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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

My take on Usher

Like many others in the world, I recently found out about the popular singer and judge from TV's "The Voice", Usher, having a newly diagnosed child with type 1 diabetes. I read many comments and posts online talking about whether or not he should now use his fame to advocate for this disease and raise awareness. I'm not going to talk about that topic today...instead I want to talk about perception.

Emma and I are huge fans of the show "The Voice"...we watch it together every week...it's sort of become a special mom/daughter time where we can just sit there on the couch together and listen to these amazing singers and laugh at the antics between Adam and Blake. Naturally, when I heard about Usher, I told Emma about it. She always finds it pretty cool to hear about famous people who are living with the same obstacles as her.

Anyway, we sat down to watch "The Voice" last night and I found myself focusing on Usher...paying closer attention to what he had to say and what he was doing. To be honest, I am not a fan of his music per se...just not my taste...but I've always thought he was a very talented individual. As I sat there watching him last night, I actually SAW him...I saw him in a different light. My perception of him changed all because of what I now knew of him. Here was this man, on my TV...millions of people watching him....and to know he now shares similar worries...similar fears...similar struggles...well, it made me see him in a whole new light.

I wonder if people see us differently since Emma's diagnosis. Do they see us in a new light? I know diabetes has changed me as a person in some ways...but deep down, I'm still the same girl. Perhaps the biggest difference I think is that I'm no longer so naive about things. I wonder if Ushers friends and family see him differently now. If they notice the worry behind the facade of coolness and control.

Life is strange sometimes. We wake up one morning thinking it's just another day and the next thing we know, we are changed forever...all because of one occurrence. Our perception of life and ourselves and those around us is changed.

My hope for Usher is that he can hold onto who he truly is deep down inside...that diabetes doesn't muddy that perception for him. It's difficult, but definitely not impossible.

When Emma saw him on TV last night, she smiled and said, "he's a D-Dad now." Simply put and beautifully true.

The basics

Growing up, I was always the kid who liked arts and crafts...drawing, painting, making things....I loved it all. It was easy and freeing and I loved being able to use my hands to create something that evoked an emotion or feeling. However, I wasn't always a fan of being told I HAD to draw something or make something specific. Maybe it's my stubbornness...or my rebelliousness...or my need to be the one to decide what I wanted.

 When I got to high school, I took a creative writing class as one of my electives and fell in love with writing. I was never a fan of having assigned writing topics or being told that I HAD to write about a specific thing. In my mind, I always thought....if it's supposed to be creative writing...how can I flex my creative muscles while being told what I had to write about?

Now as an adult, I can appreciate the assignments. I can appreciate the basics and the guidelines that were put in place. I can understand that nearly everything in life that's worth something, takes time. It takes patience. It takes a moment of organizing your thoughts and being able to rely on the basics. 

I've come to realize that diabetes is sort of like that. When Emma was diagnosed, I knew nothing about the disease other than the ignorant belief that it would be a matter of never giving my kid sugar again and only feeding her fruits and veggies and healthy foods. That day I learned just how wrong I was. I learned the basics. I learned how to inject her with a pen needle. I learned how to check her blood sugar. I learned what was a safe blood sugar range for her. I learned how to fix a low and a high. I learned how to count carbs and how to keep her alive.

These basics have carried me through the last almost six years. They are common knowledge to me now and I don't really even have to think about it anymore...I just do it...it's second nature. 

The little intricacies that I've discovered along the way have been shocking to my naive mind....and yet, as time keeps on ticking, they too have become second nature. 

I recently met a newly diagnosed family. I found myself staring into the Moms eyes...seeing the ghost of my former self reflected back at me. I heard my own voice telling her that we've been at this for almost six years...and if there's anything I can do to help, just say the word...it will be ok...she will be fine...you can do this....all of the phrases that we tend to throw around in moments like that. I saw the Dad holding his 1 yr old little girl in his arms...smiling...staying close to the Mom. I saw them...really truly saw them. I saw the path they are about to embark on and I recognized every rut and obstacle...every clearing in the mist...every step...I saw it...because I started out on that same path myself.

It's scary and overwhelming and takes an enormous amount of courage to begin. Rely on the basics. Hold them close to your heart because they will save your sanity. The basics are what help you create something breathtaking and beautiful. The basics are what help you savour the moments that will change your life. The basics are what will help you have some control over deciding what YOU want to create...what YOU want to draw in your life...what YOU want to paint across the skies. 

The basics. Always respect and appreciate the basics.

Too tired to even come up with a name for this post

Do you ever feel like you have no one that truly understands? No one that you can talk to without fear of judgement? No one that you feel comfortable enough with to just let it all out in a flurry of tears and hurt? Do you ever feel like no one gives a shit.? Do you ever feel like people expect you to have it all together and any time you have a true problem, there's no one to be found that steps up to the plate to lend an ear? Do you ever feel like after all these years your supposed to be the one who helps...the one who listens...the one who cares...the one who is the good friend...the reliable friend...the supportive friend? Do you ever find yourself sitting there at night alone...traitor tears falling from your eyes...all the events of the day swirling around in your head creating the perfect storm of chaos and sadness? Do you ever wish that just once....just one time someone else would be there to lift you up and tell you it's ok...I understand...I hear what you are saying and I want to help?

Yea...me too.

Sometimes being the strong one....the supportive one...the reliable friend...is hard. I have spent nearly six years building up a wall to protect myself from the insanity. Slapping a smile on my face and pretending like I'm always fine...I don't need help...I don't need a friend to understand me and be there for me like I would for them. It's a double edged sword really.....I don't like feeling weak...it's almost painful for me to ask for help or a shoulder to cry on or just a friend to listen. So I put out a vibe of joking around...laughing...being ok. I put it out there and I think I am really just fooling myself. It's true....most people don't get it really...most people don't care...most people have enough on their own plates and in their own lives, that why should I expect them to want to take on the job of hearing about my problems. So, instead, I lie to myself. Instead I keep moving. Instead I slap the smile on and laugh and act like I'm ok all the time.

