Last night before bedtime, when I checked Rocco's blood sugar and reached for his pump to give him insulin, I noticed that Zeke was hanging on my shoulder watching. Not only watching but actually looking and commenting. "Uh huh, 213 blood sugar, uh huh, zero carbs, yep, 0.7 units, yep..." These were his comments as I pushed the buttons. I realized that he was learning. He is a visual learner, which means once he actually sees something, it sticks. He usually remembers it.
Then, as I put them to bed and walked downstairs, I wondered, as I often do, how all this diabetes stuff is affecting my non-diabetic Zeke. It is natural to focus on Rocco and how the experience of diabetes is affecting him. It is easy to be consumed by the pain Rocco sometimes feels. That pain is physical and visible.
However, it is more difficult to focus on what Zeke feels. It is so hard to sink my teeth into his pain or compassion he may feel for his brother or himself. I know this blog is mainly about Rocco and the disease he and I live with every day, but what is going on with Zeke might possibly be more interesting.
When I asked my husband and my mom to describe how they thought Zeke was affected by Rocco's diabetes, they both said "fine I guess". I felt the same way.
You see, Zeke is a simple kid. He doesn't carry around a lot of heavy emotions or even needs. He likes simple things and has appropriate simple boy thoughts. His integration into a diabetic lifestyle was seemless. He makes it easy for us all to care for Rocco. Only once he said " I wish I had diabetes so I could get all this attention". I felt terrible so I said, "oh, buddy really?". Then he looked up at me with a devilish joking grin and said "AND ALL THAT CANDY!!". Then he laughed a silly laugh. Stinker!
One time, when the boys were three, we needed to give Rocco a shot with a syringe. Because we almost always use his pump, We hadn't had to do this for a while. But it was apparant that both boys remembered the trauma associated with a shot. Even though we tried to hide the needle, Zeke saw it. He yelled at Michael, who was preparing the injection, "Don't do it, don’t you hurt my brother!" He was very angry, but he was only three and he knew couldn't defy his dad, so he grabbed a blanket, covered himself up in it, laid down next to us and cried. It was truly heartwarming and gut wrenching.
From the age of two through five, Zeke had this uncanny habit of acting goofy at bedtime when Rocco was low. This goofiness would keep them both awake in their room. When we heard them giggling and acting silly, this would alert us to go to their room to check things out. Sure enough, Rocco was usually low. We thought nothing of this at first, but once we noticed this pattern, we were truly amazed. Was it a twin thing? Was Zeke trying to tell us something through his goofy behavior? Whatever it was, it made us wonder how much Zeke knows. How much does he understand about what’s going on with his brother’s diabetes? And what does Zeke think about all of this?
Finally, there was the time we went skiing when the boys were four. They had spent the day in ski school and then playing with their cousins. They were exhausted. When we put them to bed that night, Zeke was mumbling half asleep as he settled in for the night. Normal kids often babble, so we didn’t pay much attention at first. Then, Michael and I honed in on his words, and he was babbling blood sugar numbers- "If he's 242, he's high, if he's 346, he's high, if he's 52, he's low, if he's 120, he's perfect..." it went on and on. He didn't know we were listening. It was amazing to hear him get all the highs and lows right. It was then that I realized that Zeke had diabetes too. Not physically, of course, but through some kind of strange osmosis.
This little guy has seen and heard it all. Every poke, every port change and every counted carb. He experienced everything that diabetes had to offer except the physical parts of it. He was the punching bag, sometimes literally, when Rocco was high and feeling grumpy, often taking out his frustration on Zeke. On the flip side, when Rocco was low, Zeke finally tasted ice cream, fruit snacks or juice because Rocco needed some carbs!
When we got Rocco his pump, the boys were two. The hardest part of the decision to get it was how we would keep these two-year-old busy-body, wiggle worms away from the pump controls. It was electronic, it had buttons, it had a cord, it was attached to one them! We put the pump on Rocco for the first time and the boys had one of their wrestling matches the next day. I was the mother bear overseeing the wrestling cubs. My fear was that one of them would rip it out. But nothing happened - nothing. They just seamlessly worked around it as if it were a shoe or a watch. And this has been the case ever since. How did they know how to respect it?
I couldn't help my curiosity so yesterday, I asked Zeke, "What do you think about Rocco having diabetes?" I wanted to keep it vague so as to not lead him to his answer.
He simply replied, "It’s pretty cool." "What do you mean by cool?” I asked. "I mean I am starting to understand it now. Like, if you’re high, like 300, you want 0 carbs and you need some insulin. But if you’re low, like 60, you need to have some carbs. But if you’re perfect, you don't need any carbs or any insulin to try to stay perfect."
I think he was trying to say that the process or the science of diabetes was cool, kind of like a puzzle, now that he understood it.
Then he said, "If I had it, I would die!" I could tell he meant he wouldn't be able to handle it. I said, "No, you would be just as good at it as Rocco is."
It may be many years before I truly know how Zeke really feels or how he has been affected by it all. I am sure I will find out when it's "bring your mom to therapy" day at his therapist's office!
I only hope and pray that I am being as careful and as genuine with him as I try to be with Rocco. Having twins one with diabetes and the other without sure can throw a girl for a loop, I'll tell ya.
Sometimes, I let Zeke check Rocco and give him insulin. I go with the theory of being included in anything always makes you feel special. He likes it and takes the job very seriously. However, they usually giggle through it!