March 2, 2016—a “diaversary,” as they call it within the diabetes community—marked one year from the day that changed our lives forever. It had been one year from the day our family was blindsided by our then-2-year-old son Jackson’s Type 1 diabetes diagnosis. One year from the time we took him in for a simple glucose test, when I saw that look in the pediatrician’s eyes that made my stomach drop. One year from the day I had to make the call to my husband and break the news.
Little did we know that day at Phoenix Children’s Hospital—as our heads reeled with an onslaught of information—that March 2 would mark only our first diagnosis that month: Just 17 days later, our then-4-year old son Dallin was also diagnosed with Type 1 diabetes.
I have learned a lot in the last year. I have learned that Type 1 diabetes is an autoimmune disorder that causes the immune system to attack the insulin-producing cells in the pancreas. I have learned that insulin is a hormone that allows the human body to properly metabolize food. I have learned that a normal person’s blood-glucose levels should be somewhere in the low 100s. Both of my boys had levels around 600 at diagnosis.
Looking back, I can hardly remember a time when I did not know these simple facts. Now I am acutely aware of this information every day as I step in and attempt to act as a pancreas for two of my four young children.
The number of carbohydrates they consume must be calculated in every bite of food they eat. Then, using a mathematical formula provided by our endocrinologist, we must figure the amount of insulin—administered by injection—necessary to help their bodies break that food down. We must check their blood-sugar levels multiple times a day (and often during the night) to ensure they are within a healthy range.
It is a delicate balancing act. The consequences for falling outside their individual target ranges are severe. Over time, high blood-glucose levels (hyperglycemia) can lead to serious complications, including damage to heart, blood vessels, nerves and kidneys; eye and foot problems; diabetic ketoacidosis; and stroke. The consequences of low blood sugar are more immediate and severe, including seizures, coma and death.
Type 1 diabetes is a heavy load to carry. In the past 12 months, we have tested blood-sugar levels in each child about 2,000 times and administered insulin nearly 6,000 times.
There are no breaks. There is no known cause or cure. There is only management—constant, daily, never-ending management.
Before my boys’ diagnoses, I had never experienced the mental, physical and emotional stress that a chronic disease can create for a family. I have discovered a kind of anxiety I never thought possible as we have spent countless nights awake, wondering if Dallin and Jackson would wake up in the morning.
The one thing I did know before last March is what may have saved their lives. Miraculously, somewhere in my adulthood, I had learned the early-warning signs of diabetes. For both of my boys, the symptoms were the same: frequent urination and constant, excessive thirst. Had I not known this, something catastrophic could have happened before we realized what was wrong.
Other early warning signs of diabetes include sudden, rapid weight loss and a fruity odor on the breath (a common warning sign of diabeticketoacidosis, or DKA).
As soon as I recognized how often Jackson was soaking through his diaper and waking up multiple times during the night for a drink of water, I called the pediatrician and scheduled a glucose test. We were grateful to catch the disease early so my boys could receive the care they needed. Thanks to an early diagnosis—and proper management—my children’s futures are bright.
I feel as though this last year has brought our family closer with the renewed understanding that we are in this together. Each of us has learned that we can do hard things. I have seen our daughters, Ava, 10, and Ella, 8, learn how to expertly check blood- sugar levels and administer insulin to their little brothers. More importantly, they advocate for their brothers by educating everyone they know about Type 1 diabetes. Along with grandparents, aunts, uncles, cousins, neighbors, church members and friends, our daughters have provided a solid support system for Dallin and Jackson as we have made our way toward a new “normal.”
But we have only made it past the first year of a lifetime of “diaversaries.” As a family, we will honor this “diaversary” by giving hope to other families affected by Type 1 diabetes. We have raised money for and are participating in this month’s annual JDRF (Junior Diabetes Research Foundation) One Walk (5K) in Phoenix to support life-changing research.
This past year, the most touching moments I have witnessed are when these precious boys hug and cheer each other on. They share the most beautiful gift of unending friendship and unique understanding. Their bond is a special one. Although these brothers have a tough road ahead of them, it is not one that they will ever have to travel alone.