Our Diabetic Life in summary: Circa 2012

As has become my tradition, every year on the last day of December I post a sampling of my posts throughout the year.  This year has been especially difficult to sift through, but eye opening and healing just the same.

As I always implore you, take the ride with me.

In January we had our first endo appointment of the year, and my endo looked me straight in the eyes and uttered the same phrase four times.  It was the beginning of something revolutionary for me:  Letting go of the guilt.

There has got to be a better way. I've let guilt control me for so long I seriously think my body is deteriorating from it all. The words our endo said were so simple, but so powerful.

"Meri, you are doing a great job." I think I will hang those words on my wall to commemorate the small instant I truly believed. Maybe it will lead to more moments like that and I will be able to slowly but surely release my guilt in small, healing doses.

Also, I wrote a post comparing my life as a pseudo pancreas to Emotional Whack-a-Mole. 

We are expected to be brave, strong, venerable, humble, confident, certain, uncertain, angry, wary, harsh, forgiving, concerned, fighting, a schmuck, rejoicing, serious...and regardless of this all...unaffected. 

February brought Ryan's diagnosis:

There is the craptastic truth. All of it. Uncensored.

How are we? We are on the roller coaster. We are laughing one minute, delirious with tears the next. But we FEEL the prayers. And our hope grows stronger by the minute.

Somehow we know we will be ok.

Somehow.

And then in March, I chose hope.  And then chose it again.

I am holding two ropes. One in either hand. Each rope being pulled so my arms are taut.

On one side I have the pull of an army of friends and family. I have my faith and my hope.

On the other side I have despair. Fear. Pulled by a couple tiny thoughts. They are embarrassingly strong.

And as such. I stand here still.

...Hope is a choice. Faith is active. I can't sit here in limbo waiting time to pass. Waiting for answers.

I need get up and actively hope. Actively let go of fear.

TODAY I will. For me. For Ryan. For the boys. I am opening up my hand and letting go of that rope.

In April I realized I couldn't teeter any longer.  I either believed or I didn't, and soon realized I was "All in."

The other day someone at church asked me how I was doing. (I get a lot of that lately...I'm sure you can imagine.) But as I opened up my mouth to answer his question, I was shocked to hear the following words fall out of my mouth...

"I'm all in."

He looked at me for a moment, brows furrowed, trying to figure out what I said. I returned the look, pausing to figure it all out myself...

"With my faith that is. I'm all in. I've laid it all down at His feet...I trust that He'll take care of us."

And I do.

In May, on Mothers Day I tried to normal through by posting an homage to the D Mothers.

We love hard.

We try hard.

We cry hard.

 

We hug hard.

 

We hope hard.

 

We stress hard.

 

We are hard on ourselves.

 

We are D Mothers.

 

In June I admitted to the fact that I was having a hard time and dug up an old post to remind me that my perspective was entirely up to me.

There is something I need to get off my chest.

We're having a hard time.

 

Cancer is a big pain in the bahookie. It is worrisome and hard and no fun at all. Even the good news doesn't feel so great. When you are caught up in the fog of misery and worry it is easy to become blinded to the beauty and joy all around.

 

In July our family was blessed to attend the Friends for Life Conference in Orlando, Florida.

Sometimes life has a way of throwing us curve balls. Things happen that we don't expect and it takes the will of a thousand prayers to keep us walking upright.

Last week I was taken to the edge of my will. I pushed the envelope so hard I almost lost my ability to think in the process. Worry has a funny way of making you feel vulnerable and alone. Its easy to shut out the rest of the world and wallow in our own cave of misery.

I tried to do that on Saturday at the Friends For Life Conference.

I failed.

In August we rode the roller coaster of emotions as we found out that Ryan's treatment wasn't working.  I began the month declaring my faith in, "I Believe."

I believe God can make a way when there seems to be no way.

 And as hard as the next few months are going to be...I'm going to cling to that faith.

 One day at a time. One prayer at a time.

