The Fixer

I am having a problem with our dog. You might remember Jake. I wrote about forgetting him as we left from a holiday weekend visit with some friends at their lake house. Jake is a pretty mellow dog. He follows me around the house, lays under the desk while I write, and other than shedding, sloppy drink habits, and an audible and extremely aggravating nighttime routine of self-cleaning, he’s fairly easy to accept as far as most family pets go. But lately he hasn’t been listening.

Now, before you say anything, I know this is probably my fault. Like most everything in and about this house, he doesn’t get enough attention. I know that. We worked with him a good deal when we first brought him home from the pound, struggled hard to get down to the bare bones of what makes a good dog tick, and for a while he did really well, and us, too, with his training. With some basic behavioral understanding and simple commands, we could get him to sit and lay down and come to a whistle. Some days he did better than others. Some habits we simply couldn’t get him to break, such as chasing after cars if one happened to invade his immediate space. Other things, for whatever reason, like learning to shake, were difficult to grasp and took a great amount of effort on both of our parts. With practice, however, we managed and eventually even the hard things became simple, too. But something in the last year has changed. I just noticed it in the last few weeks, but I think it’s been building up over time, this will to not do what we say.

In the likelihood that some animal expert out there will suggest it, I’ll be the first to say, I get what it is that I ask for. And all that I ask for from Jake is the same that I’d ask of any addition to our family: play nice. In return, I don’t make of him ridiculous requests, or ask that he do something that’s impossible, as in, say, talk like a pirate or go get his own damn breakfast. I give him his freedom to act like a dog and he gives us his love and companionship. It’s a shared responsibility, which is why yesterday morning when I asked him to come and he looked at me and saw what I wanted but just stood there staring back at me, until I told him to come once more, in a voice more suited for commanding authority, and he turned and ran away — and then stayed gone for hours — that I simply could not believe it.

How could this be? We had worked so hard. We had an understanding. We had accepted him and his imperfections and though our arrangement with him was not ideal, what with the lack of time and attention, there was never a shortage of need or respect.

They say a dog’s motivation is tied closely to its social order, that is, how goes the pack goes the animal. If that’s true, and I believe that it is, then we do have ourselves to blame. But it’s not the question of blame I am searching to fill. I just want what’s wrong to be fixed. I want him to listen. I want what we have in our lives to play nice and if not, at least have a good reason.

Perhaps if we could trade places, Jake would see that I only want what’s good for him, too. The world is a dangerous, sometimes godforsaken place. It is full of  unwelcome things that want to invade our space. It’s important we all stick together. And on my end, I think maybe it’s time to dust off those books and training manuals, because in them, I’m sure, there is something I missed and like anything else in this life, if you give a thing an inch it’s bound to take a mile.

 

Anything They Want to Be

A couple of years ago, I got into an email argument with one of my kids’ science teachers. Beyond the fact that I was on a two year low of feeling particularly let down by the conscience and caliber of science teachers at the school, who seemed incapable of anything other than sucking the fun out of the subject, I found the opinions and facts she presented in this particular case just too contradictory and one-sided, as, I’m sure, she found mine. In other words, scientific.

That’s because science, as with any empirical endeavor, such as teaching or parenting, where the goal is to promote an exchange of ideas or influence specific behavior, comes almost always with two sides to every finding. Often, it is the very nature of disagreement or pursuit of an alternative that fuels the creativity and passion for discovery. A healthy difference of opinion is a positive sign that progress is being made.

However, there are some places where the facts are just too substantial, the trends too obvious, the results simply all too clear, as we are reminded every March 8th, on International Women’s Day.

I wish I could stop here and say I have always been a champion of this holiday, as it is observed throughout much of the world, but sadly to say — and I’d wager I’m not alone in this, especially amongst American men — before today I don’t recall ever even having heard of it. That may be because I live a shelled life according to my own principles, but more likely it’s due to the fact that we don’t do enough in this country to give voice to what is the indisputable reality: Women are not treated equally.

