health portals on the internet.

Franca and I are honored to have this opportunity to spread awareness of Type 1 Diabetes and share with others the challenges, the small and large victories that parents, caregivers and people with diabetes demonstrate everyday to live life to fullest.

Click here to check out WOE at Lifescript


A Special Request

Hi there —

I’d like to make a special request/ offer to the readers of Without Envy. As you know, I’ve recently published my first novel, called A Lovely, Indecent Departure.

www.stevenleegilbert.com
by Steven Lee Gilbert

It is a story about a young mother who kidnaps her five year old son from his emotionally-abusive father and flees the country to her native Italy. It is, if you know me personally and/or perhaps if I’ve written this blog with enough intimacy that allows you to read between the lines, a story, first and foremost, of love, and second, of a testament to what we as parents are willing to sacrifice for our children. Attributes with which each of you out there now reading this are exceptionally quite familiar.

The book is a culmination of nearly a decade of research and writing, an endeavor of heart and talent and yes, struggle. Writing it brought me much pleasure, but the act of publishing and marketing it has opened my eyes to a part of the process I’d not ever given much thought to. For certain, self-publishing a book is an enormous, individual marketing challenge—okay, so was writing it—but it was something I sought on my own, preferring to bypass traditional publishing methods. As a result, I am caught between sharing this wonderful, exciting news to the world and talking about it so much I come off sounding like a shameless fairground carny.

Step right up! Get your good read right here!
Hey you, wanna really impress her? Try reading a book!

Trust me, that is not my intention (though it would make for an interesting character, a kind of dickensian Gary Busey).

Part of what makes it so difficult is that when I think of who the book’s audience is—unlike a carny, it can’t just be everyone—my answer will probably not surprise you: There’s me, and then there is Franca. Those two are my audience for pretty much everything I write, because there are few things better for you and more satisfying than expressing oneself clearly to oneself (and who better to tell you if your idea of expression is correct, or appropriate, than a spouse). Through expression we learn to know what we think, which brings me to you: Without Envy readers, the community.

Many of you have been with me these past twenty-plus months. You know me. You have listened to me as I’ve shared my gripes, my hopes and my worries. You understand more than most parents what it means to feel out of control and especially of the sacrifices we make everyday to keep our children safe. You get it. So, I’d like to ask for your help and in return give you a token of appreciation.

The novel is currently being distributed through whatever means books are distributed to all sorts of booksellers. Eventually, it is my hope especially that I might walk into my library even and find it. To do that requires it get noticed (this is where that audience thing works against you). Toward that goal, I would like to offer to any of you who are willing one free copy of the book in return for an honest review on Amazon, Goodreads, Shelfari, or wherever else readers congregate. The review doesn’t have to be all positive, just honest. If you’re interested send me an email and we’ll get started with either the paperback copy or a free download from Smashwords.

Writing has always been a huge part of my life. It has felt at times, especially over the last two years, as if it were the only thing keeping me sane. Through it all, your companionship has been invaluable, your comments uplifting. As far as I’m concerned if I saw any of you walking down the runway, I’d give you the book AND the big stuffed animal. I wouldn’t even ask to guess your weight or age.

 

Lending to a Wounded Hand

I’ve been thinking of what to write for this post for some time, going all the way back to last summer when I first began to see for myself the dangers of what I will call over-volunteering. It sounds strange to me even now, all these months later, quantifying the effort I applied to finding a cure for type 1 diabetes like it was some sort of muscle I’d worked to the point of straining. As if I—or anyone else—could do too much to bring an end to it. I can’t. There is nothing I wouldn’t do or give to heal Lia. Period.

But last summer I started to realize something important, something more critical to her care—and my own well-being—than fundraising, research and to a certain extent brotherhood: you must first make time for the present and learn what it means to live with diabetes in the now.

Staying fixed in a tragic moment is hard for any parent, and so very hard for a father who wants only good things for his children. You find yourself always looking ahead for the way out. When the truth is, there is no escaping this.