 I believe.

 

And then ended the month declaring my frustration of the unknown in "Kunk."

Ryan's body is currently failing him. He has no strength...he can barely walk. It is scary and frustrating and one of those things that could stay the same or get entirely worse. The unknown...THE UNKNOWN...it sucking the life out of any sanity I may possess.

 In two weeks everything has changed. What will happen in another two weeks?

 

How was I to know that only a couple days later, on September 2, 2012, I would lose the love of my life.

It was a day set aside for prayer on Ryan's behalf.  Those all around the world prayed for our miracle...and although not received the way that we wanted, it was received none the less.  Ryan left us with over a hundred brain tumors, and yet he was Ryan until the very end.  He knew us.  He loved us.  He laughed with us...he even worked until his last breath.  The doctors marveled that he was upright and cognizant in his condition.  It was the prayers, the faith and the love that brought this to pass.  We are blessed to have witnessed such a miracle.

I blogged a few days after Ryan's passing and tried to express the ache I felt from his departure.

 

My body is barely hanging on. I am so weak, and tired, and aching. I ache everywhere. But my brain is working overtime...leaning on the muscle mass it has gained the last few months.

 

I wish I could turn it off. I wish I could flip a switch and give my body a break from feeling it all.

 

 I don't know that I can do this. I'm completely scared out of my mind. But I know that Ryan knows I can do this, and that gives me the hopeful inkling that maybe, just maybe...I will.

 

In October, in addition to writing my feelings out on virtual paper, I began writing about Our Diabetic Life once again, beginning with "Alice in Diabetesland."

 

11:00pm

I was Alice. I was naive, and curious. When I ventured towards the bedroom I had no idea what would be on the other side of the monitor. I sat comfortably on B's bedside and stroked his cheek gently. Oh how I wish I could know peace like that. What a wonderful adventure his life is at 10 years old. I envied his ability to sleep so soundly. Growing curiouser and curiouser I brought the blood sugar monitor to his sweet hand and squeezed out the precious blood from his finger tip.

 

 "Hi."

 

 In an instant, I fell directly down the rabbit hole.

 

In November I wrote my most clicked on diabetes themed post of the year, "What are D Mom's made of?"

We are made of glue, fire, ice, owls, wind, crystal balls, dark chocolate, cheetah, diamonds, bologna, Bob the Builder, encyclopedias, butter, steel, tears, crock pots, swords and silver. 

We are a complicated concoction.

 

And then in December, as hard as I tried to numb myself from the pain...I realized there was no hiding from the inevitable in "Knock Knock.  It's grief."

I tried distancing myself from the pain. And in a small way, I succeeded.

Unfortunately, I didn't see the tsunami wave of grief looming above my head. I was too busy, remember?

As it turns out, you can't shut the door on grief. Eventually, it just knocks it down.

 

So here I am.

The last day of 2012.  Looking back hurts.  Looking forward is scary.  But I must make goals for the New Year. 

Friends of mine, The Diabetes Duo,  got together and made this fantastic, although completely unrealistic drawing of me.  My goal for 2012 is to picture myself in this light.  Believing I am better than what I see in the mirror.

And my second goal is to be happy.

This is my theme song for 2012.  I will work each day to find joy, and be thankful for all I have. (This version of the lyrics doesn't get all the words right, but it was the best I could find. In fact, it's probably better just to listen instead of read.)

I am going to try to be happy because even though I have lost my best friend, I have gained an angel.  He's looking out for me, and for the boys, I absolutely know this to be true.  Can you think of a better advocate?  Ryan always found the good in every situation.  He never complained...and I'm going to work hard to follow his example.  His faith, his joy in all things, they have inspired me to live my best life.  And in return I have faith that eventually, peace will find a permanent place in my heart.

Happy New Year, my dear friends!  I pray for each and every one of us that it will indeed, be happy.

Driving my life

We are all driving a life around.

Mine's an SUV...no it's not economical.  Get over it.

