Ideal is not real.

95.

89.

90.

At 11:00am in the morning, these numbers are money.

At 11:00pm at night, these numbers are no bueno.

I was hoping to dream of something other than numbers last night, but the fates had other ideas. 

My dilemma?  I was exhausted.  Lately I’ve been priding myself on how much energy I have.  I wake up alert.  I go through my day alert.  I go to bed alert.

Not last night.  Last night at 10:00pm I fell asleep hunched over my keyboard.  I woke up in a haze at 11:00, completely discombobulated.  Innately, I knew it was time to check the boys…but as I stood up my body continued to slumber.  Like a robot on autopilot I stumbled into the boys rooms saying a little prayer, hoping that all would be well.

Everything was a little too well.

Fifteen minutes later I was in bed, wide awake.  Keeping children alive does that to a person.  I pondered the perfect numbers.  What would be the perfect number for my boys to fall asleep at?  The one number that would allow me not to worry and in turn result in a good nights sleep.

After grappling with my conscience for a good half hour I came to the conclusion that there is no perfect number.  And there never will be.

Because in a perfect world, the 95, 89 and 90 would be exactly where my boys need to be.  In a real world though, those numbers just aren’t a realistic for the night.  Hormones, exercise and food dictate that those numbers could easily fall dangerously low.  They are way too risky.

In the real world, I need the numbers to be in the high 100’s for me to sleep.  Which often means they’ll wake up in the 200’s.  In a perfectly healthy world, that isn’t ideal. 

Ideal: (adj.) existing only in the imagination; desirable or perfect but not likely to become a reality.

Higher numbers for my boys to ensure sleep for myself is sometimes a necessary trade off, but never a comfortable one.

Our last Endo appointment was months ago. Our Endo insisted on raising my youngests' target numbers to 175 at night.  Every bone in my body ached thinking about the selfishness of that choice.  But I knew at this time in my life, it needed to be so.  Their A1C's were plenty low enough to accommodate this change…it’s just I’ve always felt a deep responsibility for the nighttime numbers.  It is the time with the least variables.  It is a time where I have the most control.  It is half the battle.

And if I lessened my fight, would that be the opening the door to diabetes, allowing it to wreak havoc on my family?  Would everything fall apart?  In my experiences, small changes have a tendency to do just that.

It took time to adjust.  Some mornings they would wake in the high 200’s, and my heart would rip in half.  I’d spend the morning sewing it together with reason, repeating my mantra over and over in my head:

“It is ok to let my boys have higher numbers at night sometimes so I can get a restful, full nights sleep.” 

I pretty much had to brainwash myself into believing that. 

But when I have to, I let it happen, and shockaprisingly enough, I’m beginning to believe it.

At 11:00pm last night I wrote the boys’ numbers on the whiteboard, staring pensively at the two digit figures, trying to decide what to do.  Should I treat gently and wake in a couple hours to see where they are going…or…should I treat in such a way that I know they will be safe…so I can sleep.

For a mother, the answer isn’t easy.

In the end I allowed myself some leniency, repeated my mantra, and adopted some faith.  I went to bed last night with all three boys on Temp Basals, and 10 grams of carbs in their bellies.

They woke up 92, 144 and 153.

I’m not fooling myself…I know that a lot of what made up those numbers is just plain luck.  Sure, I had a little bit to do with it, but let’s be honest…diabetes does what it wants to do when it wants to do it.

Playing the lottery with my boys’ lives is not fun.  In a perfect world, I’d never have to.

But in the real world?  I do it every day and every night.

When I SWAG a treat.  When I send them to bed.  When I send them to school not seeing the amount of cereal they poured for themselves, but giving them a carb amount anyway.  When I bolus for popcorn before a movie not knowing exactly how much of the bag they are going to eat.  When they run the track.  When they are going to play at a friend’s house.

It’s always guessing.  It’s always weighing what the safe option is vs. what the ideal option is.

