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.

Friday, May 16, 2014

Gross

It's been almost six years since we met diabetes.
My daughter has rolled with the punches since she was just four years old.
She's accepted it better than I think I ever could have at her age.
She rarely mentions the negatives that go along with it...the needles...the blood...the highs or lows.
Simply put....it is what it is for her.
I have always encouraged her to share her feelings and her thoughts....to let it out if she needs to...that it's ok to be angry or sad or pissed off. That it's ok to be jealous or afraid or worried. That it's ok to feel however she is feeling. I want her to know that she can vocalize her emotions and there will be never be any judgement...there will only be love and support.

So, because of this....I sometimes have wondered over the years what exactly goes on in her head...what she thinks...what she experiences when she's not with me. I worry about her encountering ignorance. I worry about her getting her feelings hurt. I mean she deals with enough as it is on a daily basis....I want to protect her feelings so much.

When she does share situations that occurred...comments people have made...it sometimes feels like her words describing the situation actually knock the wind right out of me.

Today she had a low blood sugar while we were out buying supplies to make new team shirts for this years JDRF Walk. I handed her a package of scooby doo fruit snacks and she shoved them all in her mouth at once. I've seen it a million times before....her cheeks puffed out full of chewy snacks...it's nothing unusual to my jaded eyes. Well, once she swallowed them all, she turned to me and very nonchalantly said, "ya know....one time some kids at school saw me do that....eat all the fruit snack pieces at once....and were talking to each other about how gross it was that I just shoved them all in my mouth at once." I felt the air whoosh out of my lungs and anger burn my fingertips...anger at the ignorance she had to hear...anger that people can be so inconsiderate...anger that this is not the first time my daughter would hear a comment like that and it most certainly would not be the last time either. I asked her what she said to the girls who were saying this behind her as she was fixing her own blood sugar. She told me, "nothing. They were standing behind me talking to each other about me. I wasn't a part of the conversation, so I didn't say anything. And anyways, I don't care...when I have to eat something to feel better and fix my low....I'm gonna do it...who cares what they think?"

Ignorance is a fact. Inconsiderate people are a reality. Diabetes is her reality. It is what it is.

I put my arm around my extra sweet girls shoulder and we walked into the store talking about tshirt design ideas....because you see....I have nothing to worry about....she will hear ignorance...she will make a choice to let her feelings get hurt or not.

It's my job to continue to teach her about the choice....
It's my job to continue to teach her that no matter what she may encounter in this life....diabetes related or not.....she will always always always have a choice in what she takes away from it.

Oh....and to those kids who thought the manner in which my daughter chose to keep herself alive was gross.....I advise you to recognize that YOU have a choice as well....and I hope next time you encounter something you find unusual...or weird...or gross.....well, I hope that you will make a better choice next time in how you react.

Thursday, May 8, 2014

It was a beautiful sight

We have been in the midst of diabetes independence for a while now. Emma's getting older...she's quickly approaching her 6th year of living with diabetes...and I am slowly but surely letting go more and more as the days go by. It kills me sometimes...the panic that comes along with handing her her blood sugar meter bag and kissing her goodbye as she walks out the door to play at a friends house is almost paralyzing sometimes. I force myself to do it because I know it will only benefit her in the end and she needs to spread her wings...she needs to take the reigns...she needs to experience her own life with diabetes along for the ride. I had mere moments to prepare for this life...I had to jump in blindly and learn as I went along because she was only four years old when she was diagnosed. So, I have spent the last six years teaching her little by little what it all entails. I've been trying to set her up for success and confidence in her abilities because I want her to live a happy life despite diabetes. Yes, sometimes it feels like the complete wrong thing to kiss her goodbye and give her the control over keeping herself alive. I mean I'm her mom...it's my job to keep her alive, right? Well, it's also my job to teach her how to keep herself alive. It's such a mind boggling thing to have to trust that she can do it...she can handle it...she has got it. I feel torn in two some days...but I know it's always the right answer to let her go...let her live...let her grow.

Tonight she performed six dance routines at a local folk dance festival. I brought her to the auditorium floor...gave her the bag full of juice boxes, fruit snacks, and her blood sugar meter supplies. I kissed her. I pointed out to her where I would be sitting in the stands. And I walked away as she giggled with her friends and jumped around in excitement.