My life is big.  There is a lot of information I need to keep with me, so I need the room.  (And besides, my swelly brain needs the headspace, that's for sure.)

Steering my life takes concentration and resolve.  Every turn awakes a thousand different senarios that must be problem solved in seconds.  I want to pull it all over.  I want it to stop...but I have to keep moving forward.  Life wasn't meant to be watched from the side of the road.

Some days I even put my car in reverse and try to move back to where it was before.  Unfortunately, life doesn't work that way.  Reverse only lets you go back few feet...sometimes only inches. 

Other days I'm stuck in basal traffic hell.  My life feels like it's going nowhere, and I'm sure I haven't covered any ground at all.  Inching forward ever so slowly, honking my horn in frustration...those days I'm not my best me.  I don't do well in stop and go uncertainty.  

On those days I turn up the radio really loud and try to occupy myself with dreams of better blood sugar days to come.  I imagine myself hitting cruise control and moving at a good clip.  Maybe 55 mph?  I don't need to speed through my life...but progress would be nice.

A good blood sugar day would be nice.

Don't get me wrong, though.  Some days I'm haulin' arse. 

Some days.

But on those days it seems as though life likes to throw me curve balls. 

 

Road hazards.  

 

I'm never expecting road hazards...I think that's what makes them so frustrating.  The signs pop up in front of me:

"Watch out for falling blood sugars!"

"Soft temp basal ahead."

"Caution.  Carbs merging."


"Job application crossing."

It's hard to drive such a big life with so many distractions both on the road and in the back seat.  I see people driving small, simpler lives with way better gas mileage, and I admit, sometimes I get a bit jealous.

My big SUV is full of responsibility.  It's a wide load on a narrow road, but I've been driving it for so many years, I'm not afraid of the rocky terrain anymore.  What's a couple dings here and there?

My life is so big and clumsy, accidents are bound to happen.  I'm going to forget to bolus the boys now and then.  I'm going to guess carb amounts wrong when we are out to eat once in awhile.  Someone is going to have a dead pump battery and I'm not going to have a spare in the glove box.  I'm even going to make regular mistakes like running out of milk.

But my rig can take it.  It's got a mammoth engine. 

Driving our diabetic life is full of peril.  Even though it can be frustrating, and sometimes tedious, and most of the time unpredictable...it's all mine, and I wouldn't trade it in for anything.

Kelly Blue Book may look at my life and price it low...but I know you can't put a price tag on what I drive around every day.  I know that my big ol' clunker of a life has a beauty in every dent...every scratch.  All those imperfections tell my story.

So if you see my life driving by you, wave me down and have me pull over for a minute to take in the view with you.  Sometimes I get busy waving my fists at the speed bumps and forget to enjoy the scenery.

There is always room in my life for you.

My life runs on love afterall.  If I don't work hard to continually fuel it up, I'm stuck on the side of the freeway, on empty, watching opportunity pass me by...which totally defeats the purpose of progress.

Diabetes, grief and worry try hard to muck up my windows...but if I remember to keep the windshield wipers going, my perspective will continue to be a bright one.

I'm going to look at 2013 as an epic road trip.  I'm turning my life in a new direction, and covering uncharted territory.

We'll see where these four wheels take me.  I've set my GPS to happiness.

Buckle up, friends.

I have a feeling it's going to be a crazy ride. 

Meri and Bright: A Christmas Journal

Dec. 24,2012 11:00pm

I've gotten through Christmas Eve, and I've only cried 4 times.

Of course...the day isn't over yet.  Another hour waits patiently in front of me.

Ryan is in the front of my mind today.  I miss him.

Ok, cried 5 times now.

"Ryan would think that's hysterical." 

"Ryan would love that."

"Ryan knew how."

"Ryan would understand." 

 

All things that echoed through my mind today.

 

Ryan always insisted on wrapping the presents from Santa.  Last year I remember us laughing so hard our stomachs ached and tears streamed down our faces because we were miserable failures at wrapping.  We were sure the children were going to comment how Santa's "special elves" wrapped their presents. 