Well, sometimes I'm not ok.

Sometimes I need help.

Sometimes I'm too tired to pretend.

Just because I've been at this for 6 years doesn't mean I don't have melt downs still and feel lost and alone. Sometimes I think the more time goes by, the less acceptable it is for me to admit I need a shoulder to lean on.

It's NOT about control

No matter how bad it seems or how difficult the day is....there's always tomorrow...there's always a chance to try again.

This past week was hard. Like ridiculously hard. The difference this time though is that I've been on this ride before. I've waited in the line up...handed the squeaky voiced teen my ticket...and willingly or not, got on the ride. I tried to keep my arms and legs inside the moving vehicle at all times...I tried not to scream...I tried to hang on for dear life and keep my eyes closed until the ride was over.

I tried.

Sometimes the insanity of the numbers that come with changing seasons is enough to make me pack up our lives and move in search of that elusive place in this world where the temperature is always 75 degrees and sunny...it never rains...never storms...never gets humid...it's just consistent and even and not too hot or not too cold....it's juuuuust right. There must be a place like this somewhere on Earth.

Night turns into day...the awful memories of the previous evening are just echoes in my mind...stubborn lows...running out of snacks to treat the lows. It's funny how a low blood sugar moment can make you see the world in a different light....a familiar park so close to home can seem like it's in another country. The surrounding houses and the faces of the public are foreign...scary...worrisome. You frantically search for an escape plan...contemplating whether or not you will make it home...whether or not you ask a stranger for a juicebox...and if that would be enough. To know that the very thing you inject into your child's body to keep them alive.....is the very same thing that can kill them.....they're really are no words to describe what it's like to walk that tightrope balance every...single...moment.....of every single day. The pressure behind that responsibility is enough to send you to your knees if you let it invade your mind for too long.

And here we are at tomorrow.....which is now today....the sun is shining...the clouds in the sky are bright white in contrast to the blue surrounding them....fluffy...like cotton candy. Yesterday her face was as pale as a ghost....a vacant stare in her typically sparkling eyes. Today? Today she is running around at gymnastics with her friends...dancing to that "Happy" song. Yesterday's fight just an echo at this point.

Today I realize that while we may be destined to go on this ride forever....it's ok to scream...it's ok to force myself to keep my eyes wide open...it's ok to throw my hands in the air and let the air whoosh from my lungs. It's ok....because there's always the next breath....I can always inhale the next moment and begin again.

Diabetes is NOT about being in control, in my opinion. It's about trying...and reaching for the stars...but knowing that even if you miss this time...the ride will continue on.

Concerts

So last night my friend and fellow D-Mom and I took our daughters to go see R5 in concert. I think it's important to make memories with your kid...give them as many life experiences as you can while they are young...show them that the world is full of infinite possibilities. I have taken Emma to a few concerts already in her young life and it always makes me smile to see the look on her face as she watches the flashing colourful lights...dancing and singing along to songs that she had previously only heard on TV or her iPod. No matter who the band is....it's always an experience to see them live and in person.

At one point during the show, I looked over to see both girls holding up their insulin pumps and meters with the screen lit up...just as other people in the crowd were holding their phones up...arms swaying to the beat of the music. It was funny....and sweet...and a little ironic all rolled into one. Here were these two young girls...cotton candy stickiness on their fingers...smiles on their faces...enjoying a concert just like every other kid in the arena.....using their diabetes devices in a most unique way.

See, a lot of times I get so wrapped up in the numbers....the needles...the carbs. I get so lost in the monotony and the routine. I get so wrapped up in the fact that our version of normal is in fact not really normal at all. I get so wrapped up in trying my hardest to ensure that my kid has a chance to live a worry free childhood...a carefree childhood...making sure that she gets the chance to just be a kid above all else.

I get so wrapped up in these things.....that I sometimes forget that diabetes isn't always the first thought in her head. Sometimes....just sometimes...it's simply about getting lost in the moment...with a friend who understands you...in the middle of a crowded arena. Getting lost in the song....and letting your unique light shine out with a grin on your face and a memory being made.

Life isn't about the struggles or the challenges or the hurdles you must overcome. It's not about the perfect number or the measure of your ability.

It's about making memories in spite of it all. It's about time together...time where you get lost in the moment...those are the things I want to give my kid...those are the things that matter.

My corner office

I don't receive a paycheck. I don't have a corner office with a beautiful view. I don't carry a briefcase or attend weekly meetings in a boardroom to discuss the budget and brainstorm new ideas. I don't have a company car and I don't take trips around the world to meet with other executives in the industry. I don't have a team working for me. I don't have an assistant who hands me messages I've  missed or remind me of appointments I have that day.

I'm a Mom. I'm a D-Mom. I'm paid in copious amounts of love and the knowledge that I've kept my kid alive another day. I'm paid in knowledge and empathy for others who have a situation in their life that requires more effort...more determination...more strength. I'm paid in smiles and giggles...hugs and kisses...shared moments of silent peace...holding hands...eyes full of awe and wonder...immeasurable pride.

My corner office is the kitchen counter where I prepare her pump sites and keep her blood sugar meter. It's her bedside...in the wee hours of the morning...a headlamp strapped to my forehead...where I stand to check her blood sugar as she sleeps. My beautiful view is her sweet face...sleeping...hair splayed out across her pillow...clutching her stuffed animal dog "Scruffy" in her arms. My view is the world seen through her bedroom window curtains...lime green with sparkles all around...the backyard below me...the street beyond that with a random car passing by silently.

