I struggle with the answer to many questions these days.
"Will you always have to check his blood sugar at night?”
“How is Jax?”
“Do you have his blood sugar under control now?”
Being one who despises whiners, I am in a predicament. Say we're fine or tell the truth? I desperately want my friends and family to understand diabetes. Why, just three months ago, I only semi-understood Type 2 Diabetes. Had never even heard anyone discuss Type 1 diabetes. And I lumped them both together by assuming that the “cure” was one or two shots a day and off you go.
Boy, was I wrong. Ignorant. And blindly mistaken.
The truth is, I am still spinning from the stunning impact that Type 1 diabetes has had on our family. One day we had two healthy boys. The next day, we came face to face with the brutal fact that our four year old has a chronic and life threatening disease.
I’ve learned more than I’d like to know about diabetes. About how insulin, the hormone required to keep my child alive, could also kill him. About how it reduces life expectancy by 10 to 15 years. About how running high blood glucose levels increase the risk of blindness, limb amputation, stroke and kidney failure. And about how the body absorbs insulin differently every single injection. So, even if we did everything consistently – ate the same meal at the same time every day, the same amount of exercise and the same amount of insulin – each day would result in very different blood glucose levels.
At the risk of sounding like a complainer; one of those whiners I detest, I want everyone to understand diabetes. I’m compelled to explain that after two months, things have not returned to normal. Jax no longer looks sick, but diabetes still consumes my life. Diabetes can be isolating, because friends and relatives can’t comprehend the enormous demands diabetes makes upon a family.
My nights are an endless string of finger pokes, snacks and sleeplessness. Could any parent sleep soundly through the night when faced with the potential of their child dropping into a coma? Every time I wake up before Jax and hear only silence, I wonder if he is still alive.
My days have become a mélange of counting carbs, planning meals and snacks, working, injecting insulin, rushing Jax through meals, doing my best to pay some attention to Logan, cleaning, grocery shopping, and snapping at the kids to pipe down. My head pounds during breakfast every morning from lack of sleep, as the kids grow louder and louder and my frayed nerves unravel.
I don’t want to hear one more person tell me that at least Jax got diabetes while he was so young or that kids are resilient. This child of four is extremely accepting of what life throws at him. He’s spent four years having his parents tell him what to do and when to do it. We’ve made most of his decisions for him during his short life. So, of course he’s accepting of diabetes. But that doesn’t mean he likes it. He still grieves the loss of his normal.
After Jax had the flu a couple of weeks ago, and his fever spiked up to 106.7, I asked him if he was glad he wasn’t sick anymore. Those gorgeous brown eyes lit up, a smile radiated his face and he shouted, “I don’t have diabetes anymore?” Just yesterday, while snuggling with me after waking up, he whispered to me that he hates diabetes.
Somewhere, in the middle of all of this, I have found peace about diabetes. I’ve slapped courage like a sticker to my forehead so that I can lead my children by example. I refuse to complain, because it’s not really hard. It’s just work. Initially, I balked when directed to chart every injection, blood glucose reading and snack. Now I study those dreaded charts with fervor. It resembles a huge game of Risk that I’m determined to figure out. Tomorrow cannot be predicted, but I can use what happened in the past to provide answers as to how I’ll deal with the future. I’m a fighter. Competitive by nature. And by George, I even want to be the best at diabetes.
I no longer hyperventilate at the lows. 320 blood glucose readings and my eyebrows don’t even move. I’ve learned that I’m not in control of anything. I’m just doing the best I can.
Diabetes might consume my life, but I refuse to let it control us. We are moving forward. Life is going on. Like tiny toddlers learning to walk, we are finding our footing in this new life. I can talk business and take a call from the Preschool to discuss blood glucose, almost in the same sentence. I am able to daydream about our next trip to the beach, even if it means a glucometer, insulin and plenty of juice boxes will be there with us.
Faith is still a mystery to me, but I hunger to find the line between having faith that miracles still happen and accepting a disease. Trust remains elusive, but I discovered peace when I put my trust in God.
I find myself thinking about Heaven differently. “No more pain and no more disease” actually mean something to me now. Heaven is the place where Jax will live free from diabetes, finger pokes, injections, carb counting and correction ratios. Heaven is where my child will play freely and as long as he wishes. Heaven is where I’ll curl up with my mom and Jesus on the front porch and watch my babies play. Heaven is where I’ll throw down the burden of diabetes and never think back to what life was like before diabetes.
Heaven is where I’ll never hear my four year old ask the question, “Momma, do I still have diabetes?”