My mom and I were talking the other day. As it often does, the conversation turns to something diabetes related.
She always asks me how Sweetpea's numbers are. What's been going on. And so I was explaining a how her arms seems to be a "sweet spot" for good numbers but we have had some lows... like that 45 on Christmas morning... that come out of nowhere.
She was expressing her frustration that diabetes doesn't play but the rules. They take care of Sweetpea every afternoon. They know how to bolus for food and how to treat a low... or a high. But that's it. And Mom was saying how she realizes that they don't REALLY know how to take care of her. They know nothing about basal rates and ISF's. It makes her crazy that doing the same thing one day can cause a completely different result on the next. "It just doesn't make sense!" she says.
"Mom, You've got to get over that. Diabetes DOESN'T make sense. Don't expect it to.... you'll just pull your hair out."
"It's so hard to explain to people. People ask me all the time how Sweetpea is doing. But they just don't really understand." she said.
"How is she doing?"
Seems like a simple enough question.
But it's not.
I never know what to say. It's such a loaded question....
If you don't LIVE with diabetes 24/7 - you don't know. And explaining it can be as difficult as nailing jello to a tree. Or herding cats.
BUT... I have to try. It's my JOB to try. It's my MISSION to try. (See also: If I Have to Explain...)
For all of those on the "outside" - there are a few things I want you to know.
I assume that you already know the basics...You know.... that T1's an autoimmune disease. It wasn't caused by eating too much sugar. There is no cure. She won't grow out of it.
But there's more...
I want you to know....
that there is no "good" or "bad" kind of diabetes
that diabetes is not a disease where you take your medicine and forget about it
that I think about diabetes all. the. time. I'm always thinking about what her current bg is, or what she's eating, or what she's going to eat, or wondering if she's rising or falling, or what's going to happen next.
that diabetes is unpredictable.
that diabetes is always changing.
that calculating insulin doses is extremely complicated - and it's NEVER a+b=c
that diabetes is deadly. Not in 50 years. Not if we don't take care of her. It's deadly NOW. No matter what we do or how hard we try.
that calling the hospital does not mean that her diabetes is "bad". Calling the hospital for help is a normal part of life for us. The more we learn, the more capable we are to make changes on our own. But we still call.
that when you have diabetes, there are no small illnesses. Diabetes makes a simple cold anything but simple.
that wearing a pump does not mean that you're cured or that life is easy
that the pump site and cgm site is inserted with a NEEDLE every 3 days
that having a CGM does not mean that we don't prick her fingers anymore
that we still get up in the night. Sometimes once. Often more. And I've just accepted that that is the way it is. It is not going to change.
that EVERYTHING affects blood sugar - exercise, illness, excitement, nerves, growth, hormones....
that she really CAN eat ANYTHING she wants
that sugar-free is not always better
that she MUST test her bg first. Not after a few bites. Not later. BEFORE.
that there is little room for error
that we go to the hospital every 3 months for a checkup
that I know how to handle my child's diabetes better than any nurse or doctor - not that I don't need help and advice... but I know her body and her disease
that being a perfect pancreas is pretty much impossible
that it hurts to be left out
that I don't want your pity. I don't know want you to feel sorry for me - or her.
that I want you to FEEL for us... and then take that empathy and put it into action to help us find a CURE.
that people who don't care to learn about diabetes because it's "no big deal" make me so angry steam comes out of my ears
that it costs a LOT of money
that we can never leave home without our supplies - it's life and death
that nothing is as easy as before... not holidays, not school, not church, not playdates, NOTHING
that diabetes changes EVERYTHING
that you can't - for a minute - let your guard down or get "lax" in your care or attention to detail
that I am tired
that I often look like hell, can't think straight, sport dark circles under my eyes, don't hear what you're saying... because I live in a parallel world where diabetes hijacks my brain from time to time... and my energy.
that my husband and I rarely have time together... alone. Date nights are pretty much non-existent. So, while I will genuinely happy for you that you get to go away for your anniversary or that you got to go out together for dinner and a movie - I'll also be very jealous!
that I don't mind answering your questions.... BUT -
that I really don't want to hear about your Great Aunt Sue who lost lost both of her legs and went blind
that I do NOT want to hear about cinnamon or some tree moss (see Joanne's video) that you think is going to cure her. If it was that simple do you really think I wouldn't know?
that no, I'm really not glad she "got it so young" and that "she'll never remember life before". No, that's sad.
that you have no idea How Lucky You Are
that my medicine cabinet is taller than I am
that it is incredibly painful to hold your child down to give her shots or insert pump or cgm sites
that I've already cried enough tears to fill an ocean
that it does get better with time
that it will always hurt
that I will FIGHT for my child and her health
that I will never let diabetes stop her or hold her back
that diabetes makes you stronger
that my daughter is the bravest person I know
that while I long for you to "get it" and to understand this crazy new life we live.... I also pray that you are ALWAYS an outsider and that you NEVER experience this first hand.