I was diagnosed with type 1 diabetes when I was 6 years old. As much as I try to ignore it, the fact remains that I do have diabetes. The diagnosis changed my life, and day to day life with diabetes has most certainly shaped the person I grew to be, for better or for worse. There was a long time when I did not want to have children because I'd be too upset if they happened to get diabetes, too. "I'd kill myself," is what I said. But I am the only person in my family with type 1 diabetes. It is not hereditary. As the fear lessened, my desire to procreate increased, and now I have my daughter, R.
Before embarking on the journey of parenthood, I sat down last year and hashed out my feelings about diabetes. The events of the past and the way they affect me now, I wrote it all out in the attempt to look fear in the face and say, "I've conquered you." Before I created a new life and set about guiding it through this world, I wanted to make peace with my own life. I needed to unravel the dense ball of hurt that's been festering deep within my heart for all of these years and replace it with light.
On Tuesday I will learn the results from the blood test that will tell me if I can have another child. Now is as good a time as any to revisit what I wrote last year and let it all sink in again. Here is part 1, the diagnosis.
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“Your arms are awful thin….” Those words are the first time my Mom had hinted that there was something wrong with me. I just brushed it off and continued to play in the tub.
The truth was that diabetes had been plaguing my little body for the past couple of weeks. In school I was always looking for an excuse to escape from class, gulp from the water fountain, and visit the bathroom. It was a nuisance; always being lost-in-the-desert thirsty, but it didn’t occur to my six-year-old self that the unquenchable thirst and bathroom breaks meant something was terribly wrong. Unbeknownst to me, a sinister coup d’état had taken place within my body: my immune system had called mutiny on my pancreas and destroyed the insulin-producing islet cells. To this day, no one really knows why it happened. There’s no history of insulin-dependent diabetes in my family. I am the only one.
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As she looked over my scrawny body on that Wednesday night late in April, Mom’s mind picked through the possibilities. All she could think was that she must not feed me enough. She called to my dad, “Come here and look at M.” Dad walked into the master bathroom to see what she was talking about. “Doesn’t she look too skinny?”
“Well, yeah, she’s little. Do you think she’s just growing?” Dad’s mechanical mind, better suited in a garage than a doctor’s office, didn’t catch the seriousness of the situation that Mom was just starting to understand.
On Friday, I had a play date at my friend C’s house. Our respective schools were closed for spring break and would start back up again the next week. Mom sat and talked with C’s mother in the kitchen while C and I played in her bedroom. It wasn’t long before I was standing before them in the kitchen, asking for something to drink.
“Here’s some juice for you.” C's mom gave me a cup.
I gulped it down and asked for a refill. “Can I take it to C’s room?”
“Go right ahead.”
“Thanks!” Off I bounced down the hall. The adults continued to chat, and before long they heard a noise down the hall.
“Was that the toilet flushing again? Oh look, here’s M with her cup. Would you like some more?” C's mom asked me as I held the cup out to her. “I swear I just bought this carton of juice but I’ll have to go back to the store for another one soon enough.”
Mom panicked. She must have heard the toilet flush at least five times since we arrived, and on top of that, I was exhibiting signs of enormous thirst. For me to also be so skinny, something must be dangerously wrong.
“Are you okay?” C's mom broke her out of her reflections.
“Yes! Sorry. I think we’ll go home now. Say goodbye to C, M, it’s time for us to go.”
Mom stood in her kitchen and called her mother. I know her as Bubba. “Mom, I think something’s wrong with M. I was watching her at her friend's house today and she could not stop drinking or going to the bathroom."
“That sounds like diabetes,” came the caring and knowledgeable voice at the other end of the phone line.
“Diabetes?”
“Unquenchable thirst is the key marker. Has she lost weight?”
“Yes! I was giving her a bath the other night and I couldn’t believe how skinny she looked. It’s as if I starve her!” Mom’s calm started to break under the emotional strain.
“You have to take her to the doctor,” was Bubba’s rational reply. “They’ll check her blood sugar and that’s how you’ll know for sure.”
Mom’s heart sank. She had hoped, somewhat irrationally, that Bubba would tell her she was just imagining things and that I was fine. That fragile hope, however, was just chucked and dashed into countless pieces on the linoleum floor.
