Type 1 Diabetes: A Parent’s Perspective

Last summer our family changed forever when Lauren, our nine-year-old daughter, was diagnosed with type 1 diabetes. A whirlwind of shock, anger, and worry engulfed me as I watched an incurable chronic illness move into our home.

Lauren was tired and noticeably thinner, with dark circles under her eyes, but we attributed these changes to her vigorous play at soccer and basketball camp. Her thirst was unquenchable.  There was a cut on her leg that would not heal, and her coloring was “not quite right.” I barely paid attention to these symptoms at the time, dismissing them as no big deal.

Hindsight is 20/20, but I could no longer deny that something was wrong when Lauren dropped almost twenty pounds in a three-week period. She was wasting away before our eyes.  A trip to the pediatrician led to the discovery of sugar in her urine and a high blood glucose level, When the doctor said, “I think you’re headed down the path of diabetes,” I felt a sick pit in my stomach. It seemed surreal when the doctor referred us to Park Nicollet’s International Diabetes Center (IDC).

Lauren had all the classic symptoms of type 1 diabetes, a genetic autoimmune disease. For reasons not totally understood, the immune system attacks and destroys its own insulin-producing cells in the pancreas. Because type 1 diabetics no longer make insulin, they must inject it several times daily or use a pump that dispenses the insulin through a small needle under the skin.  Pricking fingers six or more times a day to test blood sugar is a requirement. It was a lifestyle change beyond imagination for most families, including ours.

Following diagnosis, we spent hours with a nurse educator, dietitian, and pediatric endocrinologist, gaining an education about the foreign world of test strips, glucose monitors, insulin pens, syringes, and lancets. My husband and I were asked to inject ourselves with saline in order to understand what Lauren was going through. As difficult as it was to stick myself with a needle, I have found it much harder to stick my own child multiple times every day.

A child who rarely visited the doctor, didn’t remember ever having a shot, and was traumatized by a paper cut, Lauren now had to adjust to several injections a day. She was scared, emotionally fragile, and physically weak due to high blood sugars. Our seven-year-old daughter, Katherine, was afraid that she would catch diabetes from Lauren. My husband was concerned about the emotional stability of the family and worried about Lauren. (A supportive ally, he takes an active role in her care.)

My maternal instinct to “make it better” went into overdrive, but as much as I wanted to, I couldn’t make this one better. I wracked my brains over how I could have prevented it.  When did it start? When was the exact moment Lauren’s pancreas turned on itself? They were questions for which there are no answers. The doctor, who assured me that it was not my fault, quelled my guilt over having given her apple juice as a toddler. More than anything, I was angry and sad. I did not want my child to have to live with this.

Inexperienced on our first day home, we fumbled with the glucose monitor. It kept timing out before we could get enough blood on the strip, with the result that Lauren had to prick her fingers ten times for that one test. Everyone was upset, and Katherine voiced our thoughts exactly when she yelled “I don’t want Lauren to have diabetes anymore!” None of us did.

As overwhelming as it seemed in the beginning, the enormity of dealing with type 1 became abundantly clear with each passing day. Lauren will never again have the luxury of eating without counting every single carbohydrate that passes her lips. She must know her blood glucose level before and sometimes after every meal, with the knowledge that if she ignores this data, the consequences may include blindness, heart attack, neuropathy, or organ failure.

From a household with no monthly prescriptions, we went to having six. We have to write down what Lauren eats and when she eats it, her blood glucose prior to eating and sometimes in the middle of the night, every meal’s carbohydrates, and how much short-term insulin we inject. We have to give long-term insulin at the same time every evening. We must test before gym class to avoid low blood sugars, and Lauren must eat extra snacks prior to activity.  Her insulin to carbohydrate ratios change constantly, and therefore so are our daily mathematical calculations. Math was never my forte, and calculators are my new “must have” accessory.

On a recent trip to the mall, we were in the dressing room of a popular girls’ clothing store with Lauren slumped in a chair, feeling low, waiting for her blood sugar to rise after a snack. “This is NOT a good feeling, mom”, Lauren told me. She says it feels like she is “outside of her body.” While other carefree girls were showing off their outfits to mom and dad, I sat staring at my pale, sweaty, and shaking daughter. I wanted to scream.

At first, sending Lauren to school was very frightening. She is one of only three kids of 800 in her school with type 1.  Fortunately, our school has a thorough full-time nurse. How to handle birthday treats, school parties, testing times, insulin expirations, corrections, and snacks all were on the agenda before school started. The nurse and I are in daily contact, sharing dosages, blood sugars, and information in a notebook.

At a time when Lauren wants more independence from me, I must be with her almost all the time. I go on field trips, to sleepovers (to give shots, sometimes multiple times, for dinner, cake, late snack, etc.), birthday parties, Girl Scout functions, and camp. Even if Lauren were doing her own injections, which at this point she is not, she needs help determining insulin doses and handling hypoglycemic episodes.

Each year over 13,000 children are diagnosed with diabetes in the U.S.  That’s 35 children every day. With significant new findings from researchers almost daily, there are reasons to believe a cure is on the horizon. My hope is that Lauren will able to look back and remember the short time that she spent as a type 1 diabetic.

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