Over the next few weeks, Nicole Petit is going to share her story of living with diabetes, beginning with when she was first diagnosed at the age of nine. This is her first installment.
This October, I will be celebrating 32 years with type 1 diabetes. Some might find it odd that I’d use the word celebrate to commemorate my chronic illness, but I’m hoping my stories that I share will help others find a positive part of their chronic condition, too. Certainly, not everything has been sunshine and roses, but I would say that every single one of my life experiences — good or bad — has been affected or influenced by my disease.
When I was 9 years old growing up in Portland, Maine, all I cared about was playing outside in our huge backyard where I had endless lilacs to bring to my mother and plenty of time for target practice in the woodpile with fallen apples from our crabapple tree. My cats and dwarf rabbits were always around, a canoe trip or a hike in the woods with family was usually planned and as often as I could, I’d join one of my parents on their trip to Saco to play with my more than 20 cousins. Life was sweet.
Right before school started for my 4th-grade year, I came down with a terrible ear infection. This really threw a wrench in things because my father had planned to take my cousin Katie and me to Funtown to close the summer. I was devastated to miss that day and within a few weeks I lost almost 10 pounds from non-stop urination, lack of appetite and was constantly drinking water. My parents became quite concerned when the kilt my mother was tying around my tiny waist fell right to the floor. They became even more concerned when I drank from a stagnant, dirty puddle on a hiking trail out of desperate thirst.
Those two instances sent me to my pediatrician who within less than a few minutes diagnosed me with type 1 diabetes, at the time known as juvenile diabetes. My breath smelled sweet and there were ketones in my urine. My mother cried while on the phone with my father who was in Augusta where he served as Commissioner of Human Services at the time. They both sounded worried. I sat talking to my doctor calmly. I wanted to know two things: will this go away or will it get any better? He didn’t sugarcoat it — “Nope, you’ve got it for life kid, there might be a cure in ten years.” I felt assured that I’d be ok with healthy eating and daily injections of insulin and off my mother and I went to Maine Medical Center.
I spent a week at Maine Medical Center. I bombarded the dietician with questions about what foods were off limits. Anything I cared about was off limits (with moderation, but what kid cares about moderation?). I could have a quarter cup of ice cream once per week, but celery was a “free food.” Awesome.
Aside from that heartbreak, I welcomed the dozens of people who visited me. I got gifts. I became obsessed with Diet Coke. A surgeon who had performed an Intussusception on me as a baby came to visit me when he saw I had been admitted — he brought me stickers. I made friends with most of the pint-sized patients on the pediatric floor — many of whom I was convinced, were far worse off than I was. I thought to myself, “I just have to take shots and can’t eat ice cream — they’re in real pain.”
I had no pain. I read to them, pushed the TV and VCR around and offered movies for them to watch. I visited the “baby floor” and the Gift Shop and walked the Western Prom with my father. It really wasn’t all that bad until my nurse said I couldn’t leave until I gave myself or her an injection of saline.
While I was excited to get home to our beautiful yard, my pets, and my normal life, I simply wasn’t ready to self-inject, so I refused. The nurse refused to discharge me. Still, I refused. I would have rather stayed there a year with all the Diet Coke and movies I wanted before injecting me or the nurse with that needle. We came to a compromise — she had me inject an orange several times and I went on home.
Once home, life seemed normal to me. We had always eaten a healthy diet and been an active family so getting used to the maintenance of diabetes didn’t seem too daunting. My family and I attended classes on diabetes, went to the doctor for lots of follow-ups and explained to my friends what it meant when I had a low blood sugar.
The day I decided to inject myself for the first time, my cousins were with me and watched in amazement as I stuck the needle into my thigh. I was so proud of myself and knew I had reached cool status with them. My parents had successfully prepped me to explain my disease, ask for help if I needed it and to not miss out on life because of this new diagnosis. That’s all great — but a few years later, teen years hit, and things became a bit more challenging.
Nicole’s diabetes from her dad, Michael Petit’s point of view
When I learned that Nicole had diabetes — a disease I hadn’t previously associated with children — I asked a physician friend about the prognosis. He said that Nicole’s Type I/Juvenile Diabetes had been a certain death sentence … until scientists learned how to extract insulin from animals in the early 2oth century. He also said that while the illness was deadly serious, it was manageable, but required persistent, daily attention. I wept at the diagnosis but was relieved to learn the disease could be treated if not cured.
I think every parent’s worst fear is that their children may pre-decease them. That certainly crossed my mind in the days and weeks that followed. But thanks to attending support groups for parents, participating in a week-long ‘boot camp’ for children with diabetes and their parents, and, especially, Nicole’s determination to not have her life built around her diabetes, we learned to normalize her condition as another part of her life and our family’s life that was woven into our daily living.
Now, more than 30 years later, we still worry about a disease that is relentless, but our anxiety is relieved because, medical advances in diabetes notwithstanding, Nicole’s determination to lead a near-normal, productive life remains her — and our — best ally.
How her mom, Ann Kerry, reacted to Nicole’s diagnosis
The only thing I knew about diabetes was that it caused excessive thirst and frequent urination. This, I thought, was found only in older adults. I never to my knowledge had met a type 1 diabetic, probably due to it being a faceless disease.
Nicole had an ear infection that was treated and I thought that was it. On a day trip in the fall, she was so thirsty that she wanted to drink from a puddle. I made an appointment the following day with the pediatrician. The doctor diagnosed her by just smelling her breath — the tests confirmed his diagnosis.
It was a scary time. We were so uneducated about the disease and we had so much to learn. Nicole was admitted to the hospital where we spent the week. I lay prostrate in a cot next to her, and she became the pediatric floor social director. This I took as a good sign. We were bombarded with so much information on how and what areas to give shots, mixing insulin (no bubbles in the syringe), and a whole new way of eating measuring all her food and the food exchanges. If she wanted ice cream, she couldn’t have a potato for dinner; it was all pretty daunting.
We left the hospital armed with all this information, and the first day home Nicole gets the flu, vomiting — the whole nine yards. She couldn’t eat, but still had to take her insulin; it was trial and error from then on.
I went back to work and Nicole to school. Many times I had to leave work due to her high and low blood sugars. That was the big learning curve. As it happened, the school principal also had just been diagnosed with type 1 diabetes. Each day at lunch they would both test their blood sugars together — this gave me great comfort during school hours.
We spent a week at a camp in Maine for newly diagnosed children, it was so informative and we all learned a great deal from those who had been living with diabetes for years – we no longer felt alone. Our pediatrician sent a child about Nicole’s age to visit, but my daughter had no interest in hanging out with a kid just because she was diabetic. It was the beginning of Nicole taking charge of her disease.
Together we met with newly diagnosed kids and their parents at Maine Med. It was great for the kids to see this lovely energetic young girl thriving and a mother who was relaxed about her daughter’s disease. I remember wondering after the diagnosis if the day would ever come that I wouldn’t be talking every day about my sadness and fears. It did come, and it was due to Nicole’s amazing spirit — she just didn’t give in. I am so proud of the way she has handled the challenges, and there have been many these past three or four years, but she never quits — I really admire my daughter for that.
The next installment
As Nicole mentioned, when she became a teenager, her life became even more challenging. She’ll tell us why in her next blog post.
Do you or does someone in your family have type 1 diabetes? Is your story similar to Nicole’s?