Idle Ignorance

Since our life with diabetes began, I have come across quite a few people that have tried to convince me that they have the cure....that it is right there in front of our eyes and we are just to blinded and too brainwashed by the medical community to see it. It can be quite comical actually the different things that people will say is the magic cure to our daily battle...everything from juice, to cinammon, to eating a raw food diet, and even to cannabis oil. As a somewhat seasoned D-Mom....and by seasoned, I mean slightly cynical with a side of skepticism...I know these things to be untrue. I know that no matter how many raw veggies I feed Emma....she is still going to have a pancreas that no longer produces insulin. I know that no matter how much juice I pour down her throat...it's not going to miraculously kickstart her pancreas back to fully functioning anymore. I know this. I get this. I understand and have accepted the fact that we are in this for the long haul. That does not mean that I have given up hope for a cure....because I will always have hope...what kind of life would I have to live if I didn't allow hope to take up space in my heart?
I know that there are bad people out there in the world. I know that more often than not...these people are out to make money...no matter who they hurt...who they deceive...whose hopes they get up......they don't care...they just want to make a quick and easy buck. It's disturbing and pathetic. Now that we are almost 5 years into this life, when I read these things....my heart hurts for the newly diagnosed Mom that may happen across it. I want to stop her from believing these things so I can save her the pain of realizing they are not true.
How can I do that though when the internet is literally saturated with misinformation about type 1 diabetes? Movies, tv shows, newspaper articles and interviews....all spouting these falsehoods and perpetuating the ignorance. How can I attempt to save this newly diagnosed Mom from the inevitable pain? It's all around us. The general public is under the assumption that diabetes is easily taken care of...easily managed...all we need to do is stop eating sugary foods and get some exercise. We brought this upon ourselves and now we must pay the price with needles and depriving ourselves of what we once indulged in. It makes me sad. It makes me frustrated. It makes me angry to know that my daughter will have to endure this ignorance for the rest of her life...or at least until a cure is found.
Once a week at school, there is a health teacher that comes to Emma's classroom. In my mind, a health teacher should have a smidge more knowledge than the general public about diabetes....just a smidge. Apparently I was wrong in assuming this as well. Emma came home from school today and told me that her health teacher told the class that Emma has the type of diabetes that she was born with and she will have for the rest of her life.
First of all, she was not born with it. Yes, some would argue the fact that her genetic makeup was predisposed to having type 1 diabetes...that genetic makeup obviously being there from day 1 of her life. However, she was not diagnosed with diabetes until she was 4 years old. The first 4 blissful years of her life were diabetes free. Second of all, how can one grown adult who works with children on a daily basis think that it is ok to announce to the class that an 8 yr old will have this disease for the rest of her life? Even if that turns out to be the truth, is a room full of 8 yr olds really the place to announce that fact? I prefer to teach my child to have hope. She deserves to have that hope...and for a teacher...someone who she perceives to be an authority figure...someone who knows a lot more than she does...to basically tell her she is wrong in having that hope....not ok in my opinion...not ok at all.
So, this is my little rant for the day. Educate yourself before you make the decision to open your mouth. Education is the key to everything. If we are not willing to take a second to crack open a book and learn something, than we might as well accept the fact that we will remain idle for the rest of our lives. Imagine where the world would be if all of those before us decided to remain idle.

