I don't know...
That's the answer Sweets gives when someone asks her about her diabetes or what she's doing when she's testing or what the stuff is attached to her body.
"I don't know." Then she looks away and makes it clear that the conversation is over.
She doesn't do this at school. She doesn't do this with friends. Not with people who "know". And as you've seen through some of our videos, she has no trouble talking about it.
Maybe it's because they already know and are comfortable with it. Maybe it's because we read the Coco book to her class and explained it all to them.
But when it comes to an "outsider" - she just does not want to talk about it.
It happens at gymnastics a lot. She wears a little leotard that is impossible to hide anything under. We found one with a black bottom so you don't really notice her pod unless you LOOK for it. (Which, by the way, has made us all love the Omnipod ever more! The ability to "hide" it has been a big deal - a lot more so than we ever expected when we first switched.) And we don't make her wear the Dex receiver. But we've put the sensor on her arm for the winter when it's hidden under long sleeves. Works great - except for gymnastics. And the other girls ask what it is.
It happened this weekend at cheerleading. I was testing her blood sugar during their half time snack. The little girl sitting next to her asked her what she was doing.
"I don't know" was her response.
I whispered to her that she didn't need to be embarrassed. That it was ok to tell her what it is and explain it.
"I don't want to. You do it." she said.
Which is fine... I don't want to force her into talking about diabetes if she doesn't want to. But I also don't want her to be ashamed or embarrassed.
So I don't know either. I just don't know what to do about it.
For now, I just haven't made it into a big deal. Or a deal at all, really. I just keep telling her she doesn't need to be ashamed or feel embarrassed. I tell her that the kids just want to know because they've never seen it before. They are just curious.
I think she gets that. I think she just doesn't want to talk about it to other people.
It's like she feels really comfortable talking about diabetes to the diabetes community. But it's just too much to tell everyone else. People who don't get it and don't understand.
I understand. I feel that way sometimes, too.
I'm sure this is a normal part of growing up with diabetes.
It's just that as a parent, I feel so responsible for her well being. I feel so incredibly responsible for her health. And I feel so incredibly responsible for making sure she is a well adjusted kid who grows into a well adjusted adult who is capable of dealing with everything that diabetes throws at her - both physically and emotionally.
The thing is... I can tell her until I'm blue in the face that it's ok to be open about her diabetes. I can tell her how awesome she is and how brave and how cool it is that she can test herself and take care of herself. I can tell that she's amazing and that it doesn't matter what anyone thinks about her or her diabetes.
But even at age 5, she knows that I'm Mom. And that's my job. And that it's just different with other people. And that I don't get it because I've never been 5 and had type 1.
Which is why I think it's so fantastic that Kim from Texting My Pancreas made THIS VIDEO.
Go on... click over and watch it. I'll wait.....
See? Super cool.
I don't know what to do for Sweets. I don't know what else there is to do...
But I know that she needs other people with type 1 in her life. People of all ages. All genders. People who really do get it.
She watched this video with me. She loved that Kim has diabetes - just like her. And she listened.
Is she going to go out and explain to everyone she meets about diabetes? No, probably not.
But she still needs to hear it. She needs to hear that it's ok to have diabetes. And she needs to hear it from someone other than me.
So to Kim and all the other adult T1 bloggers out there... THANK YOU.
I've said it before and I'll say it again. You provide for her what I can't. You get it. You can guide her through life in ways that I can't. Please keep blogging and vlogging and doing your thing. You have no idea how important it is to this next generation of T1's. And you have no idea what it means to me!
The things I don't know about diabetes and raising a child with diabetes could go on until eternity.
But this I DO know... The DOC is amazing. The support is incredible. And I'm so lucky to have all of you to walk this road beside me. Because of you, Sweets will be healthier both physically and mentally.
What a wonderful gift!