"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 our semi-conscious daughter through the Emergency Room doors. Under the hospital’s bright lights, our daughter’s body looks like a pile of bones on the gurney.
“What have you done to her?” the doctor hisses.
Specialists are pulled in with increasing urgency as they seek to find a working vein. My daughter, Eden, will soon be diagnosed with a disease we had no idea she had. Her condition is critical. Later, we will come to know that for almost a week, medical professionals at her sleep-away camp believed her escalating lethargy, nausea and weight loss to be homesickness. Every minute she wasn’t being treated was a minute closer to death.
The camp nurse doesn’t sound alarmed when she calls days earlier to tell me Eden has eaten very little. I am with my husband, Gary, and our son, Major, on a lake vacation, having visited our daughters, Eden, 10, and Emma, 13, almost a week earlier for Visiting Day. At camp for a month, my daughters had appeared well-adjusted when we visited, a smattering of fresh freckles across their noses. Balancing on water skis with new best friends, they were poster children for an idyllic summer. So when the nurse says, “seems like homesickness to me,” I am in disbelief.
The following day, when a nurse reports that Eden is with her bunk playing tennis, we point the car towards home, ready to conclude our vacation. Hours later, however, a camp doctor calls. Eden is back in the infirmary. Camp rules dictate just one planned call each summer with your camper unless there is an emergency. Something in my gut screams that this is.
“I’m not right,” Eden mumbles. Her voice is weak, incomprehensible. Wasn’t she just playing tennis? It’s only later that camp photos posted online will reveal her on the courts that day, thin and fragile, resting her head on her knees while others volleyed on the courts.
I scan through a mental catalog of medical mystery shows I’ve seen. A lake born illness? A parasite? When we pull into camp hours later, I wait in the car with my sleeping son while Gary retrieves Eden. We will find a hotel somewhere, I think. She will feel better in our presence.
When Gary emerges from the infirmary with our daughter draped across his arms, I do not recognize her. Eden’s breathing is labored; she is pale and unwashed. My hands are shaking. I can’t find the seat belt slot. “We need a hospital, Gary.”
As we pull onto the highway, Eden vomits onto her chest. For just a moment, relief floods me. Maybe she got it out, this bug, whatever it is. But when Eden’s eyes close and remain still, I punch the nearest hospital into our GPS.
“We don’t know what’s wrong,” I plead. A team of doctors descend upon us. Eden’s veins are so collapsed it takes forever to draw blood and insert her IV. She has vanished into the white pillow.
At her birth, ten years earlier, her 10-pound weight surprises everyone. Pink and slippery, she is quickly taken from me. There is talk of blood sugar, gestational diabetes. But we are both given a clean bill of health. I am too exhausted to realize, though time-stamped photos later reveal, it took hours for me to finally hold my baby.
“Your daughter has Type 1 Diabetes,” the doctor says now. “Her blood sugar is 500.” I hear his words but nothing makes sense. “She’s in Diabetic Ketoacidosis,” he says, explaining the critical condition of undiagnosed diabetes. “Our hospital is not equipped.”
Sirens pierce the night as an ambulance speeds us to a children’s hospital hours away in another city. I ride with Eden in the back. I will not leave her side. Though insulin is already being administered, she remains unresponsive.
At the Intensive Care Unit, we will find out her kidneys are failing, her body 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 we must master for her to live. With a threat of brain damage, we wait five days in ICU to determine if she has fluid on her brain, if she will slip into a coma. I barely sleep on a hard chair, woken by her cries. We will find out her diagnosis has nothing to do with her large weight at birth ― it is a genetic autoimmune disease.
Different chaplains visit daily. I am not a religious person, yet I accept every prayer offered. Surely I am not meant 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 actual parents, we would never have dismissed her concerns or ignored the telltale signs of failing health. For one week, Eden knew she needed help. Yet, the Tums and Gatorade dispensed to her at each infirmary visit did nothing to address the issue. In fact, the sugar exacerbated it.
Camp protocol meant we weren’t called until Eden felt sick enough to request to sleep in the infirmary. Even then the symptoms described to us were minimized. More often than not, we have been told, many summer ailments and complaints are attention seeking or don’t require medical attention. T1D is often confused with other illnesses. A simple, inexpensive finger stick or urine test is all that was needed to diagnose her. If it had been protocol to test just one drop of blood or urine for high glucose levels, DKA and life threatening complications could have been prevented. At what point would a medical professional have understood Eden was experiencing an acute medical emergency? We will never know. My mother’s sense is what 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, too well, the perils of following rules and of being polite. No adult will ever again undermine my children’s feelings.
“Throw good manners out the window,” I say. “Be relentless.”
The kids have been trained to not back down, to demand full visibility. If something feels wrong, it likely is.
“Trust your gut,” I remind them. “Speak to every adult until you reach us. Grab a phone off someone’s desk if you must.” I will always be okay with it.
Learning to live with Type 1 Diabetes that first year was a challenge. Learning to advocate and challenge adults and those in charge, even more so. Yet the following summer, Eden is ready to finish what she started. We find a new camp, led by directors who staff a nurturing and responsive 24-hour nursing unit. 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, waterskiing with new summer sisters. She learns to rely on a nursing team that listens and observes deeply. She learns to object, to question and to remain steadfast. Most importantly, she advocates and trusts her ability to take care of herself. She does so each summer for four more years at a camp that becomes her second home.
A far cry from the limp little girl in my husband’s arms whose voice was not heard, Eden, a rising high school senior, is now an active, confident teen who is a JDRF Youth Ambassador, an advocate and diabetes educator. Eden maintains that she wouldn’t change anything about her diagnosis or experience. Resiliency and bravery have shaped her into the strongest advocate I know.
A native New Yorker, Stephanie Karp has founded a vibrant writing community in the suburbs just outside NYC. Her work has appeared in Parents Magazine, Fit Pregnancy and Connect Magazine. She is a frequent podcast guest on topics including family, health and wellness. Stephanie’s memoir about her experience adopting her son from Kazakhstan is in progress. Learn more about her at www.StephanieKarpWrites.com and on Instagram at @StephanieKarpWrites.
This article originally appeared on HuffPost and has been updated.