Bullying

I think the word "bullying" gets thrown around a lot these days. Maybe I am naive, but it seems to me that it is occuring more and more now than it ever did when I was a kid. I have spent many days worrying that diabetes will be the root of bullying problems that my child will face. I worry that she will get made fun of for the pump she wears. I worry that she will get made fun of for being different than the other kids. I worry. It's what I do. I'm a Mom.
Over the past few years since Emma has started school, I have heard of various stories she has shared with me about other kids being mean to her...calling her fat...calling her stupid...boring...annoying..weird. I have heard it all before. Some kids are cruel. They say whatever they can think of to hurt you....I'm am assuming they do it just to make themselves feel better more than anything.
Today after school, Emma told me that a girl in her class told her that she is "Just like her Mom." The tone she used to mimic this girl's statement was very rude and very much like she was trying to be hurtful and insulting. Ok, yes...I'm a big girl...I'm almost 36 years old...I have a lot of years under my belt in comparison to this little girl...so I know that the words she chose to use are meaningless....in fact I am sure she heard them from a certain adult in her life that is not the sharpest tool in the shed. Fine. I'm ok with that. The thing that bothered me the most though was the fact that she said these things to my daughter. I often worry that my presence at school or in social situations with Emma will get on Emma's nerves...that she will feel like I am in the way..that she will resent diabetes because she knows that is the only reason why i am there...i.e. to help treat stubborn lows at school or to check in on her blood sugar number during a birthday party. I know she knows that I am there to assist in the diabetes aspect of things. I try to remain as inconspicuous as possible and slip in ninja style...do what I have to do in the ways of the pancreas arts...and slip out silently. I know she is almost 9 years old and she doesnt want the presence of her Mommy there all the time anymore. That is fine. I encourage that. I want her to feel independant.
So, I asked Emma if what this little girl said to her felt insulting or if it hurt her feelings. She told me that it didn't hurt her feelings because she knows that this is how this little girl is...and she is used to it now. I HATE that she is used to it now. I hate that this little girl is out there not only bullying my daughter, but other kids as well. I hate that she is sliding through life at school doing this and absolutely nothing is being done to stop the problem.
The world has jumped on the "bullying awareness" bandwagon...there are posters about it all over the place including the halls of Emma's school....and yet 9 times out of 10 whenever i hear about these bullying instances...absolutely nothing is done about it...nothing is done to rectify the situation. In my opinion, there is a lot of lip service going on and zero action. How can we as a society expect the world we are leaving for our children to be any better than it is now? How can we expect it to be different when we are doing nothing to solve the current problems. We can talk and talk and talk until we are blue in the face, but unless the problem is taken seriously there will continue to be children that take their own lives or harm others because they just cant take the bullying anymore. It's time the world gets off of it's proverbial ass and actually does something about it.
Parents need to set aside their immature ways and realize that they are not helping the world by letting their children do these things...by encouraging this awful behaviour..by standing idly by and just letting it happen. You chose to have these children. You chose to give them life and bring them into this world. YOU have to chose to make it a good place for everyone!
Emma told me that she took no offense to being told she was just like me because she "likes being just like me." She said that she is happy that she is weird like me and funny and kind. She said that she would rather be like me than like this bullying little girl because she is probably sad all of the time and what kind of a life would that be.
So, while all of the ignorance in the world and bullying makes me want to become a hermit and shut out the world....ignore them all and stop talking to anyone..................I can't..........because I want my kid to be proud of me....I want her to continue wanting to be like me.....I want to be someone that she will always want to be like.

Hot dogs and Fruit Snacks

When I was little, I loved hot dogs. I would eat them on a bun...on a plate...sliced up...whatever. As long as I had some ketchup to dip them in, it was all good. Then one day, my brother and I were over visiting my grandparents house for the day. It was in the summer time and very hot out, so I remember sitting in my grandparents spare bedroom with the shades pulled on the windows to keep the sun out and the lights were off as we watched TV. It was nice and cozy in there...it had a soft...barely walked on feel...to the carpet because, as I said...it was the spare room. As I sat there running my hand across the floor, I could hear my Grandma in the kitchen making us lunch. I smiled as I heard my brother ask her what she was making and she said hot dogs. Before long, she called us both into the kitchen and we sat down at the table to eat. My Grandpa was there pulling the ketchup from the refrigerator and asking us if we would like some milk. My Grandpa had kind eyes....beautiful blue eyes...the kind that had the power to make you feel at home when he looked at you. I miss my Grandpa.
My Grandma set the plate of hot dogs on the table before us and I cringed as I saw that they were burned.....not just a little blackened around the edges or in tiny little spots that I could overlook as I bit into them......but the entire thing was black. My stomach turned as I knew that my Grandma would probably make us eat them anyway...and my mind raced as I tried to come up with an excuse NOT to eat them. I wasn't hungry? I felt sick? I just yesterday was told by the doctor that I am allergic to hot dogs? Nothing seemed like it would work....so I decided to tell her the truth...I didnt want to eat them because they were burned and would be gross. My Grandma wasn't having it....she told me that I had to eat them anyway...despite my Grandpa's best efforts at arguing my point of view for me and offering to make us all peanut butter sandwiches instead. Nope. Hot dogs it was. I ate one.
Well, to make a long story short....I wound up getting sick...all over the soft barely walked on carpet of the spare bedroom...and all over the bathroom floor before I made it to the toilet. My Grandpa held my hair back for me and spoke to me in the kindest most soothing voice...he put a cool cloth on my neck.

It took me about 20 years to eat another hot dog. I hated them after that day at my Grandparents house. The mere thought of them or smell of them made my stomach turn. Eventually I got over it and ate them again....but that memory still sticks in my mind.

