Tuesday, December 14, 2010

It’s in the eye of the beholder

We check blood sugars around here like…a million times a day.

It is seriously no big deal. The blood…the poke…the test strips laying on the counter like wounded soldiers…it all doesn’t even faze us.

But throw another person in the room, a person who is not a member of your immediate family…a person who is an “outsider” in the diabetes world…and all of a sudden that million times a day moment blares like fog horn to your consciousness.

If someone else is watching us do a blood sugar check, or a set change or anything else, the craziness of what we are doing isn’t lost on us.

That is because we attempt to see the moment through the eyes of the visitor. When we do something as personal as taking care of our child’s well being, it can be hard, even agonizing, to share that with an outsider. Because once we do…we can’t pretend it is the most normal thing anymore. All of a sudden, the life saving things we do for our children…are weird. Or sad. Or any number of unpleasant emotions.

Even with Endos, when we let them into our world…we try to look at our life through their eyes. They don’t have the full picture of what has been going on in our home. Sure they have graphs and charts, but these things don’t tell half the story. Going to the endo is agonizing because we know we are going to have to explain our diabetic life to them…Our personal day to day, play by play, war with this disease. We battle so hard, it breaks our heart to think that our Endo may think we haven’t battled hard enough. We look at the information through their eyes and we know it doesn’t look good. And it makes us feel unfit to be pancreases.

But I digress.

B had a friend over last week.

We did everything in our power to make our family look as normal as we feel. It was set change night and we even postponed it until the next morning because the boys had enough insulin in their reservoirs and their numbers going to bed were brilliant.

We even skipped the 1:00 check.

My hubby and I went to bed at 11:30, and since the boys’ numbers continued to be brilliant, we thought we could skip that check and not disturb the boys in their makeshift tent.

So much for trying to be “normal.”

B woke up WHITE. He didn’t look good, he didn’t feel good and he said he threw up.

Check blood ketones…4.1

Checked site…full of blood.

He hadn’t gotten any insulin for how long? He was feeling it…and he was looking it.

So all the attempts of looking like the normal family flew out the window.

We had to do a million blood sugar checks.

We had to change his site.

The kid threw up, remember?

He was pale and as sick as he could be. He didn’t feel like playing. He wanted to lay on the couch. His plate of pancakes, eggs and bacon sat at the table alone, devoured only by the gravity of the moment and the empty chair sitting in front of it.

Crap like this happens MAYBE once a year. Maybe. And of all the nights it had to happen…

Is it any wonder that the little boy who slept over called his mother to pick him up early?

I went through the entire morning, witnessing the events through this boys eyes. I couldn’t wrap my head around what he thought of it all…but I know it was uncomfortable for him. No, we didn’t do set changes right in front of him. But we were running around worried, grabbing pumps from everyone and checking sugars constantly.

I didn’t like seeing it through his eyes.

It was sad. It was weird. It was not what I see.

Because what I see is an ordinary family, doing extraordinary things…that they have done SO many times…they seem ordinary.

In our bubble, we are normal as all get out.

But in the eyes of the beholder…in most cases…we are not.

Do I know that this little boy was uncomfortable? No.

Maybe he was just bored and I was reading too much into it.

The bottom line is…trying to guess what people are thinking of my family is exhausting. And a craps shoot at that. Does it really matter if people feel sorry for us? Does it really matter if a parent thinks I’m over protective, or a teacher thinks my son’s numbers always have to be perfect, or an endo doesn’t understand why I don’t just change basals rather than compensating for said basals through carb ratios?

Does it matter?

Only if I let it.

And I shouldn’t let it.

Because the only beholders eyes that matter are those of my sons…and my husband…and my very own.

As far as I behold…we are making the very best of a crappy situation.

As far as I behold…we are a blessed and happy family.

As far as I behold…blood sugar checks are no big deal. It is what it is.

As far as I behold…my boys lead happy semi-normal lives.

Which begs the question dear readers…

What else matters?

19 comments:

  1. When I was a kid (before diabetes was cared for the way it is today), I spent the night with a friend and had a severe low in the middle of the night. They had to call my mom to come get me and everything. Our normal isn't normal for everyone. But it's normal for us. And as long as we do our best to help people understand what our "normal" is, that's all we can do.

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  2. Aw. I'm so sorry D had to rain on the sleepover parade. Made me sad that the boy chose to go home early. :(

    It's so true that to us it's all normal, then outside the bubble the normal doesn't seem quite so, despite how many people know and may even understand. Somehow it feels like the eyes are always looking and wondering and who knows what thoughts are going on behind those eyes.

    But the reality is that your boys do lead very, very normal lives despite this very un-normal thing in it. As you said, something like this happens maybe once a year. Even though seldom, it still stings when it happens.

    I keep thinking about yesterday's post and about M's attitude about all of this and I think that speaks volumes about what you've prioritized for your family. You've made it not that big of a deal for them - you did that Meri. Despite the challenges, overall your boys are leading very normal and happy lives.

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  3. I can agree wholeheartedly, our normal is definately not normal to new eyes. I'm also usually not aware of it until we are in a setting...like a restaraunt, and we whip out meters, test strips and insulin bags. It's then that I often feel the eyes on us and sometimes feel uncomfortable, wondering if I should be hiding this from the world.

