Stable is a Four Letter Word

Last week was our version of Hell Week.

We went to the eye doctor on Monday, the Endocrinologist on Wednesday and the dentist on Saturday.

I'm not sure whose idea that was but it was a BAD one.  Remind me never to schedule appointment like that again.  By the time we walked out of the dentist on Saturday morning, my nerves were shot and I needed a drink!

It's recommended that people with diabetes visit the eye doctor yearly to make sure nothing is wonky with their vision (my very technical explanation).  Sweets originally went to the eye doctor at 6 months old and saw a specialist.  This is because Jason is the most near sighted person you will ever meet.  (I'm not exaggerating here.  We took her to his specialist to make sure that if she had some of the same problems that he has that we corrected it as early as possible.)

Jason has been visiting this office for years so it's kind of like Cheers when we walk in.  Everyone knows him.  And they have sort of known Sweets since she was born.  So they love her.  And it's pretty casual.

But I can't even count how many times someone asked me if her diabetes was "stable".

Ummm...... Yes?  No?  Maybe?  Sometimes?  When Venus is in retrograde and a zebra with pink stripes knocks on my front door?

How do I even start to answer that question?

Of course, it's not just doctors and nurses.

It's family and friends, too.

Sometimes it's the people closest to us who just don't get it.  They are the ones asking if our kids are under control yet or if they are stable.

And THAT is most irritating.  And disappointing.

That makes us feel the most alone.  Because if those closest to us don't understand.... who will?

And maybe we're a little sensitive (or at least I am...).  But it's that word "yet" that gets to me.  Like our kids should be under some magical control where their blood sugars are always in range.  You know... because that's possible.

It makes me want to stand on a table or something and scream "Don't you get it?!?  There is no stable with diabetes!  There is no control!  Control is an illusion.  It's a mirage.  We MANAGE diabetes.  There are still highs.  There are still lows.  No matter what we do.  We will never be perfect.  We can never replicate the pancreas to perfection.  And that's just the way it is."

I really do try not to take it personally.  If you don't live it there is just no way you can really understand what it's like.  And I certainly had no idea before April 27, 2009.

Maybe that's why this life can feel so lonely and isolating.  Because when you get down to the nitty gritty - very few people really understand.

However.... when we DO find someone who understands....  Priceless!

I would be LOST without the Diabetes community - both online and in real life.

And I am so grateful for the wonderful people we find that - while they don't really get it - they try.

At the dentist on Saturday morning, we had a little problem.  The endocrinologist has drastically lowered Sweets I:C ratio for breakfast.  That had worked fine at school.  But this was the first weekend...

She was acting off.  She was really nervous and emotional.  She cried.  I had to hold her hand during the x-rays.  She had a total meltdown when the hygienist started brushing her teeth.

I should have known.

We were watching Dex and it was going down... so we tested.  49

No wonder.

So what does one do when low in the middle of a teeth cleaning?  Eat Smarties!

Of course, I didn't have a juice in the bag.  Or my purse.

But the dentist and the hygienist were beyond awesome.  They were so kind.  They didn't make us feel bad.  They didn't act put out.  They just rolled with it.  And they were so very kind to Sweets.  They saw her nerves and talked her through every step.  And as soon as her blood sugar started coming up, she was fine and back to her normal self.

I am so grateful for them!

We all have times when we get so irritated by the ignorance - either willing or unwilling - of those around us.  We all have been hurt and disappointed by people close to us who we think SHOULD understand.  And yet... they choose not to be involved.  Not to learn.  Not to really understand.

There's nothing we can do about that.

And that is really hard to accept.

But it makes it so much sweeter when we find people who DO get it.  People who want to learn.  People who want to understand.  People who are living the same life.

Today I'm going to give some of those people a big hug!  And just forget the rest.

Because you can lead a horse to water.  But you can't make it drink.

Freckles, Diabetes, and Heaven

It started out innocent enough.

A simple conversation in the car.

Revolving around - what else?  Her birthday.

Her birthday has the been the main focus of LIFE for awhile.

She said to me, "Mom, I wish my birthday was on Christmas and then EVERYONE would get presents!"

Then she asked, "Whose birthday is it at Christmas again?"

"You mean Jesus?  Or someone else?" I answered.

"Oh yeah.... JESUS!" she replied.  "Who else's birthday is it?"