Our first introduction to the Juvenile Diabetes Research Foundation was at a family retreat we attended one month after Lia’s diagnosis. I can remember quite vividly sitting through the various seminars feeling like I was lost, and I was, like some naive countryman having stumbled upon someone else’s battlefield. I had no idea even what kind of war we were waging. Still later while writing about it, my focus was not on the daily onus of survival but on a clinical trial that afforded me some genetic and vaguely-understood glimpse into the future, a worthwhile effort to be sure, that might help us see if the same thing could happen elsewhere in our family, because even as children we know that monsters can’t hide behind doors that don’t remain closed.

I discovered too there were others like us and it was comforting to know them and to hear their stories and the stories behind the volunteer army that had staged this special event. I was inspired by their mission and especially by their commitment. And so after the retreat I did what anyone might do, I signed up.

One month later I wrote about that lattice work community and how I felt strong and invigorated, compelled by the burden of everything that is good about fatherhood to join the cause and fight to deliver a cure. How could I not? It was my daughter, my Lia who stood to benefit. Just point me, I said, in the right direction.

I was warned at the time that like a cellular organism victory rested not with one individual but on the unified strength of an entire community, and I knew from my own experience that was true of any war. But this was no ordinary war, and the analogy was wrong. Only last summer did I finally start to piece together why.

First, let me say something about a cure. I believe in it. I believe in science and I have faith in the work being done to rid the world of this disease. I support it and will always. I don’t think this way because I have no other choice. I do. Just as Lia will have a choice of her own to make when it’s time. But it is my right as her father and parent to believe that one day there will be a cure for type 1 because I want the best for my daughter and that means living without diabetes.

I believe also in volunteering. Before Lia had diabetes, we worked every summer for the Special Olympics and our time spent there was as rewarding and as special as the name implies. Volunteering, caring for others, caring about others is one of those things that separates us from every other animal on the planet. But we all, myself included, need to aspire to give back as a way of life, not an occasion.

But having diabetes, I now see, is not like any other war, so much so that I’d like never to use that analogy again. This, what we do day in and day out to treat this disease is not a war. War implies two sides and when that person hunkered down on the opposite end of the battlefield is your own body, well, you can see, the comparison just doesn’t fit, and therefore, neither does the role of a volunteer army.

We are, each of us, first individuals and what I had failed to see was what Lia needed most from me was not a hero, not someone larger than life swooping in, giving  their time and their energy to rid her of this awful, invisible thing. What she needed from me was just to be by her side, to help her and hug her and hold her hand, to love and stay close to her here in the present.

She tried to tell me that in many ways. Every time I got dressed up to go to a board meeting or attend some event. I thought it was just her innocence talking or her not liking that daddy was leaving the house. I thought I could do both, be a caretaker and also a knight. Now I believe you cannot. Before you can swing a sword, you have to know how to sharpen it, and that is the point of this:

Learning to care for someone with diabetes takes time, it takes patience and paying close attention. There isn’t the benefit of knowing firsthand what it feels like for your blood sugar to drop, or go high, or your thoughts turn angry by this thing that is such a part of you and at the same time so utterly out of your control. I don’t know what it is like to carry diabetes inside you, other than as a worry, which is why even now I still feel implored to connect this metaphorically to an epic conflict, as if it were Me against Them. It is not. It is Me, and then it is Lia. It is All of Us. Individuals.

Within weeks of that first visit to JDRF, I was mentioned to chair the Walk Committee, then asked to join in another leadership role and was invited to serve on the executive board. By summer, I had become a regular presence in the office, both figuratively and literally. To an outsider, it surely must have looked, as some have mentioned, as if I had drunk from the proverbial Kool aid (an even poorer analogy, if you ask me.)

But then, in the middle of last year I began to see things more clearly and I came to the conclusion that it was a mistake to jump like a general headfirst (and headstrong, I might add) into the foray of finding a cure. I decided it was best to take baby steps, even if that meant backing up, so I could spend whatever amount of time was necessary to learn more about diabetes and what entails taking care of it today, not tomorrow, not for the someday there comes a cure. This moment. Right now.

I do still volunteer with the JDRF, but in a slightly lesser role, and the chapter, I’m encouraged to hear, is working on developing a more effective volunteer program that benefits everyone, not just fundraising. It’s a tricky situation when someone with passion and goodwill comes strolling into your office. You’d be a fool to turn them away. But also I think, and more importantly I believe my chapter thinks, at least in theory, that there is an obligation as well—to borrow from a past U.S. President—to ask not what they can do for you, but what you can do for them, because diabetes is that kind of disease. Where everyone could use a helping hand.

