Diabetes is known as an invisible disease. A disease that even though you can't tell from the outside is still with us every day, however for a disease that's "invisible", it sure does demand a lot of time and attention.
I cannot tell you how many times since diagnosis has someone approached me to tell me a story about someone they know that has diabetes?
It seems like EVERYONE knows someone. It's someone in their child's class. A boy on the soccer team A girl at church. A friend of a friend. Their cousin. Their Grandma.
And the story usually ends with "and he/she is doing JUST FINE!"
First, let me say that it is so nice of people to want to make that connection with you. It's so nice that people care enough to tell you their story. They just want to help. They don't know what to say. I get that.
And I smile and nod and say, "That's great!".
And I mean it.
But I can't help but think....
I want to scream, "Do you know what it takes to look to the outside world like you're "doing just fine"?"
It's endless counting or every carbohydrate that is consumed - or is being considered for consumption. And sometimes counting a meal multiple times because the numbers all run together after a while.
It's test strips. LOTS of test strips, in fact we go through over 600 test strips in 90 days. If you do the math that roughly 7 strips per day, not counting when we don't get quite enough of a blood sample on the test strip and have to start over.
It's juice boxes and candy hidden all over the house and the car.
It's knowing how to use a diabetic pump and gosh forbid we ever have to use a syringe again. Parents of children shouldn't need to know how to use syringes.
It's knowing how to argue with the pharmacy. Or the insurance company. Or the school. Or the ignorant person you encounter.
It's sleepless nights. Lots of sleepless nights.
It's logging numbers.
It's looking for patterns in crazy numbers.
It's taking a gamble with an insulin dose. Which is really taking a gamble with your child's health.
It's saying no when you really wish you could say yes. To the treat. To playing with friends.
It's tagging along because no one else knows how to care for diabetes.
It's writing health plans.
It's giving special instructions.
It's being different.
It's knowing your way around the hospital.
It's getting good at injecting your child or inserting needles into his or her skin.
It's getting used to the sight of blood.
It's all this and so much more...
The outside world doesn't know what it takes to look "fine".
It's so frustrating. I WANT people to know all that we do. All that we HAVE to do to keep our kids alive.
Not because I think we deserve special treatment or a medal or something.
But because I'm sick and tired of people hearing "diabetes" and thinking "no big deal".
Thinking that she'll grow out of it.
Thinking that she ate too much sugar.
Thinking that it's easily controlled.
Thinking that it's NOT a life threatening disease.
I want them to know the truth.
Because no one actually knows. All that we do is largely invisible.
And while I wish people understood what Type 1 truly is....
Isn't that what we're going for?
We want Morgan to be like everyone else?
We want her to look so healthy that no one knows she has a chronic disease?
We want her to be so happy and well adjusted that no one would guess that she has to make herself bleed countless times a day? Every day?
We want her to be so active and involved that people would be surprised that she wears an insulin pump?
I think so.
I think it's our goal.
That diabetes won't hold her back.
Could it be that diabetes is largely "invisible" because we do such amazing job?
Diabetic parents don't give ourselves enough credit. We all are hard on ourselves. We strive for good numbers and low A1c's.... We don't get a break for growth spurts or illnesses. We feel failure every time we see a certain number staring back at us. And we hide that emotion for fear of transferring it to our kids. The fear of actually losing it in public when fighting for your kid...(this actually happened to me yesterday).
It's hard to be a pancreas. No, it's impossible. It's not a job that we can ever do perfectly. Although we think perfection is the standard.
Maybe... when people tell us about someone that is "doing fine"....
Maybe we should still smile and say, "That's great!"
Maybe Jason and I should take it as a compliment when people assume it's easy to control.
Maybe we should smile to ourselves because we know the "secret".
My girl is strong. She is tough. She is a fighter.
And so are we - her parents. The people who love her.
And then... maybe we should tell them the truth about diabetes. Because really - don't we want it both ways?