Daddy's and their daughters

Yesterday out of the blue, Emma asked me to tell her about the day she was diagnosed. It kind of caught me off guard really. I mean I always wonder if she thinks about her diabetes...and how often...and how she feels. I guess I always assumed that if there was something she wanted to know that she would ask me. If shouldn't have come as a surprise really...but it did...it felt like her words flew at me like a punch to the gut. I tried to keep a composed look on my face...and I was very careful in the words I chose to use when describing that day to her. I didn't want to hide anything...because I think it's important that she knows. I mean I go around many days advocating and educating people on the signs and symptoms and how I knew that there was something going on with her....so why would I want to gloss over those details with her of all people? I do know though that she is a very sensitive kid. She hangs on every word and takes it to heart. I didn't want to upset her or make her cry. We've both cried enough tears over this disease to fill an ocean. 
So, I explained to her how it happened. From where we were when I got the phone call from the doctor telling me I needed to get her to the hospital immediately because her bloodwork results came back and she has diabetes, (I decided to skip over the part where I asked the doctor if Emma was going to die. I skipped it because I didn't want to scare her.) to the stairs we walked down to go and register her...to the little drab room we spent the day in waiting...learning...getting more blood taken. She asked me how I told her that she has diabetes. She wanted to know word for word what I said and how I explained it to her and if she understood. I told her that after the doctor came in and told us that she has diabetes and left the room then....I held her and told her, "you have diabetes baby...but it will be ok...I promise. It just means that we will have to start paying more attention to what we eat and choosing to eat things that are better for us...you know, like carrots!" I told her how looking back on that moment now...I feel like an idiot...because I was so naive and I didn't know anything about diabetes...and to bring up carrots of all things...sigh...I feel stupid thinking about it now. She laughed and told me its ok...I didn't know back then.
I explained to her how we all were crying when we had to give her the first injection after she ate dinner that day. I was crying, she was crying, and her daddy was crying. She was stunned. I can relate. I mean every little girl thinks of their father as this invincible person with super human strength and never gets hurt...never cries...never is afraid. Daddy is the pure honest definition of the word strength. I told her that the only times I have ever seen her daddy cry was when she was born and he saw her for the first time....and when she was diagnosed and got her first injection. I told her how I didn't even see him cry when his own mom passed away. With tears in her own eyes, Emma looked at me and smiled. I don't know exactly what she was thinking....but I am sure it was something to do with feeling in her heart just how much her daddy loves her. 
I spend my days being her pancreas...her mom...her partner in crime...and her biggest fan and supporter. I love her with every single fiber of my being. I breathe for her. My heart continues to beat every day for her. I know she loves me as well...I know she feels the same. There are no words to describe how it feels to witness the depths of the love they share. I mean I know how I feel about my own dad...and I assume it's the same type of feeling. But it's just an amazing feeling to see it on her face...on his face....to see it with my own two eyes. 
So, while yes...the conversation started out painful for me and full of heartache in remembering that day.....it finished with love and feeling like my heart was full. A bond between a daughter and her daddy is a pretty amazing thing.

I try

Sometimes I feel like I'm losing my mind this time...this time I'm losing my mind...
How many more times will I have to do this? How many more days?
How many more numbers and needles? How many more steps to take?
Sometimes I feel like the monotony of the gravity will consume me.
Like a broken promise on a cold park bench in a forgotten town silenced by the rest.
Waiting...always waiting...
For that knight in shining armor to arrive upon his steed
And kiss away the scars of my broken heart that bleeds.
The breath of my unspoken fears hanging heavy in the air
Trapped behind my mask of gratitude that I put on without a care.
You can't always get what you want...they say
You have to believe...have hope...and pray.
Don't sweat the small stuff
And good things come to those who wait...
What if I were to look you in the eye and cry
I don't want to wait?
Would you see the exhaustion beneath my mask?
Would you care?
Or would you stare....
And blink away the bad puns and cheesy cliches as you go on about your merry way?
I will sigh and continue to try...
It's what I do...
I try.