Either way, I’m not going to try and write myself into this courageous and remarkable history. For one hundred years women have been saying and writing and witnessing it better than I could ever attain in one quiet morning (or a thousand) at my keyboard. What I can offer though, through hope and example, as a citizen, and as a son and a husband and father, is that one day my daughters and every woman will not have to argue this side anymore. Now, that would be progress.

Please, for a much more moving message on this, watch this short video starring Judi Dench and Daniel Craig which appeared on UK Guardian.

In Each Our Own Voice,
Every Step of the Way

Since Lia’s diagnosis eleven and a half months ago one of the things we’ve been watchful of and spent many long hours safeguarding against was the effect diabetes would have, if any, on everyone’s self-esteem. We watched out especially for Lia’s, but our worry was not limited to her well-being alone. Before this disease it was really no problem as few things we did ever favored one child over the other (though it might not seem that way to them) and if it did those feeling the offense were encouraged to talk about it or let it go. Parenting is not simple; kids mostly don’t understand that. You’ve got to speak up for yourself. Then came diabetes and it was like nothing any of us had ever experienced before and the sheer volume of the time it consumed had the potential to capture our attention and hold it hostage in ways we had never known. And for the longest while it did, and still does on a regular occasion. But like any of life’s harder challenges, there are some things you do well and some you don’t. The key to thriving is not falling into the trap of denial which will lead you to nowhere good. Diabetes was put here upon us, upon Lia; it’s hers and ours to figure out.

Some of the things we did well: educating everyone on diabetes, including them all in the planning of meals, and trying to be proactive in Lia’s treatment and care so that diabetes did not hinder normal activities and interests. Some of the things we did not so well: Expecting our diabetes experience to affect everyone the same way, yielding common sense to overconfidence, moving on before we were ready. For their part, the kids handled most things pretty nicely. They pushed when they felt the need for it, and pulled back when the moment called for less. They developed a sense of emotional intuitiveness about their parents, me especially, that sometimes in hindsight just made me want to cry.

Like that one time this summer when I asked our son John to write an essay about how diabetes had changed him. He was struggling through some issues of his own and I thought filtering time through the lens of a life-threatening illness would help guide him back on course. It didn’t work out that way and his bitter diatribe in response was hurtful and accusing. So I did what any parent would do and shot back and we both now are living with the consequences. What I had failed to grasp in his paper and in his reality was the fact that life does not stop for an adolescent. There is the self and then everything else. When their world comes under attack from any direction their underdeveloped means of coping is hardly any match for the unreality that ensues. Sometimes the only appropriate voice is that which is the quietest.

Krista, too, our other freshly-minted adolescent, the year-long D-challenge has raised the awareness in her that life can deliver hard, knock-down punches. Her reaction has been appropriate for a kid her age, like a shifting sand dune with a ridge line of which you are unable to pinpoint: What if I’m sick too? Why can’t we just have pasta? Shouldn’t I learn to do that? Though she doesn’t always exhibit it, of late her attitude seems to be more of the latter as she’s shown a wont for looking out for her sometimes-annoying little sister. Such that when I see her come around during a blood test or infusion set change, I notice the look on her face as she watches is that of a resigned but clearheaded, true survivor: This is just what must be done.

For her part, Lia has been at the center of this and she has in her acceptance of it made us proud. Not a day goes by that I don’t wish it were all just a dream and we’d wake from it and our life would return as it once was, but never have I, not in eleven months, heard Lia wish the same thing. Not once. She more than any of us has taken the gospel truth of this disease and made it a part of herself, complete with the grief, the anger, the frustration and dismay, but also with appreciation and humor and beauty. She has through every minute inspired us all with her courage. Her own words say it better. In a recent form she filled out for a Christmas piano recital, she listed as her proudest achievement: Giving myself my first shot. Doing that was the biggest thing I could ever do for myself.

Like Lia, Franca is a person of facts. She is also a lover of language and as a foreign language teacher believes that it is the individual parts of the message that matter, not just the sum; so finding the perfect balance to work, the house, the kids, me, and diabetes has not been easy. It has taken much time and the exhaustion she feels at the end of day as she climbs in the bed is apparent. But stronger yet still is her will as a mother and wife and caregiver that she rises again just a couple of hours later to check Lia’s blood at two a.m. Her beloved voice, if you’ve listened, rings loud and clear on every page of this blog.

