Swimming With My Clothes On

My family has a tradition of jumping into Keoka Lake after the annual Fourth of July costume parade. I was always one of the last ones in the water; I liked to watch the outfits fill with air as family members ran and jumped off the wooden dock. I liked to watch how the bright colors became muted in the cold mountain water. I’d step slowly down the ladder in my princess dress, holding my breath while the lake wrapped itself around my legs and pulled me toward the murky bottom. I was surprised by how quickly my slippery pink satin skirt became heavy under the water as panic filled my throat. I was scared that I wouldn’t be able to keep my head above the water and that I might get sucked to the murky bottom. So I kicked my legs furiously to keep from drowning.

Living with a chronic illness is like swimming with your clothes on. I was diagnosed with type 1 diabetes when I was 14 years old. I was in my first semester living away from home at a private high school when I became sick. I was so tired and thirsty that I was dreaming about water. My younger sister was diagnosed six months earlier, so when my mother came to collect me at school and leaned down to kiss my face; she recognized the sweet smell on my breath. She raced with me to the hospital, making promises that diabetes would not change my life, would not define me. I was told I could do anything and so I did; I spent a semester abroad, hiked into the Grand Canyon, rock climbed in Arizona and canoed in the Gulf of Mexico. I shoved my disease into a closet and pretended it didn’t exist.

I didn’t let my diabetes out of the closet until I began thinking about getting pregnant. This body that I’d used to propel me from one risk taking adventure to the next now needed to be treated kindly. My doctors explained that the first weeks of pregnancy were the most important for a baby’s development and that my blood sugars needed to be in tight control to ward off birth defects. I was paralyzed with fear. I was not even pregnant yet and there was so much at stake. I wanted to shove this idea into the closet but the words “Birth Defects” kept banging down the door. My husband and I tried to get pregnant for a year. Each month was a disappointment and I began to think I wasn’t meant to be a mother, that maybe my body was defective in more ways than one. I feared in the dark places of my heart that my body — this body that I injected, pricked, fed and denied — was different and might fail me, might deny me this basic, fundamental female skill. I’d been betrayed by my body at the edge of adolescence, and I feared that I would be excluded from the culture of motherhood.
So I was thrilled, stunned, and relieved when I finally saw the positive lines on the home pregnancy test and dedicated myself to perfect blood sugar control to protect my future child from the danger lurking within. I was labeled “High Risk” and the threat of birth defects floated just beneath the surface of my pregnancy every time I tested my blood sugar, every time I raised the fork to my mouth, the cup to my lips.

I was closely monitored, measured, tested, weighed, poked, and prodded for nine months by a team of doctors. I ate low carb meals and snacks (Smoothies, Balance bars, and chicken) even though what I really wanted was a piece of peanut butter toast. I tested my blood sugar so often that my finger tips were hard and calloused. Every time I got a “bad” reading (180+), I was plagued by guilt and imagined the sugar flowing like poison through my blood into my baby. In the high risk room of the local hospital I held my breath every time I had an ultrasound, worrying about what I might see in those blurry images. I tried to read the face of the technician for clues, but her eyes were flat and unblinking. So I worked hard to avoid bad readings and low blood sugars. I worked hard to exercise, take my vitamins and go to all my doctor appointments but I also watched my friend at work who was due a few weeks before me and listened to her talk about taking long baths, sleeping late on the weekend, and drinking milkshakes and burned with envy. It sounded so easy. I struggled to think positive thoughts, to visualize a healthy baby, to treat my body less like a machine and more like a mother-to-be.

My son was born on August 28th, 2001. I tell him the story of his birth on the eve of his birthday every year, just like my mother tells me mine. I tell him how my feet were so swollen that they hurt to touch, how the sun was white and flat in the sky, how the heat felt like Saran Wrap around my legs. I tell him how his dad and I drove to the hospital and checked ourselves in. How I spent the first night there alone and how, first thing the next morning, I was hooked up to IV’s and monitors and pushed for over two hours. I edit the part about how the drugs, the pushing, the vacuum, and forceps couldn’t get him out, how he had to be cut from my imperfect body. I tell him the part about hearing his cry, how something split apart inside of me with that sound, the sound of my child. He was here, I was a mother, and that was all that mattered.

That was seven years ago and so much has changed. I am now a mother to two healthy boys. Since I became a mother, my husband hasn’t reached over in the middle of the night to feel my sweaty back, to wake from the heaviness of sleep and rush to the kitchen for a glass of juice. Since I became a mother, he hasn’t had to hold my head up and pour the juice into my mouth to try and bring me back. Becoming a mother has taught me how to take care of myself.

Becoming a mother has also inspired me to reach out to other mothers living within the restrictions of a chronic disease. Mothers like myself who kick their legs as they try to keep the weights of disease from pulling them to the murky bottom. We are mothers with illnesses who bake dinners for teacher appreciation week, drive to t-ball practice and tennis lessons, arrange play-dates, drop our kids off at school, commute to work, and rock our babies until they fall back to sleep. We are mothers who test blood sugar levels, give shots, take medications, manage pain, and arrange for doctor visits. Most of all, we are mothers caught in the familiar balancing act of work, raising a family, finding time for ourselves and for our partners. What makes us different is Diabetes, Lupus, Multiple Sclerosis, Chronic Pain, Arthritis, Fibromyalgia, Crohn’s, Epilepsy, Depression or other unending illnesses. What makes us different are medications, complications, emotional and physical pain. What unites us is that we are mothers reading and writing our stories. We will tell our stories of illness because telling is what makes us stronger.