A lot of give and take.

Sometimes I give my sleep away.  Sometimes I grab my sleep and hold on to it for dear life.

Because the truth is, I don’t live in a perfect world.  There is no such thing.  Also, there is no such thing as a perfect pseudo-pancreas.

I’m real.  My decisions are real.  And so far, every time, it’s always worked out in the end.

I have to lean on that. 

And know that in most cases…my best is good enough.

Defusing the bomb.

 Last month, L’s Diabetic Life was in turmoil.  It seemed like an angry tiger materialized out of thin air atop his blood sugar monitor.  The numbers were stubborn, scary and impossible to tame.

Breakfast was by far the worst.  It was like the dawn phenomenon on steroids. 

He’d eat breakfast, spike to the moon, and then dive.  Dive to the depths of the deepest ocean…all in the span of say, two hours.

To be clear, I’m no novice when it comes to dawn phenomenon or breakfast spikes.  But there was like an eternal black cloud over every one of my old tricks.  Nothing was working and for the first time in a LONG time, diabetes was actually affecting L’s life.  It all just snuck up on us, quietly enough that I didn't take it too seriously.  I simply started putting out fires as each one flared up. 

But then it all came to a head.

He was off.  As if a marionette, his blood sugars seemed to control his limbs.  Even worse, his brain was muddy, he couldn’t concentrate.

“Mom, my fingers are shaky and my body doesn’t feel right.”

He would wander the classroom completely in his own world.  Trying to figure out what he was feeling.  Was he low?  Was he high?  He didn’t know.  All he knew was something was so way off, it was reason for concern.  He checked his sugar so many times during the day, he was becoming obsessed.  Usually food or insulin would fix the feelings…but in this instance, it seemed there was no quick fix to what was happening.

The Friday a few weeks ago was the last straw.

“Mom, I can’t concentrate because my body keeps telling me something is wrong.  My stomach feels shaky.  Can you pick me up?”

That day his numbers spiked to the high 500’s and then an hour later he was in the 40’s with a million units on board.  I picked him up from school.  That was huge.  I don’t leave work to pick my boys up from school for diabetes unless it’s a big deal.  This was a big deal.

I called the Endo.  Pre-bolusing.  Super-bolusing.  Rage-bolusing.  Nothing was working.  Do I raise the insulin to carb ratio for breakfast?  But he’s spiking and then dropping dangerously low.  How would more insulin fix that?  Does he need more basal prior to breakfast?  There were like a hundred scenarios running through my head.

The Endo suggested a load of changes.  But my swelly brain wondered how I would know which one was fixing the problem if I did them all at once?  Making a decision was never so heart wrenching.  I didn’t see how I would ever be able to fix this for him.  I honestly felt like I was defusing a bomb.  One wrong move and it could all blow up in my face…even worse…blow up in his face.  This was affecting him WAY more than it was affecting me.  I was scared to do the wrong thing…as a mother, I felt more than anything, like a failure.

Ironically, I did end up upping his breakfast insulin…it was soon after I had the epiphany to change his insulin sensitivity too.  It seems since he was waking up so high in the morning, (another issue…3 correction boluses wouldn’t budge him from where he was at night,) it seems the morning correction bolus was too strong and that was what was bottoming him out an hour or two after breakfast.

I upped his nighttime basals a tad and soon he was waking up in range.  Things were better the next two weeks, but not perfect.

And then, like magic…it all ended.

Like honestly, the tiger decided to pack up and park himself somewhere else.

He began going low at night.  I have to do half corrections or things get scary.

He’s not spiking at breakfast anymore, in fact he’s more predictable than ever.

It’s just insane to me that diabetes can come into our lives, throw a tantrum and then go sit in a corner like nothing happened.

It seems the culprit was a growth spurt.  To be fair, it was the most insane growth spurt chaos I’ve ever encountered.  And I’ve encountered a lot.