2:00 AM. Mom put the sponge down and stared at the time displayed on the microwave. Concern for me had kept her from finding sleep, so she figured she’d make use of the time awake by cleaning the kitchen. “So she could have diabetes… but it’s the weekend now. When am I going to be able to get an appointment with the pediatrician? I have to work tomorrow, too. Will it be next week? Will she even last that long? How serious is it? Is her health in dangerous trouble? Oh God…” The marathon of thoughts continued until it reached the finish line, “I have to call the doctor's office right now!” Mom reached past the microwave and picked up the phone.
“Hello?” The phone rang twice before a groggy voice came over the receiver. It was the doctor himself. Our pediatrician lived just a mile up the street with his office on the ground floor and his living quarters upstairs. Mom thought he would switch his phone over to an answering service at night but she was appalled to have woken the doctor from his sleep.
Mom’s words came pouring out in desperation, “Doctor! I think M has diabetes, what do I do? She’s so skinny and she’s drinking and peeing all of the time, and I’m so frightened, will you please take a look at her?” When she finished her long-winded plea, Mom held her breath and waited through the silence on the other end of the line.
"Is she unconscious?”
“No, I don’t think so. She’s asleep.”
“Call my office again in the morning and schedule an appointment then.”
“Oh,” Mom’s enthusiasm dropped into disappointment, “Okay. I’ll call in the morning. Good night.” She hung up the phone and tiptoed up the wooden stairs that creaked beneath her feet. Sliding into bed, she closed her eyes, pushed nagging thoughts away until morning, and fell asleep.
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It’s funny how I tremble as I write this. This is a story I have kept bottled up inside for so long, waiting for someone to tell it to. Now the words and emotions rush forth like an avalanche forced through a small tube as I try to control the flow of events on paper. Everything must be written as it happened; I can’t skip parts or jump back to them later. I wonder if this shaking will subside the nearer I get to the end, or if my heart will continue to pound through the entire writing process. Ideally the anxious palpitations will cease, meaning I’ve been healed, or have at least come closer to resolution. But for now, through this tsunami of sensations, all I can do is continue to tap at the keyboard and just write, just write.
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Mom called the office as soon as they opened the next morning and was able to schedule an appointment for 11:00. She left her job at the rustic home furnishings store early and went back home to pick me up. Dad stayed home with my older brother, S. It was a quick drive to the doctor's office. Looking at her little girl in the passenger seat, Mom noticed that I was withdrawn. Usually I would sing quietly to myself during car trips, but that day, not sure why I was going to see the doctor, I was silent.
She parked our big, blue van on the gravel driveway and we walked in the front door. No sooner had Mom signed in then the doctor called us back to a private room. “Well, let’s see what’s worth waking me up in the middle of the night,” the trim doctor with salt and pepper hair checked my chart by looking over his reading glasses. “You think she has diabetes? Easiest way to tell is with a simple blood test.” He looked down at the girl dressed in purple shorts with a pink and white striped shirt. “I’m going to have to prick your finger. You won’t like it, but it’ll be over fast.” Mom scooped me up and sat me on the examination table.
The doctor pierced the side of my finger with a lancet, and caught the drop of blood with a plastic test strip. “I’ll just go into the lab to read the results,” he excused himself from the room. Mom smoothed my hair as I sniffled from the injury. Two minutes later, he returned looking paler than when he had left. He looked Mom in the eyes and spoke firmly and clearly, “Run, do not walk, to the nearest emergency room.”
Mom’s legs gave out. She sank onto the table next to me, “It’s that bad?”
“I have never seen a blood sugar result so high. It’s over 800. Why didn’t you call me sooner? This is dangerous!”
She got defensive, “I didn’t know anything was wrong until last night!” The whole affair had sprung up on her so fast, and it would change our family forever.
He looked at me in fear. “She needs to go to the hospital right away. Your choices are St. Agnes in Catonsville or Children’s Hospital in DC. Which one will you go to?”
Mom’s head swam and she tried to formulate an answer, “Her dad works in DC. We’ll go there.”
“Good. I’ll call ahead and let them know you’re coming. Stop by your house to quickly pack a few clothes then be on your way. Run.”
Mom drove in silence back to the house, pushing the 35 mph speed limit. Dad and S were eating lunch at the kitchen table when we walked inside. Mom threw her purse down on the counter and wasted no time in telling Dad, “She has diabetes. We need to pack a bag and take her to Children’s Hospital in Washington right away.”
Dad stood up, “What? Where did this all come from?” The confusion was evident in his voice.
“I don’t know, but it’s dangerous. I’ve never seen the doctor look so scared. Her blood sugar is so high, we need to go now.”
