Friday, May 23, 2014

It's not the numbers. It's the work.

I made mistakes with J. 

He was my first child with diabetes.  Like the first pancake, everything just isn’t going to turn out perfect with your first one.

One of the biggest mistakes I made was placing an emphasis on numbers.  I’ve been trying to correct the problem for a couple years now, with some headway…but damage has been done.

I’m “lucky” because I have a couple more to get it right with.  Most of you reading this will have one shot at raising a child with diabetes.  I write this post in hopes it’s not too late for you. 

You know those blood sugar numbers that pop up on the meter?  I believe that our children should not, in any way, worry about those numbers.

Never should we ever check a blood sugar monitor and make them feel any shame whatsoever about the value of the numbers on the screen.

Because the numbers are OUR problem.  Not their problem.

We should in no way expect stellar numbers and any sequence of numbers at all.  All we should expect from our children is for them to put in the work.

If they are actually checking their sugars, putting the numbers in the pump and bolusing for those numbers, or for those on MDI, correcting those numbers via shot...

And if they are blousing, (giving insulin,) for the food that goes in their mouth…

Then the numbers whether high or low are the problem of their endocrinologist, and the parent.

Correcting settings is the adult’s problem.  Consistent highs at night are the adult’s problem.  Lows after recess are the adult’s problem.

Doing the work?  Their problem.

The emphasis needs to lean towards good habits, not guilt for numbers that are as easily controlled as a rabid otter.

The number factor should be completely moot.  If we take the emotion and the fear away from the numbers, their lives will only be more rich and rewarding.  Because those numbers are never ever ever ever ever going away.  Why attach guilt so early on to something that is going to be a constant thread through everything they do, maybe forever?

Low numbers should mean food, and fast acting sugars…not fear of dying.

High numbers should mean corrections with insulin for relief from high symptoms…not fear of complications.

Let’s let them negotiate such difficult feelings when they are old enough to negotiate them.  Children shouldn’t be living in fear.  It’s our job to cradle that fear and hand it over to them piece by piece in such a slow rhythm that maybe the fear won’t impact their lives as significantly as it has impacted ours.

When should the conversations start about the consequences of numbers?  Certainly not when they have no control over the basal rates, the sensitivities and the carb ratios.   We can talk about not bolusing for food and the immediate consequences that holds.  Peeing a lot, headaches, concentration issues, not having energy to run during the soccer game…

They are children. 

I don’t expect any numbers from the boys.  Wait. That sounds totally self righttous.  Let me try that again.  I TRY not to expect any numbers from the boys.  I only expect them to do the work.  And if they do it…and the numbers don’t line up?  Not their problem.  My problem.  I will call the endo, and I will fix it. 

Here’s the deal:  If they do the work, more often than not the numbers will fall where they need to be.  And if the numbers don’t line up?  They shouldn’t feel guilt about it.  Sure, I’m not touching on how to get them to be consistent.  How can we do that without placing such importance on numbers?  What consequences will be doled out for not doing the work?  I think these answers are different for everybody.  That is why being a parent is so hard...figuring this stuff out can be frustrating at best.

If you haven’t noticed, this world has gotten a little more complicated than when we were kids.  There is a lot on my boys’ plates, even if we were able to take diabetes out of the picture.

If we can help take away the visceral guilt from the numbers on the screen, and then help replace that with the mechanics of how to fix the number, and the tools to find the right people to make consistent out of range numbers better…I think we could create a generation of empowered people with diabetes.

My 12 year old will be returning from 6th grade camp today.  When I check his meter’s history I won’t be looking at the numbers as much as I will be looking at the times he tested.  My discussion will be on frequency, not on number values.

Because any number is better than no number.

If I’ve learned anything from being the mother to a teenager with diabetes…I’ve learned that.

Tuesday, May 20, 2014

The Final.

