Diabetes is a disease that affects the whole family, especially when a child is diagnosed. Parents of children diagnosed with diabetes face overwhelming, and sometimes frightening, questions such as: How can I strike the balance between caring and hovering? Will she ever be able to eat sweets again? How will I ever be able to let him go out on his own?
This is the latest in our occasional series from parents of children with diabetes, illustrating the emotions, challenges and successes each family faced upon diagnosis.
Name: Brooke Wheeler, mother of Carson, age 6, diagnosed at 21 months
From: Gretna, Neb.
The story I am sharing is of when our life with diabetes began . . . Friday afternoon, Nov. 7, 2008, the day our 21-month-old son was diagnosed with type 1 diabetes. It is a day that is still so vivid in my memory.
My husband and I were getting ready to take our son Carson to the doctor. Our main concern was that he had been drinking excessively, which in turn had him completely wetting through diapers in very short periods of time. On top of that, he had been quite irritable for months and had been sleeping more frequently. The night before we took him to the doctor, he had a strange incident in which he vomited after dinner and was very lethargic afterward. It did not appear to be a stomach illness or food related—there seemed to be no explanation.
All of these symptoms were a slow progression; they did not pop up overnight. However, by the time we decided to take him in, it had become quite obvious to both my husband and me that something just wasn’t right.
Before we left our house, I hopped onto WebMD and typed in his symptoms. One of the results that immediately came up was type 1 diabetes. My husband and I read a brief description of the disease (both of us had heard of diabetes before, but knew very little about the disease) and looked up at one another with grim faces. Even though our son was displaying textbook symptoms, according to this website, we didn’t really think that was what we were dealing with. There was no way our perfect little baby boy, who had never had an illness more severe than a cold, could have type 1 diabetes.
We walked through the clinic doors, not knowing that by the time we walked out of them, our lives would be forever changed. I was nervous for the appointment, but I was also just desperate to get some answers. I wanted an explanation for what had been going on with our little boy, no matter what those answers might be.
We were called back to a room. The nurse asked a lot of questions and we gave a synopsis of our concerns. The doctor came in and ordered a blood test and a urine sample. The nurse and doctor were already probably suspecting diabetes, but we were oblivious to that fact.
The urine sample was no easy task, as Carson was still in diapers at the time, so we had to put one of those urine bags on him and hope that we could catch some before it spilled into his diaper. While we waited for that to happen, they performed the blood test, which caused a full-on toddler meltdown. Seeing him so upset from that had me quite rattled. Little did I know, that was just the very beginning.
Looking back now, much of that visit is fuzzy in my memory. That is probably because there was a 30-second period of time that took center stage, a full 30 seconds when it felt like the Earth had stopped spinning. I felt like I was one of those cartoons being sucked into a tornado, screaming for help, but no one could hear me.
Those 30 seconds were when our doctor came in, and I could tell by his face that something was off. He asked if we were able to obtain the urine sample; we hadn’t yet and reported that. He said that was okay. My mind was going 900 miles a minute . . . why was that okay? It was okay because he had already gotten all of the information he needed from the blood test results. Carson’s blood glucose was so high the clinic meters couldn’t even read it. Our little boy had type 1 diabetes.
Clutching Carson in my lap, I immediately broke down as my body instantly went into a state of shock. I probably asked some very stupid questions. What did this mean for him? Would he have it forever? Was it something surgery could fix? What do I need to do to help my little boy? Again, we knew very little about diabetes.
We were told that Carson would need to be monitored in the hospital for a few days in order to start treatment and figure out what kind of insulin regimen would be needed. We left the clinic and contacted family members. Our families would probably tell you that our hysterical phone calls will forever be engrained in their memories.
We ended up spending three nights in the hospital. During that time we learned a wealth of information about diabetes and everything we needed to know to care for Carson. My husband and I both learned how to give him his insulin injections (four a day). Even all of these years later, I can still say giving him that first injection was easily one of the hardest things I have ever had to do.
Once we became more educated about diabetes and the evolving treatment technologies, we started earnestly looking into insulin pumps. We made an appointment with a new endocrinologist who was very much in favor of pumps. By the end of February 2009, Carson was on a pump. It was a complete answer to our prayers and helped us gain more control over our toddler’s diabetes management.
This is just the story surrounding Carson’s diagnosis. There have been many highs and lows since then, both figuratively and literally, and I expect no less in the future.
I read this quote once and I absolutely love it and find it to be especially fitting when reflecting on his diagnosis: “Remember . . . diabetes is a word, not a sentence.”