From the day Caidence was born, her personality was infectious. She was goofy, happy, outgoing, and spunky. She was full of energy and light. And then a few months after her second birthday, everything suddenly changed. It was visible. She laid around on the couch all day and just wanted to be held. We'd go to the park or zoo and she'd ask me to take her home. She had no energy, didn't want to eat, didn't want to play. Being my first child, I figured her 2 year old molars must be cutting through and this was normal toddler behavior. She didn't want to eat, but would immediately perk up once she took a few bites. We went away for a weekend to a wedding and she was miserable and inconsolable. It was mid- July in Southern Utah and extremely hot. Caidence was refusing to eat or drink, so I finally got a syringe and Gatorade and starting squirting it in her mouth. At first she fought and fought me, but finally grabbed the bottle and started gulping. When we got home, I noticed that she started soaking through her diapers and clothes multiple times during the day. Her crib mattress was completely wet after a nap. After the second day of this, I remember waking up in the middle of the night with the clearest thought that she was diabetic. I had very little knowledge of diabetes at this point. I didn't know the signs. I didn't know that thirst and peeing a lot, lethargy and mood swings were at the top of the list. But that night the thought hit me so clearly. Call it mother’s intuition, call it spiritual guidance. But I immediately started googling away trying to prove myself wrong and find any other reason for these symptoms. But every website brought me right back to what I was dreading and listed diabetes as the top diagnosis. The next morning I took her straight to her pediatrician. After the impossible task of getting a urine sample from a stubborn 2 year old, our doctor confirmed the worst. As I broke down into tears in the doctor's office and the nurse wrapped her arms around me, Caidence hugged me and said, "Don't cry. It's okay, mom." She had no idea what was going on, but she was the strong one. We were sent straight to Primary Children's where they ran blood tests, and almost sent us home because her levels were not high enough to admit. I called our pediatrician and within minutes, he had arranged to get us a room. Luckily we had caught it very early, but we ended up spending the next 3 days there. It was the most overwhelming and heart wrenching 3 days of my life. Trying to explain to a toddler that these needles poking her constantly were actually a good thing was impossible. I was scared to death to take her home and have to be responsible for her health. I was shaking giving those first few shots. For months after, she didn't want to eat. She would throw her food and broke many plates because she was scared she'd have to get a shot. It would be an hour battle every time she had a low trying to convince her to eat. Any time she'd throw a tantrum, I'd have to check her blood sugar, not knowing if it was a result of diabetes or the terrible twos. How we survived the toddler years, I'll never know.
About six months after Caidence was diagnosed, my husband was teaching tennis to an amazing 14 year old girl named Lizzie and noticed she had an insulin pump on. Lizzie was diagnosed at 4 years old. As they talked, she told him her mom was a filmmaker and was working on a documentary called "Sugar Babies" and asked if she could meet us. We met her mom, Jenny Mackenzie, just a month before Caidence's third birthday. She noticed immediately the spunk this little girl had and asked her to be one of the four subjects in her film. For the next few years, she filmed her and watched her grow. She introduced us to our amazing doctor, and helped us navigate through these early years of diagnosis that are so overwhelming. Caidence felt like a movie star. Diabetes was no longer just a burden, it was a way to teach others. We got to go to screenings and speak on Q&A panels. She was able to meet the Governor and be in the newspaper. She no longer hated diabetes because, in her eyes, it made her famous. Lizzie became one of the first babysitters we were able to leave Caidence with because she knew exactly how to care for her. Jenny and Lizzie became lifelong friends.
A few months before Caidence was diagnosed, my husband, Zach was working as a tennis instructor and I was working full time for a family business. Unfortunately, the business closed and I lost my job. But that also meant I lost our medical benefits. Zach's job did not offer insurance and I was pregnant with our second daughter so we had to get private insurance. Once the baby was born, we switched to a high deductible/low premium plan, which was great since we were all "healthy." Four months later we sat in the hospital with the weight on our shoulders of being a young married couple with a newborn, and now a toddler with such an expensive disease. Although he was very successful in his career, half his paycheck was soon going to health costs. People outside of this disease do not realize the expense it weighs on a family. Insulin, needles, glucose strips, doctors appointments every two months. These are not luxuries. These are necessities. Zach decided it was time for a career change and went back to nursing school. Although it paid less, having insurance benefits were far more important.
Now here we are six years later. It's no longer a battle to get Caidence to eat when she's low. She's usually excited because it means a "free snack." But we do have new struggles. Worrying about sending her to play at a friends’ house, birthday parties, getting CGM alerts while she's at school and then waiting to see how long it takes for her to take the initiative and get her numbers back in range, having to leave class and go to the office to get a snack when she's low (I doubt she'd include this on the struggles list.) We've traded in our needles for an insulin pump. I am amazed every day at her strength. She never lets diabetes slow her down. She plays lacrosse and loves swimming. She counts her own carbs. She calls me almost weekly from school to tell me it’s someone’s birthday in her class and asks if she can eat the treat. We get discouraged on the bad days, but celebrate the good. With every sick day, growth spurt, change in routine, Wednesday, the numbers vary. Every single day is a learning process. Diabetes has taught me to fight and be strong, even when I don't want to, because I have a little girl worth fighting for. One day I won't be the one in charge anymore and I hope I'll have taught her to continue to fight for herself. But there is not a single 8 year old I know that could handle it with the strength of Caidence. She's our little hero.
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