B is graduating from 6th grade in a couple weeks.  This means next year he will enter Junior High and desire more than anything, freedom.  Freedom from calling mom.  Freedom to go to a friend's house to study.  Freedom to go to school dances and sporting events.

Tomorrow B is leaving for the 6th Grade Outdoor Education.  It’s a camp that runs three days and two nights. 

I’m not going.  For all of it anyway.

I’ll be driving some of the kids from his class to the camp and I’ll hang around for a few hours to make sure his numbers don’t bottom out from excitement.  His body is notorious for doing that.  Apparently excitement eats up any sugar he has in his body at an alarming rate.  I’ll make sure he gets through the initial, “OH MY GOSH I’M AT CAMP!!!” phase, and then I’ll pass the baton to him.

Information you should know:

* He isn’t going low at night lately.  In fact, he is actually jumping up a bit between 12 and 2am. 

* There is cell service at the camp in a few locations. He’ll have a phone on him at all times so he can call if he isn’t sure how to handle a number or a food.

* I’m internally freaking out a bit, but I know that I need to use my emotional trash compactor and squash down all my anxiety.  Chances are really good he’s coming back alive.  I have to lean on that.

* I am changing his set right before he leaves, and also inserting an extra "emergency set" just in case that one gets ripped out.

* Camp is about 40 minutes away.

* B is awesome.

Today B’s class headed to the High School for the “Westside Relays.” It is where all the elementary schools on the West side of town compete in track and field events.  I told him this was his practice test.  If he showed responsibility by checking his sugars and bolusing for the food he ate, then I would let him go to camp without me hovering over him the entire time.

He passed with flying colors.

His meter history indicated he checked his sugar 4 times.  When I questioned him for giving only 5 carbs for lunch he responded that he was running around and with all the activity he didn’t want to drop low.

At 3:30pm when I picked him up from school he was 97.

Nailed it.

Now…for the final.  This is what I said to him:

“B, I am so proud of you for all your hard work today and your smart decisions.  You are ready to tackle your Diabetes Final all on your own.  If after camp, your meter and pump histories show me that you were on top of your diabetes needs, next year you won’t have to call me at lunch.  Sure, I’ll check your meter every day for awhile to see that you checked and bolused, but if you are consistent, I won’t make you check in.”

He was giddy with excitement.

The fact is, B has been checking his own sugars, counting his own carbs and bolusing himself for a while.  He only calls me so I know that he actually did it.  So I know he didn’t forget.  (Side note: Just in case you don't know, our school nurses aren't around for helping with the boys' Diabetes.  It's a California thing.)

He’s ready to fly on his own, but I want to give him the satisfaction of earning it.

If he nails his final, he knows that independence will come with check-ins and surprise checks of his devices.  He knows that he will have to start checking in with me if he starts “forgetting” to do what is needed.  And he knows that will probably happen.  He is human, he will make mistakes.  It's ok. 

He’s growing up.  He is less than half a year from becoming a teenager.  I can’t believe we’re already here…I feel like J and I had this conversation just yesterday.

It’s going to be a long couple of days.  There is going to be a lot of praying.  There is going to be a lot of faith given to my 12 year old.  Inside, I’m going to be a bit of a wreck.

But on the outside, I’m going to be strong…and sure.  And I’m going to show my son I have complete confidence that he is going to rock this.

He’s been studying for this since he was 5. 

What can I do other than watch him ace it?

Sunday, May 18, 2014

D Blog Week, Day 6: Courageous

I was out of town for a few days and fell behind on my posts.  I'm going to post yesterday's post today.  'Cause I'm no quitter!  The subject for Saturday was: "let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves."

It's been a privilege to watch my boys evolve over the years.  I know that people with diabetes sometimes don't want to be called out as brave, or courageous...but in that moment when the rocket clicks and the needle is injected into their flesh, there just doesn't seem to be any other word to describe it.  I watch my boys' faces at the moment the needle inserts and each time I'm in awe of the courageous human beings they are.  

