For another account of the effect diabetes has had on our family since Lia’s diagnosis I’ll turn to one of our two other children. Though I am not always a very good practitioner of this, if you can be successful in getting them to open up honestly or are yourself perceptive enough, children can be a good gauge for ascertaining which things work well in a home and also for those things that do not. Sometimes, if a parent is in the midst of a crisis, as we were and sometimes still find ourselves, children may be the better and only true barometer for how well a family is functioning.
I’ve written some about them before: Krista’s worry over becoming diabetic herself; John’s thespian talent. But those were stories of them reacting to Lia’s diabetes and not real depictions of the ways in which they and us all were being made to change because of diabetes. That I have tried in some part to do on my own. Besides, change requires some level of acceptance and because it is not their body that has come under attack and must now be reliant on something external to keep them from harm, how could either of them possibly react in any other way but disparagingly toward its relevance and necessity?
I can remember when Lia was first diagnosed with diabetes there was a period of time where none of us knew what exactly it meant to have diabetes. Later that day, driving John and Krista to the hospital, I was asked about it — or maybe I just took it upon myself to inform them — nonetheless, I shared with them a few of the words I’d held onto from the doctor’s office: high blood sugar, ketones, pancreas, hospital. When those had left me and I had only my own worry to keep me I said nothing at all.The children listened and they were quiet too afterwards, of such little use was my ignorance. I can only imagine what they were thinking. What message of foreboding had I conveyed?
Since then, of course, we know more, and they too. So not long ago we asked our oldest, our son, to put down in words what Lia’s diabetes meant to him in terms of change. It was, we thought, a fitting request. John had been in deep water himself for some while on an unrelated matter and both Franca and I were interested in how diabetes may have altered for the better his own personal mindset. In hindsight, neither of us were prepared for his answer.
We had hoped his awareness now of this chronic disease had illuminated in him the need for direction, for finding opportunity and taking action. He would see in his sister just how fragile life can be and so with fervor would launch his pursuit of whatever bright future awaits him. Much like the mantra I use with my students at a writing conference I teach at each summer: How do I know what I think till I see what I say? I borrow this phrase from the English writer, E.M. Forster, in order to challenge them with this theory that even our own thoughts are a mystery to us until we take time to write them down, only then can we know their effect. This is what we were hoping to inspire in John. Revelation. Understanding. Acceptance.
Of course, roads everywhere parents travel are littered with ambitious pipe dreams for their children. This one was no different.
John’s essay began straightforward enough, highlighting Lia’s inspiring rise to the occasion of her diabetes, then went on to talk about the subtle changes to his eating habits. He mentioned, incorrectly, how his mother and I became incited, because of Lia’s diabetes, with corporate food processing and its effect on nutrition, specifically sugar. From there though the essay took a much more open and personal turn, as he accused his mother and I of constantly reminding him and his sister of how lucky they are for being healthy, thus adding more guilt than he already felt to the insurmountable truth of that fact.
I read this and at first I was angry. Constant reminder? Guilt? Blame? Where was the inspiration to make all he could of his life? Where was the yearning, the passion, the power of persuasion an illness like this should have over him? His essay wasn’t about him. It was about us, about me, about how Franca and I were treating him and his sister in relation to Lia’s diabetes. And that, as they say, is the rub.
I approached Krista and discovered that this was how she felt too and began to realize that although what we got from John wasn’t exactly what we had asked, it was honest and had required his private reflection. A parent can ask for no more than that and while it may not have been completely accurate, it did in it’s own way reveal a good bit about him (and us) and was, with some hope, inspirational, or at the very least empowering, for him to share.
So where does this bring us?
How do I know what I think till I see what I say?
It is nearly impossible under normal conditions for a family to know the aftermath our words and actions will have on one another. When you add something as frustrating and time consuming and as puzzling as diabetes, it’s a hundredfold harder, so the consequences are greater. John’s essay reminded me of that. He meant it not as a condemnation of our actions, though it felt that way as I read it and maybe even to him as he wrote it, but it was simply the view from another set of eyes watching out for the many dangers that lurk on this rough passage we now find ourselves. Like the view of the ocean from the ship’s crow’s nest, no other sailor aboard sees that vast body of water the same way. Of course there will be swells of uncertainty, periods of grief and solitude, far-off distant mirages that bring false hope, and also false sorrow. But there will be wonder too and the comfort of togetherness as we each rise above those occupational hazards to find that we are not after all alone, but a family.
And that much, I am happy to say, Diabetes has not changed.