There is a diabetes related point to this story...really..there is...just stick with me here. Whenever Emma is low at night while she is sleeping, I always give her fruit snacks. You know, those fun cartoon themed chewy gummy type fruit snacks...Dora or Cars or Scooby Doo. My child is the champion of chewing and eating those things in her sleep....she never wakes up...she never has any memory of eating them the following morning. One day she asked me if she had been low the night prior because when she woke up...she had tasted something like fruit snacks in her mouth. She had been low...and my husband had in fact given her some fruit snacks while she slept.

It made me think of my hot dog story. I wonder if when Emma is older, will she hate fruit snacks? Will the mere thought of them or sight of them cause her stomach to turn? Will they cause her to remember all of the lows as a child and will she then associate them with bad feelings? I wonder if one day she will think about fruit snacks and let out a huge sigh as she realizes why she does not like them. Our memories are so intertwined with things and sights and smells and sounds....I find it very interesting. I hope that if Emma does wind up hating fruit snacks one day, that she will still chuckle a bit at how she deserved a gold medal for her abilities in sleep eating.

It's a Journey not a Jaunt

You know that moment when everyone else is finally in bed asleep...and you can let out that sigh of tense air that you have been holding in all day? Yea, me too. That feeling when you collapse into the safety of your living room sofa and before your butt even hits the cushions, you can feel the hot tears on your cheeks. All of the days worries and stresses melting away around you. Yep, I've totally been there too. It's hard to keep it in some days...until that moment of the day arrives. Sometimes I feel like I can't do anything right. Sometimes I just want to give up. I just want to sit down on that couch and not get up....not talk to anyone...not think of anything...not move. Somehow I always get back up though...it's never ending...it's a journey not a jaunt.

I know for myself, that I sometimes feel guilty for having a pity party....I mean it's not ME who has type 1 diabetes...I'm not the one getting jabbed with needles everyday...I'm not the one feeling the highs and lows...I'm not the one growing up having to count every carb for every last morsel I put in my mouth. So, when I have those days of sadness and pity and despair, I feel guilty...I feel like I'm being a big baby and a whiner and I should just suck it up and realize that I have it easy by comparison. I feel like I don't deserve those moments. I don't know, maybe it's a Mom thing...the burden of guilt....maybe it's just compounded because im a  D-Mom...I have no idea. I just know that more often than not, whenever I allow myself to have those moments of pity....it is usually immediately followed by guilt.

I am starting to realize that this D-Mom gig is a journey. It's not just a job that was thrust upon my shoulders without my consent. It's not as simple as that. While, yes, I am not the one with type 1 diabetes.....I still live it....I still feel it...I feel her frustration when I see those ugly numbers and I feel her pain when an infusion site I insert into her body causes her to wince in pain. I feel it BECAUSE I am her mom. She is a part of me and while these things are happening to her body....I still feel them.

You know that old saying of how raising a child is like watching your heart walk around outside of your body? I think it's true...I think that's why I feel it like I do. That connection between a mother and her child is indescribable....it's beautiful...at times it's heart wrenching....but it's unbreakable.
So, yes.....I am learning that its ok to have my moments on the pity party couch. They are a good thing actually...they help me to appreciate things more. I appreciate my own strength more. I appreciate my daughters strength more. I appreciate our life more.

You will walk as One

Do you want to know what it's like? I mean do you REALLY want to know?
Ok, I'll tell you.

It's like holding onto the most precious thing in the world with trembling hands...careful hands...cautious and protective hands. Holding on to the beauty and the innocense and attempting to shield it from the storm. You must walk through life carrying this breathtaking gem and as you do your best to savour every moment...every step along the way...you know deep inside that you can't stop all of the dangers. You know deep down in the dark and cold fearful place inside your soul, that it's not really solely up to you. You know that no matter how hard you try or how much you know or how many steps you take or how careful you are with gently placing your hands around this precious weight in the palms of your hands, that the most frightening thing you can imagine could very well come to be.

It's bigger than you. It's bigger than all of us. You know this the same as you know your own name. And yet you soldier on. You soldier on into the depths of the unknown. You soldier on with hope in your heart and fear in your gut. You soldier on with joy upon your face and pride shining through your sparkling eyes. You soldier on because you must....there is no choice...you were never given a choice...it is what it is and you must accept it and keep moving. There is no looking back. There is no room for regrets. There is no time to waste. You take each moment for what it is. You live in that moment...good OR bad...you live in it...you allow yourself to feel it...you hold on to your life's most precious gem with every last ounce of your strength...and

you...

keep...

moving.

