Welcome to The Club
|By: Dru-Ann Sgarlato
PEP Squad member
Life with D. That’s what those of us in The Club call life with type 1 (T1) diabetes, not to be confused with type 2 which Wilfred Brimley famously refers to as “Diabetus.” Type 1 means your pancreas goes on a permanent vacation and stops producing insulin. It is an autoimmune disease which can have devastating complications: kidney failure, blindness, nerve damage, amputations, heart attack, stroke, and death.
Life with D. I am the mom of three boys; two of whom are twins. One of my twins, Devin, was diagnosed just over seven years ago, at the age of 4 on St. Patrick’s Day. Devin is now 11 and has lived with this disease longer than he has lived without it. This is the only life he remembers.
Life with D. There is a clear line of demarcation between before diagnosis and after diagnosis. It is as abrupt, painful, and shocking to your system as running into a concrete wall at 100 miles an hour. In an instant, the life of your child, your family, and your world as you know it, is forever changed. Welcome to The Club. We were card-carrying members before we even knew what type 1 diabetes was. My friend, Natalie, who has lived with T1 for many years, told us at diagnosis, “You can do this. It will become like brushing your teeth.” Sadly, she was right.
Life with D. Eight months after diagnosis, I was getting Justin, Devin’s twin, ready for his bath and I asked him how he felt about diabetes and if he was worried about anything. My then 5 year old unloaded. He shared with me that he was afraid. He worried he, too, would get T1. Although it broke my heart and he had spoken aloud one of my fears, I reassured him that if he got T1, then he would be in the best family because we already knew how to take care of it. Justin then explained to me that it was his fault that Devin had diabetes. Justin had been learning, along with the rest of us, the importance of food and balancing insulin with food. Justin had done what so many children do; he took in information and, with his cognitive abilities, made the best sense he could out of what he had learned. Justin reminded me that when he and Devin were babies in high chairs, he used to reach over and take Devin’s food. In his mind, this meant that he had taken what Devin had needed and this resulted in diabetes. What a horrible burden he had borne all alone for many months. I assured him this was not his fault. It is no one’s fault.
Life with D. It is a harsh lesson that teaches you how little control we have in this life. We check Devin’s blood sugar approximately 15 times a day and all through the night, every night. At year’s end, Devin’s fingers have been poked no less than 5,400 times. As his mom, I have not slept a whole night through in seven years. Although Devin doesn’t wake up when I check his blood sugar, it disturbs his sleep. The ideal range is 80—180. So many things can impact those numbers: too much exercise, too much/too little food, illness, stress, being tired, change in weather, hormones, growth spurts and the list goes on and on. So many things outside of our control can impact Devin’s blood sugar. He has been as high as 600 and as low as 25.
Life with D. What is it like? It is a 24/7/365-day-a-year job with no opportunity to relax and forget about it. As a parent, I visualize walking a tight rope; holding my son in my arms. Precariously perched between high blood sugars; parched lips, sluggish thoughts, ketones, organ damage, death and low blood sugars; juice boxes, thousand yard stares, coma and death. Always death. People who do not walk this tight rope wonder if we maintain balance. Yes, yes we do! Devin is alive and that is the balance! Our lives are ruled by numbers. We are a slave to blood sugars. At night, when I am leaning over his tired, growing body, a tiny flashlight clenched in my teeth, I feel like a miner harvesting drops of precious blood. Will I do a victory dance and go back to sleep, secure in the knowledge that he will be stable for the next three hours or will I be up doing rechecks every hour because he is high or low? During these silent nights when I am the only one awake in my house, I imagine all the other moms and dads of T1D up too; on the tightrope with me, holding their breath, fearing my fears, dreaming my dreams, and holding their tiny flashlights, as we; little twinkling stars, ward off the darkness.
Life with D. That's what it's like for me. What is it like for Devin? He doesn’t remember much about life before diagnosis. However, even for a kid who doesn’t always remember to bring home his assignments, it means 24/7/365 responsibility. He can’t just run out the door to play, ride his bike, walk the dog, or go sledding. He has to take his blood glucose kit with him. He can’t run in and grab whatever he wants to eat when he wants to eat it. It requires thinking about his food and planning for the carbs. It means wearing an insulin pump 24 hours a day. Sometimes it means stopping what you are doing no matter how much fun you are having, to check your blood sugar. Am I high? Am I low? Sometimes it means you can’t join your friends and the fun because your blood sugar is high or low. It means frequent pump site changes during the summer when you are swimming or because you get too wet at the amusement park. It means always having your friends spend the night at your house so your mom can check your blood sugar in the night. It means spending a lot of time going to see the school nurse before meals and exercise. It means checking your blood sugar before every school test to make sure you are in range. It means educating those around you all the time. In short, it means having to always think about your disease while trying not to let it define who you are.
Life with D. One night, when I was feeling particularly tired of D and overwhelmed with inexplicable numbers, I whispered to Devin as he lay there ready to go to sleep, “Oh, I wish there was a cure. Don’t you wish there was a cure?” He looked at me very sincerely and said, “If there was a cure, I’d give it to another child because me and you are doing alright. We know how to handle it!” In his mind, there was only one cure for one child. I stayed awake a long time that night and marveled at the maturity and fortitude and resilience of my then 9 year old. I was shamed by my lack of character in the face of this challenge. I put my big girl panties back on and kept on going. I often return to that moment when I feel like I just can’t do it anymore.
Life with D. Currently there is no cure. Insulin is not a cure. It is life support. There are wonderful advancements in technology which make living with D much easier to manage. We have continuous glucose monitors, fancy test kits that connect to smart phones, insulin pumps which utilize the latest technology, and diabetic alert dogs. However, none of those things have replaced the pancreas. They are not a cure. My D mom friends and I play the Cure Game sometimes when we get together. We pretend we get the phone call that tells us to bring our children in and receive THE CURE. Playing this game makes me realize how fundamentally and profoundly this disease has changed us. This disease is so pervasive and, while I try not to let it define us, we do have to proactively plan for it and think about it all of the time. We have become so used to living in the shadow of fear, we no longer see the cloud; we continue to focus on the sun. Could I, after all of this time of not sleeping, remaining hypervigilant, and always keeping one eye focused on my son, ever go back to life without it? Just as we have learned to be who we now are, we can adapt. This is life with D. I would gladly turn in my card and quit The Club, where membership has so few privileges!
**Thanks for allowing us to share your story, Dru-Ann! We hope to be making that phone call to you as soon as we possibly can.