Miles was drinking the bathwater again. I saw him as I walked by the open door of the bathroom, on my way to get the boy’s pajamas from their bedroom. My feet dragged. The end of our long day would be over once I completed baths, jammies, books and bed; then I could collapse onto the couch and read. I was almost there. But Miles was scooping water with a plastic bath toy, leaning his head forward and sipping from the rim of the boat. The edges of his hair were wet and sticking to his cheeks.
“What are you doing?” I asked my four-year-old, reaching to brush the wet hair from his face.
“I don’t know,” he said. His stock answer.
“Are you thirsty? Don’t drink the bathwater, it’s yucky. I’ll get you something to drink.” I walked into the kitchen, suddenly alert. With a sippy cup of chocolate milk in my hands, I wrapped Miles in a towel, handed him his milk, and watched as he gulped it down.
“Done,” he said, handing it back to me, empty.
Miles loves chocolate milk, apple juice, juice boxes, lemonade and even water. He drinks quickly and often, and it scares me.
I remember being thirsty. I remember standing under the too-bright-middle-of-the-night lights of my private school dorm bathroom and gulping water from someone else’s plastic cup. I was so thirsty that I’d been dreaming about water. So I pushed back my warm comforter and stood, weak and dizzy in the lonely darkness of adolescent girls finally, temporarily asleep, and drank another cup of water. Two days later I was diagnosed with Type 1 diabetes.
My younger sister had been diagnosed six months earlier, and in the stark, antiseptic hospital room, I watched her prick her fingers and pee on a test strip to see what color it was and compare it to the chart of blood sugar colors. I watched my sister learn how to stick a needle into her thigh, her arm, or her stomach. Her diagnosis was a shock to our family members, who until then had believed in the healing powers of positive thinking. Dad taught us how to imagine our white blood cells as polar bears marching through our bodies, fighting off infection. We were never sick; we were “fighting something.” Later, I watched Erin stumble out of our small town church on Christmas Eve, her blood sugar low, and fall laughing into a snow bank. I watched my parents fumble through their pockets for Lifesavers and shove them into her mouth while she yanked her head from side to side, yelling, “No!” Church members filed past, staring, and I was so glad it was her and not me.
But then I got sick too. Our family doctor told my parents that it was rare to have two kids diagnosed with diabetes in the same family. I remember the doctor said that the causes of diabetes were still unclear; they could be environmental or triggered by a virus. There seemed to be more questions than answers. Diabetes is an auto-immune disease which meant that my body was attacking itself; my polar bears had gone mad. I was only fourteen-years-old, and the workings of my body were a mystery to me. Unlike my smaller, curvier friends, I didn’t have breasts and feared that I looked like a boy; I was skinny, flat-chested and had big hands and feet. As my small, curvy friends ran across the field hockey field, it seemed unfair that my body had failed on the inside too.
I remember a conversation I had with my ob-gyn when I was pregnant with my first son, Will. I’d asked her about the chances of passing diabetes on to my children. She told me that they were slim, one in one hundred. The chances were worse for fathers, she said, one in seventeen, and I was glad I was not a man. She explained that medical advances had turned a formerly fatal illness into a chronic disease, and the advances in research had led to long term complications.
“Medical advances have eliminated the survival of the fittest,” she explained. “We’re keeping the disease alive through medicine.” Before the advances in diabetes care, women were discouraged from having children, and often had several miscarriages before giving birth to a baby. Very often, after nine months of a difficult pregnancy, many times resulting in a risky caesarean delivery, a baby born to a diabetic mother was born with a defect. My ob-gyn talked to me as if I were lucky to be living in a time when medicine made these things (giving birth to a healthy baby and living without complications) possible. But I didn’t feel lucky.
From my mother, I inherited the color of my skin, my hair, and the shape of my mouth, while my long legs, and the slope of my nose, I inherited from my dad. My children at seven and four are now losing their teeth and learning to read, but my blood is running through their bodies. Will has my nose and shoulders, and Miles looks like a younger me when his hair is long and curls around his cheeks. Will is patient, and they both have a natural athleticism like their dad and this makes me confident that they will be accepted because of the way they can run, jump and throw. I worry they will have my introverted tendencies and I can already see my bad sense of direction in Will every time he walks out the front door. I hope that they are readers and lovers of books, but what about their insides? What will they inherit from me?
The next morning, as Miles sat at the kitchen counter watching cartoons and waiting for breakfast, I reached for his hand.
“I’m going to prick your finger,” I explained. “Just like how Mommy does.” He didn’t fight me so I grabbed the tip of his pointer finger, acting quickly so he wouldn’t have time to pull away, and pinched the small, soft tip between my larger, calloused fingers. I pressed the Accu-check against his skin and looking up once to reassure him, pushed the plunger.
“Ouch!” he said.
“What are you doing, Mom?” Will climbed onto the other barstool and leaned across the counter to watch. I ignored him. Pressing below the spot where I’d pricked, I collected a small, bright red dot of blood onto a test strip. Holding the machine in my hands, I waited.
5,4,3,2,1. Miles’ blood sugar was 81.
“Ha! Look at that!” Worry evaporated from my body, and letting it go, I realized I’d been clenching my teeth.
“Oh.” Miles and Will jumped off the barstools and went to the back to play.
I want the smooth skin of my children to remain unbroken on the inside and out. I want their fingers to remain callous-free, I want their pancreases to continue to engage in a conversation with the food they put into their mouths, their beta cells to keep pumping insulin, their stomachs to remain un-punctured by needles, and I want to watch them walk steadily by the snow banks of life. I want my boys to live the kind of lucky life my ob-gyn was talking about, the kind that comes with a freedom from pain, a freedom from being different, a freedom from complications.
I don’t want my boys to be thirsty.
Amy S. Mercer is a freelance writer living in Charleston, SC with her husband and two sons. Her essays have been published in skirt! magazine, A Cup of Comfort for Writers, Diabetes Forecast and Literary Mama. Amy is pursuing her MFA in creative writing at Queens University and working on a book about living with diabetes. She was diagnosed with Type 1 diabetes twenty-three years ago and is in great health, free from complications. You can read her blogs at www.alsmercer.wordpress.com and www.chronicmamas.wordpress.com