My briefcase is a light green meter bag that looks like a frog. It's contents are my tools of the trade...the things I need to keep her alive every day. It's a little mind-boggling to me that these lifesaving tools are kept in a ridiculous frog bag. Strange..but true.

My assistants and my team are my husband and my daughter...and to some extent the people who work at the diabetes clinic. We all have the same goal...we all focus on doing whatever it takes to reach that perfect balance of blood sugar numbers. We want her healthy. We want her happy. We want her to grow up and flourish in spite of the obstacle that was laid at her feet when she was merely four years old.

I don't live a fancy or exciting life...but it's my life...I work hard...I laugh hard...I love hard. My job is not really a job at all...it's who I am...it's a part of me...I'm a D-Mom.

Part 3....the old man and the cave

A long time ago I wrote a poem that turned into a story. I love how things turn out that way sometimes. I love the unexpected. I love how words can turn into a whole world that resides inside your head. What began over a year ago, has stuck with me even now...and here is another glimpse into the world I like to visit every so often when I get the chance to let my imagination run wild...

They stood there for what felt like an eternity...the old man from the tower and the young woman from the muddy field.
Eyes locked in a moment of understanding...connection...empathy.
Echoes of the single word that had fallen from the old mans lips still ringing in her ears.
A sigh escapes her as he removes his warm and soothing hands from her tear stained cheeks.
It's familiar...safe...like coming home as a kid when the street lights came on...sweaty hair, sunkissed from a day spent playing with the neighbourhood kids. Walking through the back door into the well-lit kitchen and seeing your mom standing there at the stove..stirring a pot of spaghetti sauce for dinner...the smells swirling around you...embracing you as you step into that glow of home.
The old man is familiar in the same way...familiar, and yet she can't quite recall why...it's just out of her grasp...blurred memories that live on the outskirts of her exhausted mind.
He takes her hand in his and leads her away from the field...away from the trees...into a horizon of unknown steps and loaded questions.
No words are spoken...and yet she feels compelled to follow...focusing on placing one foot in front of the other...listening to the wind blow through the old mans fine white hair and letting her thumb trace the edges of his fingers that are intertwined with her own. She wonders how many miles he has walked in his years...how many visions of wonder and change his pale blue ancient eyes have seen...how many hands his gnarled and oddly strong fingers have held.
The ground beneath her feet becomes rutted and full of stones...some twinkling in the slowly setting sun...sending out firelight sparks of beauty all around...dust motes dance across her vision as she allows herself to be lead to the mouth of an unknown cave.
For the first time since he uttered the word hope in the field, the old man turns to the woman and very gently tells her that what she seeks is on the other side of the cave. He explains that it will be dark...darker than the blackest night. Her journey to the other side will be long...and she will want to give up and turn around...she will want to come back to the safety of the light behind her...but she can't. He speaks so softly and confidently that she almost believes him for a second. She feels his words seep into her mind and ignite a spark of confidence that she didn't even know existed....but then she glances up at the black hole before her. Vines hang all around the cave entrance...seeming to taunt her...begging her to try and step over the threshold so they can grab her and yank her right off her feet. She looks back at the old mans eyes...his wrinkled face lit up in a smile...believing in her...urging her on.
Fear and doubt seeps into her mind and numbs her limbs...her feet feel like cement blocks fused to the path beneath her. She knows she must go...she must leave the safety of the old mans presence...she must travel this part of her journey alone. As she forces her feet to begin moving again, she enters the cave with one thought alone...I can do this...I can keep moving...I can because I must.
She glances back one last time to see the old man lift his arm and wave goodbye...calling out to her...you will never be alone...the choice is yours and your journey has already begun.
You will never be alone again as long as you trust.
I will see you on the other side...waiting with open arms.
Trust.

Just let go

Sometimes all you can do is cry...because there is no answer to the why
And it takes all of your strength to make it through the day
Holding it all in until she's asleep
Peacefully dreaming of flowers and games of tag
And you can let it out
Unlock the steel gate that's been holding back the tears
The anguish
The floods of sadness that have been building for what feels like centuries.
You've fought them back all day long
Holding that gate shut with all of your might
Waiting
Waiting for that moment when you can just let go
Let go
Let go
Let it all go
That moment when you can let the vulnerable part of your soul take over
And just let it go
Spilling over and screaming out
The chaos and anger and frustration
The numbers
The hurt
The desperation of the minute
Flying around your head like crows circling your poor drained body
Lying there on the desert floor
Sun baked and broken
Gasping for breath
Your throat as dry as the burnt brown grass on a hot summer day
As the sun beats down upon your back
Relentlessly
No control
The tears that have been choking you all day long
Are finally gone
And you're alone
With your thoughts
And the sound of your own battered heart pounding in your ears.
Let it go
And just breathe.

It's a big deal

Diabetes is a big deal...it's serious...it shouldn't be brushed off as just some random disease that can easily be managed thru diet and exercise. It's hard...harder than anything I've ever encountered in my entire life.

Type 1 diabetes AND type 2 diabetes are difficult. I've come across quite a few people in my life that are living with type 2 and it saddens me to see how little information they are given about their disease...how they seem to be tossed out on their own and given some pills and a meter and expected to just handle it. I have come across so many that ignore it...pretend like it just doesn't matter and that they will be fine regardless. The D-Mom in me wants to take their hand and do it all for them...lay out the daily plan and help them figure everything out...but I can't...because it's not my place to do so.

It bothers me sometimes that one day my child will be an adult...and people may assume that she is type 2 as opposed to type 1....because I know many still believe that type 2's bring this disease upon themselves through poor diet and a sedentary lifestyle. It bothers me to know that she may be judged because of this. Diabetes is hard regardless of the type you have. Balancing all of the different variables every second of every day to achieve a safe and happy medium is nearly impossible.

