This is a reprise of an essay I wrote back in April 2009, on the one-year anniversary of my daughter’s diagnosis of Type 1 diabetes
One year ago this afternoon, my baby girl was sick. On and off, she had been fussy for days. Late in the afternoon on the 20th of April, she had vomited. I hoped for the random fleeting-sickness of early childhood. Twelve hours later, in the early morning, we awoke abruptly as she vomited again. And then, she slipped into something unfamiliar: sleepiness? That wasn’t it. It was lethargy. Eventually, non-responsiveness. Her breathing quickened. I remember the sight of her eyelids as I held her in my arms, still hoping for an explanation that would be treatable, something that would disrupt our lives for this day, this week, and then cure itself just like so many viruses, so many quirky kid bugs.
There is a number when you are diagnosed with diabetes. That is all you need. A measure of blood glucose. It is a simple finger prick, a wait of some seconds, and then a number. 408. And then a rush, shock. For me, of course, who cries monthly, if not weekly, a steady stream of tears began that would not end for hours, as new sights and words urged them on.
We rushed her ourselves to the children’s hospital. People stare at you, inevitably, when you walk speedily into an ER with that stubborn stream of tears and the baby who does not wake up. And then you yearn for an escape from the foreground, to be seated and anonymous, to believe that no one particularly cares what you’re doing and doesn’t attend to the message of your face. You wish for this: I want to just be, as everyone else.
She returned to wakefulness the next morning. The nurse had promised it would be a long night. We will get through it. And then, after dawn, there was Gloria, awake, who pointed with a dimpled baby arm and declared, “Rice.” It was her word of the month back then, her catch-all proclamation, and of course I cried.
And so, here we are, one year later, and I can’t help but reflect on that day. I have an imprintable heart, and I am not one to let dates pass without stirring their meaning in my mind. There is much to dislike about this day for me. My memories still feel young, and they have not taken pity on me yet, nor softened with any note of kindness. It saddens me to think that this is just year one of many, that there is nothing that recedes, there is no “getting better”, no past tense. I do not hope for a cure – there is nothing proximate about such an ending, so talk of a cure feels like folly to me. Neither am I on a journey, for that too suggests an end. Gloria is living her life. I am accompanying her. It is a maddening task, much of her phenomenology opaque to me. It is humbling, frustrating, unceasing. I repeat phrases: we have our good days and our bad days. More accurately, there are things that are good and things that are bad about virtually every day. I try. I have many five-second spans of concern when I wait for the results of a finger prick. Her blood sugar is too high. Her blood sugar is too low. Act. You miscalculated, overshot, undershot, almost got it, didn’t. I use faint praise too much: “decent”.
I have to find something promising in this day. She is one year older. In that year, she has learned to talk. She has taken on the righteous outrage of the typical two-year-old. She plays. She feeds her baby dolls, puts on her own shoes, hones her toddler humor. She bops, grins, is still a fan of a good round of peek-a-boo. She has been to Disneyland twice, ridden a city bus to the county fair, gone on four camping trips, taken an airplane ride, discussed “Barracko Bama”. The reflection of her cuteness is no less blinding than it would otherwise be – I am overwhelmed by it, as I was and continue to be with my other two children. There are an abundance of moments for which I, like any parent, am grateful: when she rouses from sleep as I sit near her, and she murmurs, “My baby?” and her hand finds her nearby baby doll. She imitates my made-up songs, puts her head on my shoulder, pats my back. “Hold you!” she admonishes me, and I hoist her up another time, and she is back on my hip. I was never going to limit her, never going to sit down, never planning to stop encouraging her to enjoy the diversity of pleasures available for the grasping. Still, I resent everything about her disease, I resent our culture of sugar and of eating, and I resent the questions I have to ask myself every week: is she screaming or is that the diabetes screaming?
So, we have made it to another April 21st, and it is a blessedly ordinary day. Memories will age, others will form. Eventually she will no longer fit on my hip, but her burden will remain. I am left with a lament known to many others: there is much, much – too much – that a parent cannot do