    But...I don't ever want my girls to feel like their diabetes is something we should 'hide'...it's such a tough spot.

    I'm sooooo sorry that the sleepover didn't go as planned, life can throw us a curve ball when we least expect it or want it :( I hope that he is feeling better soon :)

    (((hugs)))

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  4. Wow, how unfortunate, however "D" usually chooses the most inappropriate times to get ugly. Cheers to you for your resilliance and your attitude. Hugs to your family....how lucky they are to have a matriarch with such class and character!!

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  5. Oh, oh ...... me, me, me!!!!! In the back! The one with the hands waving wildly in the air!

    I know the answer to "What else matters?" !!!!!

    N-O-T-H-I-N-G. Who knows why the boy left early. It could be all about him and nothing about what happened at your house.

    Remember when you were a kid and would spend some time in another friend's house? Everything from the different smells to the furniture to the style of kitchen dishes to the sounds of the home to the meals served to the pets to the type of laundry detergent was different. ALL of these things in combination made me want to go back home to my familiar surroundings. Too MANY things are different than what we are used to and as kids, we feel better at home.

    What I am trying to say is I bet the boy didn't leave because of he thought your family was weird. He left because he wanted to be back with what he knows to be normal in his family.

    What matters is you love your boys and they love you and you take care of them and they KNOW this and then throw in your hubilicious and that fantastic superdog and everything is just crazy GOOD ........ and yours.

    Normal is whatever you make it.

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  6. NORMAL? Normal flew out the window the day of diagnosis..........if there ever really was any "normal" in my life anyway!! HA!

    The good of all that night, B will find out if this friend is truely a friend and comes back for more! I pray he is and does.
    And sometimes, the outsiders need a glimpse to fully understand the impact of diabetes.
    That, and it explains our insanity! ;)

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  7. So sorry D reared its ugly head at the sleepover. Glad all ended well. I agree we go through diabetes motions with the same normality as tying our shoes or brushing our teeth. It didnt hit me how others saw it until I was weighing Js food and a friend said ''i could never do all this. Wow''. I said you would have no choice. But I actually saw how it looks to others. How high his needs are etc. But this is our normal and nothing else matters.

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  8. "Normal" is only a setting on a washing machine! (((HUGS)))

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  9. I just love you and your beautiful posts! Well said my friend, NOTHING else matters. Sorry for the crappy night/morning. Hopefully you won't have another for a very long time!

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  10. What did B think of the boy leaving? Was it his friend?

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  11. Well my Dear...BIG TIME BUH-MER! I have so been there too...actually this post is pretty current with some things I have been going through on the Hockey Bench with Joe's D' Care and his teammates taking it all in.

    Normal it is not. I will not try and even say that b/c it is not true. Different, yes. Different, sure. I am a FAN of DIFFERENT.

    Thanks, as always for leading your Diabetic Life with grace and sharing it with the rest of us.

    Love You.

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  12. NOTHING ELSE MATTERS!!

    Sorry D had to act like a biotch! It figures... right?

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  13. Another great post, thank you Meri! How could I say it better. I am so with you.

    My kids' friends all know what is "normal" in our house. Thankfully none, yet, have baulked at it. Isabel is only 4 and still at pre-school - let's see what happens next year when she goes to "big school" and makes a new set of friends. We'll roll with the punches, if there are any!

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  14. I've wondered for years - what is normal? Is there such a thing - my normal is different than your normal? But darn it, the D normal really stinks. Drew's not buying it when I have tried to build up 'having diabetes is a kind of a gift (yes, he is looking at me kind of bizzare like, right about now) - you've met amazing people, had amazing experiences and are more intune with your bodies needs more than anyone could dream of. Can you tell I'm trying to talk myself into it right about now?
    Very rarely does anything with D surprise me but this past weekend as I'm cooking/baking when my mom visited, I was getting dinner on the table turned around and saw my mom, my husband and my son - all testing. it hit me like a sock in the gut and I found myself turning to hide my tears. All we have done and they still have it? I guess we all just keep on being normal. Happy Holidays everyone!

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  15. I felt kind of sick to my stomach reading that...the ketones at 4.1 and all... So sorry that happened to B at all let alone when he had a friend over. You guys rock.

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  16. Yowza! 4.1? We had a 3.7 and it was NOT pretty. Glad he's ok...

    Yeah... normal. Normal shmormal. Who wants to be ordinary anyway?

    It IS so normal to us, though, isn't it. It's easy to forget that to outsiders what we do is.... strange, sad, scary....

    All I can do is try to let Sweets be as normal as possible while pounding into her head that it's not so bad to be different. And pray!

    ((hugs))

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  17. Great post, Meri! And thanks for the wonderful comment on my side earlier... Loved that: "Oh Snap!..." I'm on the same page as you are, just honored to be lumped in the same category as others like yourself!

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  18. I hear ya! Glad things turned out okay and thankful to hear that despite it all your family has their priorities straight. I think that is definitely one silver lining of this disease, it puts life into perspective daily so that we don't take a lot for granted.
    Enjoy today :)

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