Don't brush this disease off....dont assume that it's easily managed...don't judge...it's not right and it's not fair. If you happen to meet a person living with diabetes...type 1 or type 2...take a second to recognize that while yes...there's a difference between the two...they both have struggles...they both are fighting for that optimal balance.

I have a constant inner battle between making it appear easy because i dont want pity and i dont want my child to feel inhibited by it.......and making people realize that it truly is difficult....because it is.

After nearly six years of living with diabetes in my house, I wouldn't wish it on my worst enemy.

Try again.

Sometimes I really hate diabetes....like REALLY hate it. Sometimes I just want to give up and throw the stupid blood sugar meter across the room because it won't stop showing me an ugly number. I try and I try and I try and then I try some more and sometimes it's just not good enough. I can handle a lot of stress...more than I could before diabetes entered our lives...but sometimes it gets to the point where I feel like I've been beaten down and have absolutely no fight left in me.

Emma has strep throat and diabetes is not playing fair. I have been at this for a long time, so I know that illnesses cause blood sugars to skyrocket and make me feel like I'm bolusing her with water instead of insulin. I keep correcting numbers and setting temp basals and pushing her to drink water....and it's not helping. I've changed her pump site, I've changed insulin, I've done every single thing on my checklist of things to do when a person with diabetes is ill...and it's not helping. I sit here so far beyond the point of frustration with nothing left in me except for a few hot burning tears that keep threatening to spill over my eyelids and I am fighting to hang on to control...hang on and breathe deeply and convince myself that this to shall pass...it always passes...it always does...but those words don't seem to be sinking in this time...those words mean nothing to my exhausted brain...those words might as well be whispered promises from a stranger on the street.

Sometimes I hate diabetes so much that it feels as if I am one tick of the clock away from running outside in the snow and screaming my fool head off until someone...anyone...comes to save me. Except I know that won't help. I know that no one is going to save me from the ugly numbers. No one is going to make it all better.

No one except me.

The weight behind those words and that thought is sometimes unbearable. The pressure I walk around with on my shoulders every single day is enough to make me want to lay down and just stay down.

But I can't.

I can only try again.

And again.

And again.

Aaaand again.

Panic attacks and masks

When I was in high school, I used to have panic attacks. I'm not really sure why they happened or why I haven't had one for years now...but I do remember how horrible it felt when they occurred. Sometimes when the bell would ring and we'd have to leave class to go out into the hallway and walk to our next class, it took everything in me to force myself out the door. I remember walking slowly and having a hard time breathing...everything around me seemed to be on fast forward and I was stuck in this slow motion abyss...I could hear my own heart pounding in my ears...it felt like everyone was staring at me...I could hear voices off in the distance echoing laughter and chatter with friends. I could only focus on the sound of my own breath filling my lungs and making sure I put one foot in front of the other until I got to my next class and could sit down.

It's bizarre really...I'm positive no one was staring at me. I'm positive they were all just carrying on about their day. Just as quickly as the panic attacks would start...they would end. I could breathe normally again...my heart would stop pounding in my ears...and everything around me felt like it was at normal speed again.

You're probably wondering why I'm sharing this with you at this point, right? I mean it has nothing to do with Emma or her diabetes. To be honest, I'm not really sure why I decided to share it. I think really just to share that things aren't always what they seem. In high school...like now...I was a good kid. I had a lot of friends...I never really followed the crowd I guess. I was funny and weird and loyal to those I loved. The panic attacks didn't happen constantly...but they did happen.

Diabetes is sort of like that I suppose....you can't really see it per se...people who haven't known Emma for a while and don't know she has diabetes, would probably be surprised to find out she does. We all walk around going about our business everyday. We get so wrapped up in our own lives and our own obstacles...that sometimes I think we lose sight of everything else.

Sometimes when I'm out in public...standing in line at the grocery store or at the park or even eating at a restaurant, I look around and actually see the people around me. I wonder what they are feeling in that moment...what they are dealing with...what the day has brought them. I think it's important to see past your own bubble and your own moments...your own struggles.

Maybe I'm just babbling here...I don't know...it happens. Take a second next time your out though...look around you and actually SEE the people you pass by..it's pretty interesting to see how many of us wear our emotions all over our faces...and how many of us put on the mask.

Define me

I was chatting with some friends today about experiences that have happened in our lives. It got me thinking about things really...how I have certain memories in my life that seem so random and so bizarre that they have stuck with me all these years. Little things like how my dad used to take me to preschool at a local church. He would always get me there a bit early and we would sit in the car waiting...watching the clock. See, there were a bunch of big wheels and tricycles out for the kids to ride on first thing...and there was only ONE flower power big wheel...it was beautiful...pink and white and purple...with big flower decals all over it...all the girls would race to get that specific one to ride because it was the best. My dad would watch the clock for me...and tell me to get ready as he counted down the time...he'd tell me to open the car door, told me to have a fantastic day at school, and shout GO when it was time to leave. I would run as fast as my little 4 year old legs could go...heading straight for that flower power big wheel...determined to get there first so I could be the one to ride it.

The fact that my dad did this for me meant the world to me....here I am 33 years later thinking about it and I can still picture the big wheel...I can still feel my heart pound in excitement and with adrenaline as I anticipated him shouting go. I would be willing to bet my dad doesn't even remember doing this for me now...but I will never forget it.

Our lives are a series of moments...experiences...some good...some bad...some breathtaking and beautiful...and others so traumatic that we can barely stand to think of them after the fact. The night before I received the phone call from our doctor telling me the results of Emma's first blood test, I laid my head down on my pillow and went to sleep for the last time as a regular Mom. Just a few short hours later, I would become a D-Mom...my life forever changed...in the blink of an eye...all from a single phone call.