"Well, my grandma's birthday was Christmas Eve.  Gaga's Mommy."  I said.

"WHAT?!?" she screamed.  "We missed it!  Why did we miss it?  We were having Christmas Eve with  Nanny and GDad!"

"Well, we didn't really miss it." I tried to explain.  "We just didn't celebrate it."

"Why not?" she asked.  Quickly followed by, "OHhhhhh yeah.  She's dead.  I forgot."

"Yes.  Who knows?  Maybe she celebrated in Heaven with Jesus." I said.

"What does Heaven look like?" she wondered.

"I don't know, Sweetie."

"Is it all fluff and clouds and stuff?  Where is it?  Is it up in the sky or what?"

"I don't know.  I've never been there."

"Are people babies in Heaven?  Is Heaven just full of babies?"

"No.  We do know that.  You don't turn back into a baby.  We don't know exactly what you look like in Heaven but the Bible tells us that our bodies are made perfect."

"So I won't have freckles in Heaven?"

Giggling to myself... "Well, I don't know about that.  But I do know that in Heaven you won't...."

She cuts me off.

"I won't have diabetes in Heaven."

"Nope.  There is no diabetes in Heaven."

Silence for a few seconds....

"I want to go to Heaven.  I want to go now.  I hate diabetes sometimes.  It hurts.  I don't like.  I just wish I could go to Heaven."

"I know, Sweetie.  One day.  One day you will.  But let's just hope it's not too soon.  Your Mama would miss you too much!"

And she was off.  Hopping out of the car.  Running into the house.  On to the next thing.

But those conversations make my heart feel like it's in a vice.

Whose seven year old tells them that she wants to go to Heaven to be rid of disease and a life that is all she's known?

The thing is - I know that she does not understand.  To her, Heaven is a place similar to Florida or Hawaii.  It's someplace you go.  Someplace physical.  And although she knows you don't come back - she can't really process that.  So I know that those words are the words of child.  With childlike understanding.

But they still sting.

They are still hard.

I can't help but believe this is true.

It hurts me, as a Mama, to know that she's in pain and to not be able to make it better.  To not be able to take it away.  To know her life has been changed in a way that none of us can comprehend.

Even though we know it's not in their best interests to live a life filled only with the good, the easy, the beautiful, the perfect (because that's not REAL) - we, as parents, still wish we could make their lives easier.

But I believe that she IS being prepared for some kind of extraordinary destiny.

Because I see her toughness.  Her fight.  Her confidence.  Her courage.  Her belief that she can do anything.  I see her spunky, independent streak.
I see her joy.  I see her happy spirit and her sense of humor.  I see her compassion.

And I know that diabetes is inexorably linked with her being.

I see her working through it all.  All the normal seven year old questions.

It's just that she's got a little more to process.

And it's my job to help her through it - any way I can.

Because, just like EVERYONE with diabetes,  she's pretty awesome.  And she's got a pretty awesome future waiting for her.

Let's Make a Deal! Worry, Guilt, and A1c

The guilt and worry of a D Mama knows no bounds.

It's like an ocean.  Every changing.  Going in and out.  At times it's depths are clear and close.  At times no end can be seen.

Maybe it's just because we are mothers.

But it's more than that.  Our worries and our guilt run deeper than average.

We have seen pain that we can't make better.  We have dried tears shed due a disease that just can't be adequately explained to a child.  We have sat in hospital rooms.  We have waited for test results.  We continually make life and death decisions that affect not us... but our children.  The ones we want nothing more than to protect.

We know we did nothing to cause this disease.  We know there was nothing we could have done to prevent it.

And still....

It lurks.

The worry is there.  Hiding around dark corners and under the beds of our sleeping sweet ones.

The guilt is there too.  Sometimes it stares back at us from the meter.  Sometimes we find it when all we want to do is make it better and we are left with an empty bag of tricks.

This is doctor week.  Monday we went to the eye doctor.  Today we went to the endocrinologist.  Saturday we go to the dentist.

Remember - envy is a sin!  Don't be too jealous!

The report from the eye doctor was that everything looked good.  She may need glasses in a few years but that has nothing to do with diabetes.  Both Jason and I had glasses before we were her age.

