There are times with this disease when I think things aren’t so bad. Riley is healthy. He’s happy. A lot of the time his sugars obey (for the most part).
He swims. He runs. He laughs. He does all the things a normal 5 year old does.
Yep, sometimes I can fool myself into thinking everything is fine. I look to the future and see the awesome possibilities.
Then, we have a few days of high sugars, very stubborn sugars. I try not to let them get me down. But, they do. I worry about those highs and what they are doing to his body. Those are the times I look to the future and worry about complications.
Or, there are the little conversations that pop up from time to time. Like a month or so ago when Riley’s sugar was high. He is good at telling us he’s hypo, but he seems to not really notice when he’s high.
When we were trying to get him to recognize his lows we would ask him how he felt when he had them. He said his head felt funny. Eventually, he came to realize that when his head felt funny his sugar was low.
Michael was trying to do the same thing with Riley’s high sugar. He asked Riley how he felt. Riley responded with, “Kind of like I feel when I’m low.”
“What do you mean, it kind of feels the same?”
“I don’t know.”
There was a long pause and then Riley said, “Dad?”
“I wish you had diabetes.”
“Because then you’d know what it feels like and you wouldn’t have to ask me all the time.”
Or, just a few days ago Riley was talking with Michael again. I’m not sure exactly what the conversation was, but during the course of it, Riley said something to the effect of “when I’m older and don’t have diabetes anymore.”
What do you do with that? As a parent you don’t want to dash your child’s hope. But, you don’t want to give them false hope either.
How do you teach a 5 year old that it’s OK to hope for a cure, but not to expect one? It’s not easy.
It used to be his magic number was 10. He’d often say, “When I’m 10 I won’t have diabetes anymore.” I just hope he has a crystal ball that I don’t know about.
Yes, most of the time, I can fool myself. Most of the time I think things aren’t so bad.
But, not today, today I feel the weight of this disease bearing down on my child. Today I want to cry because I know the future won’t be easy for him. Today I want a cure more than I have in a long time.
Today, I’m tired of waiting. I'm tired of being postitive. I'm tired of being upbeat. I'm tired of my child having this disease.
I can't be positive. I can't be upbeat.
Not today. Maybe tomorrow.
But, not today.