There are moments where it feels like you are trudging through the caves of insanity...running into the walls and fumbling your hands with each step. There are moments where you hold that precious gem high above your head and shout in victory. There are moments where you cradle it in your arms and hold it close to your heart as you watch the tears that have fallen from your own eyes sprinkle to ground all around you. There are moments where the weight of it all is so unbearable that you can do no better than crawl on your knees through the muddy floors of that frightening cave. There are moments where it feels like that precious gem is as light as air and you can't believe you almost forgot you were even carrying it. There are even moments where you relish in the chance you were given...the opportunity to even be able to carry it.

There will come a time when you will realize that you must gently set down this gem. Place it delicately on the ground beside you and watch....see how this amazing thing of beauty has grown and flourished from inside your hands. Your precious gem has been watching from within the safety of your hands and she has learned. That day will come where you will walk beside her...holding her hand...cheering her on...drying her tears...listening to her fears. You will marvel at the brilliance that flows from her spirit. You will walk. She will walk. Stride for stride...breath for breath...moment for moment.

You will walk as one.

Cloudy with a chance of flurried F-Words

If you're not a fan of profanities, I would suggest not reading this post. I apologize for any potential offending for those of you that do actually continue reading it.

Sometimes I think that old saying of "you get what you give" is a bunch of bullshit. I am a good person. I go out of my way to help people, be there for them, make them smile, and make them feel supported. I always put myself and my feelings last. I go above and beyond in everything I do for others. For example, instead of simply wishing someone a happy birthday....i would be the type of person to make someone cookies or buy them flowers and drop it off at their doorstep just to make them smile first thing in the morning. It's important to me to make others feel good. It's important to me to be a good friend. It's important to me to be a good mom and a good wife. It's important to me to be a good person. I like to help. I like to be the person that others turn to and others think of when they need help. I like it. It makes me feel like I have a purpose in life.

So, if I put all of that out there into the world and I give so much of myself and try to be as good of a person as I possibly can, then why do good things not happen to me? Why have I spent all last night and all fuckin day trying to fight high blood sugars? Why does something as friggin ordinary as a common cold have to cause such chaos and stress and anger with blood sugars? Why can't I just go to the store and buy her some orange juice and give her a big ol glass and not have to count the fuckin carbs and bolus her for it? Why do we have to DO THIS? Why do we have to come up with all of these alternatives and ideas and plans and options and guesses and think think think think think about all of the bull shit that comes along with this disease? Why the fuck can't I just pour her a damn glass of orange juice and give it to her to help her with her cold?

I KNOW why...because of diabetes....because my daughter has type 1 diabetes...THAT'S why I can't. The magnitude of that statement makes my head feel like it will explode sometimes. I know it could be worse. I know she could be dealing with a stomach virus and throwing  up and have ketones and low blood sugars and dehydrated. I KNOW it could be that instead. I know a stupid ass common cold is nothing in the grand scheme of things. But I think THAT is what is pissing me off most of all in this moment. The fact that something as simple and common and ordinary and typical and normal as a COLD can cause such freakin havoc on her body and her blood sugars. I feel like a piece of shit pseudo pancreas right now. I have tried absolutely freakin everything to try to bring them down. Rage bolused, temp basals up the wazoo, water, jumping on the friggin trampoline at night with her in the snow, sprinting down the street at night in the snow, changed her site, EVERYTHING....i've done it all....I've eliminated all of the other potential possibilities for these stubborn ass highs and come to the conclusion that it's simply because of the damn cold.

I hate this disease. Yes, somedays I forget about it...I have learned to deal with it. I know "it's just a number...treat it and move on." I know all of the text book sayings people reference to try to make others feel better. I know them and i get them and i appreciate the sentiment.....i truly do. But it's still a bunch of bullshit. It's a big steaming pile of horse shit. Diabetes is a bitch and I hate it in this moment in time. It's January 18, 2013 8:55pm....and I fucking hate diabetes...and I am ALLOWED to hate it right now. I am feeling this and living in it and stewing in my hatred because I have put in my time...my daughter has put in her time and I am allowed to be pissed right the fuck off.

That is all.

Again, I hope I didnt make anyone's ears bleed from my flurry of f-words.....but I had to get it out.

I Am Beautiful...?

