Wednesday, September 17, 2014

Staring at my kitchen

I think too much.

I's ridiculous at times, if I'm being completely honest.

Sometimes I find myself sitting there in the middle of the day, while Emma is at school, and I'm thinking about the numbers. It's not so much that I'm worried about what her number is at that moment (that was me about 2 years ago though lol), but more so I will think about what her numbers were the night before...or that morning...what her ratios is currently for her breakfast bolus...what her basal rate is for 2:00am. I will catch myself blindly staring into the kitchen...because that's where her meter sits..on the counter...that's where I keep my tools of the command central, really. I stare off into the kitchen and the numbers swirl around my brain. Throw a little sleep deprivation for the last six years in there..add a little....ok a LOT...of caffeine in there from that mornings pot of coffee...and you sometimes wind up with a whole murky mess of confusion sloshing about up there.

I guess it's because I have been conditioned over the years to try and decipher the patterns...echoes of the diabetes nurses voice in my head encouraging me to "loooook for the patterns. Seeeek out the pattern. The key is in the patternnnn!" I wish the numbers would connect and form a brilliantly obvious and beautiful pattern for me every time. In reality, it's not that easy...and sometimes...more often than I care to think about....the pattern remains elusive to me.

After all these years, I'm definitely not as panicky as I used to be about it. I'm not a slacker either though. I guess I'm stuck somewhere in the middle. It is what it is and if I find the pattern in her blood sugar numbers and am able to make the adjustments needed, then great...fanfreakintastic. BUT, if I don't find it...if I can't find it....I hunker down and wait....I sit on my couch and gaze into the kitchen...waiting...letting it swirl around in my head....holding onto my patience....OR, I ask for help.

See, the thing about diabetes that has been uber hard to accept still, is that sometimes there is nothing to be deciphered...sometimes there is no rhyme or reason as to why shitty numbers occur...sometimes it just is what it is...and you have to remind yourself over and over again that it's ok.

Patterns can be a beautiful thing. But, so is the ability to have a quiet of numbers.

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 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.


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 many more site changes she has yet to much longer we will have to wait for that elusive cure. I look ahead and I wonder.

Yet, for now....right 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 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 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 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 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 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

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