Life for a Child

Monday, July 16, 2012

Having Our Cake and Eating It, Too!

Every week when we go to church, Sweets goes to her classroom for her own church!

Our church is large.  The kids are broken down in the classes by age.  At the time, she was in the kindergarten room.

We had created one of our fact sheets for church.  It has the basics on it and they have an alert system and can call to come check on her if anything comes up.  Which they do!  Usually, her classroom has a wonderful lady as one of the teachers who took a liking to Sweets.  She knows about diabetes and when to call us.  She knows she wears a pump and a cgm.  She just KNOWS.  Not that she knows WHAT to do but she knows enough to look out for her and call us if needed.

A few weeks ago when we dropped Sweets off in her classroom, her teacher was not there.

This is always a tricky thing.  They have the paperwork.  Sweets is old enough now to be able to say when she doesn't feel well and to say that she has diabetes.  We're not far away.  And we are only apart for an hour TOPS.  However, I feel like I have to say SOMETHING.  Just so they know.... Because I know Sweets and although she CAN tell them she may NOT.  But at the same time... I hate having to give a disclaimer every time she goes anywhere.

So when we dropped her off at her room, I had to decide - do I tell or not?

But before I could say anything, the lady that was checking her in said, "Oh, You're the one!  You're  SWEETPEA!"

She had obviously been in the room before and read the paperwork.

But it made me feel very conflicted.

I was GLAD because I knew she would be looked out for.  I was glad they knew about the diabetes and that if anything was odd they should call us.  I was glad I didn't have to be the one to say, "My kid has diabetes and here's what you need to know..."

And I was.... Sad?  Irritated?  A little of both?  because she can't just go to church like everyone else.

She's THE ONE.

THE ONE WITH DIABETES.

I don't necessarily love that she's known that way.  Even if I do have to point it out at times for safety's sake.  Even if it does mean that I know she will at least be monitored.

I guess you can't have your cake and eat it, too.

And it's not just church.  It's like that in LIFE.

We WANT people to know about diabetes.  We WANT people to understand this disease and what it means and what it does to people.  We WANT .... We NEED people to know!  We need people to know what can happen if blood sugar is too high.  We need people to know what happens when blood sugar goes too low.  We need them to understand the physical and emotional and financial burden that diabetes places on us.  We advocate for awareness and for a cure.

And to do that... and to do it effectively we have to tell our stories.  We have to put a face with a disease.

At the same time, we don't want pity.  We don't want people to feel sorry for us.  We don't people to think we are less than capable because of a disease.  We are proud to showcase world class athletes with diabetes and we applaud their strength.  We make sure our kids can do anything they desire and that diabetes won't hold them back.

It's such a tightrope.

We need people to know and yet we don't want to be defined by it.

We need them understand and yet we don't want their pity.

We want to show that people with diabetes can do anything and yet we need people to see that we NEED a cure.

So that day, as left Sweets in her class - I just tried to be grateful that she would be looked out for.  And that while she might indeed be THE ONE WITH DIABETES... anyone who gets to know her knows that she is so much more than that.

And I suppose that it's fitting that this aspect of diabetes is such a tightrope.  Everything about diabetes is like a tightrope walk....  exercise, insulin, free carbs for lows, insulin for highs, IC ratios, correction ratios, types of food....

It's complicated.  It's exhausting.  It's frustrating.  It is what it is....

And I suppose that as long as we don't look down...

As long as we just keep walking and keep our eyes fixed on what's ahead - we'll be just fine.

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11 comments:

  1. wow. exactly what I've been feeling this week. Thank you for taking the time to write this out. it is a tight rope.

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  2. Amen! Love, love, love this post. I'm new to this diabetic crowd, but I'm learning every single day what it means. How I don't want it to define my child, but how it does and will in the world in so many ways. Awareness. And a cure. That is my mission. Thank you for this today. :)

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  3. Ya hit the nail right on the head my sweet Hallie, as always! Im glad you are there to speak my mind when I just cant find the words! Love ya, heads up! :)

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  4. That was a beautiful post, and aptly named! I keep thinking back to an experience I had with a friend who was blind from birth, many years ago. We went to dinner at a diner in New York City. First, the waiter pulled out my chair and hers. She was insulted (not knowing he had also pulled out my chair.) Then he gave me a menu. He returned a few minutes later, and asked me what I wanted to eat. Then he said "What does your friend want to eat?" She screamed at him. "I'm not deaf! Ask me what I want to eat, and I'll tell you!" This same friend, anytime she approached a crosswalk with her cane, was always looking for someone to help her cross the street. It seemed to me she wanted people to know she was blind, when she needed help crossing the street, but the rest of the time she didn't want anyone to know. With diabetes, there are times when someone else MUST know, and if you choose to withhold this information all the time, you may have to pay for it on occasion - in the way of a low blood glucose level when someone else has to come to your aid. I will now conclude by telling you that today is my fortieth diaversary! Only people in the DOC really care about that sort of thing. I am still complication-free. It also happens to be my birthday today. I spent my "sweet" sixteenth birthday in the hospital! I'm still hoping for a cure, and truly believe it will be accomplished through stem cell research. There was no DOC when I was a kid, and I'm sure glad there is one now!

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    Replies
    1. Happy Diaversary - and Happy Birthday! Thanks for sharing your story! The DOC might be the only place people really care about diaversaries but that's because we know what it takes! Be proud, my friend! Have a great day!

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  5. Thanks! Just think of all the advantages Sweetpea has. There were no BG meters or pumps when I was diagnosed. She'll be fine!

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  6. Such a paradox we have to live everyday. We need people to know and understand, but we don't want it to define our kids because they are so much more than a busted pancreas!

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  7. Amen sistA! We want people to get it. It not be all they remember about our kids.but I know Sweets her smile,charisma and personality are what makes her the ONE Not diabetes.

    Love you!!

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  8. Balance. So much about diabetes require balance. I like the tightrope analogy.

    DId you read Sara's post about camping with her family? It's the same kind of thing. My coworkers know that I have diabetes. They know to call 911 if I pass out or anything. But they don't really know how hard it is. And when diabetes forces me to call another teacher in to take over, it makes me so angry.

    Because I'm fine. Except when I'm not.

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  9. I can not tell you how many situations I've went back and forth with on whether or not to mention my daughter has diabetes. In fact, there are many cases she asks me not to and then there are times, she blurts it out. I agree that I don't want my daughter to be defined by this disease, she is so much more than a diabetic. Thanks for sharing!!

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