D Blog Week, Day 1: Fired Up

This week I’ll be participating in D Blog week.  Today’s topic: “Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.”

There are a lot of things to be passionate about...things that directly affect our diabetic life and beyond.  And obviously, I have opinions about all of them, I share them here all of the time.  

My home.  My soapbox.

But the one thing that bothers me the most, is that people are still dying from misdiagnoses.  Adults and children alike.

Children are (barely) walking into Doctor’s offices and are being told they have the flu.

Adults are told they have high blood sugar and are given pills, on the assumption that they must have Type 2 Diabetes.

People with sudden onset Type 1 are rushed to hospitals, and instead of getting the care they need, they are getting medicines to mask the symptoms…and once it’s all figured out?  Sometimes it’s too late.

What is the answer?

Education.

If I could wish a wish, (and that wish couldn’t be for a cure,) I would wish that there was a program for people like you, and people like me (us) to go and speak at continuing education events for Pediatricians, General Physicians, Emergency Room Doctors and Nurses alike. 

I would tell them our story.  How my baby was almost lost, even though I brought him into the doctor 4 times preceding his diagnosis.

I would tell them that we were in the Emergency Room for over 6 hours before anyone even suggested that he had Type 1 Diabetes.

I would tell them in that six hours my child had seizures and his body was shutting down from severe DKA…that he almost died because no one could even fathom that a tiny 14lb eight month old could have diabetes.

I would tell them how Type 1 Diabetes is on the rise…startlingly so.  Scarily so.  Devastatingly so.

I would tell them one blood sugar stick could save a life.  And I would beg them not to label an adult or child Type 2 until the proper blood tests have been done.

If I could have a soapbox in every hospital, in every doctor’s office…I would gladly take it.

There are people dying that don’t have to die.

There are families in complete devastation that didn't have to be devastated.

One finger stick.  Followed by a blood test if the blood sugar number is not in normal range.

Simple things change everything.

We need a venue to tell physicians our story.

And we need one now.

If it were you?

If your child passed away at night from complications due to Type 1 Diabetes, how would you want the Diabetes Online Community to react?

Would you want them to ignore it?  Pretend it never happened?  Use denial to squash away the memory of your beloved?

Would you want your child’s face plastered over everyone’s wall declaring the monster that T1D is? 

Would you want warnings, and scoldings, and “I told you so’s” like billboards on a highway with your precious as the poster child?

Would you want anger attached?  Sarcasm attached?  Indifference?  Would you want judging and speculation? 

What would you want?

The way the online community commemorated and embraced Ryan’s passing was a beautiful thing.  It wreaks me to think that was only because he had cancer.  What if my husband had passed away from Type 1 Diabetes?  Would the fear of it happening in your own lives have changed your reaction?  Would the support have filtered away into the fog of fear?

Would the fear have made you angry?  Would it have made you furious that people were embracing a soul they never met?  Would you have had to take a break from Facebook?

I don’t know the answer to any of this.  I don’t think any of us know how we'll react to anything until we are face to face with it.

What I do know is a child is no longer with us.

A family is hurting.

Real people have faced their worst nightmare and are seeing this nightmare float around online. 

I just hope that if we post about it, we would post as if the mother were reading it.  Post as if the father had eyes on what we write.

Post with care.  And love.

Because even though we never met this child, she is one of our own.  That is what “community” is all about.

What if it were your child?

What would you want?

Do that.

And #SingForNicole

Taking his lead.

This morning I lay in bed, my body and mind aching…not ready to start the day.  I slept through my alarm and had mere minutes to decide if we should stay in bed, or make a mad dash to get up and ready ourselves for church. We never miss church, but today my heart was heavy and maybe, just maybe, I was feeling a little sorry for myself.

I stared at the wall, my eyes fixed on Ryan and my wedding picture.  His wide smile.  My young head cocked, admiring my groom.

What would Ryan do? I wondered.

I don't even know why I wondered it.  I knew what Ryan would do.

He would get up.

In an instant I was neck deep in a memory.  It was ten days before he passed.  He had just gotten off the phone with a friend and excitedly told me we were going to a San Francisco Giants game in a few days.

“Hold up.” I said.  “You have a doctors appointment that day.  “The” doctors appointment.  The one that will tell us whether you’ll be admitted into the trials or not.  The one that will tell us if your tumors are growing or shrinking.  What if it’s bad news?  I can’t imagine us going to a Giants game after such a heavy appointment.”

I was upset.  What was he thinking?

I didn’t have to wonder long.  He told me.

“Well, if it’s bad news we can come home and be miserable, or we can go and enjoy our time together by cheering on the Giants.  The news won’t change if we’re home hiding or if we’re out living.  Sulking isn’t going to make anything better; in fact I’m pretty sure it will just make things worse.  I choose to live, Meri.  I choose to hold your hand and enjoy a night at the stadium with my friends.”

I couldn’t argue with that, so even though it totally went against my grain, I agreed to go.  Sure enough, we did receive bad news at that appointment.  But also sure enough, we went to that game and I was able to form one of my most cherished memories with my husband. 

He could barely walk the steps up to our section, but he cheered loud and proud.  He was uncomfortable in the seat, but he smiled and laughed harder than he had in awhile.  He couldn’t eat the food because his medicine made him so sick to his stomach, but he sipped his water, serenely and contentedly.  His face was almost unrecognizable, swollen thick from the powerful steroids, but he wanted a picture together anyway.