Last week during spring break, he spent 24 hours in the 300’s and 400’s.  I gave him enough insulin to kill an elephant and he wouldn’t budge from those numbers.  Flashbacks, a bit of PTSD from the month before and I was panicking.  My sister in law kept encouraging me to change his set and I said, “No…he’s getting insulin!  He has no ketones!  He must be growing again!  CALL IN THE GUARDS!  I’M GOING TO BLOW!”

But then I did change his set and…nirvana.  Everything is back to normal.  Well, you know, maybe normal is a pretend word, but like…regular.

Sometimes I got diabetes in my back pocket.  Other times, it has me by the throat.

I’m just glad the fates have smiled upon us, for a while anyway.  I think both L and I need to catch our breath.  Breaths?

Breath.

Breathe, Meri.  Just breathe.

An Open Letter to Parents of Children with Type 1 Diabetes

Shame.

It is a terrible terrible thing.

Especially when it is for something that we have little control over.

When our children were diagnosed, I know, buried deep inside all of us, there was shame.  Shame that our children would have this word attached to them for the rest of their lives.

“Diabetes.”

But then the doctors explained to us that it was autoimmune.  That it “wasn’t our fault.”  That it “wasn’t their fault.”

So we made it our battle cry.

“It isn’t anyone’s fault!  It is autoimmune!  It isn’t Type 2 Diabetes!”

“Because when you have Type 2 Diabetes…it is your fault.”

Ok.  Maybe we didn’t say that last line.  But we imply it all of the time.

To save face for our children and our families we throw other families under the bus.

I don’t think we realize we are doing it sometimes.  I understand that in almost every case we are simply defending the people that are most precious to us.  We are mother bears, HEAR. US. ROAR…that it isn’t Type 2.

I’m not implying that D parents need to bear the cross of the Type 2 Community.  And I’m certainly not implying the entire culture of shame is our fault, because certainly society as a whole, including the medical community and the media have projectile vomited blame and shame all over the words “Type 2 Diabetes.”

Maybe it’s not our fault, and maybe it’s none of our business.  Yet.  What if someone we love and care for deeply does get Type 2 Diabetes?  What then?

Are you going to shame them and tell them it is entirely their fault?  Are you going to sit back and watch them get brushed aside by the medical system while their bodies are damaged and ruined by this disease?

Shame stops people from talking about things.

Shame stops people from advocating for themselves.

Shame makes people HIDE their condition. 

Shame makes us destroy ourselves, not help ourselves.

Imagine a world where someone could get a diagnosis, and instead of doctors telling them to stop stuffing food in their mouths, they were given specific battle plans, the correct tools to help, and more than anything…empathy.  Empathy and understanding.

Imagine a person telling their friends they have Type 2 Diabetes, and their friends knowing how devastating a diagnosis it is, and instead of blaming, saying, “What can I do to help?  What can I learn?  I’m so sorry, I know how scary this is for you.”

Nearly 10% of the entire US population has diabetes, including over 25% of seniors.  Chances are you know plenty of people with Type 2 Diabetes, and you have no idea, because they are in the closet.  Also, according to the CDC over 36% of Adults in the U.S. are obese.  But yet, only 10% of The U.S. population has Type 2.  There is obviously more to the story.

The fact is, people with Type 2 can do all the right things, and STILL have diabetes.  Losing weight and becoming healthy doesn’t always change things for them.  We are finding out now that there are many other factors that can contribute to Type 2.  Not just weight.  Not even always weight.  I know many very thin people with Type 2. Maybe people can change their lifestyle and are able to use less medication, but they are on medication none the less, and still run the risk of complications.

