Every week when we go to church, Sweets goes to her classroom for her own church!
Our church is large. The kids are broken down in the classes by age. At the time, she was in the kindergarten room.
We had created one of our fact sheets for church. It has the basics on it and they have an alert system and can call to come check on her if anything comes up. Which they do! Usually, her classroom has a wonderful lady as one of the teachers who took a liking to Sweets. She knows about diabetes and when to call us. She knows she wears a pump and a cgm. She just KNOWS. Not that she knows WHAT to do but she knows enough to look out for her and call us if needed.
A few weeks ago when we dropped Sweets off in her classroom, her teacher was not there.
This is always a tricky thing. They have the paperwork. Sweets is old enough now to be able to say when she doesn't feel well and to say that she has diabetes. We're not far away. And we are only apart for an hour TOPS. However, I feel like I have to say SOMETHING. Just so they know.... Because I know Sweets and although she CAN tell them she may NOT. But at the same time... I hate having to give a disclaimer every time she goes anywhere.
So when we dropped her off at her room, I had to decide - do I tell or not?
But before I could say anything, the lady that was checking her in said, "Oh, You're the one! You're SWEETPEA!"
She had obviously been in the room before and read the paperwork.
But it made me feel very conflicted.
I was GLAD because I knew she would be looked out for. I was glad they knew about the diabetes and that if anything was odd they should call us. I was glad I didn't have to be the one to say, "My kid has diabetes and here's what you need to know..."
And I was.... Sad? Irritated? A little of both? because she can't just go to church like everyone else.
She's THE ONE.
THE ONE WITH DIABETES.
I don't necessarily love that she's known that way. Even if I do have to point it out at times for safety's sake. Even if it does mean that I know she will at least be monitored.
I guess you can't have your cake and eat it, too.
And it's not just church. It's like that in LIFE.
We WANT people to know about diabetes. We WANT people to understand this disease and what it means and what it does to people. We WANT .... We NEED people to know! We need people to know what can happen if blood sugar is too high. We need people to know what happens when blood sugar goes too low. We need them to understand the physical and emotional and financial burden that diabetes places on us. We advocate for awareness and for a cure.
And to do that... and to do it effectively we have to tell our stories. We have to put a face with a disease.
At the same time, we don't want pity. We don't want people to feel sorry for us. We don't people to think we are less than capable because of a disease. We are proud to showcase world class athletes with diabetes and we applaud their strength. We make sure our kids can do anything they desire and that diabetes won't hold them back.
It's such a tightrope.
We need people to know and yet we don't want to be defined by it.
We need them understand and yet we don't want their pity.
We want to show that people with diabetes can do anything and yet we need people to see that we NEED a cure.
So that day, as left Sweets in her class - I just tried to be grateful that she would be looked out for. And that while she might indeed be THE ONE WITH DIABETES... anyone who gets to know her knows that she is so much more than that.
And I suppose that it's fitting that this aspect of diabetes is such a tightrope. Everything about diabetes is like a tightrope walk.... exercise, insulin, free carbs for lows, insulin for highs, IC ratios, correction ratios, types of food....
It's complicated. It's exhausting. It's frustrating. It is what it is....
And I suppose that as long as we don't look down...
As long as we just keep walking and keep our eyes fixed on what's ahead - we'll be just fine.