"I'm NOT going back! You can just home church me!"
This was A's reaction to going back to church after the fiasco a few weeks ago.
You may remember me mentioning this little incident in my post about our Nightscout/CGM in the Cloud experience. But maybe I should start from the beginning...
A has always been a little nervous about going somewhere new or doing something without us... if it involves her being taken care of by people who don't know anything about diabetes. While she's really doing a great job of learning and doing some of her own care, she's not yet able to be self sufficient and she's not confident in her abilities.
She just feels safer when she knows that the people in charge know she has diabetes and understand what to do.
Church is not much different than school. We have informed the folks in charge about her diabetes. We created information sheets that explain type 1 and have specific instructions for what to do. Those sheets stay in her classroom. Samples of those information sheets can be found to the right under the "School and Other Caregiver Info" tab!
Our church is large but we have a great notification system for when we are needed.
And we're needed a lot! They know us at the main desk. We don't get through too many services without her needing us for something. I have no idea why... Maybe it's the dancing to the music or games they play or just the air... She can be perfect all day and go to church and need something.
It has never been an issue.
And she's been in the same room for a whole year.
Of course, I thought we had just gotten to the place where she felt comfortable. She wasn't scared that she would need us and no one would listen to her or understand. We had gone through these scenarios with her when she worried. We had talked about how she should handle it. But we had reassured her she would be fine.
We usually go to church on Saturday night. But we decided to try Sundays because we've had so much going on. The first Sunday was no problem. The second Sunday was a disaster.
I don't go in with her to this room. Unlike the younger rooms, parents drop the kids off at the door. And I've stopped telling the people about her diabetes. I hate making it a bigger deal than it needs to be. I know that, even though she is sometimes nervous, she also doesn't want to be pointed out as different. I've working on giving her Independence.
So this week we dropped her off and went into the big room for our service.
As I was sitting there, I started thinking that she really should take her kit with her now. She carried it during FFL and it wasn't a problem. And I could even make a little laminated card to attach to the three rings inside that is a little cheat sheet. A "If you are this number.... eat this..." kind of thing.
Our service was over and we went to pick her up.
Jason even commented that he was surprised we had made it through without being needed!
I got to her room and Sweets was standing there waiting for me. She's usually playing so I knew something was up.
"MOM. I'm low. I beeped low and no one would listen to me."
I looked at her Dexcom.
What in the world....
So I gave her some smarties and asked her what happened.
"I beeped low. I told the teacher and she said I was fine. I said I needed you and that I was beeping and they said that my parents could change my battery later. I went to another teacher and they wouldn't listen either."
So.... you can imagine, right? The steam rising? The anger building? Mama bear mode...
But.... at the same time, I knew we were at a different service than usual and they didn't know her as well. I knew that they didn't do it on purpose. I knew they just didn't know better.
EVEN THOUGH... there's no reason for them NOT to know because the paperwork was there. EVEN THOUGH... they could have killed her.
I had Sweets point out the lady who she had told and we went over to have a little chat.
Don't worry - I was very nice and kind. But I did make it clear in no uncertain terms that this could NEVER happen again, that she could have DIED, and the paper work is in the room and needs to be read.
She was very nice. She felt bad. She didn't do it on purpose. She's just a volunteer.
Which is great and all.... but she still put my child's health in danger.
I'm trying to be understanding.
I also went to the main desk to talk to the person in charge of the children's ministry. She, gladly, knew right away that what happened was unacceptable. She immediately went to the room to talk to the volunteers. And promised that it would not happen again. I appreciated her support.
So, I think the situation has been resolved. I think the paperwork has been pointed out again and there's been a little education.
I'm not mad.
I'm more... tired. Exasperated. Frustrated. Sad.
Because this is just another reminder that we can never really let our guard down.
Not even for an hour at church.
But what is worse than that... is that Sweets doesn't feel safe.
Her fears were realized.
She did everything she was supposed to do... and no one listened.
And she is NOT happy about going back.
But, we think that with having her take her bag and new little cheat sheet... AND with us watching her bg the entire thanks to the Nightscout, she's willing to give it a try.
Not that she really had a choice, but...
This is just another lesson in this crazy life with T1D...
that mistakes happen.
that people don't listen and do what they are supposed to do.
that you've got to be responsible for yourself.
and that no matter what, you've got to pick yourself up, dust yourself off, swallow your fear and try again.
Even if you are only eight.