These moments all play a part in shaping who we are as individuals. We take things from them and we learn things from these moments. We can sometimes be changed irrevocably by these moments. Some might say we are the sum of all these moments and experiences. However, I prefer to believe that we are not necessarily defined by these things that happened to us...but rather grown from them. We live through them and we realize that we are more than we were before...we are stronger..or more vulnerable...or smarter...or capable. We see this spark of something new in ourselves that we didn't necessarily see before.

Yes, diabetes changed me. It opened my eyes to a whole new perception of myself. It made me see that I am stronger than I ever thought I could be. It changed me...but these last almost six years as a D-Mom do not define me...because deep down inside...I'm still that little girl with fire in her eyes...her heart pounding with excitement...determined...loving.

I'm still her...and I always will be.

Comparing socks to the alphabet

Everyone is different. Your diabetes may vary. What works for one may not work for another...and it may not even work for the same one the very next day. To each his own.

Diabetes is unique...it's individual...it's sometimes so varied that it will make your head spin. I think a lot of times we tend to offer advice or comments to each other sharing our own experiences and opinions on how this disease should be managed. It's all fine and good...but should definitely be taken with a grain of salt, I believe. Just because your child learned how to test their own blood sugar at 2 years old, does not mean that every child should be doing it too. Just because your 12 year old sets their alarm for middle of the night checks and can treat their own lows and stay awake to retest before going back to sleep.....does not mean every 12 year old should. In fact, age should not really be a factor in the management choices when it comes to diabetes. Some kids are more mature than others. Some are more responsible than others. Some are more independent than others. Just because you still wake up to check your sleeping child's blood sugar, does not mean that you are a neurotic micro-managing parent. It just means that you are doing what you feel needs to be done. Own it. Don't be afraid to feel good about your methods and your choices.

I guess it's a tale as old as time really...once we become parents, we have a tendency to compare.....your kid started walking at 10 months? Well my kid is a year old and still not walking...does that mean I'm doing something wrong or that there's something wrong with my kid? Your kid can spell their name, recite the alphabet in Spanish, and count to 400 in under two minutes? Huh....well my kid can take off her own socks!

I'm not sure why we do these things really....why we feel the need to compare...or why we take offence to those who proclaim that we should be making our 10 year old handle their diabetes management on their own. We should be confident in our routine...our skills...our method to this madness.

It's not a black and white solution. You won't find all the answers in a handbook. Each kid is different and no one knows our kid better than we do. We know what they're capable of. We know what they can handle and what we still need to help them with. No one else does. Not our friends...not our family...not even our doctor. We know and our kids know and we need to remember to have confidence in that fact.

Mad.

Sometimes I get so mad at diabetes that I can't see straight...I see the world through eyes that are tired beyond all belief...eyes that are pissed off...eyes that are jealous of others that have no idea what this is like...eyes that have never seen their child's hands shaking uncontrollably because of a low...eyes that have had to watch helplessly as their child lays there...pale as a ghost...lethargic...like a puddle of desperation...waiting....eyes that stare at the clock as they wait for the phone to ring assuring them that their child is ok...they survived...they made it through the low tunnel and to the light on the other side back to reality...back to the land of the living again.

Sometimes I get so mad that she has to feel these things...live these things...breathe these things. I get so fucking pissed off that this life was thrust upon her at only 4 years old...why her?! Why did it have to be her that was dealt this unfair hand?

Sometimes the furious questions and thoughts and feelings swirl around in my head so fast and so hard and it's so overwhelming that I'm scared to even open my mouth because I don't know what words will fall out...I don't know...and.....I don't care.

Sometimes I want to scream and cry and punch holes in my walls because of the extreme depths of emotions that take over my body as I live this life as a D-Mom.

But I don't.

I can't.

I have to keep it together because it's my job. It's my job to remain calm. It's my job to live it and deal with it and carry on. It's my job to teach her. It's my job to lead by example and show her that it's ok to be pissed.....it's what you do after you let that anger out that will define the measure of your spirit.

Sometimes I feel like I can't. Like I'm not good enough or smart enough or strong enough or capable enough to handle this gigantic task...this job...or even this moment.

It's not my disease. It's not my body that is feeling the effects.

But it doesn't make it hurt any less and it doesn't dull the pain at all...and it doesn't change the fact that even after all these years, I still need to find ways to let the anger out when it hits me all at once.

Anger doesn't make me weak...it doesn't mean I am letting diabetes win...it doesn't mean I'm not good enough.

It means I'm a D-Mom and I can do anything.

Think before you speak

So, I had to take Emma to the on call doctor a couple of nights ago. She has been fighting a cold for a couple weeks now and when she came home from school, she informed me that her ear was stuffy...and it sounded like she was under water. Seeing as how it was after office hours for our regular doctor...we had no other choice but to go to the on call doctor.

After we checked in, the receptionist/nurse had us walk over to the scale so she could weigh Emma before putting us in the room to wait for the doctor. The events that followed are what I am choosing to focus on in this post. The nurse...lets call her Sally...glanced up from her chart to look at Emma and said, "wow! You're a big girl, eh?" She made a huge production out of flipping over the weight on the old fashioned scale that would be used typically for adults weighing over 100 pounds. She had Emma step on the scale and said incredulously, "HOW old are you? You must be big for your age, I guess right?" By the way, she had to flip the weight thing back over...Emma is not even close to 100 pounds.

Well, I lost it......see....Emma is NOT big...she's not shockingly or surprisingly or even remotely noticeably large or plus sized....she's average. How do I know she's average? Because every three months she has to go to a diabetes clinic appointment where she is weighed and measured and charted...and she has consistently been in the 50-65th percentile....middle of the road....straight average...for her height and weight. Back to me losing it.....