I sat at the table across from my brother. Dad looked at us both, calculating the next steps.
“Go now? What are we going to do with S? Shouldn’t I stay here with him?”
“Please come with me. We’ll all go. I can’t do this alone.” Mom was on the verge of breaking down. Dad pulled a map out of a drawer to plan our route while Mom ran upstairs to my room and packed me a suitcase. The whole family then packed into the van and headed out. I just looked down, not liking to be the reason for an unplanned trip to the heart of the District of Columbia, forty-five minutes away. Both of my parents took turns anxiously looking back to make sure I was all right. For all they knew, 26 miles was too far.
The automatic doors of the Emergency Room at Children’s Hospital opened for us. Mom led the way, holding my hand, and Dad and S followed behind. The triage nurse looked up from her paperwork, “Can I help you?”
Mom put her hands on my shoulders. “Our pediatrician called about us. Our daughter needs help.”
The nurse stared incredulously at the skinny, but otherwise healthy looking girl in front of her. “Why’d you bring her here? She looks fine.”
Mom insisted, “She has diabetes. Please check her blood sugar.”
The nurse gestured for us to sit in the waiting area. Another nurse came over and pricked my finger for the second time that day. She let the blood drop sit on the plastic strip for one minute, then she wiped it off and stuck the end into a little machine. The glucometer counted down another 60 seconds, and then beeped with its result. The nurse gave a little chuckle, “Oh yeah, this one needs a room alright. Let's get an IV ready.”
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I remember that IV. It was my first one ever. I’m left-handed, so they put the needle in my right hand, and boy, did I whimper. They even taped a dry sponge to my wrist to immobilize it. I’m not sure if they still do that anymore. I remember seeing mothers walking their babies up and down the hall in front of my room, and the babies had IVs stuck into their spines. It could’ve been the same mother and baby, now that I think about it. I can’t say now why the babies needed IVs, but I had diabetes and I had an IV, so it made sense to me at the time that the babies must have diabetes, too. It made me sad to think that they would never know the sweet abandon of sugar. They would live their whole lives with diabetes, when I, at least, had 6 years without it. The one bit of hope I clung to while in the hospital was that at least I wasn’t a baby.
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S came one day to play in the game room with me. We played Memory. The IV made my right hand hurt and the blue sponge limited the mobility, so I only turned the cards with my left hand. We tried to have fun, but it was awkward. I envied that he wasn’t the one in the hospital and he knew it. There was nothing he could do, though. I know that anyone in my family would have switched places with me if they could, but we can’t be dejected when reality doesn’t work that way.
Aunts and uncles and cousins came to visit, my Girl Scout troop, one of Dad’s coworkers. It didn’t really matter whom. They came to make themselves feel better, while I sat at the apex of everything and tried not to mind being stared at. Shy people don’t take well to being the center of attention, especially not when they’re tethered to an IV in a hospital bed and have nowhere to run. I pretended to be more interested in the printer paper that my Dad brought from his work, which usually sent the well-wishers on their way. I’m sorry I can’t be more appreciative of their coming out of their way to visit. It all boils down to my wishing that none of us had a reason to go to the hospital in the first place.
Those stacks of paper Dad brought were my biggest amusement. I was only in the first grade, not especially good at reading or writing yet, so I cut at the paper with safety scissors and scribbled on it with crayons. Printer paper in 1989 used to have feed strips on the sides that I tore off at the perforations and taped into cat whiskers and a tail. People walking down the hall would be surprised to see a little girl on her hands and knees in a doorway, meowing and purring. That was the best bit of imagination I could conjure up at the time.
It wasn’t all fun and games, of course. Nurses poked and took blood from me, and no amount of kicking or screaming on my part would make them stop. Every time I peed I needed to slip a ketone test strip under the stream and write the results on a chart taped to the bathroom door. It was nothing like anything I had ever experienced before.
Mom and Dad attended diabetes classes so they would know how to care for me without doctors and nurses. I went into the hospital on Saturday, April 30th, and was released on Wednesday, May 3rd. Altogether it was only five days in the hospital, but I’d swear to you that it was at least two weeks.
On that Wednesday when we left the one little room I had been stuck in for what felt like forever, I looked around the hospital through new eyes. It really had felt like an eternity of fluorescent lights and white walls. When we exited through the sliding doors, a beautiful spring day was waiting just for me. The sun shone down and warmed my skin, and the soft breeze gently lifted my hair. It was the beginning of a new day, for better or for worse.