 He smiled anyway.

He enjoyed life anyway.

He made the most of the moment anyway.

I need to make the most of my moments anyway, too.

Remembering all of this, I jumped out of bed this morning and ran to wake up the boys for church.

The times I want to hide are the times I’m woken up most to life.  Ryan taught me that life is what we make of it.

We can make it good.

We can make it bad.

We decide.

I try everyday to push away my defeated thoughts and move forward and live.  To make life worthwhile and as joyous as possible.

I try.

I don’t know how I muster the faith, but deep down I know that I’ll be happier if I move and take chances. 

Probably because Ryan showed me that.

Probably because Ryan taught me that.

And probably because I believe it…because of the way Ryan lived every single day to the fullest.

Those last months of his life could have been dark, and miserable.  Sure they were hard, but Ryan found a way to make them genuinely lighter.  It was such a gift to all of us.

How can I not take his lead?

Letting it in.

I wonder sometimes if you see me.  When I talk to you I always feel like you are there.  I wonder, every time, if you are.

I wonder what your world is like?  Here I’m stuck alone with years, months, minutes, seconds…does time tick for you?  Or is it all irrelevant for you now?

Now that you see the bigger picture, are my tears silly to you?  Is this ache so temporary you aren’t sure what the fuss is about?

Or do you remember what it was like here, not knowing?  Do you remember the veil upon our eyes shielding us from the truth so we can exercise faith?  Do you remember how hard that was?

Do you miss me like I miss you?  Or are you here with me all the time watching me miss you?

I hear you, you know.  I hear the thoughts that bounce into my head.  I hear your words clear and precise, “I’m proud of you.”  “I love you.”  “I’m always here.”

How can I have experiences that burst my heart, telling me with all surety that you are near…that you are protecting…watching…and then just days later question myself, and then wish, and pray that I will know again?

Sometimes my faith seems as though it’s a giant, and other days my faith seems like an insignificant part of me.

I realize that’s on me.

Does it all seem as pathetic to you as it does to me?

Every dream I have of you comforts me.  Do you make that happen?  Can you manipulate my dreams in a small way?

I hope you can.  I can’t bear to think that all those dreams were of my own fanciful longing rather than your reaching out.

I miss you.

Today I let it all in.  Today I let the sadness and the happy memories wash over me like hot sunlight.

Today on our anniversary I’ll allow all the worry, the love, the happiness, the anger, the confusion, the questioning, the wallowing, the celebrating, the everything…all of it…to take over.

Tomorrow I’ll do my best to build the wall back up.  I’ll protect my fragile emotions and focus solely on the boys and building a happy life for all of us.

Until we are reunited.

Until it all becomes worth it again.

Until we are side by side as we are intended to be.

Until then, I’ll keep trying.

And I promise, I won’t give up trying.

Because I know you wouldn’t want me to. 

I will keep trying to move forward.

I will.

I love you.

The fall: In drawings.

I’m practically a ninja.

That’s what I tell myself anyway.

15 years of nighttime blood sugar tests and I’m pretty adept at flipping around the obstacles in my house within the shadows of my children’s dreams.

 Sure, I’ve had my fair share of Lego mishaps.

 Action figures have tried to impale the soles of my feet.

 And I’ve slipped on a Pokemon card or two back in the day.

But lately my boys have grown out of such things.  The Nerf gun bullets that are around are a friendly foe and dirty clothes strewn on the floor are more than anything, a cake walk.

It was last night I faced an unexpected enemy.

I was in the 16 year old's room checking his blood sugar.  He was 102, which brought a stupor of thought and caused the creaky tired wheels in my brain to turn at fever pitch.  Temp basal I wondered?  Food?  He can drop almost a hundred points at night on a PE day.  What is my best course of action?

As my brain calculated and drew graphs of possible outcomes, I made my first and biggest mistake…I got up off the bed and started to walk with no thought to my surroundings.

That’s when the backpack sucker punched me in the shin and I began to fall.

My trajectory put me right into the glass closet door, so I shifted my weight adeptly, midair, and began careening towards the laundry basket instead.

Ok.  Let’s take a knee here and huddle up to discuss my options.

1) Obviously, letting my face take the brunt of the impact wasn’t practical.  It’s finally free of that zit that has persisted for the past month, I didn’t want to ruin that.

2) My body wasn’t long enough to make catching myself on the wall before landing an option.  I’m a ninja, not an amazon.

3) My sister in law told me the best way to fall is not to catch yourself with your hands, because wrists are weak and would take the brunt of the impact.  Her advice has always been to relax and roll with it.  She’s a teacher, she knows such things.

Ok huddle over.  Here is what I decided to do.

I fell on my knee, catching myself directly on my wrist while trying to eject my hand away from the floor.

The result.

Catastrophe.

My 16 year old was lucid enough to jump out of bed and help me up off the floor.  I was more horrified at the possible half-inch of butt crack showing than the fall itself.

I went to bed with my tail between my legs, defeated.

I’m sure there is a moral, or some kind of lesson easily glean-able from my actions.  But since I feel like I’ve woken up after a serious car wreck, and my brain has in fact, turned to Jello…I’m going to leave most the gleaning to you.

Although I will leave you with this:

“Our greatest glory is not in never falling, but in rising every time we fall.” ~Confucious