There are days where I feel ugly. There are days where I do not like who I see in the mirror...days where I feel like I'm not good enough. I have moments where I look at myself in the mirror as I am standing there brushing my teeth and I am stunned. I see this person...with tired eyes and gray hairs. I see her and I wonder what the hell happened. There are days where I walk past another woman in the store and I feel like I am invisible. I stop and try to remember if I even remembered to brush my hair that morning as I look at her perfect curls bouncing with each step she takes. I see the smile on her face as she hums a pretty little tune...and I feel the drab written all over my own face.

There are days that go by when my husband walks in the door after work and his face lights up when he sees me standing there in the kitchen making dinner. He says things like, "Hi beautiful! How was your day?" and I find myself fighting the urge to turn around and look to see if Emma is standing behind me...because his question must be directed at her...because I don't feel beautiful.

There are days where I just randomly pull things from my closet to put on in the morning...because I am too tired to even care whether or not they are stylish or look nice. There are days where I see exactly just how much the stress of this life with diabetes has affected me because the inside exhaustion is shown all the way through to the outside.

I'm not a vain person. I never have been. I do not have the greatest self-esteem. I never have. I think I am ok...obviously not drop dead gorgeous...but I don't think i am horrifying either. I have my moments where I think I look pretty...but honestly not as often as I would like.

Now that Emma is almost 9 years old, I've noticed her paying more attention  to things like this. I want to change my attitude about myself and my appearance and my self-esteem...so I can lead by example for my daughter. I want to be able to exhude that feeling of beauty for her. I'm not simply talking about outer beauty, by the way. I want to exhude confidence in myself for her to see because I think that true beauty comes from within. I have talked with her about this quite a few times in the past...about how a person can be beautiful on the outside, but very mean on the inside..which causes their outside to not seem so pretty after all. I know she gets it. I know she believes that to be true. But I would like to be able to lead by example and show her that I feel good about myself on the inside which in turn makes me prettier on the outside.

I think it is probably easier said than done....I mean I am going on 36 years old this year...it's hard to change the way of you perceive yourself after so many years. I will try though. I will do my best because I want her to see it and I don't want her to ever feel that she is anything but beautiful.

Do you believe in God?

So I wanted to write about something that I've thought of a lot over the years, but never wrote about. I would always decide not to blog about it, because it is one of those topics that typically has varying opinions and strong ones at that.
I am curious though about how people living this D-life feel about God.
There, I said it....I am hoping not to cause any hurt feelings or anything by writing this....I am just really curious. I have spoken with a few people who have said that they have a hard time believing in God since their child was diagnosed. They have a hard time grasping the idea that He would unload this burden on their child and their family for no apparent reason at all. A sweet innocent child...forced to live with and manage a disease that is all encompassing and can be at times all-consuming. How could He make this so? How could He create such heartache and difficulty and place it in the body of a small child?
On the one hand, I can see their point of view. I can see how unfair it is. I can see how they would not believe in Him because of this...because of the circumstance...because of the magnitude of this disease. I get that. I at times have hated Him for it too.
I have spoken with others who believe in God with their whole heart and soul. They live it, breathe it, and that light shines bright with every word spoken from their lips. They somehow are able to accept this disease as what it is...and somehow they are able to not "blame" or "admonish" God for allowing it to happen to their child. I have to admit, I am envious of people who are able to do that all the time. In the beginning of this disease, I hated Him....I hated the fact that he chose my daughter to carry this lifelong disease. I hated the fact that He allowed it to happen....I mean, she was only 4 years old...naive to the pain and to the endurance needed to make it in this life...how could He have dumped this on her shoulders?
I am not an in your face loud and out there religious person. I have beliefs and I do consider myself to be in tune with my spiritual side as best as I can in this moment of my life. I have gotten to the point where I don't  blame God. I don't blame Him or hate Him or have any animosity towards him for causing this to happen to Emma. I made the conscious decision to choose to believe that this happened for a reason....diabetes is in our lives for a reason. I think that reason is to connect with others...share in that common bond and goal. I think that reason is to peel away the blinders that lifes stresses puts over my eyes and see the world through a different set of eyes...an appreciative set of eyes. I appreciate life and all of the little moments in between more than I think I would have had diabetes not been a factor. I give more of myself, I care more deeply for others, I listen with open ears and an open heart instead of a distracted selfish one. I see my daughter differently....not in a "poor thing" way, but rather in a breath filled with awe kind of way. I love harder.
So, while yes, I do have moments where I hate this disease and I feel this need to direct my hate for it at someone or something.....for fear of otherwise imploding....and I find myself hating God and hating that He made this happen to my girl. I think more and more so as the days go on, I find myself loving harder and seeing the world more clearly though.
Thinking about this makes me curious how you feel? Do you find diabetes has affected your beliefs? Or has it caused you to see the world differently as well?

