By Robin Munger
Our diabetes story doesn’t begin like most other stories. It does not begin in the hospital in a state of emergency. Our son did not start his diabetes journey holding on to life by a thread while we waited and watched, terrified that our child might not make it to tomorrow.
Our story begins in our Pediatrician’s office. Our diagnosis was “accidentally” discovered during a routine well-child exam and a urinalysis our doctor does routinely at age five and not again until age ten. I will never forget our doctor of five years looking at me and saying, “Your life is about to change” and sending us immediately to an endocrinologist.
We were in a state of shock. How could this be real? Our son, Barrett, was the “healthy” one of our two children. He rarely got sick. He ate healthy foods and got tons of exercise. He is a normal, happy, healthy boy. We lived in a confused, scared state for those first few weeks, watching him like a hawk and seeing… well, seeing nothing really.
His A1C was borderline. He tested positive for only one antibody. His blood sugar numbers were within “normal” range 99% of the time. It turns out, we caught diabetes early. As much denial as I threw at it, it would eventually push back until there was no doubt we were dealing with Type 1. Instead of being tossed in to the fray that is the usual Type 1 diagnosis, we have watched, over the last year, as our son’s diabetes has slowly and steadily progressed.
In the beginning, I took the denial to all new levels. I think I truly thought I could “fix” it. Isn’t that what all mothers feel? It is our job, our duty, our responsibility to fix our child’s hurts. Make everything better. I spent many nights, up until 2 or 3 am reading and researching, looking for answers. If I couldn’t “fix” it, then what did I need to do to handle it perfectly? I took his disease on. I was going to beat diabetes.
But guess what?? Diabetes had other plans. The cruelty of this disease for me has not been the multiple finger sticks. Or the numerous daily injections. It hasn’t been learning to insert a CGM sensor and calming the fears of my son every time we insert it because it scares him. All of that is horrible. It is heart breaking. It isn’t anything a sweet 5 year old boy should have to tolerate. But that hasn’t been the worst part…..for me.
For me, it has been the absence of control. I have fed him perfectly. I have calculated carbs perfectly. I’ve made sure he drank plenty of water, got plenty of rest and plenty of exercise. Even with all of that, it’s still not “perfect”. There are times when no matter what I do, diabetes has a mind of it’s own. No explanation. No reason.
We do our best to count our blessings. We did catch diabetes early. We didn’t have to suffer through the frightening experience of DKA and ICU. Our introduction to this disease was more gentle. Our little guy has been amazing. Such a trooper. He has gone from crying every time I needed to stick his finger, to giving himself insulin shots. He has done amazingly well. I’m hoping it’s because we have tried to treat this cruel disease like it wasn’t going to control our lives.
Yes, we were going to do what we had to do to keep our son safe and healthy, but there was no way I wanted diabetes to change who he is or what he loves or what he dreams for his life. We tried to remain as positive as possible. Every time we get the chance, we point out people who are “in the spotlight” who have Type 1 Diabetes….Nick Jonas, Chicago Bears quarterback Jay Cutler, MLB players, doctors, nurses….we want him to know that diabetes won’t keep him from living his dreams.
Ironically, even though I was constantly telling my son that diabetes didn’t limit his potential or change what he wanted to do with his life, I wasn’t living it myself. When I say I took diabetes on, I wasn’t kidding. I took every high number personally. What did I do wrong? What did I feed him? I would go back and recalculate insulin doses.
I tried to hide my stress from my son, but it was taking a toll on me, physically and mentally. I was living and breathing diabetes every second of every day. I was letting diabetes do to me what I had worked so hard to keep from doing to my son.
It seemed that every time we visited the doctor, we had to learn an entirely new protocol and the stress was becoming overwhelming. I had to learn to let go. I had to finally realize that no matter what I did on some days, diabetes was going to have the upper hand. I had to send him off to school and trust that he was going to be ok. I had to give in and let him eat a cheeseburger and fries. I had to let him live.
I had to give up trying to control diabetes. It has taken months for me to come to this realization. It’s something I have to consciously work on every day.
I have adopted a new mantra “Management not Control”. Control just leaves me disappointed and stressed. We do the best we can to manage diabetes on a daily basis and take the hits in stride. It’s not easy. I don’t get it right every day. But I’m trying. And when I hear my now 6 year old son say to other people with a shrug of his shoulders, “we gotta do what we gotta do to keep me safe” or “gotta do it because my mom wants me to be around for a long time”, I have to hope we are doing something right.
I have to hope that we are encouraging him not to let diabetes change him or rule his life. Maybe one of these days, he will be an encouragement to someone else. Or maybe he’ll be the one who finds the cure.
We could not manage Type 1 without the support of our wonderful endocrinologist and the amazing team at Diabetes Solutions. Their support, day or night, has been priceless. We also have the best family and friends that support us on this journey. We are taking it day by day and doing our best to just live.