Bennet wrote THIS completely enlightening article.  In it he points out the astronomical Emergency Room costs due to hypo episodes with people with Type 2.  These staggering numbers show that the Type 2 Population isn’t getting the care and attention they need.  They aren’t educated properly on their meds, instead they're told, “Watch your diet, lose weight, and take this extremely complicated medicine that we are going to pretend isn’t complicated at all.  Now go away.”  And sure, there are millions who go home and don’t take their meds.  Why?  Two possible theories:  They are ashamed, in denial and want to pretend it isn’t happening.  And also because they weren’t told exactly what is going on in their bodies, like what high blood sugars are actually doing to their systems. They aren’t given an entire team like our children are.  Many don’t even get to see an endocrinologist.

But I digress.  If we can’t be sympathetic to the plight of those with Type 2, maybe we can find a way to not throw that population to the lions.  Maybe we can simply state that Type 2 is Metabolic and Type 1 is Autoimmune.  Maybe we can explain that out of all the people with Diabetes out there, those with Type 1 only make up about 5% of that population.  That we are a little different than other types of diabetes.  And go from there.

Because if you think your outlook isn’t going to make a difference, you are wrong.  One person CAN make a difference.

I'm not pointing fingers here.  I was just as guilty in the shaming department years ago.  But then I met people with Type 2.  Brave, amazing people who burst out of the closet and said, "This disease isn't all that it seems.  It is much harder than it looks.  I'm doing my best but my journey is hard."  And now I call these people my friends and I'm learning things I had no idea about.  Shocking things that completely threw my entire diabetes theology for a loop.

People with Type 2 Diabetes are PEOPLE.  They have feelings.  They are wonderful, human people doing the best they can with what they’ve got.

Our children are not better than them.

We can’t make the people with Type 2 the martyr for our children’s disease.

It isn’t right.

Let’s help put out the fires of shame by changing our outlook.

Think of the Type 2 Community as our neighbors.  Let’s tear down the fences instead of fortifying them with barbed wire.

With all sincerity, 

(This post inspired by Sara’s post HERE and Mike’s post HERE.)

Time

Last week I received a spam comment on a post from a year ago.  The post was entitled, "It hurts."

I clicked over and read the post, feeling the entire time as though I was reading a strangers blog.  "This poor woman.  This poor poor woman."  That's all I could think.

It is exactly a year later and time has lived up to its promise to heal.

I'm healing.

I still have a ways to go.  It still hurts.  I still have plenty of raw spots.

But I am healing.

I have good weeks and bad days, that's par for the course.  But I feel stronger.  My personality has returned.  I'm goofy, more confident and I'm able to laugh again.  I'm so thankful for that, for the most part because I believe that's what Ryan wants for me.

Yesterday was Ryan's birthday, and as expected I felt the familiar feelings of malaise wash over me.  Before, that feeling would have sent me into a tailspin of lonely depression...but this time was different.  Probably because time has shown me that tomorrow, or soon, I'll feel better.  For lack of a better sentiment, I believe I'm able to embrace my grief now.

It's more of a friend than the enemy it was a year ago.  When it circles around I can sit with it, and visit.  Reminisce.  Embrace the loss and the complicated feelings enveloped within the grief.

When it begins to move further away, I cope by not thinking about it too hard.  Or too much.  Because the fact remains, if I really think about Ryan...if I think about missing him and about his hugs and the love we had, I fall apart.  So I've conditioned myself to smile at his picture, and talk as casually as possible and as much as possible about him to the boys.

Of course, there is a lot of guilt that goes along with that.  But I've had many talks with Ryan and he knows that is the way it has to be.  As much as I want to obsess about his absence, those feelings just aren't compatible with a life that is worth living.

So I adore instead of obsess.

Lean on those memories rather than submersing myself in them.

I don't keep the pain with me anymore, but I do keep it within arms reach.  Just in case I need to feel it all to remind myself of my humanity.

It's all a process, and I try to be as gentle with myself as possible.


Though through all of this, one thing has remained the same: My knowledge that everything is going to be okay.

Somehow I've been able to keep the faith that it will.

And right now,  my faith is the fuel that get's me up off the bed, off the couch, even out of the car.  It lets me dance.  It lets me laugh.  It allows me to live.

