In Each Our Own Voice,
Every Step of the Way

by Steve

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.