Peel back the layers

Do you know what I think is beautiful?
The sound of my daughter sighing in her sleep.
The feel of cool soft grass beneath my bare feet on a hot summer day.
The wild excited look in Emma's eyes when she is trying to fall asleep on Christmas Eve.
The smell of my house when I make spaghetti because it reminds me of when I was a kid visiting my grandparents house for dinner.
The feel of my cats soft fur beneath my hands at the end of a long day...the vibrations from her purring travelling up through my hand and calming my tired mind.
The fact that there could be a million places to sit in a room...and yet every single time my kid will choose to sit right beside me...close enough so her leg is touching mine...and she's leaning against my arm.
The silence that surrounds you in the mountains.
The look in my husbands eyes when he is watching Emma do something that makes him proud.
The dimples on both of their cheeks when I see them smile the same smile.
The smell of coffee brewing in the morning as I stand there waiting with my cup in hand and one eye still shut trying to hold onto the sleep I was just in.
The way the sky looks as I walk out of the hospital doors...after our three month clinic appointment. It's a bright sky...a free sky...a clean and open sky to go along with the clean slate feeling I get knowing we get to try again starting that day...fresh...new...try again for next clinic appointment in three months time.
The feel of a vial of insulin in my hands. It's clear...definitely not odourless...but clear...and beautiful...comforting. That little glass vial full of something that is more valuable than anything in the world to me. It allows me to still have my daughter alive...and breathing...and living...and loving.
The feeling I get when a friend from years ago....a lifetime ago...posts something randomly on my Facebook page about diabetes...because they saw it...and even though diabetes does not affect their lives personally...they saw it...and read it...and wanted to share it with me because they know that we live this life.

Diabetes is not beautiful.

It's an ugly disease. Not always ugly on the outside for the world to see...but ugly nonetheless. It steals from us...time...blood...sleep. It takes what it wants...when it wants...without a second thought.
I believe there are layers to this life with diabetes though. Over time the layers build and build and sort of protect you from the magnitude of the situation...but I think it's important to sometimes peel back those layers....peel back the ugliness and the worry and the fear and the pain and the grief over the life that was once yours. Peel back the layers and find the beauty in this life despite it all. It's there. I know it's hard to see sometimes when you are surrounded by all those layers of ugliness...but I promise you the beauty is there.

Let yourself peel the layers back and find it once in a while. It's nice.

Sometimes it's just about respect

So I thought I'd share a moment in our life with diabetes for those of you that don't live this life. I had to take Emma to the doctor today to get a booster shot for the chicken pox vaccination. While sitting in the waiting room, an elderly couple walked in. There was only one empty chair available...and instead of being a gentleman...the husband took it...leaving his wife to stand there waiting. I stood up and offered her my seat because my Momma raised me right and taught me to have a little respect for my elders. She graciously accepted the seat.

I pulled out Emma's blood sugar meter and gave it to her to test before we got called in because we have been battling high blood sugars today and I was trying to keep some semblance of control over them during this highly stressful time for her. While Emma was checking, another patient got called in, leaving an empty seat. Before I could take even a single step forward to go sit down in it...the elderly woman jumped up and pranced over to sit down. I didn't think anything of it...until I saw the look of disgust on her face. She was directing it towards Emma and I....she was disgusted at the fact that Emma was checking her blood sugar in the seat next to her. I don't know if it was the blood...or the fact that she figured out that Emma is diabetic...but whatever the case may be...it disgusted her.

I have encountered many ignorant people in my life....especially people ignorant about diabetes...but this one stunned me. I had just politely given up my seat for her....and she returned the favor by behaving like this. It hurt. I was angry. I was upset. But I didn't say a word.

Do you want to know why I didn't say a word? Because Emma was oblivious to the entire thing. I didn't want her to know that this ignorant behaviour had just occurred right in front of her. I didn't want her to feel the hurt I felt. I didn't want her to feel ashamed or embarassed. I didn't want her to feel different.

Diabetes isn't all about blood and needles and food and exercise.

Sometimes it's about understanding...and acceptance...and respect.

Carry on carry on

The sound of silence is sometimes unbearable.

Every step is a pause in the parade of madness

And you are struggling to find your tune

Amidst the chaos of your normal

And the path with which you were given.

Stomping along to the beat of unsure and hesitant drums

You carry on

Carry on to the streets of the forgotten and lost

The weary and the panicked.