After all, the needle is pretty long.

When we started with pumps there was fear in their eyes at each set change.  Later it turned to resolve to conquer their fear of that needle's pop.  Now though, there is a quiet roar of acceptance.  The needle is coming whether they flinch or not.  It is coming whether they are ready or not...whether they want it or not.  Their faces now are those of old souls.  Enduring.  Doing what has to be done in the moment.

Yesterday I took pictures of the L's and B's faces at the moment the needle inserted.

I don't know what you see...but when I look at these pictures, I see fortitude.  

And that makes me look up to them even more.

Thursday, May 15, 2014

D Blog Week, Day 4: Help

Today's topic was suggested by yours truly: "Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?"  I kinda went another way with this.  I thought about what I did that helped me get through these past two years the most.  This is what came to mind:

Before I lost Ryan, I never asked anyone for help.  Well, except Ryan.  I never reached out.  I never made suggestions for a night on the town…unless I was with Ryan.

I was born a stubborn, independent human being.  My mother would swear under oath that this is true.  I would rather suffer and muddle through on my own steam, rather than reach out for a lifeline…that I had to ask for.

But then I lost Ryan.  And I realized that standing on my own had lost its power.  If anything, I was making my life more miserable by insisting I weather the storm on my own.  For a while, I stood firm.  I was alone on Friday nights.  Well, I have four boys, I wasn’t alone per se, but I was lonely.  I had things fall apart in my house and I would adjust my world to work around them rather than ask for help to have them fixed.

Asking for help went against my grain.  It was weakness, and it was embarrassing.  I didn’t want to be “The Widow who needs help.”

I still don’t…


Lonliness is all consuming.  It can ruin you if you think you are alone and on your own.  My sister in law saved me after Ryan passed by sleeping on my couch every day for three months, and still to this day staying over three nights a week to watch TV with me, and take away that loniliness variable.

I didn’t ask her to do that though, so it was easy.

Slowly though, I’ve begun asking friends if they want to see a movie.  Go to dinner.  See a show.

Slowly, I’ve asked for help fixing electrical problems, plumbing problems, watering system problems.

Slowly, hesitantly, cautiously, I asked the church for help. 

And when I asked, I was provided for.  And people were wonderful, and happy they could do something for me, and gracious and lovely.  And my life was completely blessed because I asked.

I don’t look at asking as weakness anymore.

I see it as doing something brave.

No.  It’s not easy for me to do.  Yes. I have to work up the courage to do it.  Yes. I have a ceiling fan in my garage I bought a year ago to replace the broken one in the living room, and I haven't worked up the courage to ask someone to install it for me...

But putting myself out there has never let me down.  Never.

Turns out, people want to help.  They just don’t know how.  And sometimes they just don’t know that going out for a quick piece of pie can completely change my week.

If you are overwhelmed, reach out.

Reach out to your friends online and get advice.

Reach out to your neighbors.

Reach out to your friends.

Reach out to your church.

Reach out to your spouse.

I’m sorry, but you can’t do it all alone.  Well, you CAN.  But you can’t find true happiness that way.

I believe we are all here to find joy in our circumstance, and I believe the best way to do that is by taking off our blinders and helping eachother out.

Whether it be an ear to listen.

A mouth to speak.

A heart to love.

An arm to hug.

A body to work.

Whatever it is.  Giving help, and even accepting help is humanity at it’s finest.

I had to learn this lesson with God too.  I had to open up to him and ask him for help and I promise you he has always provided.  Always.

That’s how I’ve gotten through the past two years.  It isn’t easy, but it’s always been worth it.  I know this is a big problem in our community.  At some point we feel like we need to take the world and hoist it on our shoulders.

The world is much lighter if there is another shoulder there bearing the weight.  Give it some thought, and consider letting someone help you out with your burdens.  Maybe you'll get a glimpse of what I have witnessed.  

If you do get that glimpse...get ready to smile again.