This week is the annual National Invisible Chronic Illness Awareness Week. There are so many people who see my daughter time and again and have no idea that under the surface is a medical condition that affects every second of her life. As I began writing this post I thought that it would be a perfect fit this week.
I realized recently as I observed my daughter in the play yard when I popped in to check on her at lunch one day, that what used to be an invisible illness has actually become much more visible lately.
Let me back up.
When a child is on multiple daily injections (MDI), you might see that child getting an injection at meal or snack time. But at other times of the day there is nothing visible saying “Look over here! I have diabetes.” Well, unless you count the medical ID bracelet (which Q gets compliments on all the time by people who don’t realize it’s a medical ID until Q says “It’s my diabetes bracelet. I have diabetes.”).
Q went about her life with diabetes for about 18 months on MDI at which point we decided to get an insulin pump.
People have varying reasons for choosing the pump they choose and I’m not going to get into a debate about the merits of one pump versus another. But for our family and our daughter, I just couldn’t see getting a pump that required long tubing. To me that wasn’t freedom. Not for my young swimming, dancing, ice skating, tumbling, active child. I didn’t want a pump that would have to be disconnected during activities because any time away from the pump is time that you are not getting insulin.
For a good year-and-a-half she chose to wear her pod on her tummy (placing the cannula toward and away from her belly button -> 4 sites), low back (2 sites), and the top of her tush (another 2 sites). While the pod was worn in those places, it was mostly invisible and rarely noticed by anyone.
When I got a peek of it as she hung from the monkey bars or while doing cartwheels I often wondered if other people noticed this small white thing stuck to her body, and if so, what in the world did they think it was.
After months of suggesting her arm as a good spot for her pod, she gave in this spring and it has now become her favorite spot to wear it. (And ironically her tummy used to be her favorite spot and now I have to insist that it get a little bit of rotation.)
I know a lot of kids wear it on their arms without anything covering it, but at first Q said it felt wobbly. Probably because she just wasn’t used to it there. She has a couple of pink Super Girl sweat bands we picked up at an amusement park as well as a bunch of Bands4Life that she uses to keep it in place. But a lot of the time she just wears it on her arm exposed for everyone to see. (And now with the CGM, often she has a pod on one arm and a sensor on the other.)
I know some adults and some children try to hide their diabetes (and diabetes accoutrements) from others, but for Q she wears them with pride. And if someone asks what that is on her arm or on her exposed tummy, she just says “That’s my pump.” and continues on with what she’s doing.
The monkey bar photo is from her You Can Do This Project Video.
The two images pointing out her supplies is from the post “More Than Meets the Eye.”
Visit the National Invisible Chronic Illness Awareness Week website.
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