Over the years I have heard many comments to Emma's size...when she was a baby, she had the most adorable little baby rolls on her arms and legs...she was my chunky monkey and everyone and their brother felt the need to point it out to me. I didn't mind...I found it precious. NOW however....when they make comments in front of my child as if she's not even there......it's the polar opposite of precious....it's rude.....it's ignorant...it's inaccurate...plain and simple. So, I said to this woman, "actually she's not big....she's one of the smaller girls in her class...in fact I think there's only 1 girl her age that is shorter than her to be honest. I think people have a tendency to forget just how big a ten year old is!" She proceeds to tell me, "Well, I guess maybe my kids are just tiny then." I rolled my eyes and said, "huh....I guess you just don't know what your average ten year old looks like then."

I was angry. I was fed up. Truth be told, every single time....I mean EVERY single time I hear these types of comments about MY size or my child's size, it's coming from another woman. What is this ridiculous obsession women have with feeling the need to comment on size...or looks in general? Why do we as women have this urge to say these things in front of young and impressionable girls? Emma's at a very vulnerable age...an age where she is seeing changes happen and she's growing up and things are different. Why do women...ESPECIALLY those in the medical profession....feel the need to act like morons and SAY these things in front of a young and impressionable girl?

When I was Emma's age, someone told me that I had big teeth and looked like a horse when I chewed gum. To this day I am conscious of that when I chew gum. Some idiot said that to me 27 years ago....and it's still with me. When I was her age, someone told me I had big thighs....it's been with me every...single...day since. It's in my head when I buy clothes, when I look at myself in the mirror...it's there with me.

When we left the doctors office, Emma asked me, "did that lady mean that I was big height wise?" I told her yes....that's what she meant....because I didn't want her thinking she was fat because of some asinine comment made by a receptionist/nurse who she had never met before.

So, for those of you reading this....especially you women...MOST ESPECIALLY those of you in the medical profession who may come across young girls in your workday, before you decide to make a comment about their appearance or size.....STOP....think for a second....ask yourself if the child will truly understand that you are joking or meaning no harm or simply commenting your opinion...ask yourself first how YOU would feel at that age if someone had said the same to you....THINK before you open your mouth. Help save the next generation of women from having body image issues that will stay with them for life because of some random ignorant comment you made. Thank you.

You're back.

*I want to preface this by stating that i dont have type 1 myself....but I do have hypoglycemia....I have since i was a teenager actually. I'm not comparing the two...just sharing what a low blood sugar feels like to me*

Palms are sweaty...hands are shaking uncontrollably. I sit there staring at them...willing them to stop...but they won't. I can hear my heart pounding in my own head...it sounds like the drum beats at some concert hall downtown...boom boom boom... The voice inside my head is screaming at me to get juice...get something...quick...but my body won't move. I sit there arguing with myself...oh just lay down...just for a second...close your eyes and wait it out....that sick feeling will go away...the nausea will pass...just breathe...but you need juice...you need it...but the mere thought of the sweet liquid in your mouth makes you want to throw up even more. The simple act of blinking your eyes takes so much effort...your eyelids feel as if they weigh a ton. Each breath brings on fresh waves of nausea. You need juice...you need it...but the kitchen feels like it's miles away...so you roll yourself off the couch and stumble over your own feet into the kitchen...the refrigerator door in front of you. You see your hand reach out for the handle and it feels like it's not even attached to your own body...it's like your watching someone else do this...someone on TV...reaching...someone who needs juice...you need juice. You grab a brightly coloured juicebox off the shelf and rip the straw from the back of it...staring at the plastic wrapping around it...knowing that you know how to open it...you've done it a million times before...but you can't remember how...your brain is swimming around in your muddy head...searching for a memory...trying to recall what your fingers need to do to open it...it's just plastic wrapping, Amy...it's not under lock and key....open it...quickly...before you fall over and lose your lunch all over the kitchen floor...open it dammit...open it! You stick the straw in your mouth and bite the plastic off...pulling it apart like some sort of animal...you laugh as you think of your cat attacking her toys the other day...biting them...tossing it over her head and chasing it. You start to see spots in front of your eyes...furiously blinking...trying to make them disappear...Everything seems to be moving in slow motion as you try to stab the straw into the box...once...twice...three times...bending the straw...breaking it...you manage to puncture the hole on top and just hold the box to your lips...squeezing it...letting the sickening sweet juice pour into your mouth as you slide to the floor...waiting....waiting for it to kick in and take this disgusting feeling away...sweat pouring off your face...your fingertips starting to tingle and feel hot...your breathing starts to slow down to normal...your heart stops pounding...the drum beat in your head ceases....the feeling begins to pass....and there you sit...petting the cat who has stood by your side the entire time without you even noticing. You're back.

....and then you are reminded that this is how your child feels sometimes too. And this is how she will feel many more times in her life. And how some of those times she might be alone too.

...and that thought scares you more than anything else on the planet.

We need a cure.

Dear Emma

Dear Emma,

In a little over a week, you will be turning 10 yrs old. When I think about this milestone birthday, it makes my head spin a little bit. It feels like I just brought you home from the hospital yesterday. I still remember holding your tiny little body in my arms...feeling your warm sweet breath on my neck as I cuddled you close...kissing your soft cheeks...touching the fuzzy hair on top of your beautiful head. I remember just staring at you...all the time...I couldn't get enough. It was almost like I couldn't believe that you were mine. I sat there studying every little freckle...every little roll on your chubby baby arms and legs...the sparkle in your eyes. I knew you for 9 months as I carried you around in my belly...I felt every kick, roll, and hiccup....and then once you were here and I could lay my eyes on your face...look into your eyes...I REALLY knew you. All the days of my life leading up to that point were spent waiting for you...searching for you...holding my breath for the moment that I got to meet you.

We have laughed more times than I can count. We have made memories that will stay with me for the rest of my life. We have had our struggles...our tears...or worries....but we have lived. We have become more than just Mommy and daughter...you are my friend. You are the reason my heart continues to beat. You are my everything. You taught me what the true meaning of the word love is.

