...free write...
It hit me this evening.
It's nothing that I don't already know; that I don't already see.
But, none-the-less, it hit me this evening.
Bean was in the bath tub. I was helping her wash her hair. And for whatever reason, her pod, dexcom sensor, and medical alert bracelet seemed larger than life. It was like they were screaming 'look at me.'
Diabetes is always there; always a part of her.
During bath time, when (even though they are water proof) we have to be aware to not over soak adhesive so her pod and dexcom sensor don't prematurely let loose.
During dance performances, when we try to position her pod so it's not totally obvious in her cute costumes.
During Drama Club performances, when her pod alarms during a scene and I have to leave the audience and run around back stage to find her PDM to deactivate it so the wonderful beeeeeep that she's trying to muffle will shut up.
During school, when I get a call over the radio to ask about the carb count for a random birthday cupcake; or when I get a call because she's low before recess; or when I have to help her do a pod change because she's alarmed just sitting in class doing her work.
During meals, when she has to decide before one bite goes into her mouth everything she's going to want to eat, including dessert, so we can calculate the correct carbs so her PDM can deliver the correct amount of insulin.
During sleep, when she pulls her finger away because she knows I'm going to poke it; or when she has to down a juice box that she won't remember drinking in the morning; or when she wets the bed because of a high that won't budge.
During playtime, when she has to stop and test her blood sugar because she feels low; or I have her stop and test because she's being overly obnoxious to her sister and I'm pretty dang sure it's because she's high.
During overnight events, when I have to go or she doesn't get to and we have to pack TONS of stuff for 'just in case' events that might happen that no one else has to worry about.
During every second of every day of her life.
She never gets a break.
Never gets to take a minute, much less a day, off.
Never gets to eat without testing and dosing.
Never gets to leave the house without her kit.
Never.
Not until there is a cure will Bean ever have a moment without Diabetes being a part of her.
I know this; have known this for almost 21 months now.
It's nothing new.
It just hit me again this evening and it sucks.
It does suck and it hits me more times than others as well. We are about the same amount of time as you since diagnosis. Last night as I gave Natalie a bath I saw the new bruises on the new area of shots we have been using. It had been one little area free of bruises and marks and to see her little body just keep getting marked up is heartbreaking. I'll take a cure anyday.
ReplyDelete:o( hugs, my friend. I hate when that thought hits me...it seems to come out of nowhere sometimes.
ReplyDeleteHi Denise
ReplyDeleteI was sitting here eating my soup when I realized hey I could see how you guys were doing. Yes I agree diabetes does "....." So I thought I would tell you about a book I am reading which was suggested to me in order to help someone else.
It's called Growing up with Diabetes, what children want their parents to know by Alicia McAuliffe
I also have a question about Bean, has she ever been afraid to go on a sleep over?
Your FNP
Reality bites, my friend . . . it really does :(.
ReplyDeleteI'm with ya - I hate explaining to new friends, that's when the everyday hits me like a brick, especially when I go into - "I don't mean to scare you, but if she were to go unconscious this is what you do." Weighs on me like a ton of bricks every time. Sleep overs are huge here, it was alright because they were all next door with good friends/neighbors, until this year. I gave in and let her go on the other side of the "hill" there was a ground storm, they lost their phone, they were stuck due to drifting, a friend had to go get her for us. It was all okay, but was a sleepless night and a worrisome next day when she couldn't back. She got back around dinner safe and sound, a little high.
ReplyDelete