This year I didn't wrap the gifts Santa dropped off.  I didn't have it in me.  I contemplated hanging curtains and saying, "Your presents are behind curtain #2!"  But I let them sit under the tree, in all their naked glory.  It is what had to be.

We visited Ryan's gravesite as a family today.  It was a solemn occasion, but one assaulted with bravery and love.  We said a prayer together, asking that Ryan would know how much we love him, and know how proud we are of him.

I ate too much today.

Dec. 25, 2012  11:50pm

Today was surprisingly successful.  The boys didn't wake me up this morning.  Instead they all huddled around their new computer and made an agreement to let me sleep.  I woke at 8:00 wondering if they all lay in comas.  This is the first Christmas I wasn't up in the 6:00 hour. 

We showered and headed to my parents for breakfast.  The entire day consisted of food, a trip to the theater, more food, more food, a nap, desserts, eggnog, food, and A Christmas Carol. 

And fudge.  How could I forget the fudge?

One pump battery died.

One pump ran out of insulin.

Lawton alerted once.

A million and one boluses were administered.

Otherwise though, it was really a lovely day, and I'm thankful for my family and friends for providing much needed distractions.

It's midnight now and I'm about to call it a day.  But first...blood sugars. 

Wait for it...I'll be right back.

105, 223, 236.  Not a home run, but I'll take it.

I ate too much again.  Dear Treadmill, please be kind tomorrow. Sincerely, the girl full of fudge.

Favorite Christmas song this year:  O Little town of Bethlehem.  "Yet in thy dark streets shineth the everlasting Light;  The hopes and fears of all the years are met in thee tonight."

Favorite gifts:  The quilts my sister made for the boys out of Ryan's favorite shirts.  I did wrap those.  I'm not a complete failure.  And for myself, a book of coupons made by L...including "Good for one walk, Good for cleaning the bathroom, good for vacuuming," and my favorite, "Good for 10 pictures to put on Facebook."  (Hilarious!  He doesn't like when I put pics up of him for the world to see...so I always have to get permission.)

Favorite Christmas movie this year:  It's a Wonderful Life.  "No man is a failure who has friends."

Favorite movie quotes:  From LOTR the return of the king, "There's some good in this world Mr. Frodo, and it's worth fighting for."

and this exchange too:

Pippin: I didn't think it would end this way.
Gandalf: End? No, the journey doesn't end here. Death is just another path... One that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass... And then you see it.
Pippin: What? Gandalf?... See what?
Gandalf: White shores... and beyond, a far green country under a swift sunrise.
Pippin: Well, that isn't so bad.
Gandalf: No... No it isn't.

Favorite phrase taken from church:  "Christmas isn't about opening presents, it's about opening your heart."

Favorite scripture quote:  John 16:33 "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." 

And also, simply the phrase, "Fear not."

In fact I believe that will be my motto for the new year. 

 

Christmas accomplished. 

Meri Christmas, friends!

Looking up

The morning after Ryan's funeral the boys all wanted to go to school.  I'm sure it was their way of coping...trying to put their life back normal.

That morning I fed the dog, opened the back door and invited him outside to do his business.  It was September and the warm morning sun felt soothing on my cold face.  I stepped out into the backyard and looked up to the sky.

Leaves fell gently from the birch trees and danced around my head.   I closed my eyes for a moment and listened to the rustle of the warm breeze flutter through the branches.  And when I opened my eyes again, squinting at the brightness of the suns rays, I saw the sky alive with drifting clouds and birds flying peacefully through my line of sight.  The magnificent blue color brought tears to my eyes.  To my left something caught the corner of my eye, and as I turned I was amazed to see a white butterfly.  It hovered by me for a moment and then flew upward.  I watched it disappear into the distance in awe.

It was a tender moment as the words from the funeral echoed through consciousness:

"When the birds fly...I am there.

