Stream of Consciousness

This path winds.

Inching through life as a half, trying to morph myself into a singular whole.  The path to here on isn’t easily seen.  It curves, and twists and even forks.  Deciding which way my feet should point is a process that can only be described as disheartening.

My courage wanes and flows as the moon circles about my head.  As the sun rises and sets my emotions bounce, the night forcing me to experience a new kind of darkness for myself.  By myself.

Each day I wake up and put on my courage like earrings lying on the bathroom counter.  Sometimes it’s been flung there, available.  Other days it’s nowhere to be found, and I’m forced to hunt.

Each footstep is thoughtful.  I can’t move without considering implications from every direction.  Where will this decision take me?  Will this decision affect my boys? What is in the best interest of the family?

What is in the best interest of me?  Can I even ask that question right now?  I am a mother.  My boys need protection and a mother who can lead…even if leading is with courage feigned. 

Fake it till I make it.  It’s the new story of my life.

Anxiety is new for me.  After losing Ryan I woke up months after vomiting, wrapped in the agony of the unknown.  Although the physical implications of this have waned, emotionally the anxiety still floats in my chest, squashed only by my determination to move forward.

Stepping, stepping, stepping.

I watch others walk through life without even a thoughtful glance at the sidewalk in front of them.  I envy that they can feel so free.  A quiet jealousy looms in my heart, knowing if they mess up they have their other half to catch them.

I’ve been falling for almost two years now.  Catching oneself isn’t easy.

But I will my chin to lift and I force my feet to move regardless.  Gaining momentum from decisions I don’t even know are the right ones…but ones that have been made, so I walk towards them anyway.

All the while listening to the words echo in my ears, “Everything will be ok.”

Because when you have children, anything less than ok is not an option.

Forging myself into a new whole, growing an identity I do not want…hurts.  But we all know it’s the compressive forging that eventually yields beauty, and even more than that, a final product.

I’m still being shaped.  I’ll endure that shaping while harnessing my faith in that final product.

The future me is somewhere down that windy path.  I’ll journey to the magnificence that is her…one day at a time.

One step at a time.

One minute at a time.

One second at a time.

One agonizing decision at a time.

I will find her.  And when I do she will thank me…and we’ll come together as that whole…

And know it wasn’t all for nothing.

We get by with a little help from our friends.

There is a man named Dov Siporin.  I asked him to be my best friend the first time I wrote to him.

He said yes.

Dov has been dying for 7 years now.  We all have, I suppose…but Dov has been told he’s been dying for 7 years now.  He has beaten the odds over and over again, and through his fight he has found the antithesis of it all by living.

Living louder and more boldly and with more love and vigor than anyone I have ever known.

* He dresses up in costumes on chemo days and hands out candy to all of those receiving infusions. 

* He has colon cancer and wrote on is a** with invisible paint that lit up during radiation.  "Does this radiation make my butt look fat?"

* He’s ran marathons.

* He has two children, one who has Type 1 Diabetes.

* For his birthday, on Dov's request, people all around the world gave cupcakes to those who needed a boost.

* He dressed up as the grim reaper and brought foam swords to the chemo ward so people could beat him up.

* He’s been in the newspaper, on the news, in magazines…everywhere…written by people inspired by his larger than life smile.

He reached out to me the day Ryan passed away, and then again, and again after that.  As he has cancer, the thought of someday leaving his family weighs on him.  Reading my words feels like he is glimpsing into his wife’s future after he is gone.  Because I'm making it through, he finds hope his wife will too.

And his words?  Struggling with the thoughts of death…The love for his family…What inspires him to smile and keep fighting?  It’s everything Ryan thought, and couldn’t say.  When I read his words, I feel like I’m reading Ryan’s journal.  His deepest thoughts.  Sometimes I feel like I shouldn’t be reading them.  Like I’m invading Ryan’s privacy.

He sent me this a few months after Ryan passed away.  He wrote it for his wife, but it made it to my inbox because the fates wanted me to read it too.  Almost like Ryan stretched one hand to Dov and the other to me and created this bridge. 

Some words for a lonely moment

There will be times, many of them,

When the loneliness presses in against you with sharp edges

When the hollowness hurts

When tears burn, and there is only a deep knot that

clenches and clenches.

Or when there is only an ache,

a mere memory of something that used to be there.

Or when you turn to share a stray thought or a joke,

and find an empty chair,

a wide expanse of couch,

a strangers face looking at you across a cup of coffee.

and yet,

Here I sit, remnants of my hair still wet with the cold fall rain,

the sounds of Tom Petty fading in my ears.

My lap is still warm from where you curled up tight against me

and wrapped my arm around you, confident that it would continue

How can I say I’m sorry? How can I reach out, across the days, the months, the decades of absence?  How can I hold you in these arms of too, too solid flesh?

Though I want, I cannot.

I can only offer a few words, a few tears.  Black lines on a page. The memory of something that once was.

And though it is not fair, though it is not enough, it will have to be; this echo of love carved onto the white expanse, this memory of warmth and safety.

10/13/12

Our relationship is impossibly complicated and at the same time purely simple in its origin.

Somehow we help each other.

And I love him and his wife in a way that can’t be defined.  They are part of my puzzle.

All of this to say there is a giant fundraiser in Utah for his family coming up next month.  In true Dov fashion, costumes are involved…and fun.  A ton of fun.

If you are in Utah on Thursday June 12, please participate in the Howl at the Moon Costume Fun Run for Dov.  It's going to be a fundraiser of epic proportions, for a family that could not be more worthy of the love and adulation.  

You can find all the information HERE.

I love you Dov and Tara!  I wish I could be there to tear up the course with you!  

Until we meet again, friends...

The Five Stages to an unplanned set change.

1) Surprise

Oh.  Look.  A 530.  Where did that come from?  I better bolus him for it.  La La Laaaa.

2) Hope

Oh.  Look.  He’s 513 a half hour later.  Maybe it’s working.  La Dee Dah Daaaa.

3) Denial

Oh.  Still 513.  He probably has ketones and needs more insulin.  Ta dah!

4) Rage bolus

CRAP!!!!!  Throw all the insulin at him!  BLARGH!

5) Tentative rip off

Oh.  He is back up to 530, (like he ever left there?) and nothing is working.  I will slowly, carefully peel off his set and hope there is evidence of some kind that the set is kinked, or blocked.  (Hint: There rarely is evidence.)  Pfftt.

Eventually, after all the stages, the set is changed.

It is always the right thing. 

I don’t know why I make it so hard.

  

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 6^th 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.