Life for a Child

Wednesday, November 23, 2011

One of Those Days...

Thanksgiving is just around the corner. 

And I was planning a "thankful" post.  That's what I intended to write when I sat down tonight. 

But life got in the way.  And here we are.

The thankful post will have to wait.  Because I'm just not in the mood.

Fair warning - this post may not be all happy, carefree, positive, optimistic, or rosy.  It's may not be very uplifting and it's probably not going to "politically correct" to some.

What will be is REAL.

Honest, truthful, and real.

Today I would like to kick diabetes very hard.  I would like to wrap it up in a box and ship it to Timbuktu.  I would like to hold it down and make it beg for mercy.

I really just want it to go away.

I remember hearing many people say that your journey with diabetes DOES get better in time. That it doesn't always hurt like it does at first.  Or when it's your turn to grieve. 

That slowly but surely the good days start to outnumber the bad.

And I've found that to be true. 

Slightly over two and half years into this... experience... and the good days definitely outnumber the bad.  There are many days that the routine of this life is but a blip on our radar.  We just carb count and bolus and site change and trouble shoot and SWAG and what-not...  Without ever blinking an eye.

In fact, I go for days... weeks... now when diabetes doesn't get to me.  In part, I think it's because I don't let it.  Maybe I've just learned to keep my guard up. 

But today was not one of those days. 

Today I despise this disease with the passion that I felt in those first few weeks when we were holding Sweetpea down 5-6 times a day to give her the insulin shots.

It started on Friday.  LOWS.

Sweets was low about 4 times at school on Friday.  And then a few more times that night. 

And not just low.  Like 50's low.  Lows that take 40 or more grams to raise into the 90's. 

The lows continued on Saturday.  And Sunday.  And Monday.

We are frustrated.  Exhausted.  Scared. 

I keep waiting for her to puke - but it's not happening and she says she feels fine.

Nothing is working.  

Today was better.  Only 1 low today.

But today was pod change day.  After school, I had a meeting.  Then I had to put away all the fall and Thanksgiving things and get out the Holiday/Gingerbread Man things.  Sweets and I were having dinner with Gaga and Mimi because J had a meeting at our house.  This meant that I had to start the pod change at school.

No big deal, really.  We've done it many times. 

But the last time, I had to use the Opsite Flexifix on the pod.  Pods usually stick to her like GLUE.  But this one had a crumpled tape edge when I put it on and it was right by the cannula.  I was afraid it would work loose since I'd messed up the tape.  So I added the extra.

Opsite Flexifix works GREAT. (We buy it on Amazon... Seriously take a look if you need something that will stick to you kid - or yourself!)  It's like SUPERGLUE.  So that pod was stuck and it was stuck tight.

We put on the adhesive remover and let it sit for a few minutes.  That always works well and she can peel the pod off easily.  But it didn't work on the Flexifix. 

It was REALLY stuck.  And she pulled and pulled.  She would NOT let me touch it.  Her little skin was bright red.  And she was SOBBING.  SOBBING.  Screaming that it hurt.  That it felt like it was ripping her skin off. 

And there was nothing I could do.

Maybe she was a little more emotional because she'd just been low.  I don't know.  But it hurt her.  All you had to do was look at her skin and you could see it.

Red.  Raw.  Irritated.  With lots of little red spots where the pod and Dex has previously been.

All I could do was hold her while she cried. 

And after all the lows...  the battling the blood sugar... the testing and testing and testing... the pain from that tape sent me over the edge.

I wanted to cry, too.  Sitting there on the floor in the middle of my classroom.  I just wanted to sob. 

But I couldn't.  I had no tears.

Have I cried every last tear I have?

Of course, this pod change was not great.  She was scared because it was so tender and she cried and cried and cried.  We've been doing so well....  Pod changes have been going great.  But this one....

Maybe it's just the lows getting to her, too.  Maybe she's also exhausted and worn out from fighting this disease 24 hours a day.  Every single day.

I don't know.... 

All I know is that some days are just like that.

 No matter how long we battle this disease, I think there will always be days when we hate it.  There will always be hard days.  Days of tears.  Days of frustrations.  Days of pain.