The Most Beautiful Diabetes Puzzle

There is one place in the house where I let my mind wander...the shower. In the early days after diagnosis, I spent many moments standing there, letting the hot water spray across my face and splash away the tears falling from my eyes. The tears of frustration, anger, sadness....they have still occured randomly over the past almost 5 years...but they are definitely less than the amount that washed down the drain in those first few weeks. I have spent many moments standing there, trying to wake myself up for the day and shake off the remnants of another sleepless night due to wonky blood sugars. Standing there feeling the hot water soothe my tired eyes, my weary shoulders, my aching head. I have spent countless moments standing there, thinking....thinking of this life and this community that we have been a part of all these years. This morning is a prime example of one of those moments.

I stood there thinking about how the diabetes community is sort of like a huge puzzle. I don't mean one of those easy 100 piece rectangular shaped ones....I'm talking the big jobs...the 1000+ piecers that wind up forming some odd dragon shape when you are finished. When you first open the box and dump all the pieces out on the table in front of you....it's overwhelming...you doubt your ability to even be able to find two matching pieces, let alone complete the entire thing! So, you glance at the picture on the box and know that you want to do it...you want to finish it so you can feel that sense of accomplishment and get to see the masterpiece at the end. You begin by flipping each piece right side up, so you can see the section of the picture on each tiny oddly shaped piece. If you're like me, you then search for the corner pieces...as experience has always taught me that it's easier to find the middle if you have the frame set up first.

Did you read that last sentence? Did it hit you like it hit me when I thought of it?

It's easier to find the middle, if you have the frame set up first.

Managing diabetes uses the exact same concept for me. When I was first told that my daughter had type 1 diabetes, I was lost...overwhelmed...doubted my abilities. Then, I discovered the diabetes community...I flipped over my puzzle pieces so I could see the snippits of the big picture....I made friends...felt the bond...asked questions and learned from them. I am still learning from them. I set up my frame. My frame is solid.

All of these years later, I am still searching for and finding pieces to the middle of the puzzle. Each one of us is a puzzle piece for another. Be it doctors, nurses, dieticians, social workers, endos, teachers, family members, friends, or pets and alert dogs. We are all pieces in the puzzle. We are all unique individuals...beautiful and strong on our own. When placed together, side by side...our curves and edges interlocking with one another...we form the most incredible puzzle imaginable. As one solid masterpiece, we can withstand anything...and we will.

Remembering that first check

So I realized something odd last night as I was standing beside my sleeping child checking her blood sugar. It occured to me that I've sort of become numb to it all. I stood there thinking about the countless number of times I have crept into her room, fished around under her mound of stuffed animals and blankets to locate her hand, stuck a needle into the end of one of her little fingers and squeezed blood out to check on the number. I thought back to the very first time...my very first middle of the night check...on her first night after diagnosis.
She was asleep in her bed...nightlight glowing softly...her arms wrapped tightly around her favorite stuffed animal puppy named Scruffy. I was told by the nurse that it was sometimes easier to check their toes instead of fingers while they sleep....so I gently laid the meter and lancet device on the blanket beside her and reached under her blanket to find a toe. I remember feeling my heart race...my hands shake...the instructions I was given on how to check her blood sugar were bouncing around my weary head. It took me quite a few attempts to get it right...to get enough blood to come out...to get enough blood on the test strip...to do it in time before the meter automatically shut off on me. With each attempt, my hands shook more, my heart pounded more, all of the snippets of instruction vanished from my head and in their place was panic....worry...pure and honest panic. I could feel the hot tears falling from my eyes uncontrollably. I was lost. I knew that there was no way in hell that I would be able to do this again...I would never get it right...I would never be able to do it for the rest of her life...there was just no way! I wasn't good enough!
I finally got it right only to discover she was low...her first low...on her first night...I was terrified. I flew down the stairs with one thought in my mind...juice...juice...juice...juice. I poured a huge glass of orange juice and raced back up to her room spilling juice all over the place on my way. I was new at this. I didn't know the tricks of the trade. I didn't know that it's easier to give them a juicebox with a straw than it is to expect them to drink from a glass in their sleep. I didn't know. I was new. I was lost. I was scared. I did it though. I fixed my first low.
I stood there next to my daughter's bed last night...long after the meter showed me a reading. I stood there recalling that first night and my eyes zeroed in on a drop of blood on her pillow case. The remnants of a blood sugar check. It hurt my heart to see. It didn't hurt in the same way that first night after diagnosis hurt. It hurt in a different way....a tired way...a numb way.
Living a life with diabetes is not a matter of getting the routine down...getting things stable...getting to that point where all of your ratios and basal rates and numbers are settled down and in range. It's not a matter of working to achieve that goal in a week...or a year...or even 50 years. Living a life with diabetes has ups and downs...guesses and experience...past patterns and past behaviours. It's not a cut and dry thing. It is always changing...and I think the key is to learn how to become ok with that constant change...learn how to live somewhere between that place of complete panic......and that place of numbness. There has to be a balance. Yes, the scales will tip one way or the other sometimes....but if we can learn to find that sweet spot in the middle...I think that would be a happy place...and that's good enough for me.

