When My Son Was Diagnosed With Type 1 Diabetes

Five years ago my inner strength and coping skills were put to the test. It was by far was the most stressful and scariest time of my entire life. My husband had been hospitalized for three weeks with a traumatic brain injury as well as several other major bodily injuries after a major injury car accident.

My son, Connor, was 9 years old and had not been feeling well for days. As each day passed, he was getting worse and seemed to be slipping away. He wasn’t eating, was extremely thirsty, was vomiting and was extremely lethargic. It wasn’t until he was changing into pajamas one evening that I saw just skin and bones on his torso. My heart sank; something was really wrong with him and I didn’t know what it was. What I didn’t know at the time was he was staring death right in the face. I also didn’t know he had an autoimmune disease called Type 1 diabetes.

Connor was in diabetic ketoacidosis (DKA). His body no longer had the ability to break down carbohydrates. When your body has no way of doing this, the blood sugar rises and has nowhere to go so it starts to eat away at fat, muscle and then internal organs, until eventually the brain swells and the person slowly dies. I was not aware of any of this until I walked him into the ER and the nurse recognized his symptoms and told me, “Your son has Type 1 diabetes and his blood sugar is over 1200.” In Connor’s case, it was shocking to all the medical staff that he was still walking and wasn’t in a coma.

I often think back to that time and how scary and stressful it was and wonder, what if I had waited to take him to the ER? what if he had died in the days leading up to this day? what if the waiting caused permanent damage? The “what if’s” haunt me all the time. But he survived and is thriving as a 14-year-old boy.

Flash forward five years and our life is consumed by this disease. Our days and night are filled with finger pokes, insulin shots, making sure his insulin pump is connected to his body properly, continuous glucose monitoring to ensure his safety 24/7, late nights, stressful days, keeping supplies stocked, making sure he always has a carb snack in his possession in case of a low.

For five years I’ve been my son’s nurse, his doctor, his pharmacist, his counselor, his nutritionist and his shoulder to cry on. When he was first diagnosed and didn’t have an insulin pump or a continuous glucose monitor, I would have to wake him several times a night to make sure he was still alive. We had to follow the midnight, 3 a.m. and 6 a.m. rule. Wake him all three times and have him test. Go back to sleep and wake again in three hours to test his blood sugar again. This alone will break you down over time. Remember all those nighttime waking late when we all had a newborn baby? This was being repeated, except this time he wasn’t a newborn baby and any sleep I could get was consumed by the thoughts of him dying in his sleep. There have been many days and late nights he’s been so frustrated with it, and there’s been many days and nights that I get frustrated and I cry. Having this disease is no easy task. Being a kid is hard enough. Being the one who makes sure he lives and doesn’t die is no easy task. Being a parent is hard enough. But somehow we do it. There are days and nights we both want to give up, but we keep moving forward and do our best at managing this beast of a disease.

It’s been my mission for five years to try and explain Connor’s disease to all those that don’t know the difference between Type 1 diabetes and Type 2 diabetes.

Type 1 diabetes only effects 10 percent of those with diabetes. Most diagnosis are in childhood, however, it isn’t unheard of for someone to be diagnosed later in life. Type 1 diabetes is an autoimmune disease. Meaning Connor’s own immune system attacked his pancreas and the ability to produce his own insulin. His pancreas no longer can break down carbs. Not sugar, but carbs. This is a common misconception when talking about diabetes. There is no cure for Type 1 diabetes. There are only ways to help manage it.

Type 2 diabetes is a insulin resistance to your own body already making insulin. Type 2 is not an autoimmune disease. Type 2 can be cured and can be reversed with proper diet and exercise.

Type 1 diabetics will forever be dependent on man made insulin for them to survive, without it, they will die. There was nothing that Connor or myself did to bring on this autoimmune response. You don’t get it from too much sugar, it wasn’t caused by any immunizations he had as a baby, flu shots didn’t cause it, what he ate didn’t cause it, the kind of formula he had as a baby didn’t cause it. There is no known cause. The only known is the body had an autoimmune response and in turn left him without a pancreas that can create its own insulin. Too much insulin causes a low blood sugar and not enough causes a high blood sugar. Both very dangerous. Then factor in stress, illness, exercise and hormones and it can be extremely difficult to find that perfect balance. Connor will forever be a Type 1 diabetic until a cure is found.

Connor has come a long way since that day. Each day he is taking on his disease more and more on his own. We are now five years in and we have a good grasp on managing it. However, no matter how hard we try, there will always be times of imperfection and diabetes takes over. I am very proud of the young man he has become. Connor will forever be insulin dependent. Finding that balance can be difficult at times.

So today, even though it’s a tough day to look back on. I thank God every day he saved my son; that I wasn’t making funeral plans to bury him. As harsh as that may sound, it’s a fact. If I had not reacted like I did on that day, I could have been telling a different story today. Today I celebrate his life and even though he has this disease, I am grateful he is still here with us.

Editor’s note: This story has been published with permission from the author’s son.