Life for a Child

Wednesday, October 5, 2011

It's Complicated

On Saturday, we get to go for our yearly visit to the Children's Hospital Outpatient Clinic for Sweetpea's annual lab work.

Oh Boy!

Can you hear the sarcasm? We loathe labs - because it means an arm draw. And that means Sweets will get hysterical. She will cry and fuss. She will kick and fight and beg everyone not to hurt her.

Maybe this time it will be different. I keep hoping... When it's over, she always says it wasn't bad. It's just the anticipation of what MIGHT happen that just wrecks her every time.

I just got our orders yesterday.

I've never really paid much attention to them. They've always been just another piece of the myriad of medical papers that we encounter. But yesterday, I did.

And this is what jumped out at me.



Her official diagnosis is DM WITHOUT COMPLICATIONS.

WITHOUT COMPLICATIONS.

Thank God for that.

But it just kind of smacked me. Because there's a chance she COULD have complications. One day.

Now, I'm not an idiot. It's not like I didn't KNOW that.

It's not like I don't work my a$$ off every day counting carbs and calculating doses and figuring out I:C ratios and basal increases or reductions. And I know I'm doing that because tighter control means less chance for complications down the road. And less complications mean a longer, healthier life.

I know that in my head.

I just don't always know it in my heart.

I look at my little girl and she's the picture of health. She's active, full of energy and enthusiasm, and sharp as a tack.

You can't SEE anything hurting her, destroying her body, taking years off her life.

And even though I do the heavy lifting of the D care right now and I KNOW the realities of this disease, I still see her as my perfectly healthy, perfectly normal little girl.

A mother's heart just can't see anything else.

And I think that sometimes we get so wrapped up in the DOING that we forget the other stuff.  We push it back and just don't let ourselves think about it.  We feel that our kids have some TIME.

But the orders stopped my heart cold.

They made me once again face that harsh reality that MAYBE....

MAYBE one day... We won't be so lucky to see the WITHOUT.

And all there is to do is try our best. Pray. And keep the faith.

Because we can't control this disease.  We just do our best to manage it.

 Fast Forward to tonight...

When I uploaded that pic tonight those words struck me again.

But this time they made me chuckle.

WITHOUT COMPLICATIONS???

Are you kidding me?

This crazy D life is nothing BUT complicated! How much more complicated does it get?!?

I have to do MATH to feed my kid. Or to NOT feed my kid. And not just adding. HARD math. It's crazy.

I have to try to forsee every imaginable obstacle or outcome in advance.

I have to pack like I'm going on a trip just to run to the store.

I get up close and personal with TSA agents just because I TOUCHED my daughter.

I have to memorize carb counts for thousands of foods.  Well, I can look it up but after so many times I just remember.  Not that I can always remember my name or phone number.  But I can SWAG you a banana any day of the week.

I have to count out goldfish one by one. Who the hell does that?!?

I have to learn to sleep in three hour segments. Sometimes less. More is reason for celebration.

I have to write pages of instructions for someone to my watch my kid for an hour. Much less an entire school day.

I have to figure out how many carbs are needed to treat a low - taking into account things like the type of carb, IOB, time of last meal, basal rate, activity level, stress or anxiety or excitement, future stress, anxiety or excitement, future activity level, future meals, future basal rates, and the position of the moon in relation to the Earth and Sun and the North Star.

I have to not lose my mind when someone asks me for millionth time is she can eat that or should eat that or if anyone else in the family has diabetes or aren't I glad she was so young or how lucky she is that she won't know any different or how they could NEVER do what I do or something along those lines.

I have to repeat the phrase "I do not want to go to jail" over and over in my head after someone mentions the healing properties CINNAMON.

I have to practically become a nurse to handle all the injecting, inserting, filling, priming, prepping, sticking, stabbing, bubble flicking and whatnot that is required.

I have to speak this weird language where the terms basal, bolus, IOB, I:C ratio, etc make sense and are used in every day conversation.