Time has flown by right before my eyes. You're no longer that little baby...no longer that little girl with pigtails that stuck straight up in the air...you're growing up into a beautiful and kind human being. You make me proud every single day. You are smart. You must have asked me a billion questions over the years...wanting to know how things work...why things happen...where things are...who made something...history, science, math, languages, art, the whole world makes you curious. Don't ever lose that curiosity. You are hilarious....in fact you are probably the funniest person I have ever met in my life. Don't ever stop laughing. Don't ever stop seeing the world through humorous eyes. It will make your heart happy through the years. You are kind. You care about people. You stick up for those that can't stick up for themselves. You root for the underdog. You are sensitive and you have a big heart. Don't ever lose that...the world needs more loyal and faithful people. You're a dreamer....and that is perhaps one of my most favorite things about you.

You are strong...stronger than I could ever hope to be. You amaze me with how you take everything in stride. You have never complained one time about all the needles. You have learned how to manage your diabetes at such a young age. It's breaks my heart and makes me infinitely proud of you all at the same time. You have endured moments of horrible pain...blood, headaches, nausea, your body shaking uncontrollably, moments where you have had to stop being a kid...stop playing...and sit down on the sidelines to fix a number. You've handled it...you've done what needed to be done to keep yourself healthy...and that gives me hope for your future. It gives me comfort knowing that you will be ok.

I want you to know that no matter how old you get, you will always be my baby. I will always look in your eyes and see that same sparkle I saw for the first time on Valentines Day in 2004. I will always hold you in my arms. I will always breathe in your beauty. I will always laugh out loud with you. I will always be proud of you...always...always...always.

I will always love you no matter what...because you are my heart...you are my love. You are the greatest thing I have ever and will ever create. I am blessed to be your Mommy. Thank you for making the last ten years of my life the best years I've ever lived.

Happy almost Birthday baby girl! I love you more than hearts and stars!

The common cold blues

Do you know what sucks? When you are coasting along not really letting diabetes into the forefront of your mind...handling blood sugars as they come...seeing consistency....everything is all good good happy happy........

........and boom......she gets a cold....and all hell breaks loose.

Blood sugars seem to increase with every sneeze and ketones lurk around the corner waiting to jump out and join the party inside her body. You hand her tylenol...you become a water fanatic and continually get her to drink more...flush it out...keep drinking water...gets the fluids in you. And you sit there pissed off because it's never just a simple cold. It's never just a sneeze or a sniffle. It's never just a cough. Diabetes is always there...no matter how well you think you're doing at managing it...no matter how much you think you're keeping the focus on life and living and making diabetes step back and not run the show.....it's always there...always. It's there when the numbers are good and the sun is shining and everyone is feeling fine. It's there when the clouds have drifted in hiding the bright blue sky from your eyes and your ears are filled with the sounds of sneeze after sneeze erupting from your child's room and the scent of chicken soup fills the house from the crockpot on the counter. Diabetes is there. Always. No matter how much you try to pretend like it's not and like it doesn't matter and like you got this and it's no big deal.....it's still there.

The thing that gets me the most I think is how it's sort of a slap in the face reminder that my child has diabetes. It may seem silly because of course I know she has diabetes...I know...it's in my face every day. I have become so accustomed to the routine though that checking BG's and bolusing and changing her pump site are just normal tasks that we do every day. The times where I feel as if I have been slapped in the face by diabetes letting me know it's still there, are when she's not well and a ridiculous blood sugar number screams at me from the meter...mocking me....saying, "see? I'm still here! I haven't gone anywhere!" It's maddening.

Sometimes I just wish it was easy. I wish I could pour her a big glass of orange juice and not think twice about the carbs....just give it to her so she can drink the cold tartness in gulps. Almost six years of having things like a common cold wreak havoc on her little body, is exhausting...mentally...physically...pancreatically.

The thing that amazes me every time she isn't feeling well though...is how it doesn't stop her. Diabetes has made her tough...it's made her determined...it's made her keep moving...no matter what. I must admit, that definitely makes moments like this week of sniffles and sneezes and high BG's a bit easier to handle.

Life or death decisions

As I dropped Emma back off at school this afternoon after lunch, I asked her if she felt low still and if she wanted me to stay and recheck her blood sugar in 15 minutes after she came back inside when lunch recess was over. She told me no, that she was fine...and if she felt low, she would handle it. We kissed goodbye and I left her running off to play in the snow.

It kind of hit me all at once as I drove away...just how bizarre it is that we make many life or death decisions every single day. I think that's the thing that is so difficult to explain to someone who doesn't live with diabetes in their house. That's the thing that can't really be put into words. That's the thing that is so difficult to wrap your head around in the beginning days after diagnosis. Every single day...every time you hand your child something to eat or drink...every time you stick a needle into their arm or push a button on their pump and give them insulin....you are making what could be a life or death decision.

I use to agonize over some of those decisions in the beginning...hell, I agonized over every decision honestly. I didn't want to make a mistake that could harm her. I thought about all of the factors involved...the food, the weather, the activity, the mood, past trends, if the stars were aligned...and then I would second guess myself. I lived that way for nearly a year...doubting myself...no confidence in my abilities...afraid that the thing I used to keep her alive would turn out to be the thing which would kill her...and it would be my fault...because I was the one giving it to her.

I was at the store with Emma the other day and I mentioned how we needed to grab some more AA batteries because I had just used my last one to replace the old one in her pump. She laughed and said to me, "weren't you scared when I started pumping and you had to trust a AA battery to keep me alive? That must have been hard." Yes, it was hard. I thought about it for months beforehand honestly. I couldn't believe that I was taking a leap of faith and trusting something that hangs on a rack by the the checkout line at the grocery store to keep my child alive and well.

