Most of my life I’ve been aware of Type 1 diabetes. Our close family friend has Type 1 diabetes and my mom studies and publishes papers on diabetes for the last 10 years. As much as I thought I knew about diabetes, I realize now I knew almost nothing. Our son Casey, to our shock, was diagnosed at age 5 with type 1 diabetes. We almost lost him. We are his pancreas now. After living in a new world where his constant medical care is required around the clock, insulin is like gold, and often encountering very scary and baffling blood sugar situations, I can only compare the monitoring of his blood sugar to the constant monitoring of a heartbeat. A heartbeat. You need that to live. You also need a working pancreas.
Let’s start at the beginning. Many people ask how I knew Casey was diabetic. It’s actually scary how it creeps up on you. One more night’s sleep and Casey would not have woken up again. As parents we ask ourselves why we didn’t catch it sooner. We blame ourselves. We cry our eyes out. I cried for days in the hospital. They actually make you take a test as a parent where one of the questions asks, “Is this your fault?” True or False. You scream internally that it has to be because you’re so upset with yourself for not somehow protecting your baby from a lifetime disease, and yet logically you mark the answer “False.” It’s not our fault.
Over the last year, we noticed that Casey, our food enthusiast, seemed to become a picky eater. He would say his stomach hurt, but then down a dessert after not eating too much dinner. So we thought he was just a picky eater going after the sweet stuff. I also thought he seemed to suddenly look like he was starting to lose his baby fat. Sometimes he was moody and sometimes he didn’t have energy like the other kids. We just thought all this was his personality. He also had some scratches on his face that wouldn’t heal, which I thought was odd. One day he suddenly looked extremely gaunt, so much so that I asked others what they thought. Everyone thought he was just growing. In reality, his body was consuming itself. My mother’s instinct noticed.
As we got closer to his day of diagnosis, he was asking for milk every 10 minutes. He was tired and uninterested in playing. One day he went down to school and laid on the couch in a ball. The day of his hospital admittance, he looked almost comatose while he took a very uncharacteristic nap in the middle of the school day. Also, my three boys love to bunk together and I never realized it was the same child wetting the bed again and again over the last couple weeks. As the body tries to rid itself of ketones, it makes one pee a lot and drink like they are in a desert. A vicious cycle. Going into week two, I decided to separate the boys and figure out who was wetting the bed. After limiting liquids before bedtime, the bed wetting continued. And I realized it was Casey. At this point, I was very concerned. As he slept next to me looking glassy eyed and rosy cheeked in the middle of the school day on the day he could have died, I Googled his symptoms.
The first thing that popped up was Type 1 diabetes. I was a bit taken back by that and reGoogled his symptoms. Urinary tract infection was a second choice, but still not first. My husband Sam and I had an appointment that night for our COVID-19 vaccine, so Casey was set to stay with a friend of ours for a couple hours who happens to be Type 1 diabetic. I told her he seemed extra tired but that he took a nap and maybe seemed a little better but to keep an eye on him. I never mentioned what I Googled. I think my mind thought it wasn’t possible. I once again expressed concerns to Sam that Casey was not himself and we agreed we would make him an appointment as soon as possible.
When we picked Casey up from our friend’s house, she mentioned to Sam she thought Casey was diabetic. I later asked how she knew and she said he drank water to the last drop like he was dying of thirst. Sam relayed what she said and all my radar went off. That’s what Google said. After we got home, I was so worried I called people I knew. I called my friend to get him into the doctor’s office the next day. I called his teacher to tell her he would miss his Super Friend week. She encouraged me to seek immediate medical attention if I was worried. I called my mom and told her I was scared he could be in ketoacidosis and maybe I should seek urgent medical care. She told me to get my friend to test his blood. That would tell me what I needed to know. I called my diabetic friend who just watched him and I asked her if she could test his blood. Together, all these people helped save my child’s life. They told me to take urgent action, to get him tested, to seek immediate care.
I will never forget what happened next. I told my husband Casey could be in immediate danger and I had to return to our friend’s house to test his blood. He looked at me, scared, but did not question or doubt me. He told me to update him immediately. I rushed Casey to be tested and I saw my friend’s monitor flash. She grabbed my arm and looked at me in terror and told me, “This is not good!” I felt fear in my heart. In that moment, I felt my son could die. To be sure of his sugar level, she retested him again. She told me I must take him immediately to the hospital. His sugar was 676. For those of you who don’t know, a normal blood sugar falls between 70 and 140. I think I turned pale. I felt sick to my stomach. I felt a fear like no other. I asked my friend to tell me if he would be ok. I started crying as I rushed him to the hospital following behind her. I called several people. My mom asked me, almost pleaded with me, to tell her, would he be OK? Sam felt helpless and distressed sitting at home with our other three kids unable to be there. My oldest son knew none of this was good. My friend helped reassure me the doctors would take care of Casey and I would not lose him. I held onto that with all of my being.
In those next days, I didn’t sleep for 36 hours. I forgot about coffee. I didn’t get much food. I was told so much information about diabetes, made to attend various classes, learn to administer insulin, etc., it was beyond overwhelming. I’m smart, but to learn how to become a doctor for your child in only six hours over a couple days for a life time disease, made me feel like I was not cut out for the job. I’m also a perfectionist and I felt like I couldn’t keep up. I felt like I was failing and I still do today. They reassured me we were doing great, ahead of the learning curve, but I felt so far behind it. I was brave but I was scared. I was overwhelmed and I was doubtful of mastering this. I paid attention, but I was lost. While I was sad, I tried to stay hopeful. I was angry at myself but strong for Casey. I felt like a failure while I applauded his strength. I questioned why him and not me?
Casey has occasionally told me he wishes he didn’t have diabetes. He has shown frustration and anger, but overall he has shown an impressive adjustment to a life changing situation for a now 6-year-old. We tell him we would take diabetes from him in a heartbeat if we could. I have fears every day with how precarious his situation is from hour to hour. With how little I feel I know. I already think into the future and worry. Diabetes is not well enough understood by parents of newly diagnosed children and that doesn’t change much long term. As one friend told me, it’s a little easier mentally if you come to terms with the fact that diabetes doesn’t make sense and it’s not predictable. Sometimes his sugar will be high when you thought it would go low and vice versa. Or it can be a rollercoaster. You cannot be a perfectionist with diabetes no matter how hard you try.
Parents of newly-diagnosed children need support. I often say if a nurse came to my house weekly to check on us, it would be amazing. At least for the first year. We are given the job of full-time doctor while we work full-time jobs and care for our other children. I’m grateful that what he has is treatable, but I’m terrified that we are now my son’s pancreas. I don’t sleep much anymore. I listen for urgent blood glucose alarms with his Dexcom monitor. I check to see if he is breathing, something we as parents are all familiar with, which will be as long as I live, whether in person or by phone. If I could say one of the most misunderstood things about Type 1 diabetes, besides being told you can’t have sugar, is that you don’t realize until it’s your reality how your child’s life now becomes like a literal heartbeat you hold in your hands and you’ve just become their number one barely-trained doctor. Wouldn’t you want to be a perfectionist too?
Lisa and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.