Summer. I love summer. As I reflect on our Indiana summer, type 1 diabetes is at the heart of every colorful day; never letting up and always being present.
The red, hot fiery days, which I didn’t complain about given the cold, gray damp spring we endured, will be missed. In Indiana, it seems as if we survive one extreme only to be plunged into another. It struck me this week that this is a perfect analogy for type 1 diabetes.
The Highs and Lows of T1D
I watch my son go from one extreme (high blood glucose) to another (low blood glucose) more often than I first thought possible. With each aspect of type 1 diabetes my heart and soul respond and my brain translates these responses into colors.
RED – that hot steamy anger that accompanies every high blood sugar. It is so hard as a parent to watch your child suffer and know you can’t fix the cause.
ORANGE – the warm feeling that comes over me every time my son successfully navigates another diabetic hurdle as he learns to calculate his own ratios, drives solo, attends college; simply living his best life despite this disease.
BLUE – a complicated set of emotions caused by the lack of knowledge and empathy in the world. After reading a recent twitter post that condemned a person for injecting themselves with insulin at a restaurant table saying, “That’s so gross!” Watch out – the icy blue fingers of this mama’s wrath starts to send out a scathing response into the Twitterverse. Luckily, logic takes control and I realize 280 characters will not change the stranger’s perception.
Gray – the never ending plea for someone to FIND A CURE. I don’t want anyone, including my son, to live with this disease for one more day!
Green – oh, the complicated color green. The families we serve never seem to have enough green because insulin remains unaffordable for many. For many type 1 patients not on a pump; they probably need 2-3 vials of fast acting insulin (humalog) and at least one vial of long acting insulin. They are still looking at approximately $5-600 per month for insulin alone! Few families can handle that cost month in, month out. Yes, insurance can help, but even with insurance, the amount of money per year spent just to keep their children alive is staggering.
And, don’t get me started on the amount of money made by insurance companies and executives from this disease! Well, that’s another conversation where mama’s icy blue wrath starts boils over.
Yellow – which for me represents love. When I look at my son dealing with this disease I feel all warm and tingly – just like I standing in the summer sunshine. He is a shining example of strength and perseverance. I am so proud of how he continually copes with the reality of his disease. Is he a “perfect diabetic” – goodness no! But, he handles this disease perfectly for him. And, he does not keep his disease in the shadows; it is part of him. It’s exposed to the sunlight for all to see.
Black – the mood of type 1 diabetes burnout. It’s a heartbreaking reality. Type 1 diabetes offers no breaks, no vacations. Burnout is real and even the most positive person will find themselves feeling it. I constantly pray that those black times can be banished by the yellow rays of love.
Rose – that wonderful hue of compassion and hope. Rose blooms whenever someone cares enough to ask about type 1 diabetes, and passionately searches to learn the facts. When I see my son’s friends, teachers or teammates support him and love him, my heart becomes hopeful for the future. I put on my rose-colored glasses whenever I hear about a new treatment for type 1 and think, “Well, it’s not a cure, but it is progress! Hopefully a cure will follow this breakthrough!”
Midnight Blue – my secret fear that surfaces at night knowing that he is no longer in the next room. Summer is over. And, he has returned to college. In the deep dark blue, I grapple with the “What ifs.”
The What ifs of Type 1 Diabetes
- he doesn’t wake up when he is low?
- he miscalculates his dose of insulin?
- he goes low while driving and gets in an accident?
- we couldn’t afford his insulin or supplies?
- he goes into DKA while at college; will he recognize the signs; will he get help in time?
This endless spiral of doom and gloom can only be repelled by the sunshine of knowing that he can handle this. He has the knowledge, and he isn’t alone. He’s got this if a complication occurs, and he’s got us. Diabetes will not win. We, as a family, will not allow it.
However, type 1 diabetes is color blind. Everyone is fair game and it refuses to play by any rules. It brings on a rainbow of emotions. But, we will never stop looking for the pot of gold at the end of that rainbow. Is the pot of gold a cure? Maybe someday, but today – our pot of gold is seeing 100 on the meter and knowing we can conquer this incurable disease.