Words Without Envy

The way the year ended was pretty much the way that it started with a trip to the children’s wing of the hospital. Only this time our purpose there was not to admit Lia for what would become a very long and arduous twelve months discovering and treating diabetes, but to visit the children who now, like herself one year ago, were suffering through the holidays confined to a hospital room.

For some time we’d been scratching our heads as to how we could mark the anniversary date of her diagnosis and our thinking at first to be honest — or mine anyway at least — mostly veered in the tempting and frankly much warranted direction of we-can-do-anything in making amends for last year’s depressing celebration. Diabetes could not and would not keep us down. We all having weathered it together deserved something big, something memorable. But like many things in life often the best place to mark such a passage is not carried away with intentional bliss but closing the loop in the very same place where it started. So we shelved all ideas of a personal family statement and made plans to visit the hospital bearing notebooks and pens for the children.

In Walden Thoreau writes of his wood-pile and how during the coldness of winter and the howling windy nights he endeavored to keep a bright fire in his house and also in his breast. Writing too sustained him, as it has me too over these past many mind-numbing, inescapable months. This story-journal has been my wood-pile, my writing the axe, and just as Thoreau could look out through a window and admire his work by the volume of splintered wood chips, I look back over the words that I’ve written and the words of the friends fireside and I find admiration as well. There has been sorrow, yes, and worry and much frustration, but the moments of pleasure and pure wonderment of the grace and the courage of Lia, my family, and everyone touched by disease resonates warmly and endlessly throughout my heart.

There is much to be thankful for. For John and Krista, who have suffered from the lack of attention or too much of the wrong kind of attention and in who I love and would trust wholeheartedly would something tragic ever happen. For my parents and siblings, who have appeared here only occasionally but have shaped my beliefs and actions more perhaps than anyone. For our friends, there are no better companions. You know who are, we love you. For those strangers we’ve met on the way who promised us open arms, not once did you disappoint. Thank you for your attention, your comments and your compassion.

And, of course, there is Lia. There is nothing I could write that would adequately express my love, my pain, and my hope for her. I have tried to be honest in writing about all that has happened this year, the ups and downs, the many new things we’ve learned about each other and ourselves. The truth that’s been steady throughout is this one conflicting opinion: There is no better nor no worse person in the world this could have happened to. She has truly been like an angel.

Especially, I’m thankful for Franca. This year has been trying for both of us, in ways only parents could understand. For most of the day and night we’ve had to shift our focus on where it was needed and that has been costly in terms of being a couple. It would be a lie to say there have not been moments I did not wish to return to the lustful, love or be-damned carefree days of our past. But she more than anyone else has shown me that living without envy is not only possible, but the only way to live life. They say that marriage isn’t a word it’s a sentence. We are, this journey and she have taught me, the better story.

Like everything, there is much that changes in a year. We grow, we discover, we make our own history. We learn what we are made of, and also who we are not. Every day is an opportunity.

As we left the children’s hospital and walked across the street bridge to the parking deck, Lia was feeling especially happy. For her, our visit wasn’t about marking this date of one year with diabetes. It wasn’t even about her. It was about giving back. As she skipped along in the cool sunlight, squeezing my hand, she spoke up and said, “That was nice. Can we do this again next year?”

Little princess, you betcha.

Pajama Walks

The Things We Have Now

It was a cold, beautiful night with fresh snow on the ground and because it was cold and had snowed we stayed in our day clothes after dinner and put on our boots and heavy winter jackets and slipped on our gloves and knit caps and looked like a party of arctic adventurers headed out on nighttime maneuvers as we followed the dog out the door, turned up the drive, and started down the snow-covered street. It was very cold and the girls and I held hands. The lights were on in the neighbor’s houses and we alone were outside and the street was quiet and still and the blanket of snow on the ground cast a glow on the still silent night and made our way easy to follow. There were no cars coming or going and the dog ran freely up ahead. The three of us kept to the roadside where the snowpack was softer and deeper and the feel of the whiteness beneath our boots indeed gave us the sense of something special.

Like most times before, we walked slowly and talked about our day and the days ahead. We stopped often to play in the snow or admire the twinkling holiday decorations or stand daringly under the hunched-over shapes of the white-capped evergreens which drooped and stood sentinel like tired old men and the tenderness of the snow shaken loose of the branch brushed the skin like a mother’s soft kiss in the night.

Here on foot on the empty road the conversation comes easy. We discover ourselves suddenly free and especially absent of all other burden of occupation. There is walking and there is talk, nothing else. Time and the seasons slow so that plans can be made, arguments settled. There is singing and laughter, and always there are stories to tell. Very rarely, in over fifteen years of stepping outside after dinner, have our walks been interrupted by neighbors, which is both good and sad. It is only later in life that I find myself leaning more toward the latter. Mostly though I’m quite happy when it is just us.

At the big house with the lights synchronized to holiday music, the girls and I stopped and listened. We stood there for not a long while — it is small moments like that which are best to remember — before one of the girls threw a snowball and nearly knocked my cap off. We all laughed and turned and I called to the dog to follow and we headed back down the street toward home humming the Christmas carol.

Roughly Speaking

roughly 2,000 finger sticks

roughly 500 middle of the night blood sugar checks

roughly 700 shots

roughly 60 infusion set changes

roughly 200 episodes of hypoglycemia

roughly 1000 episodes of hyperglycemia

roughly feeling like a perfectly fine nine year old 1.5 days out of every 3

roughly counting 45,000 carbohydrates

roughly dosing 5,000 units of insulin

roughly costing $6,000 on diagnosis, treatment and supplies

roughly 100 hours in a doctor’s office, emergency room or hospital

roughly countless tears shed

roughly untold moments of uncertainty and head-scratching

roughly umpteen hours of lost sleep and oodles of life-saving worry

Thinking things could always be worse: everyday

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.