Those rough days may get further and further apart.  Thank goodness they do.

But they are always there.  Just waiting to pounce on us. 



Today I got pounced on.

Today I just simply could not stand the pain that my daughter felt at the hands of this disease.  And I could not stand the feeling of helplessness because there was nothing I could do to help.  Nothing I could do to make it better.

We may get used to this disease. 
We may put on a brave face and say it's fine. 

We may count carbs and SWAG in our sleep. 
We may be so used to seeing them attached to medical equipment that we don't even look twice.
We may have the hospital on speed dial and know our way around there better than we do the grocery store. 
We may be on a first name basis with our pharmacy.
We may have a medicine chest the size of an actual chest of drawers.
We may not cry everyday.

But it doesn't mean that this disease does not SUCK sometimes.  It doesn't mean it's easy.  It doesn't mean it's fair.  And it DOESN'T mean it's ok that we or our kids battle it 24/7/365. 

It's not ok.  It's just not.

We do what we have to do to make it through. 

For me, it's trying to stay positive.  It's working tirelessly to find a cure and raise awareness.  It's finding the joy and wonder in the little things. 

And it's also acknowledging the days that force me to my knees yet again.

Tomorrow morning (be that at midnight, 3 am, or who knows how many other times I'll be awake...), I will wake up and it will be a new day.

Tomorrow I will be thankful!  I will FEEL thankful.  And I will write that post!

But for tonight - I'll  find myself finally crying those tears of helplessness and frustration and anger.  I'll be praying and searching for the strength I need to run this race that has been set out of me.  And I'll be hugging and snuggling my little sleeping angel. 

With the promise that tomorrow we will live to fight again. 



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11 comments:

  1. Oh Hallie, so sorry you have had such a terrible few days! Sending you and your gorgeous girl big hugs all the way from Australia x x x

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  2. I'm so sorry you all and Sweets are going through this rough-streak lately, Hallie.

    Your daughter is beautiful, and that smile is what shines through everything - diabetes and otherwise.

    Yes, it does suck sometimes. And we do get used to it, but there are always times that it sucks and the woes outweigh the good. But it's the smiles and laughter and fun missing tooth experiences that get us through, and make it all worthwhile.

    You and J are doing great, obviously. Please give Sweets a little hug from Suz and I. And when you take that next Pod off for changing it... take it outside and smash it against the ground. Because you can!

    Good vibes your way!

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  3. Something must have been up in the diabetesphere as we had a hard day yesterday as well and I couldn't pull it together last night. Thank you for you transparency. We really are all in this together. Blessings to you and your sweet family.

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  4. Oh Hallie - I am so very sorry. I do know one thing - that you ARE strong, that these days will pass, that we will all live to do this another day and another. Amd we will raise strong kids. I believe it. You are a wonderful mother to Ave. Love to you my friend.

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  5. Oh, Hallie. I'm sorry. : ( It does suck a lot, and it never ends.
    We've had lots of highs from an unending ear infection. They seem to last for months (or three antibiotics) at our house.
    Hope today goes better (reduce basal and bolus ratios?), and you have a thankful Thanksgiving. Love you! : )

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  6. Thank you for your honesty. Love you.

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  7. huggs! Hope your having a better day today!

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  8. Hallie, I am so sorry!! That does just suck for you guys. I have just hated seeing all of the little bumps and irritation on Aiden's little arms from the pod. He is a trooper most of the time, but I can tell that it really hurts sometimes and it just isn't fair. Same with Sweets. I am really sorry! Sending you lots of HUGS!!

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  9. :( Sorry for poor Sweets and for you! Ally has been extra emotional about things lately and I can't decide if its BG related or just a phase she's going through. Either way, its hard to watch! Hope Sweets is doing ok now and those yucky lows go away!

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  10. I still have those days, and I echo what Mike said. You have a balanced perspective on this disease. You don't whine non-stop but you also don't paint a world full of rainbows and butterflies. That's going to make such a difference for your sweet girl in the coming years. I'm sorry things got rough and hope & pray that you feel some peace & hope this Thanksgiving.

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