The morning of the show I dug through my stack of posters I have used at previous Team Ben fundraisers. I chose some fun pictures of Team Ben at the triathlon and others with facts about T1. Ben and I put on our Team Ben t-shirts and packed up the car.
When we arrived at the studio and as we unpacked the car I asked Ben to hold out his arms. One by one I stacked the posters on his outstretched arms and then asked him to carry them into the studio. I, of course, was a little anxious (I hate speaking in public) and I did not pay close attention to how I stacked these posters. So as we were walking across the parking lot I was startled when Ben asked, “Mommy, what does complications mean?”
Right on the top of the stack, right under his nose, with no where else to look, I had placed this poster:
ACK! You idiot!
In an attempt to hide my crushed mother-heart, I nonchalantly replied, “Oh, those are just some of things that can happen to some people with T1 who don’t take good care of themselves. But don’t worry too much. You are doing and excellent job.” And then like any true coward, I walked away ending the conversation.
Up until that very moment we had never discussed T1 complications with Ben. Complications were things that happened to other people. We have always focused on the very, very short term … today. Ben knows what his blood sugar should be and he knows if it goes to high he feels badly and if it goes too low he feels really, really badly and scary things can happen. That has always felt like enough for a young boy to worry about. And to be honest, that was enough worry for me too.
Thinking about potential T1 complications is something I have always purposely avoided. I know they exist but giving them anymore thought has always been painful, sad and most of all SCARY. I have spent hours (and hours) reading text books and researching how to properly manage blood sugars, but I have spent less than 10 minutes trying to understand potential complications. And those 10 minutes were spent creating this poster. I googled “type 1 diabetes complications”, found this list and created the poster. And to be honest, I don’t know what half those words really mean.
Fast forward to this week, I had an appointment to see my eye doctor. Jeff had recently brought Ben to see the same doctor for his first real eye exam. Neither of us really understood what the doctor was looking for in Ben’s dilated pupils. We knew we were supposed to bring him but it was never clear to me exactly why.
As I waited for my pupils to dilate and waited for doctor, I thought about Ben, his eyes, his diabetes, the poster, and his questions. Eventually, the doctor entered the exam room. He shined lights into my eyes and quickly concluded everything looked fine. As he was typing his notes into the computer he asked, “Do you have any questions?”
I was about to say No, but I didn’t. I decided it was time to be brave. I started with a fairly long drawn out, “Well …..”
“I do have a question … but not about me. It’s about my son. He has type 1 diabetes.”
“Oh, what would you like to know?”
“I know one of the potential complications is eye damage, but I don’t really understand what that means.”
“Yes, a potential complication is retinopathy.”
“Right. But what is that? … other than a very scary word.”
The doctor was so sweet. He pulled up a picture on his computer of an someone's perfectly healthy eye ball. He showed me all the blood vessels. He explained that high blood sugars can cause small hemorrhages.
“And does that kill the eyeball and cause blindness?”
“Not exactly.” He explained that the hemorrhages cause the blood vessels to contract and tighten up which in turn can cause the retina to detach. “But,” he quickly added, “we can treat this. There are lots of new treatments that we can do right in this office. We should see your son every year and if we see any problems we will treat them right away. If your son develops retinopathy it does not mean he will become blind.”
He added years ago within 15 years of diagnosis someone with type 1 we would develop retinopathy. But he reassured me that he sees lots of patients that have lived 15, 20, even 60 years and their eyes are perfect.
I thanked him. And as I was starting to pack up my things he said, “Diabeetus, is a tough one. Good luck. I will see you and your son next year.”
I felt so much better. This doctor had turned a very scary word, retinopathy, into what it really is … just a complication … a complication we can handle.
Knowledge really is power. I can no longer live my life believing bad things are what happen to other people. We already have proof that just isn't true. So I figure I can’t stop here.Next up … What the heck is nephropathy?