I open my eyes before the alarm rings. My body knows this routine, and it awakens seconds ahead of the chime. I marvel that some unseen timekeeper within my body alerts me before my clock has that chance. In the silence, I don’t allow it the pleasure of ringing. I slip out of bed, and follow my well-worn path to the bedroom below. It is 2:00 in the morning.
I am praying as I go, for the right numbers to appear on the faintly lit blood sugar monitor of my child. He breathes deeply and barely stirs as I search for his small hand. I gently uncurl his little fingers and poke him swiftly, permitting one drop of blood to squeeze from his calloused fingertip. My child is a diabetic.
Remembering nights when we slept soundly until morning, I hold my breath and ask again – not for miracles at this moment – but simply for the right number on the tiny screen. I long for a number that indicates his blood sugar has been stable for the last few hours, that won’t require me to sit him up and pour a small glass of juice down his sleeping lips, or to feed him enough to stabilize him until morning. Numbly, I stare at a number that taunts me. I have missed a hidden ‘low’ and now his little body has reacted and sent his blood sugar soaring in rebellion. I worry about his liver, fretting at my complete inadequacy for this task. I am troubled knowing that no matter how heroically I may alter my sleep, to capture and hold the elusively perfect number, it will only last for a breath of time. A few hours of stable blood sugar is my fantasy.
Daily, I am drilled for a class in which I never enrolled; a lifetime member of a club that I never chose to join. I roll my little boy on his side and follow the nearly invisible trail of tubing that, tonight, leads from a site in his thigh. Tomorrow it may lead from his arm, tummy or bottom to a small, square device that has become his closest friend; the pump that keeps him alive. I administer the correct dose of insulin and trust it to take his blood sugar level to healthier places.
From the first horrifying hours that our 6 year old became so ill, to the near-devastating diagnosis of his disease, we have plunged into a world of trying to understand and mimic what our son’s body used to do without our knowledge or perception. We stand vigil at the doors of his bloodstream, allowing specified and corresponding amounts of nourishment and insulin, striving to maintain a balance that will allow him to thrive.
I ride the emotional roller coaster of his sky-rocketing and depth-plunging blood sugar. I exalt over each good reading and barely hold myself from despair at each poor one. I know my own level of fatigue weighs heavily into my reaction at each blood test. How can my internal alarm clock work so accurately, and his pancreas not work at all?
I lament over our family. There are eight other children. I struggle when their needs collide with the moment of absolute necessity in caring for our diabetic child. I research the topic to exhaustion and read everything that I can until the sponge that is my brain cannot hold another drop of information. I steadfastly refuse to learn about things that may happen later. Some things we will learn when we must…no sooner.
I cry on the day that we put the pieces together and take our 3-year-old to the hospital for confirmation of what we already know in our hearts to be true. We are parents to not only one diabetic child, but two. This time we saw the enemy as it crept closer although we were equally powerless to stop its’ coming.
We appoint ourselves round-the-clock timekeepers. We take turns during the wee-hours, alternating shifts so that each of us can have an extra few hours sleep. I fight my body as it awakens too easily, even when it is not ‘my turn’ to rise and check the blood sugar of two small sleeping boys. I lie awake, awaiting a mumbled report in the dark that either allows me to smile and roll over for another small gift of sleep, or sentences my aching mind to search for the variable that we have missed. Too much insulin? Too little? Too many carbs at dinner? A growth spurt? A virus? My body craves sleep, but my mind won’t allow it.
We are coaches teaching our children about health, nutrition, and exercise. We are teachers as they learn to count carbohydrates and figure insulin ratios. We are health care providers tackling each new hurdle, like the day we learned that one boy is also intolerant of gluten in all forms. So, we add Celiac Disease to his résumé and continue climbing this expanding curve of learning. We are nurses as we change infusion sites, and move tubing on each little pin-cushioned body. We are cheerleaders as we celebrate moments of perfect blood sugar. We are Mommy and Daddy as we hug and kiss their hurts, or hold them when we don’t have the answers to why a tummy or a head hurts again…or still.
We know that we will never cease praying for a miracle. We hold fast to the belief that a cure will come in their lifetime and we trust that we will be given the strength to carry on until that day.
A full night’s sleep may never happen but that really doesn’t matter anymore. When the alarm rings, we spring into action…sometimes even before it rings.