“In the months following Eden’s diagnosis, my husband and I practice scenarios in which our children advocate for their safety, their health, and each other,” the author writes. (Photo: Caia image via Getty Images)
My husband and I race through the emergency room doors with our semi-conscious daughter. Under the bright lights of the hospital, our daughter’s body resembles a pile of bones on the stretcher.
†What have you done with her?† hiss the doctor.
sSpecialists are drawn in with increasing urgency when looking for a working vein. My daughter, Eden, will soon be diagnosed with a disease we had no idea she had. Her condition is critical. We’ll learn later that for nearly a week, medical professionals at her sleepover camp believed her escalating lethargy, nausea, and weight loss were homesickness. Every minute she went untreated was a minute closer to death.
The camp nurse does not sound alarmed when she calls days before to tell me that Eden has eaten very little. I am on holiday at the lake with my husband, Gary, and our son, Major, having visited our daughters, Eden, 10, and Emma, 13, for a visiting day almost a week before. When we were at camp for a month, my daughters seemed well adjusted when we visited, with a few fresh freckles on their noses. Balancing on water skis with new best friends, they were poster kids for an idyllic summer. So if the nurse says, “seems homesick to me,” I don’t believe it.
The next day, when a nurse reports that Eden is playing tennis on her bunk bed, we point the car home, ready to end our vacation. Hours later, however, a camp doctor calls. Eden is back in the infirmary. Under camp rules, there is only one scheduled call per summer with your RV unless there is an emergency. Something in my stomach screams that this is it.
“I’m not right,” Eden murmurs. Her voice is weak, unintelligible. Wasn’t she just playing tennis? It’s not until later that camp photos posted online will reveal her on the courts that day, thin and frail, with her head on her knees as others volley on the courts.
I flip through a mental catalog of medical mystery shows I’ve seen. A lake-born disease? A parasite? Hours later, as we drive into camp, I’m waiting in the car with my sleeping son while Gary picks up Eden. We’ll find a hotel somewhere, I guess. She will feel better in our presence.
When Gary comes out of the infirmary with our daughter draped over his arms, I don’t recognize her. Eden breathes laboriously; she is pale and unwashed. My hands are shaking. I can’t find the belt slot. “We need a hospital, Gary.”
As we pull onto the freeway, Eden vomits on her chest. For a moment the relief overwhelms me. Maybe she got it out, this bug, whatever it is. But when Eden’s eyes close and stand still, I punch the nearest hospital into our GPS.
“We don’t know what’s going on,” I beg. A team of doctors approaches us. Eden’s arteries have collapsed so much that it takes forever to draw blood and put in her IV. She has disappeared into the white pillow.
When she was born ten years earlier, her 10-pound weight surprised everyone. Pink and slippery she is quickly taken from me. There is blood sugar, gestational diabetes. But we both get a clean bill of health. I’m too exhausted to realize, though time-stamped photos reveal later, it took hours before I finally held my baby.
“Your daughter has type 1 diabetes,” the doctor now says. “Her blood sugar is 500.” I hear his words, but nothing is right. “She has diabetic ketoacidosis,” he says, explaining the critical condition of undiagnosed diabetes. “Our hospital is not equipped.”
Sirens go through the night as an ambulance takes us to a children’s hospital hours away in another town. I’m riding with Eden in the back. I’m not leaving her side. Although insulin is already being administered, she is still unresponsive.
In the intensive care unit we will discover that her kidneys are failing, her body is now acidic. She is 15% dehydrated. She has lost 13 pounds. Death is a potential threat. Balancing her sodium, potassium, chloride and insulin becomes a choreography that we must master in order for her to live. With a threat of brain damage, we wait five days in the ICU to determine if she has fluid in her brain, or if she will go into a coma. I hardly sleep on a hard chair, awakened by her crying. We will find that her diagnosis has nothing to do with her large weight at birth – it is a genetic autoimmune disease.
Several chaplains pass by every day. I am not a religious person, but I accept any prayer offered. I don’t mean to lose my daughter.
When we sent our daughters to camp that summer, we told them to treat other adults as parents. In loco parentis† But as Eden’s real parents, we would never have dismissed her concerns or ignored the telltale signs of declining health. For a week, Eden knew she needed help. But the Tums and Gatorade provided to her on each visit to the infirmary didn’t solve the problem. In fact, the sugar made it worse.
According to camp protocol, we weren’t called until Eden felt sick enough to ask to sleep in the infirmary. Even then, the symptoms described to us were minimized. More often than not, we’re told, many summer ailments and complaints are attention seeking or do not require medical attention. T1D is often confused with other diseases. A simple, inexpensive finger prick or urine test is all it took to diagnose her. If the protocol had been to test just one drop of blood or urine for high glucose levels, DKA and life-threatening complications could have been avoided. At what point would a medical professional have understood that Eden had an acute medical emergency? We will never know. My mother’s feelings saved her.
In the months following Eden’s diagnosis, my husband and I practice scenarios in which our children advocate for their safety, their health, and each other. We know all too well the dangers of following rules and being polite. No adult will ever undermine my children’s feelings again.
“Throw good manners out the window,” I say. “Be ruthless.”
The children are trained not to back down, to demand full visibility. If something doesn’t feel right, it probably is.
“Trust your gut,” I remind them. “Talk to every adult until you get to us. If necessary, pick up a phone from someone’s desk.’ I will always be okay with it.
Learning to live with type 1 diabetes that first year was challenging. Learning to advocate for adults and those in charge, even more so. But next summer, Eden is ready to finish what she started. We find a new camp, led by directors manning a nurturing and responsive 24-hour nursing unit. Much to the shock of many, we send our insulin-dependent daughter to camp for another four weeks. She picks up where she left off on the lake, albeit a different one, water skiing with new summer sisters. She learns to rely on a nursing team that listens and observes closely. She learns to object, to ask questions, and to stand firm. Most importantly, she advocates for and trusts in her ability to take care of herself. She will do this every summer for four years in a camp that will become her second home.
A far cry from the floppy little girl in my husband’s arms whose voice went unheard, Eden, an up-and-coming high school senior, is now an active, confident teen who is a JDRF youth ambassador, advocate, and diabetes educator. Eden insists she wouldn’t change her diagnosis or experience. Resilience and courage have shaped her into the strongest advocate I know.
A native New Yorker, Stephanie Karp has founded a vibrant community of writers in the suburbs just outside of NYC. Her work has appeared in Parents Magazine, Fit Pregancy and Connect Magazine. She is a frequent podcast guest on topics such as family, health and wellness. Stephanie’s memoir about her experience adopting her son from Kazakhstan is in the works. Read more about her on www.StephanieKarpWrites.com and on Instagram at @StephanieKarpWrites†
This article originally appeared on HuffPost and has been updated.