I sat in the crowd of parents watching her dance...staring at her eyes searching for signs of potential lows...because that's what I do. It's borderline self torture really. It's completely counterproductive and ridiculous on my part...but I can't help it...it's what I have done for years now...it's part of who I am. After finishing the third dance, the kids sat down for a break...and I saw my daughter run over to her bag....tell the teacher she felt low...sit down and checked her blood sugar...and told the teacher that no...she wasn't low...she was fine. I sat there watching her do this and my heart pounded in fear...worst case scenarios flying through my head...picturing my escape route and how I would get to her as quickly as possible if she needed me. I imagined myself climbing the plexiglass in between us...the rest of the crowd around me gasping at me wondering what the hell I was doing. I imagined these things...stupidly...tortuously...because it's what I do...I'm a d-mom and over the years diabetes has sometimes caused me to let my panicked thoughts run wild.

But she was fine. She wasn't low. It was killing me not to know what her number in fact was. But she was fine.

So I silenced the panicked voice in my head....I remained glued to my seat....I concentrated on breathing and slowing down my heart rate.....

.....and I watched my daughter take control...

And it was a beautiful sight.

Wednesday, May 7, 2014

Dance dance dance

Sometimes it's not about diabetes. Sometimes "typical" things happen during the day that remind me why being a Mom is the best job on the planet.

Since February, Emma and a group of kids from her school have been learning different dances so that they can perform them at a Folk Dance Festival...which happens to be tomorrow evening. They've practiced twice a week at lunch time and worked really hard to learn the routines. Emma isn't a kid that likes all eyes on her...she doesn't like too much attention focused on her....BUT she does love to dance. She was hesitant to sign up to be a part of this because of  the performance...but I encouraged her to give it a try seeing as how she enjoys dancing so much.

Despite all the extra work she's had to put in with making sure her blood sugars were ok...despite the fact that she has had to listen to her body and pay extra attention to potential lows on top of learning these routines....she's rocked it.

To say I'm proud of her tenacity would be an understatement. She wanted to do something that she likes to do...and even though it made her nervous...she did it anyway. That takes guts. That takes courage. That takes dedication.

As a Mom, I see her making these choices and my heart swells. It makes me feel like no matter what life throws at her, she will be just fine.

If there's one thing diabetes has taught me over the years, it's that fear is not necessarily always a bad thing. Sometimes...just sometimes, fear can be the most powerful motivator. If you are able to grab ahold of that fear and that self doubt and the nerves that seem to fight you for control, you can use them to accomplish anything. Fear can push you through the moments that bring you to your knees.

If there's one thing my daughter has taught me over the years, it's that nothing should stop you from reaching your goals and achieving your dreams. Nothing. Not fear...not diabetes...nothing.

When I'm sitting in the stands tomorrow evening watching my daughter dance, I will be focused on her eyes...so I can see the nerves and the excitement and the pride in herself for accomplishing something that was important to her.

Monday, May 5, 2014

Blanket statements suck

I'm a pretty easy going person...I can handle a lot of stress and nonsense before I reach my breaking point. Sure there are a few things that annoy me to no end....when you treat a low blood sugar and upon retesting, you see an even lower number....when people ask me around holidays if my daughter gets to enjoy the treats involved too...like chocolate Easter eggs...or candy canes...or trick or treat candy......or when I go to check my kids blood sugar while she's sleeping and a simple 5 second test turns into a 5 minute epic arm wrestling match and subsequent arm flailing battle with her sleeping self.

All of these things are annoyances...I deal with them and move on about my day. However, there is one thing in particular that really pushes me to my breaking point almost immediately.....blanket statements about this disease. Blanket statements, Amy? Whatever do you mean? Basically, when I hear other members of the diabetes community say things like....all type 1 people should be eating low carb...it's the only way to ensure stable blood sugar control. Or, you shouldn't be checking your kids blood sugar at night...they will always eventually wake up if they're low. Or my personal favorite...you should only be checking them 4-5 times a day...tops...anything more than that and it's just you being overbearing and paranoid.

Sigh......

Blanket statements are stupid in general....but in the land of diabetes, they are simply absurd and ignorant. Not all diabetics are the same...not all kids are the same...not all foods affect everyone the same...not all activities or moods or emotions or events affect everyone the same...every single human being on the planet is different...so why do people feel the need to make these blanket statements and categorize this disease that in my humble opinion is quite possibly the most individualistic disease out there?

Some of the blanket statement lovers have good intentions when they share, I suppose. But I really truly wish that before they lay it all out there, they would pause for a second and think...think before they let the words fall out of their mouths and realize that what worked for them....may not work for anyone else....and maybe...just maybe...if a new member of this community happens across their blanket statement and takes it at face value....it could cause harm...it could be misleading.

I love sleep....I love warm fuzzy blankets....but I loathe blanket statements. Please think before you toss your quilt of absolutes out there for all the world to see.