Sunday, November 23, 2014

Six years, four months,and twenty-nine days

Diabetes sucked today. Plain and simple. It sucked.

Notice how I didn't say that I was the one who sucked? Yea...me too. I guess I'm making progress in that aspect. In six years time, I've learned that when numbers suck and everything seems to be going wrong...that it's not my fault...but rather that it's diabetes fault.

Emma was high all day today...all freakin day..and it took me until almost 10pm to figure out why. I kind of feel like I've just run a marathon to be honest...which is strange to say, because it wasn't me and it wasn't my body having to go through the high blood sugar extravaganza...it was hers. Nonetheless, it's how I feel right now at 10:30 on this particular Sunday night.

I realized though...that while I do know what it's like to fight this bastard of a disease day in and day out for six years, four months, and twenty-eight days.....I don't have a clue as to what it's like to fight it for six years, four months, and twenty-nine days. I don't know what will feel like. I don't know what tomorrow will bring. I don't know what numbers will show up on the screen of her blood sugar meter. I don't know if it will be another battle of highs...or maybe lows...or if it will be an average typical day of decent numbers.

I don't know. Because I'm not there yet.

Back when she was first diagnosed, I used to think ahead all the time. I used to wonder if she would be ok...if she would catch a stomach virus at school...if she'd have to endure struggles because of this disease. I would dwell on it. I would worry about it. I would get caught up in a never ending mental loop of "what ifs?"

I don't let myself live that way anymore.

I focus on today. I focus on the here and now. I live in the moment with her...because the moment is what I have in my grasp. I keep trying.

And when tomorrow comes, I will try again. I will know what it's like to do this for six years, four months, and twenty-nine days tomorrow...and that's how I will handle things then.

Friday, October 24, 2014

Have you ever?

Have you ever closed your eyes for a second after dinner and woken up two hours later wondering what day it was...where you were...what the hell your kids blood sugar was...and why she wasn't getting ready for school...even though you come to find out it's actually 10:30pm on a Friday night?

Have you ever driven around town running errands with the volume on your cell phone cranked to full blast AND the vibrate feature turned on and the phone placed in your lap just so you can turn up the radio when your jam comes on and still be able to hear if your kid is trying to reach you from school because she is low or high?

Have you ever unintentionally placed all the items on your pantry shelf with the nutrition info label facing outward just so it's easier to see what to bolus when your kid wants a snack?

Do you know the carb count for an Oreo cookie by heart? 8
How about a turkey sub from subway? 46 for a 6"
How about a cookie dough blizzard from DQ? 104...yes...one hundred and freakin four!

But yet, you can't remember your husbands cell number...and you have to REALLY think about what year he was born?

Have you ever measured out a cup of water for your kid to drink...only to realize immediately after pouring it, that water has no carbs and that whole task just took a whole lot longer than was necessary?

Have you ever found a used test strip in the litter box?

Or in the refrigerator?

Or in the lint trap of the dryer?

Have you ever had to kneel down to look in the eyes of a real life hero?

Have you ever held their hand and stared at the thousands of tiny black holes in their finger tips and felt your heart ache?

Have you ever wondered how you managed to stab your own flesh and blood in the fingers, the arms, the legs, the belly...thousands upon thousands of times for more years than you care to think about at this point...and managed to not kill them in the process...or lose your sanity along the way?

I have.

I've done all these things and more.

If you have too...

Thanks.

Thanks for making me feel like the impossible is entirely possible.

Wednesday, October 8, 2014

Denial

I read a post online today from a newly diagnosed D-parent. She shared how she is only 2 1/2 months into this life and she felt like she was in denial. She asked if this was normal.

I don't know why, but this post hit me. I read countless posts every day that are diabetes related...and many of them stick with me...many I feel compelled to reply to...offering up support or encouragement. I am usually able to carry on with my day and the post is gone from my thoughts for the most part.

Except for this one.

I can't stop thinking about this parent. I think because that parent was me...six years ago.

I remember taking Emma to a children's museum just a couple of months after her diagnosis. I remember watching her run around with the other kids there...playing...laughing. I remember thinking how this just couldn't be true. I mean look at her! She looked just like those other kids. She didn't look like anything was wrong. She didn't look unwell. I remember thinking that maybe the doctors were wrong...maybe I would wake up tomorrow and she wouldn't have it anymore...maybe the doctors would call me one day and say that they had made a mistake...she didn't have diabetes...she just needed an antibiotic of some sort and she would be right as rain before long. I remember thinking if I just went to bed that night...and closed my eyes extra tight...and slept the night thru...that I would wake up in the morning and this all would have just been a really long...really horrible nightmare.

And then I took her for lunch at the little cafe in the museum.

And diabetes smacked the denial right out of my head again. I pulled out her meter and jabbed a needle into her tiny little finger...saw her wince from the pain...just for a second though...a quick second...because at that point needles in her fingertips were already no big deal to her...she didn't cry anymore...she didn't voice to me that it hurt...it was already just her accepted reality. I scoured the menu for something that I knew the carb count on...I ordered that even though it wasn't what she wanted...because at that point I still wasn't comfortable guessing the carbs in her food...and I didn't know that many by heart yet. She got her food...ate it...and I jabbed another needle in her arm.

I lived in denial for a while. It was something I held onto for dear life. I had to. It's what got me through those first few weeks.

Looking back on it now, I think I confused denial with hope. I hoped it wasn't true. I prayed it wasn't our reality.

Here we are all these years later and I still sometimes will randomly feel that waking nightmare scenario seeping in to my thoughts. The way we as parents cope with this life is really a beautiful thing if you think about it. We grieve the loss of what will never be. We strive for unattainable perfection. We hope.

So, to you, the newly diagnosed parent sharing your innermost thoughts today....I say thank you. Thank you for being brave and speaking from your heart. Thank you for allowing yourself to feel whatever it is you're feeling whenever you're feeling it. Hold on to each day...hold onto it with everything you've got...and know that you can do it....know that you ARE doing it...and it will be ok...I promise you that.

Monday, September 22, 2014

I believe

I believe
I believe in love at first sight
I believe in dreams come true
I believe in wishing upon all the stars in the sky
I believe in that inner voice whispering to give it a try
I believe in perseverance
I believe in fate
I believe it can be done
I believe it will be done
I believe in choosing happy
I believe in hope.

I also believe in facts
I believe in experience
I believe in making mistakes
I believe in making mistakes
I believe in making mistakes

I believe in learning from my mistakes

I believe in trying my best
I believe in you

and

I believe in me.

Wednesday, September 17, 2014

Staring at my kitchen

I think too much.

I do...really...it'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 trade...my 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 mind...free 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.