I took my life and everything I had for granted for so many years.

Not again.

Not anymore.

I will live my best life...my happiest life.  Because regret is rocky bed to lay in.

And we all know, I need my sleep.

Yes, a year later I am better.  And a year from now I have hope that I'll be even better than today.

Do your work, Father Time.

You do your work, and I'll do mine.

Stuff I seen on the Internet: Vol. 3

It's been too long!  I have so much exciting information to share!

On your marks.  Get set...

We're starting off with A new discovery in stem cells in Japan.  Check it!

Have you heard of the Asante's "snap pump?"  It recently partnered with Tidepool to bring patients better access to their data.  A win win all around.

Finally!  The FDA has approved the Dexcom G4 for pediatric use.  Children from 2 to 17 now have the green light.  (Can't wait for that approval for Medtronic's Enlite system!)

Billed as a tool for kids, but absolutely useful for adults with T1, Novo Nordisk hit it out of the park with their brand new, redesigned Insulin Pen.   Finally, a record of when someone took a shot, and how much they gave themselves!

The Strip Safely Campaign asks you, "Do you have 2 minutes to help shape the future of accurate diabetes testing?"  If you do, Bennet lays out clearly how you can be instrumental in helping make a difference!

Kerri Sparling's new book "Balancing Diabetes" has now officially hit the shelves!  Word on the street is it's the bomb!  It's burning a hole in my laptop just waiting to be read!  Can't wait!

Do you ever plan on flying with an insulin pump on board?  Melissa gives us information you might not know about bubble issues and pumps while flying.  A must read!

Take this 2 minute quiz and Novo Nordisk will donate money to the Diabetes Hands Foundation and Diabetes Advocates.  How much do you know about diabetes?

The new Medtronic Iports are now available in the US.  For children on shots, this will provide the much needed respite from so many pokes!

Lastly, here is an awesome info graphic Mike Lawson made to show us the power of sharing.  The Spare a Rose initiative was a booming success this year because people like you did something as simple as share.

Tomorrow is FRIDAY!  Start those engines!

Driver.

My boys are growing up.

I don’t think I ever wished my boys would grow down per se…but maybe they could slow down a little?

I swear we called J, “Baby J” for many years of his life.  And now here he is driving off in the truck, all by himself.  He’s gone from 6 in the morning until 3:30 in the afternoon and I’m supposed to be all nonchalant about the whole thing.

But I feel anything BUT nonchalant. 

Non/cha/lant ADJ:  A person feeling or appearing casually calm and relaxed; not anxiety = not me.

Oh.  And here’s a little thing.  He has Type 1 Diabetes.

I know you know.

Oh, I TOTALLY know you know.

That means a lot of rules.  And guess what?  16 year olds are notorious for skimming the edge of rules.  He does just enough not to get in trouble, but just enough to drive me bananas too.

New rules include checking his blood sugars before he gets behind the wheel.  And if he breaks that rule, or at least if he’s caught breaking it…he can’t drive the next day.

Let’s just say it out loud.  Rules are WAY harder on parents than on the kids.  I said it and I mean it.

I hate handing down punishments.  Punishments or consequences are very last on my “favorite things to do list.”

I haven’t had to hand it out yet…because even though he's been driving for months, he just started driving to school today…so we’re still baby stepping through all of this.  And it's a pretty straightforward drive, even though in my head it looks more like this:

      

What makes it even harder is J, (diagnosed at 8 months old,) feels his highs and lows.  His amazing A1C glows.  He is an anomaly when it comes to teenagers and Type 1.  So testing on a schedule chaps his hide.

But rules are rules.  Safety is safety.  Life is life.

Life.  Yes!  Let’s just keep everyone alive, shall we?

And he has a beard like thing on his face.  I just thought I'd throw that in there for context.

I know that growing up is hard on kids.   But can we just all take a minute of silence for the parents.

…

...

…

Thank you anyway.

Brave face: ON.