When the breeze rustles the branches...I am there."

Ryan was there.  In that moment I felt him envelope my body in love and tender care.

I had never felt closer to heaven than in that moment. 

And as I struggled days after to hold onto my faith...I often looked back to that moment to draw strength from.

And then THIS happened.

When I had that experience of watching the sunset, and felt it witness to me that Ryan is in paradise...well ever since then, I haven't stopped looking up.

The sky has become my anchor.

When I am anxious or down, I look up and see the bigger picture.  It is like I am afforded a small glimpse into heaven and it brings me inexplicable peace.

Has the sky always been so completely luminescent?  So transformative?  So beautiful?

Have I really spent so many years with my head down, absorbed in my own life, so brazenly overlooking the brilliance that is the sky?

The perspective I have when I look at the beauty above me changes me.  I see that my problems are small in the grand scheme of things.  I see that God created the heavens and the Earth, and if He can do that, certainly I can trust Him with my future.  Certainly my purpose here means something.

One would think that spending so much time looking up at the sky would make me feel small and inconsequential.

But in fact it creates in me a desire to reach a divine potential that I know is somewhere inside of me.  It causes me to feel the measure of my creation, and that moment when I pause to take it all in is always deeply reverent, deeply moving, deeply inspiring.

Is it any wonder I am obsessed with the sky these days?

It makes me feel closer to God.  Closer to Ryan.  Closer to Heaven.

Closer to understanding the kind of person I want to be...to become.

I take a dozen pictures or so every day.  My poor Facebook friends are spammed with my images.  But the sky is so amazing, I just have to share. 

Which I know is a bit crazy...because anyone can see what I see.  Anyone can have the epiphanies, and the moments of grace that I enjoy.

All they would have to do, is simply look up.

Which is what makes it so brilliant.  I don't think coming closer to our God is harder than just letting Him in.  Thinking about Him.  Trusting Him.  I'm pretty sure that is all He asks of us. 

Well that, and trying to do our best.

The storms come, and they are hard, and dark, and depressing.

But the peace for me comes from knowing that the sky is always bluest...the clouds are always fluffiest...after a storm blows through.

We just have to endure the dark days.

And thankfully, it's easier to do so when there is so much beauty waiting to peek through, right above us.  Behind those storm clouds?  Behind the socked in fog bank?  There is bright amazing blue waiting for us.

And that my friends...is called hope.

 

 

 

May the odds be ever in our favor.

Our Diabetic Life is just one big round of Hunger Games.

Diabetes is the head gamemaker.  He is ruthless.  And he keeps the game going no matter how dire the consequences may be.

I'm the mentor to my tributes.  I get to watch it all.  I have limited control...my voice is always in my boys ears...

But they are out in the arena.  Three of MY boys.

Odds?

In our favor?

Hysterical!

If it is a basal race with one...and we spend the entire day chasing highs.  Avoiding lows...zig zagging through the prickly brush of insulin sensitivity.  As soon as we win...as soon as one is safe and finds a cave to huddle up in for the evening, the next kid is being chased by a swarm of after breakfast spikes.

We are constantly moving.  There is rarely rest.  And when we are afforded a respite from the game, our down time is devoured anxiously, and is uneasily enjoyed as we know there is another beast around the corner waiting to pounce.

Blood sugar arrows are being shot from all directions, at all times, day and night.  The boys survival skills are strengthened with each passing minute...second.

As nimble as we are...  As savvy as we get...

The odds?

They are never in our favor.

Three boys with Type 1.

Three players in the arena.

How hard is it to just keep one alive?

I'll give you a hint:  Really hard.

Regardless, I would be unthankful not to note the gifts that are sent to us daily.

The gift of humor.

The gift of perspective.

The gift of appreciation.  We appreciate the little things.  A 100 blood sugar?  Nirvana!

We have experience that tells us we will win each battle...and eventually that will lead to us winning the war.

Or the game, so to speak.

As perilous the journey is...we are surviving.