 I am not looking forward to the dentist.  Many nights of juice do damage to little teeth.  And then there's brushing.  Stick needles into her body and she doesn't even flinch.  Try to brush her teeth and you'd think we were beating her.  Go figure.

Today at the Endo we got not only her A1c number but also her cholesterol, celiac and thyroid results.  Celiac and thyroid were both great.  A1c was up .3 but considering the struggles we are having with exercise and growth spurts (she's grown almost 2 inches in 3 months) I am considering that a small victory.  Cholesterol was back up.  Ldl to be specific.  Hdl and Triglycerides were great.  We have battled this since her diagnosis.  It went down a little but this time it went the other direction.  We have worked with the dietitian and everyone is in agreement that it's not caused by diet but by her family history.  We have some things to try (I'll go into that later) but our path to cardiology is set.  Given that in the past two years alone her grandfather had his aortic valve replaced and her father had a heart attack at age 40 with no risk factors... I'm ok with that.  Let's keep an eye on her!

At least, the logical part of my brain is ok with that.

The emotional part...

Logically, I know that we have done everything possible to lower her cholesterol naturally.  She has a great diet.  She eats very well.  She is thin and active.  I also know that we are doing our very best to keep her blood sugar level and in range.  We have been pulling every trick we know.  And thyroid and celiac and eyes are totally out of our control.

But those little seeds of guilt and worry and doubt are there.

And the ONLY way I can think of to get rid of those seeds is to not water them.

I have to tell those thoughts that they are not welcome in my head.

Those thoughts -- those seeds -- are poisonous.

Earlier today I posted at picture of Sweets going to the Endo with her suitcase filled with things to keep her busy.

One of the hashtags I used was #drentreportcard

One of D Mama friends, Moria, made a comment that really made me think.  She said she knew that I referred to it as a report card in jest but feels that even when we kid about it, the implied negativity can seep into our subconscious.

She's right.  I was joking.  I see it as a report card in the sense that it's when we get our test results.  I try very hard to not judge myself or my effort by the number.  And I am almost paranoid about never letting Sweets hear us say anything that could make her feel to blame for her diabetes.

She's also right about it affecting us more than we think.

At first, I couldn't understand why people would get so worked up about A1c.  If you're doing your best... how can you feel bad?  But the longer we lived with diabetes...  The more I thought about what those highs and lows do to her body...  The more I heard people bemoan themselves and give themselves (me included) "Bad mom of the year" awards...  The more I got it.

The more it seeped in.

It's easy to think that our best is not good enough.  We see others with A1c numbers lower than ours.  We wonder why it's our kid who has diabetes AND ______ (seizures, high cholesterol, poor eyesight, celiac disease, chron's disease, etc).  We look at other people and think their lives are perfect.  Or at least easier than ours.

They are not.

I think the change has to come from us.

I know how frustrating it is to get a number - be it A1c or cholesterol or whatever - that is higher than you want when you feel like you have worked yourself into a stupor trying to change it for the better.  I know how disappointing it is.  I know how we take on the weight of the world.  I know how we expect perfection of ourselves.  Because our kids are relying on us.

I get it.
I feel it, too.

But maybe... just maybe... we need to stop beating ourselves up.  For that A1c that we think isn't good enough.  For that cholesterol number that isn't coming down.  For that bolus we forgot to give.  For that low we overtreated.  For that night we slept through the alarm.  For that disease we couldn't prevent.

I was texting back and forth with my best friend the other night.  She was beating herself up about her child having cavities and feeling like it was her fault.  I was sharing my frustrations and how I just didn't know what else to do or what else to try.  To lower her cholesterol.  To keep her steady during activity.  To lower that post breakfast spike.  I told her that if she was sucky mom then so was I.

This is what she said...  "For the record, I think you are the best pancreas ever.  And YOU, unlike her real pancreas, do not EVER give up or give out!!! It's not your fault."

I know. She's awesome!

She's also right.

If we were sitting around all day, never bolusing our kids, feeding them only bacon and cheeseburgers and pixie sticks, letting them run wild.... ok - THEN we could feel some guilt.

But we don't.  We kill ourselves in the pursuit of the unattainable.  Perfection.

I doubt we will ever stop striving because - after all - it's our kids we're talking about.

But hopefully we can work on being kinder to ourselves in the process.

Hopefully we can tell those thoughts that try to make us feel inadequate to get lost.

What do you say?

Deal?