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Tuesday, October 19, 2010

I meant to write this post during Invisible Illness week... But for a disease that's "invisible", it sure does demand a lot of time and attention.

No matter. Here we are. And it's still as true as it was back then.

How many times since diagnosis has someone approached you to tell you a story about { enter name here } who 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.  

It's blood stains on pillows and sheets.

It's juice boxes and candy hidden all over the house and the car.
It's knowing how to use a syringe.

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 worry.

It's fear.

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.  To the sleepover.

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.

I had a conversation the other day with colleague.  I was in the office faxing Sweetpea's latest numbers to the hospital.  We'd been battling highs and lows due to illness for days and we were getting no where with the changes that we'd made.  I needed back up!  I'd been up too many times the night before.  I was tired.  It was Friday.  The end of a long, long week.  I'd already corrected a blood sugar.  Gave insulin.  Recorded the wonky numbers.  I had things to do.  Lots to get done and accomplished.  But there I was, faxing.  And the fax wouldn't work.  So I had to stand there longer to try it again.  And every minute counts at school.  Every minute.  I don't like wasting them.  

I sighed.  Mostly to myself.  Just tired.  Tired physically.  Tired emotionally.  And I said, again mostly to myself, "taking care of my child is a full time job".

And my co-worker said, "You make it look easy.  No one would know all that you do."

And she's right.

No one 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?

Don't we want our kids to be like everyone else?

Don't we want them to look so healthy that no one knows they have a chronic disease?

Don't we want them to be so happy and well adjusted that no one would guess that they make themselves bleed countless times a day?  Every day?

Don't we want them to be so active and involved that people would be surprised that they wear an insulin pump?

I think so.  

I think it's our goal.  

That diabetes won't hold our little fighters back.  

Could it be that diabetes is largely "invisible" because we do such amazing job?

We 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.  

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 we 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".    

That our kids are strong.  They are tough.  They are fighters.  

And so are we - their parents.  The people who love them.  

And then... maybe we should tell them the truth about diabetes.  Because really - don't we want it both ways?



  1. Not that I didnt before but this post made me love you even more! I was just saying this and you put into writing beautifully. We, our kids and us are effin superheros wether they get it or not

  2. Well said!!! Most people get blurry eyed when they ask what we do for Ellie. You'd think people would figure out if they can't even make it through an explanation of the care required for D...then believe me...actually doing it day after day is a little harder than doing "fine".

  3. I'm exhausted by making things look so "fine" all the time. Thank you Hallie! You took the words right out of my mouth.

    PS I wish we lived closer so I could see your amazingness in action!

  4. YOU. ARE. AWESOME!!!!

    Great post, my friend....nail on the head!

    I'm fine. Really.

  5. What a great post. And It's so true...and tough to chew. But hey, sometimes I just want my child treated like normal despite all I know goes into getting him to just feel normal.

  6. we do so all times...with lots of sacrifice.
    Hopefully when our friends and family say "I know this 5 year old boy and he is just fine" they will know enough of what we do to add "because his parents work really hard at keeping it that way"

  7. Great post and you are right Hallie. It is why we are at hockey, soccer etc...making it look easy...making Joe look like just one of the kids...invisible..."fine".

    Great post...and oh so true

  8. So, so true. You always say what we all feel! Can I just tell you how much I love that you have Guns N Roses on your playlist? Talk about a blast from the past! =) I love that song.

  9. Wow! I just can't even put into words what to say to thank you. I keep typing and deleting. But that is just how I have been feeling. Thank you!!

  10. Bravo! An amazing post! This sums it up so well!


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