Over the years I think I've become sort of numbed to the brutal reality of the decisions I make every day. I don't doubt my abilities anymore. I rarely second guess myself. I don't agonize over the extreme magnitude of it being a life or death decision......I just do it...I push the button on her pump. I run through the factors in my head in a matter of seconds....and I just do it.

Don't get me wrong, I still know my decisions can be life or death...I know it in my head and my heart....but it's not in the forefront in the same way anymore. It is what it is and we choose to live every day.

We choose life. We choose making memories. We choose to be in control.

Write what you know

They say write what you know...so here goes...this is what I know...

I know that I want another baby, but my husband does not...and this is something I have struggled with every single day for years now.

I know that I get my feelings hurt by others actions and words far too easily...and it makes me mad that I still haven't learned the lesson to not care...

I know that I would do anything for my friends and I love them with all my heart, but it hurts me to feel like I don't have that one friend I just have to call when something happens in my life. I don't have that one person who I can call or go see and know that they won't judge me...or spend the whole time talking about themselves. I don't have that one person who would come over to surprise me on a random day with balloons...just because they were thinking of me and wanted to surprise me. I have a lot of extremely caring friends and like I said, I love them more than I can explain....but I don't have that one specific person...my person...and it makes me sad.

I know that at least once a day I feel like I'm failing as a Mom. I try my best to teach my daughter how to be a good person...a kind person...but sometimes I feel like my best isn't good enough.

I know that the older I get, the more I realize that sometimes choosing happy takes a lot more effort than just sitting there in silence and letting the world carry on around you.

I know that diabetes is hard. Ignorance about diabetes is hard. Being a pancreas for your child is hard.

I know that everybody's a critic.

I know that meeting the friends that live inside my computer for the first time...is one of my most favorite things. To hug them and know that they get it....they know...they live it too...to feel that D-Mom bond beneath your arms...it's comforting. It feels like coming home....like you've been travelling a long distance and finally made your way back home...walking through the door into your warm kitchen...well lit...cozy...smelling like homemade cookies.....comforting.

I know that I'm a good person. I'm a good Mom. I'm a good pancreas. I'm a good friend.

I know that I'm tired.

I know that I can't wait for the day to come when I have nothing left to say that needs to come out in a diabetes blog post.

I felt like a monster

So Emma is turning ten next month. It's a big deal of course...double digits and all. We were discussing birthday party plans tonight and she mentioned how it would be nice to have a friend or two sleep over after her Rainbow Loom bracelet making party at Michael's craft store. I told her that was fine with me and asked her who she would like to invite to spend the night. After thinking it over for a while, she mentioned one particular friend. This friend has spent the night once before and she's a nice girl...well behaved...very friendly. However, the night she slept over here...I remember her making a big deal out of Emma checking her blood sugar and commenting about how the blood freaked her out and it was gross and couldn't she just not do that. Sigh...I get it...I really do...this friend doesn't see Emma every day...they don't go to school together...so she's not familiar with the whole diabetes routine. I understand and completely get that blood and finger pokes and all that jazz is not for everyone. We didn't shove it in her face. We didn't make a big deal about it. We just went about our regular diabetes business as quickly and discreetly and respectfully as possible while she was here. So, I reminded Emma of this whole scenario from last time and asked her if she was sure that this certain friend was the one she really wanted to spend the night. I didn't want to choose for her...I didn't want to sway her opinion of this friend or make her change her mind...I just wanted to make sure that she was certain with her choice.

Well, what she said next really....well...it left me speechless, to be honest. Emma is big into the Percy Jackson books and movies these days. There's a character in the most recent movie that is a cyclops. The other kids in the story are not...they kind of see him as different...weird...not normal. Emma told me that she changed her mind...she wanted to choose a different friend to spend the night because she remembered how it felt when this friend was making grossed out faces while she checked her blood sugar. She said, "it sort of made me feel like a monster, Mommy...just like in the Percy Jackson movie. It made me feel different and weird. She looked at me like I was weird. I know I'm weird...but I'm weird in a good way...a funny way...not a monster way...and I don't want her to look at me like that, so I think I want to ask someone else."

It kills me to know that she felt like a monster. It feels like someone stuck a knife in my heart and kicked me in the gut. It hurts to know that it's probably not the first time she felt that way....and it most certainly won't be the last. My daughter is tough. She's stronger than most adults I know. She has accepted her diabetes from the very beginning. She lives it. It's all she's ever known for almost as far back as she can remember. She is starting to forget the few memories she had of life before needles and blood and insulin and carbs. Those days are becoming a blurry image in a far off place in a time that lives behind a closed door now. That part of her memory is slipping away...because this is her life now...this is her routine...it is what it is and it belongs to her.

I wish I could fight every battle for her. I wish I could tell every person she will encounter who happens to have a grossed out look on their face or an ignorant comment falling from their lips...I wish I could tell them to shut up. I wish I could tell them to look at my daughter....really LOOK at her...don't feel pity...don't feel disgust...don't project your ignorant thoughts and feelings out and judge her.....I wish I could shield my daughter from all of these people she is sure to come across in her life....

.....but I can't....

I can't always fight her battles...I can't always shield her from the nastiness in the world...I can't allow her to grow up thinking the world is all sunshine and daisies and full of compassionate people everywhere.....because it's not true. There is ugliness out there. I have to teach her that the one thing she can control in these situations is how SHE reacts to them. She has a choice. She can choose to feel like a monster...different...weird. Or she can choose to see it for what it is...ignorance...and not let that ignorance change the way she feels about herself...because the ignorance is a reflection on them....not her. She knows she is strong...and brave...and kind...and compassionate...and funny weird. SHE knows these things....and I know these things....and THAT is what really matters.

Oh.....and diabetes? Fuck you.