Trumpets blare piercing the afternoon sky

With a single note

Signalling the arrival of the fight and so you

Carry on

Carry on.

Streamers and screams colliding across the air in front of you 

Faces void of understanding line the street around you

And the thud of your sisters steps behind you forces you to

Carry on

Carry on.

Marching over hills and the horizon

The band stops playing

The crowd disappears 

Confetti is swept away 

Erasing the moment and turning it into a memory

And yet you march on...

Your sisters march on...

Time marches on...

Carry on

Carry on.

Accepting failure

How do you know when you have reached a point of acceptance in your career as a D-Mom?
When you have spent a full two days...48 hours...battling high blood sugars due to your child having something so "simple" as a common cold...and you realize that you went round for round with diabetes...and while, yes...you did win some of those rounds...for the most part, you failed.

I am sitting here on my couch in my quiet living room...the only sound is the constant whir of the humidifier in Emma's room coming through the baby monitor laying on the back of the couch next to my head. It's quiet...it's calm...all the noises of the day are over. The constant beeping and clicking of the meter and lancet over for now. The muttered curse words have ceased to fall from my angry pursed lips. I've accepted it. I lost this round.

The odd thing about this realization though is the fact that I'm ok with it. I'm ok with losing this round because I know that I did everything I could. I tried my best. I rage boluses like a champion. I rocked temp basals up to 150% (that's 150% MORE basal than she normally gets on a good day) without batting an eyelash. I changed sites, I changed insulin, I have corrections, I pushed her to drink water like a late night infomercial host pushing me to buy a pair of jeggings. I did it all. I tried every single thing I could think of...every possible option. I googled ideas to help...I looked through the stack of papers I got at diagnosis hoping to find some nugget of info that I had since forgotten over the past almost 5 yrs.

I tried.

And I failed.

And I'm ok with that.

Do you want to know why I'm ok with failing?

Because I get to wake up tomorrow morning and try again. I get to have a clean slate when she wakes up tomorrow morning and jab a needle into her fingertip and squeeze blood out of it and put it on a test strip and wait for that beep....that ever present constant beep in my life...and I get to hold my breath as I watch it count down...5....4...3...2...1....and I get to try again.

Yes, I may lose again tomorrow. I may exhaust all of the possible options again...causing me to feel like I am going insane and might as well be banging my weary head against the brick wall of my house.....

....but I get the chance to try again.

Some people don't get that chance. Some people would give anything to have that chance to be so utterly and completely frustrated. Some people lay awake at night with tears of grief and anguish falling from their eyes...wishing for that chance again...that chance to try.

I failed today...and I'm ok with it.