Place your bets

You know that moment when you encounter ignorance about diabetes....and you are faced with the decision to speak up and try to set the record straight....or keep silent and walk away? It's a hard decision to make. Sometimes I feel like I am in Vegas and my odds are 50/50 on whether or not I will open someone's eyes to the truth. Sometimes I shove all of my chips on red....and it turns up black. I walk away feeling deflated and defeated. I walk away after attempting to share my knowledge about this disease...and seeing that I wasn't able to get through the glazed over look in their eyes...the blissful fog of ignorance. I walk away feeling like I failed and there is still another person wandering around out there in the world clouding the minds of others.
Emma had gymnastics class today and while I sat in my usual spot on the hallway floor, surrounded by a crowd of loud parents and kids....my ears happened to perk up when I heard the words "blood sugar." It was bizarre to me, all of that noise blaring around me...and my D-Mom ears focused in on those words. I found myself eavesdropping on a conversation between 3 of the Mom's. I won't go into detail, but there was a whole lot of ignorance going on. I sat there feeling my blood begin to boil. I was faced with the decision to join the conversation and educate these women....or take a deep breath and be silent...ignore them. More often than not, I find myself choosing to educate...because I picture my daughter's face in my mind and I have this overwhelming need to stop the ignorance. I think it's because I don't want her to spend the rest of her life having to hear it herself...it's exhausting sometimes...and sad....and I just don't want her to have to deal with it.
So, I spoke up....and I was faced with more ignorance...and women that looked at me like I had two heads and like I was just spewing forth a bunch of garbage. I felt like shouting, "I've been doing this for almost 5 years now! Yes, I don't know everything about diabetes...but I guarantee you that I know a bit more than you! I swear on my life that your doctor is full of crap when he tells you that there is no way your daughter could have diabetes because she is into sports!" (yes, that was an actual statement made by the one mother...and she believed her doctor.) I felt like yelling that and more....but I didn't....instead I sat down...took a deep breath...and closed my mouth...deflated and defeated.
On the car ride home, I talked with Emma about how special I think it is that the kids in her class know as much as they know about diabetes. I told her that I am proud of her for speaking about it. I explained to her that there are a lot of grown ups out there in the world that are ignorant about diabetes...and they always will be. She asked me why it seems like kids are more open to learning things that some grown ups. I told her that many grown ups are so set in their ways or thinking....that to even consider they could be wrong, is just impossible for them.

She told me that she is happy she's a kid....and she is happy that other kids want to know more about her diabetes...because one day they will be grown ups too...and they will stop the ignorance.

Hearing her say those words and seeing her kind eyes in the rearview mirrow as I drove....it made me feel like I won this time. I place my bets on her. I place my bets on her generation. They will change the world.

Happy 499 to me!