I have to practically be a pharmacist to handle all the different prescriptions we use. And a professional organizer to store it all.

And let's not even go into dealing with insurance...

I have to walk the tightrope of taking care of my child's diabetes while giving her the freedom to be a normal kid.

I have to hide my anger or frustrations or sadness or fear because I don't want her to pick up any negativity from me.

I have to handle covert operations like sneaking a fingerstick into a playdate unnoticed or silently counting food or blending into the surroundings so I can bolus and be unnoticed by my child and her friends.

I have to be able to drive and bolus. Not wise. But sometimes mandatory.

I have to stand up for my child and advocate for her rights.

I have to research... Therapies, organizations, companies, products, treatments, non-profits...

I have to raise money and speak to Congressmen to advocate and educate about her disease.

I have to do all this.... AND everything that a "normal" mother would do. AND everything a "normal" wife would do.  AND everything a normal human would do (you know, like shower.  Brush your teeth.  Get dressed.  At least occasionally...)

WITHOUT COMPLICATION???

Ummmm..... No.

Incredibly complicated.

But so incredibly worth it!


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13 comments:

  1. You've done it again....pulled the words right out of my mouth! Nice to know we're not alone!

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  2. Ha! That's where I went. It is SO complicated...even without complications! Another great post!

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  3. So true!!! Even "uncomplicated" D is very complicated! It's overwhelming to stop and think of what we do each and every day...and yet, it's just part of our "normal" daily life!

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  4. You always make me cry!

    Beautiful post. Thank YOU! Love you dear friend.

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  5. thank you for posting this...totally same same all around. Completely giggling at the "counting out goldfish, who the hell does that?! comment"...SO TRUE and SO crazy that we do things like this on a daily basis and still remember to brush teeth, etc.

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  6. This is so great!!I love how you said you have to figure out the "....future basal rates, and the position of the moon in relation to the Earth and Sun and the North Star." hahaha That's so how it feels and I beat myself up when I'm wrong.

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  7. This is so great!!I love how you said you have to figure out the "....future basal rates, and the position of the moon in relation to the Earth and Sun and the North Star." hahaha That's so how it feels and I beat myself up when I'm wrong.

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  8. ahhh...complicated, such a heavy word isn't it. I agree with you on so much, honestly it was funny the other day a mother noticed Isaac's pump and asked. I nonchalantly talked about type 1 and she said, "well you must have it under control now two years later." She was shocked to find that it is not a disease that you can "control" and I am thankful when I get four hours of sleep together at once...yeah it's definitely not an uncomplicated life!

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  9. WOW, sometimes I forget ALL that we are balancing. And, yes, it is easy to forget the "WHY" behind all that we are doing when we are in the middle of our day-in-the-life. The "WHY", the complications, are all encompassing. Diabetes can cause damage to every organ in one's body. Sobering.

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  10. Hallie - this hit home for me today - why? Cause yesterday Grace got her blood drawn for her annual too! And it said the same thing on hers. Exactly the same thing. But what struck me was when the doctor, upon writing the orders about a month ago, asked me 'How long into diagnosis?' and I said 'It will be 3 years in January.' to which the doctor looked me in the eye and said 'Well, we don't have to check the kidneys yet, but we will starting at the 5 year mark.' My heart sunk to my knees and my eyes filled. It was awful.
    I don't mean to say this to bring you down, but just to say your post brought the same thoughts to me. And Grace struggled with the arm draw and screaming and we semi-held-her-down. It was what it was. It's still too raw even to write about.
    Good luck with yours. I will be thinking of you two.
    Love to you my friend.

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  11. T1D will always be complicated, but SweatPea's is currently uncomplicated. And that, my friend, is AWSCHUM!!!!

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  12. H E double hockey sticks yes! Signed complicated in Portland,
    Michelle
    itsamadMODworld.blogspot.com

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  13. I hope everything goes smoothly for Sweetpea..

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