Tuesday, August 12, 2014

The Orange Moon

Lighting up the night with orange bursts of dreamy moons and stars yet to be wished upon
I reach for you beneath the trees
The leaves above us a blanket of strength and hope
Softly enveloping us in a cocoon of peaceful beauty

Your breath even and whispered against my neck

There is no time
No ticking of the clock
No number shouting from the rooftops
No pressure
No fear
No anxiety polluting the air between us
A thick fog of misty madness

The passage of time does not exist in this moment
Beneath the trees
Beneath the orange moon
Beneath the wishing stars
Star light star bright
Where are you hiding tonight?

Time stands still
As I hold you tight and
Dream of your smile
Your smile that holds the power of a thousand untold stories
Just waiting to be heard
As the last flickers of the moon burn out
And turn once again to the light


Tuesday, July 22, 2014

Defeat isn't real

Victories happen all over the world...every second of every day. People reach insurmountable goals and achieve greatness all the time. It's a fact.

In my opinion, defeat is non-existent. Defeat is something we tell ourselves when we feel like we are too tired...or too weak...or too small...or too...whatever. We tell ourselves these things and we whole-heartedly believe them in that moment. Other people might even tell us these things. They might scoff at our lofty dreams and snicker behind our backs at what they consider to be something silly. However, defeat is not real. Defeat is not an option. Defeat is non-existent. It's simply a moment in time where we must choose to continue on or wait a while longer and wallow in our setbacks.

In this life with diabetes, I feel defeated all the time. A strain of ugly blood sugar numbers...a failed pump site...a combo bolus gone awry. I feel like a failure when I see the effects of my mistakes all over my child's face...the dark circles under her eyes...the shaky hands of a low blood sugar...the tiny holes in her fingertips from countless blood sugar checks as I battle yet another high blood sugar. I see my own defeated feelings mirrored back at me in her eyes. I see it...and I feel it...but I am NOT it. I'm not defeated anymore.

I kicked ass at being her pancreas today. I have been battling high blood sugars for what seems like forever...due to seasons changing...the hormones of a ten year old body...the randomness of summer day schedules. I have felt like a failure a lot lately.

But not today.

Today I won. Today we won.

Today was a victory of epic proportions in my eyes.

So I am writing this to acknowledge those of you out there who might have been feeling the weight of defeat...and those of you who won today as well. I raise my glass to you and smile in silent victory...together. It's a quiet victory on the outside as we sit here after midnight...but it's a sweet victory. A hard fought win. I'm proud of you for sticking it out. We may stand in solidarity in the wee hours of the morning...meters and lancets in hand...squeezing blood from our babies fingertips...but we stand as one together in spirit always and forever...and for that I'm greatful.

Thursday, July 17, 2014

Our shoes

So, I haven't blogged in a while. As we were driving to the beach today, I started thinking about it actually. I wonder if I've said all I need to say about diabetes for now? I wonder if my heart and my mind has somehow found some sort of peace with it finally? I wonder if I've just gotten to the point on this journey where more of my mind is focused on living and making memories with my kid...that I just don't really focus on the diabetes aspect of things as much anymore?

I mean I still think about the numbers...I'm sure I always will. I still get that panicked tightening in my chest when she has a dangerously low blood sugar...like she happened to have this evening in the deodorant aisle at the grocery store...and I had to open a bottle of soda and hand it to her...haul her into the cart because she could barely walk...and quickly finish our job of checking out and getting home. I still feel it. I still don't like it. I still worry.

But it's just not always at the forefront of my mind anymore.

LIFE is.

LIVING is.

I look back at how far we've come and how long we've been on this journey and I'm amazed that we've made it. I'm amazed that we've survived the insanity. I'm proud of us.

I look forward and...yes...I worry...I wonder what sort of obstacles we will encounter up ahead and how many times my heart will skip a beat at an ugly number...how many more site changes she has yet to endure...how much longer we will have to wait for that elusive cure. I look ahead and I wonder.

Yet, for now....right here...in this moment...I'm ok. We're ok. We are living and laughing and learning. I stand here at this spot on our path and look below at my feet and I see acceptance. I see strength. I see two feet firmly planted below me...and her two feet beside me. Our shoes are worn and slightly tattered....but they are still bright...still sturdy...and they still have plenty of miles left in them.

Tuesday, June 17, 2014

Step away from the edge

The 26th of this month will mark six years since Emma's diagnosis with type 1 diabetes. On one hand, it feels like a lifetime ago...I was a different person...she was a different child...it was a different life all together. I was naive to so many things in life. On the other hand, it feels like it was just yesterday that I stepped through the hospital doors with her tiny hand in mine...my heart pounding in fear...real honest fear...the kind that grips your heart in it's frozen hands and laughs right in your face as you struggle to put one foot in front of the other.

We did it though. We made it. We are still here.

If you had asked me six years ago if I could foresee a day where diabetes wouldn't always be at the forefront of my mind, I would've said no way!
If you had asked me if I would've thought that my kid would ever stop struggling and fighting and crying tears of complete fear before ever needle...every finger poke...every injection, I would've looked at you with hot tears burning my eyes and whispered no.
If you had asked me if I would ever feel capable and confident and like I could handle whatever diabetes threw my way, I would've laughed right in your face and sputtered out a maniacal NEVER!