And better than that?  They live!

As we live, we seize each day, each moment, because the game keeper may be ruthless...but he can't take away our love for each other, and the small moments of wonderful that are found within the game. 

And the fact remains that my boys have each other out in that arena.  They have each other's backs.

Sure, the odds are never in our favor, but we win each battle anyway.

My boys may bleed...  My boys may be punctured daily...

But they heal, too.  Wounds close.  Highs go away.  Lows are fixed.  Ketones are kept at bay.

My boys are strong.

The odds can suck it. 

 

Battle?  Bring it. 

There are three out there.  But they have each other, and they have me. 

 

And we are way better, together.

We can be the change.

I think we all remember September 11th like it was yesterday.  Where we were when we first heard of it.  The pang in our gut when we saw the first footage of the towers falling down.

I was pregnant with B, and more than anything I was overwhelmed at the thought of bringing a new innocent child into such a cruel, unforgiving world.  I cried anguished tears wondering what kind of future he would have on an Earth filled with so much hate and violence.

But you know what?  When he was born a couple months later, and I looked into his sweet amber eyes...it was like his goodness canceled out all the bad.  I brought something pure and wonderful into this world, and it meant something.

When he was born, I wasn't worried anymore.  I looked at his precious pudgy, dimpled hands and said, "I did that."

Terrible things happen.  They've been happening for what must be forever...murderous rampages are the norm in other parts of the world.  These days they are getting closer to home...which unfortunately makes it all so much more real. 

And scary.  And heartbreaking. 

It is the sad reality that we don't have control over those big bad things.  Almost all of the time, it is completely out of our hands.

But it is important to remember, that in our houses, our hands are all that matter.

Today I watched my boys from the doorway of their bedrooms.  One was doing his homework, one was studying for his Stats final, one was writing his book report, and the last was reading a book on his kindle.  They were peaceful.  They were trying.

And I looked at them and said, "I did that."

Why do horrible things happen?

Why did that man shoot those innocent, pure, sweet angels in Connecticut?

I don't know why...and debating gun control isn't going to answer that question or take away what happened.  Sure it is healthy to have conversations, and it is for sure a good thing to wonder how we can make this country better... 

Safer.

But the bottom line is, change starts with us.  Not with us telling other people what to do...it needs to start smaller than that.

It needs to start in our own hearts.

In our own homes.

Our actions.  The actions we take every day.  The example we are.  The good we are trying to put out in the world...

That is the kind of thing that can change history.

We need to do more looking within and ask ourselves, what have we done to make our home, our neighborhood, our school, our city a better place?

Have we shown love to others?

Have we shown understanding and kindness to those that are different than us?

Have we tried to reach out?

I'm guilty of walking past uncomfortable situations and pretending they aren't happening.  I need to reach my hand out more often.  The change starts with me.

Yes the world is scary, yet I feel as though we are entering a period of enlightenment.  I think everyone is waking up and saying, "Hey...we are getting tired of the hate and the violence.  It isn't ok."

But as scary as this world is...if we spent more time looking within ourselves...changing ourselves...well I think it would make a bigger impact than we think.

Mahatma Gandhi said, "We must become the change we want to see."

Small things are turning out not to be so small after all.

A smile to a stranger can change everything.

A hug to a classmate that seems to be suffering can change everything.

A call to an old friend could change everything.

"I love you," could change everything.

We need to stop judging who needs the help...and just start helping.  One human being isn't more worthy than another.  What a person does with what we help them with isn't our concern.  Our only concern should be trying to do good.  Kindness is contagious.  It will catch on if we all try.

Pointing fingers is getting old.  What is that saying?  If you point your finger at someone there are three fingers pointing back at you?  Fighting about who or what is at fault is like a cat chasing its tail.

Let's start at home.

If we can't change our own hearts, what chance do we have in changing others?

And if we must point fingers, let's make it a goal everyday to point our finger at something good...

And make it our business to say, "Hey...I did that."