Several months ago when I started writing Without Envy, not long after Lia’s diagnosis I compared the journey that lay ahead to that which a pilgrim might embark on, where with our goods strapped to our backs we’d encounter others along the road and swap stories and learn about all the demanding peculiars of this disease, so that one day we might control it. We have come a long way since then and though each of us, every step of the way has grown smarter at putting a leash on our obnoxious traveling companion, controlling this beast wholly is out of the question and will be for months, maybe years to come. It may be that we never will. There is always a gloomier predicament to take joy in having avoided or averted. Maybe just not setting it free will be enough to keep it from wreaking more havoc. I don’t know, but maybe.

As the one year anniversary approaches and I think of all that has happened, all that we’ve learned and accomplished, the friends who have been with us since the beginning and the new ones we’ve met along the way and all of the stories we’ve shared together, I wonder about the new year and what it has in store. Mostly though I am just grateful that there is still so much more to discover.

External Genetistry

It was a common yet unproductive habit in the days, weeks and months following Lia’s diagnosis to do as any worried parent might do and question every external encounter or genetic mutation in our family history in pursuit of where had this come from. Often it wasn’t a very long thought, really more of a bothersome prelude to something more bothersome still than it was anything else, like waiting in line for a flu shot or the feeling you might get when inspecting a food’s nutritional label for what turns out to be no better understanding. Sometimes it appeared irately, a frantic obligation to safeguard everyone in the house, as it did last Winter when I almost convinced myself the diseased scoundrel was hiding amongst our flock of backyard chickens. If you let it you could spend countless, unfavorable hours glued to data of the electronic sort looking into plausible theories. In the end, finding an answer was as elusive (and contrary) as the century-old debate on emotion: do we run because we are afraid of bears or are we afraid of bears because we run.

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.

on being lia

Loves to sing * Tells long stories * Was born in an ambulance * Likes to make people laugh * Plays dress up * Has a beautiful voice * swims like the Man from Atlantis * Favorite color is blue * Favorite poem: Stopping by Woods on a Snowy Evening * Loves to camp and hike * Being outdoors * Knows every word of The Phantom of the Opera * Keeps a messy room * Sweet * Once cried over Abraham Lincoln’s passing * Wants to grow up to be a scientist * Likes to listen to Johnny Cash * Wishes she lived on a farm * Likes playing soccer * Obsessed with Harry Potter * Straight A student * Is a great artist * Loves acting in plays * Laughs at her Dad’s silliness * Plays the piano * Loves to wrestle * Afraid of thunderstorms * Rarely a picky eater * Used to chew on a diaper rag to go to sleep * Wants to learn how to sew * Likes riding shotgun in the big white pick-up * Eating carrots * Making soup * Going out for ice cream * Combs her mother’s hair * Loves animals * Has lived in only one house * Had three different bedrooms * Been to Rome, Paris and all over Belgium and some of France * Wants to go to Disney World * Likes to exercise * Friendly and outgoing * Knows everyone at her school * Enjoys learning French * Digs holes in the dirt * Makes funny faces * Doesn’t put things away * Works in the garden * Loves her stuffed animals * Never enough shoes * Summers at Nana camp * Is a good hand in the kitchen * Would eat cold pizza for breakfast  * Nighttime Pajama Walks * Dry Erase Boards * Prefers vanilla over chocolate * Likes to listen to country music * Very Kind and Considerate * Loves board games * Being with others * Wants to look up to her big sister * Misses playing with her brother * Favorite pet would be a dinosaur * beautiful handwriting * Wishes she were taller * A good friend * Beloved daughter * Brave * Courageous * Full of life

A Birthday Wish

Steve suggested that I write Lia’s birthday entry for Without Envy.  I am nervous, as I don’t usually share my writings with anyone.  But, as Steve has told me, sharing your writing is what helps you heal. So here is my earnest attempt.

