Like any therapist, I hear a lot about loss. I emphasize that loss can be a catalyst for growth and change. A photograph of a bowl of bright lemons hangs in my office, and I wrote a book about divorce with a chapter titled "Making Lemons Into Lemonade."
I'm like loss' greatest cheerleader. Or I was, until my daughter, Charlotte Rose, was diagnosed with Type 1 diabetes.
At age 6, she began wetting her bed and drinking inordinate amounts of water. We took her to an urgent care clinic where the doctor recognized the symptoms, tested her blood, and gently told us that he had called an ambulance to transport her to our local children's hospital.
Type 1 diabetes is an autoimmune disease that attacks the cells of the pancreas that produce insulin. There is no cure, and it requires constant management and insulin injections to keep blood sugar levels within a healthy range. It is frequently confused with Type 2 diabetes in which the body still makes insulin, but the insulin no longer works effectively. (I, too, misunderstood the difference and initially thought that the doctors at the clinic must be mistaken, because my daughter was thin and fit.)
Like all children, Charlotte Rose hated shots. Suddenly, our joyful, freckled 6-year-old faced a lifetime of insulin injections. And my husband and I would be the ones to administer the pain. Overnight, our primary job became pricking tiny fingers to measure glucose levels, tracking every gram of carbohydrates she ate, calculating the insulin needed to offset those carbs, and giving shots with every meal. Hundreds and hundreds of shots.
My memories from our hospital stay remain vivid. I stayed up all night pacing the halls in a turquoise bathrobe, scheming to somehow reverse the situation. I wondered if we could spend our savings on an experimental new treatment that might exist in a place like Denmark or Singapore. I imagined exotic sacrifices I could make in exchange for a cure, such as cutting off my arm. Small acts of kindness still reverberate today. Charlotte Rose's teacher visited holding pink roses, and assured: "Charlotte Rose is velvet and steel. I know she will be okay." Another friend took my hands and said: "Remember, this is adversity, not tragedy. Someday, she will have a cure." An elegant pediatric nurse grabbed my slumped shoulders and promised: "You will be fine, just draw your inspiration from your daughter."
I remember the bizarre sensation of practicing insulin injections by giving saline shots to my husband. (The needles used to deliver insulin are surprisingly fine, so when he gave them to me, the shots were not as painful as I expected.) We both struggled with the surreal nature of the experience. "I worry about a lot of things," Russ admitted, "but diabetes definitely was not on my list."
Despite my training and professional advice to clients, I felt certain that there could be no silver lining in this particular loss. I felt envious of my friends and clients with healthy children. I resented complaints about daily annoyances like car repairs and lost earrings. Each minor irritation inspired jealousy of the injection-free lives of others.
Type 1 diabetes is a strange and confounding disease. Charlotte Rose looks just like any other child. She can do almost anything that other kids can do. Yet, she is not like other kids. She is at constant risk of a seizure, or worse, caused by her blood sugar dropping too low, or permanent organ damage from sustained blood sugars that are too high. As a family, we lost our freedom to eat a meal without drawing blood and doing math. I routinely stay up all night when my daughter's blood sugar levels are dangerously high or low. Most importantly, Charlotte Rose lost the freedom to be alive without a constant infusion of synthetic insulin.
In spite of my difficulty locating lemonade through the lemon that is diabetes, I continue to feel awestruck by Charlotte Rose's resilience. She is an exceptionally happy -- even joyous -- 13-year-old girl. There are many sources of her happiness -- her school, her friends, her soccer team. But if I am honest, no source has been more important than the role she created for herself as an advocate. Soon after her diagnosis, she expressed an interest in finding a cure. Charlotte Rose embraced the cause, raised funds and awareness, and even testified before the FDA. Her work with the Juvenile Diabetes Research Foundation became a part of her identity much more significant than her disease itself. Diabetes has not defined her, but it has given her an opportunity to grow.
We recently marked -- not celebrated -- the six-year anniversary of her "Diagnosis Day." This year's anniversary carried special significance: She has had diabetes for half of her life.
Charlotte Rose still hates getting shots, and I still hate giving them. She now uses an insulin pump and a continuous glucose monitor, so her injections are less frequent, but they are also much more painful. I would still cut off my arm if it would cure this unrelenting disease.
In June, the New York Times reported promising results from outpatient trials for the artificial pancreas, the game-changing device that Charlotte Rose helped move forward through her FDA testimony. Amazingly, our babysitter and friend, Lesley Hurwitz, is one of the first to use the artificial pancreas in a current out-patient clinical trial. A few weeks ago, findings from a groundbreaking new study demonstrate the ability to transform human stem cells into insulin producing cells. Doug Melton's work is being described as the most significant breakthrough in diabetes research since the life saving discovery of synthetic insulin. This week, the first human was implanted with encapsulated cell replacement therapy which also has the long-term potential to revolutionize treatment of Type 1 diabetes. Contemplating the possibilities these new treatments represent, as the prescient nurse predicted, I continue to be inspired by my daughter's determination. Better treatment is around the corner, a cure is out there, and Charlotte Rose will always know that she had a small role in making this happen. There is no upside to diabetes, but there is resilience and love.