And yet I say again....we made it...we are still here.

In a little over a week, Emma and I will be commemorating the day with a couple friends. I'm taking them ziplining out in the forest....80 feet in the air. I'm scared...she's scared...her friends are scared....but we are excited! Emma chose this activity because it's something she's always wanted to do....and who am I to stand in her way?

I know that I will stand behind her before she steps off that ledge to fly across to the other side...I will stand there and be in awe of her bravery. I will be in awe of her love of life...of living. I will be in awe of her ability to not let anything stop her...not even fear.

The way I look at it, fear is powerful. Fear is an emotion that can cripple you or propel you onward towards your dreams. Your ability to choose which path that fear will push you...is something personal to you.

When I walked through those hospital doors six years ago, I chose to let the fear propel me forward...I chose for her...because of her....because I wanted her to see from day one that fear is never an excuse or a reason not to do something.

Twelve days from now, when I stand behind my daughter and cheer her on as she steps off that ledge, I will be greatful for the memories we are making....I will be greatful and humbled and proud.

Sunday, June 1, 2014

Thank you

To all of you out there that share your life experiences about type 1 diabetes with the world...thank you.

To all of you that raise what you can for JDRF or whatever diabetes related organization you choose...thank you.

To all of you that put on fundraiser after fundraiser year after year...spending your own money to set it up and using your own time to make it happen..thank you.

To all of you that make phone calls, send emails, go door to door, ask your friends and family or even complete strangers for a donation...thank you.

To all of you that walk, run, ride, or speak at any gathering for these charities...thank you.

To all of you that run camps every summer for our kids...thank you.

To all of you that post on social media, write books, blog, call a newly diagnosed family, or visit them in the hospital..thank you.

To all of you that take care of that special type 1 in your life...day after day...sleepless night after night...thank you.

To all of you that support, volunteer your time, or even simply drive around with a JDRF sneaker decal stuck to your car window...thank you.

To all of you that do what you can...when you can...no matter how big or how small...thank you.

It's not easy.

It's not always fun.

But it's always worth it...and it's always appreciated...and I will always be greatful...so...

Thank you.

Friday, May 23, 2014

Rhymes from my heart

Sometimes I like to pretend that I am you
And you are me
We see the world through eyes that are one
Forever dreaming of an honest land
Full of honest hands
That reach toward the skies
Yet to be imagined
Yet to be touched
Sometimes it's just too much
And the words escape me
The light betrays me
The night enfolds me
In it's arms
Cold and blinding
Never finding
That star of reason
Shining bright like a beacon of hope
Upon the vast sea

Whatever will be...will be

Don't you see?
You and me
We are free
And always will be

Monday, May 19, 2014

What diabetes is REALLY about

To me, diabetes isn't about the needles or the blood. It's not about the highs and the lows. It's not about the worry or the fear.

To me, diabetes is about the little things that most people wouldn't even think twice about...things that they take for granted every single day. Things I myself used to take for granted every day. Things like taking a bite of food without thinking twice about how many carbs are in it...or what my blood sugar is...or if I plan on running around at the park after I eat it. Things like sending my kid off to school without a second thought as to whether or not she will be ok and survive the day. Things like sleep....going to sleep...and just sleeping without a single thought of her numbers running through my mind. Things like sending her outside to play on a warm summer day and seeing her friend hand out freezies or Popsicles to the kids they are playing with....all of the kids except for mine...because she didn't know if she could have one too...because she didn't know the carbs in it or if she should bolus because she was playing and active. Just knowing that she was the only one not to partake in a typical and simple summer day kid occurrence....because she has to think twice...she wasn't sure...so she didn't have one....ahh...that kills me. To think that a stupid freezie has the ability to piss me off and make me sad for my kid...well, it's just absurd....but it's real...it's true...it's valid....and it's the way life is for us.

Diabetes is about those little things.....those moments that we all take for granted....all of us EXCEPT for the ones who live with diabetes in there house.

I know I have a choice in how I react to moments like these. I know I can choose to focus on the positives...the fact that she made a smart choice in that moment and decided not to eat a freezie because she wasn't sure. She could have just ate one. She could have had it and not said a word to me about it. But she didn't. She chose not to eat one because she was unsure....and that's ok...that's smart...that's what I need to focus on...the fact that she chose wisely and kept herself safe. I should focus on the fact that she had fun playing in the sun with kids...laughing...being a kid...and she didn't have a low blood sugar...she didn't let diabetes stop her.

I should focus on that.

But right here...right now...in this very moment....I'm focusing on the stupid freezie that she didn't eat...and it's upsetting and annoying and heartbreaking and maddening all rolled into one.

I'll get over it. I told her what to do next time if it happens again.....eat the freezie if you want one.

But for now....I am allowing myself a moment to hate the freezie she didn't eat.
I'm allowing myself a moment to hate diabetes and all the little things it affects.

Just for a moment.

And that's ok.