(Closure)

The world lost another human icon not long ago. It was in September of last year and most people, including me, didn’t even hear about it. In fact, I didn’t even know he was still alive–it had been that long since I’d thought about him, over forty years to be precise.

Wait, that’s not entirely true. I did speak of him back in early March when I was prompted by a class of seventh graders to share an embarrassing moment growing up. But often when we speak of the past we do so without regard for the present. The most precious of events are frozen in time, locked in a kind of memory vault. Preserved. Guarded. Untouchable. To hold them any other way only reminds us that time is always in motion, bringing us each one day closer to our own (unheralded) mortality. But I’m getting ahead of myself.

I met John Siemer only once. It was in the late 1960s, or early 70s, I was seven or eight, perhaps…I hardly even remember anything of the occasion other than the few seconds I’m about to share. But I knew him well nonetheless. As Engineer John of the Cartoon Express, WKJG Channel 33 of Fort Wayne, Indiana, he’d come into our home five days a week via a grainy color television set and my younger sister and I were held spellbound.

TV was different back then. It was fresh and clean and safe, mostly naive in its portrayal of family values (at least in hindsight. Today’s shows seems to swing the other way) and what Engineer John did for the local market–for kids anyway–was deliver that goodness first thing in the morning. But even more  special than watching the show from the living room floor was being in the studio in person, something my parents surprised my sister and I with shortly before the show ended.

There is not much that remember of that day–that’s the other thing about memories, they’re often just snippets–but I do remember during the show Engineer John came walking over in his overalls, train engineer cap and red kerchief and began asking each one of the kids in the audience what we wanted to be when we grew up. To my elementary-age self this was not just a question, but something way more monumental. A question so gravely important, it would set whatever cosmic, unnameable things into motion, that my word would then cast to stone, making them permanent, unalterable. My answer would define me.

I wrung my hands together and began to think. Fortunately, I was seated near the back row next to my sister, so I had time to prepare. But Engineer John was moving  through the audience very quickly, kids rattling off their answer into the microphone with little or no deliberation. Ha. Did they not know that the wrong word spoken at this moment would be catastrophic? I studied my lap and tried to focus, but nothing would come to mind. I was drawing a complete blank. I couldn’t think of one job, much less MY one job. Astronaut tried to sneak it’s way in but I stopped it as it seemed like that was what every boy was saying on account of the recent moon landing. I started to panic.

When Engineer John finally came to me, I looked into his broad smiling face and I looked at the mic. I  fumbled for a word, any word. Fireman, I said.

Fireman? What was I thinking? My best friend’s dad was a fireman, but other than the fact that he drove a purple El Camino I knew nothing about him. I felt relieved, but not in a good way. What had I just done?

I didn’t have time to reflect on the possible consequences as in the very next moment something even worse was about to happen, something only a little boy and older brother would find embarrassing. Engineer John had moved on and was addressing my sister. And what would you like to be when you grow up? he asked.

She looked at him, all fiery-red hair and freckles. Tarzan, she answered.

Everyone laughed and they looked up the bleachers at us and I felt the earth spinning, it was the future realigning itself to this sudden and drastic change.

Tarzan? John Siemer repeated.

My sister nodded, That’s right.

Well, all right, he said and moved on and I did what any self-respecting older brother could do. I hung my head.

* * *

For forty-some years that was all there was to this story. Just a single moment of innocence and simultaneous embarrassment. This week there was written a second chapter.

We were having friends over for Sunday lunch, after an afternoon of biking. I’ve mentioned them before on this blog. Their daughter has type 1 and the mother and I became acquainted through Without Envy before they even moved here. We all became close friends once they arrived. Seated around the table we were talking about Fort Wayne, where the father, like me, had once lived, and for some reason I mentioned the Engineer John show.

That’s my brother-in-law’s father, he said.

Wait? What?

Engineer John, he was my brother-in-law’s dad. He died recently.

I looked at him and for a moment I felt like a kid again, sitting with royalty (don’t let that go to your head, A).

I guess I was wrong. Memories do sometimes evolve. And, thankfully, so too do  little boys’ (and girls’) wishes.

RIP, Engineer John (Siemer).