The other day, Lia was running high so I walked from the High School where I teach and went to the building where the 4th grade is housed to make sure she didn’t need to change her infusion set.  I had the bottle of Humalog in my pocket to try to bring it to room temperature. Her blood sugar was within normal range, so I returned to my school. In the office, a friend of mine asked me if her glucose levels would stable out after being on insulin for a while.  I told her that it would not, that this would be a lifetime struggle for her and that the insulin I was carrying was to keep her alive.  As I said these words, I quickly had to leave the room to compose myself. Although I know very well what the insulin does, it was sobering to say those words aloud to someone else.

Since Lia’s diagnosis, I have not spent a lot of time thinking about how I feel about diabetes. With all the carb counting, figuring of boluses, night time blood tests, and everything else that comes in the day of a parent of a child with diabetes, I don’t allow myself the time to think about it.  I’ve done a lot of reading, mostly about how to manage diabetes, but also some about the long term effects of the disease.  I prefer not to think about the latter because if I do, I can’t function. I don’t want to read about what can happen if her kidneys fail, or her eyesight worsens, or anything else that might result in complications from diabetes.  What I focus on, is how we get her through another day as safely as we can.

I am not angry about the diabetes.  We will probably never know what caused it, though I am confused, since of the three kids, Lia is the one who was breastfed the longest, had the most natural foods given to her from the first days, and was home—unexposed to whatever her two siblings were exposed to in the daycares of their early days. I try to approach the whys in the way that I approach everything else:  it doesn’t really matter why—it just is—so learn to deal with it the best you can. When I get angry, it is at myself for making an error with a bolus or some other asinine thing, and it’s difficult for me to let it go.  But mostly, I feel tired: from all the things mentioned already, but really just tired of not knowing if I am managing things correctly—ever. Despite all our efforts, we never really know whether we’re doing things right, and more often than not, it is Lia who gives us the correct advice.  As a parent, that is frustrating to me.

Lia’s upcoming birthday is bittersweet for me.  I should not be feeling sad for the marking of another year in my little girl’s life, but this will be her first birthday with diabetes.  There is a part of me that wants to give her everything she wants—no matter what it is.  Mostly, I wish so much that she didn’t have diabetes, and of course I can’t deliver.

As I prepared to write this entry, I reread a journal that I kept when Lia was a baby. It is a sporadic account of her early days until February 2004 when she was 2 years and 5 months old.  I wish now that I had kept better records, but time is a precious commodity and I am sure I squandered it doing things like mopping my floors or doing the laundry.  Krista and I got a good laugh reading about when Lia dumped a roll of toilet paper into the commode and then proceeded to give herself a “spa” treatment. Or how when she first began drawing, she would make little swirls with her crayon and then look at it and exclaim, “Whoa!” The recurring theme in those entries is that even as a baby she was strong and independent and that she was, and still is, our comic relief at the house.

Last year, Steve planned her a dinosaur dig party.  He built a pit that looked like a real archeological dig site —complete with “fossilized” bones.  I enlisted one of my students (who is now at Johnson Wales Culinary Arts Institute) to make her a dinosaur cake.  She loved it all and was so very happy that day.

This year, she wanted a sleep over with her friends, so she wrote out the invitations on ruled notebook paper (I had given her some very nice card stock, which she politely refused) and gave them to the little girls at school.  On the morning of her party, I took her to get her ears pierced—something she has wanted to do but has been afraid to go through with. Our dear friend, Jessie, artist extraordinaire, made Lia the greatest looking Harry Potter cake we’ve ever seen.  Her excitement was a beautiful thing and, lucky for me, Steve captured it in a video so that I can relive that moment over and over.

What I want to do is to make this birthday as memorable as possible.  She’s been counting the days to her birthday for the last six weeks, and while I am not certain that what we’ve gotten for her is exactly what she wants, I know that our little girl will react in the way one might react to winning the lottery—as if she couldn’t imagine anything better.  That’s just Lia.

Happy Birthday, Lia.

Love, Mommy.