This is my 499th blog post. I thought I would celebrate this post instead of the next one which will be the 500th post....because really...does anyone ever celebrate the odd numbered events in life? Not really. I don't think I have ever heard of someone having a big bash to celebrate their 69th birthday. You rarely hear about people getting honoured for making it to their 12th year on the job. It's always about the 20th....or the 50th birthday...or even the 75th.
So, today....with this here blog post...I am dedicating the celebration to the often overlooked numbers and events in the world. This post is for that 8.3 blood sugar you had yesterday....sure it's not a perfect number....but it's not too shabby either! This post is for the 4 1/2 yr anniversary of your diabetes diagnosis....congrats on making it 4 1/2 years...that is no small feat and you should be proud of yourself. This post is for the 32 year old adult living with type 1 diabetes.....yes....it is also called juvenile diabetes....the word "juvenile" means child...young...immature. While you may have immature tendencies from time to time...let's be real, who doesn't in this life....I can imagine how annoying that must be for you as a productive member of society....out there in the grown up world...constantly having to clarify that you do not have type 2 diabetes....you have type 1 a.k.a. juvenile diabetes. This post is for that total guess on the carbs in a container of New York fries that your d-kiddo had at the mall today....47 carbs...spot on...you rocked that guess and you deserve a pat on the back for pulling such a random number out of the diabetes clouds. This post is for the 3:03am on the clock at your bedside table....the time that your eyes zeroed in on when your subconscious D-Mom jolted you awake...a full hour and 3 minutes past the alarm that you set. Yes, you turned it off in your sleep. Yes, you closed your eyes for just a second...fully intending to force your feet out from beneath the warm blankets of your cocoon-like slumber....focused on stumbling to your d-kiddo's room to check their blood sugar. Your intent was there....but you overslept by an hour and 3 minutes. This post is for that hour and 3 minutes. You needed that time. You needed that sleep. Don't beat yourself up over it...but rather relish in the fact that you slept...and your child was fine.
This post is for the odd times...the odd days...the odd blood sugars that came out of nowhere. This post is for the non-perfect moments...the guesses...the instincts...the fates that lie within us all. This post is for you. This post is for me. This post is for all of the people out there that live this life with as much style and grace as they can muster. Diabetes is a bastard....and trying to achieve perfection when dealing with a bastard is ridiculous. Do the best that you can. Live in the moment. It's ok for you to feel any way that you choose to feel about any situation you may find yourself in. Whether you are a person with diabetes...the parent of a child with diabetes...the spouse, grandparent, sibling, friend, or co-worker of someone with diabetes....it is OK for you to feel how you are feeling and dont ever let anyone tell you otherwise.
This post is for the stand out original...step away from the crowd...avoid the norm...speak your mind..and be yourself. You are YOU and no one knows better how to be you than YOU.
This post is for the oddness of it all. I've shared my life experiences with you 499 times now. A lot of life was lived in that time. Good and bad. 499 moments of what it is like to be the Mom of an extra sweet insulin challenged girl.
Here's to the 499's of the world!

The Stubborn Gene

How is it that you can want something so badly and try your hardest at being the absolute best person you can be and hope and pray and wish and dream and keep your nose to the grindstone and just keep swimming and just keep on truckin and keep your head up always........and it still doesnt happen? How can that be? How can it be that you can want something so bad that you can taste it....you can feel it just out of reach...just...a....bit...too...far...away..............and it never comes to be. When you feel like you have absolutely no strength left...no fight left...no hope left....what exactly IS left then?

Love.....yes, love is left....but love doesnt bring it any closer....love doesnt make it happen...love doesnt place it into your frantically shaking hands. Faith? I suppose so.
So what do you do?

Do you just keep going anyway....even though you have nothing left? At what point does it become a journey of idle acceptance? How many times must you travel the same beaten down broken rutted glass strewn dirty path....before you realize that there is in fact....nothing there...nothing at the end...
How much can you take? How many times must you tell yourself the same old lines...its just a little while...its just a number...its just a needle...its just a momentary setback...a single fleeting moment in time that was over before you knew it even began. How many times and how many moments will have to occur before there is nothing left...no voice inside your head telling you that you can keep doing this...you can keep going..pick your feet up...put them down...hell, crawl if you have to...but just keep moving!

I don't know. I dont have an answer. I don't think I ever will. I don't know that I will ever reach that point where i could accept the fact that it is what it is and there is never going to be anything different. Honestly I think I would probably fall off that cliff on the edge of sanity if I allowed myself to accept that as reality.

Sometimes I feel like the only thing keeping me going is my stubbornness. I've never been one that enjoyed being told what to do. Just ask my parents. I've never been ok with not having a choice in the matter. I think that is where my stubbornness comes in. I didn't have a choice to have diabetes come into our lives...invade my daughter's body. I didn't have a choice. When people tell me that they don't know how I do it..how I stick needles in her...how I squeeze blood from her fingertips multiple times a day, I can only respond with....I didn't have a choice. Inwardly, those words burn me from the inside out...they taste like acid as they fall from my lips. I didn't have a choice.

So, I think when all else is stripped away...the faith, the hope, the strength, the fight.......when it's gotten to the point where that is all gone......the only thing that is left for me is stubbornness. The fact that I don't like to lose. The competitive stubborn gene that makes up a huge part of my spirit...it's all that's left.

I wonder if I will ever get to a point where diabetes strips away that part of me too.