My first Friends For Life experience

How do you describe the feeling that you get when you are sitting in a conference room full of people all living their own versions of your life? How do you describe the overwhelming emotions that fill your heart as you sit there listening to new ideas...new research...new studies...new methods for managing diabetes that you never knew about? I've been dealing with this bastard of a disease for nearly 5 years now....and while I would never believe that I knew everything about it...or that there wasnt anything more that I could learn, I still have to admit that it was surprising to me that certain questions never occurred to me...certain ways of handling blood sugars and foods and attitudes...it just never occurred to me.
I listened to Gary Scheiner, author of "Think Like a Pancreas", speak about hypoglycemia. Since day 1 in my career of a D-Mom, the rule of treat the low immediately...lows are scary...lows are dangerous...fix them immediately...danger danger danger....was shoved down my throat. Gary said something that will stick in my brain forever..."it's not how low you get...it's how long you are low." It seems like such a simple sentence when I read it back...but that little sentence stuck with me. I panic about lows. He broke it down into simple concise terms while using logic and it made sense to me. When he asked if there were any questions from the audience, I sat there...thinking...feeling nervous...I mean here was the Michael Jordan of the diabetes world standing right in front of me. I wanted to ask him a question...I wanted to make it a good one..I thought about all of the hypoglycemia experiences I have had over the years with Emma and one in particular stood out for me. I raised my hand and as he called on me, I wanted to make sure my voice didn't sound as nervous as I felt on the inside. Believe it or not, I am not a fan of public speaking or being the centre of attention...and by raising my hand to ask a question in front of this room full of people, I was pushing the limits of my nervousness. Anyway, I asked him if he had any advice when it comes to illnesses involving nausea, low blood sugars, and ketones. That is one situation that I have yet to gain even a tiny shred of confidence in during the past 5 years. Gary said that the best way to handle that situation is to give mini doses of glucagon to help raise the BG and then I would be able to give insulin to help get rid of ketones. Simple...logical...concise.
I listened to a doctor speak about the importance of testing often and testing overnight. It was a very refreshing experience for me as I have heard countless people tell me I don't need to test as often as I do or over night. By the way, I test her between 8-10 times a day. I have heard the "OCD" comments from doctors, nurses, other d-parents...so it was awesome for me to hear this man say this. If you are not testing, you are not getting the information you need to make any adjustments needed. I listened to him speak about new research and new breakthroughs occurring. It was also refreshing to me because I never hear of these things here at home. I saw a slide he showed of an actual brain cell with normal, low, and then high blood sugar. It was shocking to me how different the high blood sugar looked compared to the others!
On the social side of things, I met a lot of other families...a lot of newly diagnosed families...a lot of "veterans" in this d-life. I stood there at a table checking Emma's blood sugar before she ate a snack...her animas meter remote in my hand...like countless times before...and as I was bolusing her, I heard a little girl on the other side of the table whispering to her Dad. I looked up and they were staring a us...the little girl was curious...her Dad had that all too familiar look of "newness" in his eyes. He explained to me that his little girl was just diagnosed in November and she was terrified of the pump...but since she had been at the conference...and she had seen all of the kids on pumps...it was easing her mind. I opened my mouth to say what I usually say about Emma's Animas Ping....how much we love it...how it has given her back so much of her freedom...how she would never go back to injections....but before I could get a word out, Emma spoke up. She told the little girl that she loves her pump...and that she was SO freaked out about it for years...but once she decided she wanted it...and actually did the site changes a few times...it was easy. She told this little girl that it doesn't really hurt at all anymore to get site changes...except for on her legs still...but how I use numbing cream for those and it makes it easier. I honestly wanted to cry as I stood there listening to her talk. She sounded so grown up...so in control...like this was so normal. I watched these too little girls have a conversation about insulin pumps and the pain involved....and it hit me. On the outside...to anyone walking by that didn't know them...it would appear these two girls were just chatting...maybe about One Direction...or Spongebob...or Monster High dolls......but if you stop...peel off the blinders and peer in a little closer....they were talking about something so much more grown up...and serious...and real...and important to their lives.
I saw Emma run around and dance with another little girl she met...giggling and whispering secrets as only two little 9 year old girls can. They both have type 1 diabetes. They both have a pump. They both live this life with strength and bravery and determination that would rival the greatest leaders of the world......and they are only 9 years old.
I sat there in another conference room listening to Kyle Cochran (please google him if you don't know him!) speak and share his incredible story. He is strength and inspiration personified. He encouraged us all to find that special thing inside of ourselves and run with it....use it to make the world around us a better place...use it to help others...inspire them...encourage them. Every time I saw him walking around this weekend, he was smiling....every single time. It was infectious.....we couldn't pass him by without saying hi and smiling back and chatting.
I got to meet in person one of the most amazing people I have ever met in my life this weekend. She is a pillar of support and inspiration as well. She has the same infectious smile and personality as Kyle. I found myself wandering around at different points this weekend...checking things out...chatting with others...and I would hear her laugh. See, she has one of those special laughs...the kind that makes you smile when you hear it...and laugh right along with her...no matter where you are. She has a light that shines out on the world around her....an honest light...a truly pure and good to the very core of her being kind of light. I am blessed to know her and be able to call her my friend.
So, like I asked in the beginning of this post....how do you describe the feeling you get being at an event like this? How do you describe the instant smile that shines on your face as you hear various meters and pumps beeping...lancet devices clicking...glucose tabs being chewed...boluses given? How do you describe the feeling that hits your soul when you hear another Mom tell her child how many carbs is in the food they are about to eat? You look at her and your eyes connect...and no words need to be spoken...not a sound is uttered...but your souls connect...your spirits are bonded together in this life.
There are no words. Only smiles, sparkles in all of our tired but hopeful eyes, and the sound of our hearts beating in unison as we walk this D path together.