Saturday, December 29, 2012

A Tale of 2 D-Kiddos for a Night

Over the last almost 9 years, I have seen a lot of kids playing together. I've seen Emma play with a lot of different kids. It's always facinating to me to see how kids interact with each other...the differences in behaviour...how boys play vs how girls play. I think it's pretty cool to see these little people interact and how their personalities shine through...how they are learning as they are playing...they are learning how to get along with others...how to work together. They are learning and forming bonds and showing a little light along the way of glimpses into who they will be as adults. I think it is very cool to watch.
Tonight Emma had a friend sleep over. She has had a few friends over now and has actually gone to one sleepover at a friends herself. She is making memories...just like I did at that age...memories that will last her a lifetime...memories that she will think of one day when she is a Mom and her kids reach this age as well. This sleepover was a little different though. The friend that slept over has type 1 diabetes too. I have to admit I was a little nervous at the thought of being 2 pancreases for these girls. I was a little nervous....I didn't want to screw up...I didn't want to do anything wrong to cause the little girls Mom to worry instead of enjoy her night off. This Mom and her family mean a lot to me and I wanted to make tonight as care free for them all as possible. So, I shoved my nervousness way down deep...and I tried to look at it as logically as possible. Yes, there are two d-kiddos asleep upstairs instead of just one tonight. Yes, they both have pancreases that no longer work. Yes, they both are wearing insulin pumps and will need me to tip toe into the room in the wee hours of the night to check their blood sugars. I can do this. I have done it for one d-kiddo for almost 5 years now...its just another finger poke in the long list of finger pokes i have done in my lifetime.
As I watched the two girls playing tonight, I couldn't help but smile. Had diabetes not entered our lives, these two little girls never would have met. They did all the typical little girl things...played with Barbies, Monster High dolls, played Just Dance on the Wii...they giggled, they had snacks, they chattered away like only little girls know how.
One moment sticks out for me....as they were playing, Emma's friend asked her if she was scared to get her first infusion site put in when she first started pumping. Emma said, "Oh YA! I was really scared!"...her friend admitted that she was too.....and then they started playing again. It was just a moment in their chatter....a moment of something that is their reality...a thought that occured to them...an experience they have both shared. It made my heart hurt to be honest. It hurt because of the magnitude of the experience they have both had at such a young age....and it hurt because of how smoothly and seamlessly they continued on about their play....like it was just another thing to talk about. I guess in reality...it IS just another thing for them to talk about....because it IS their reality...it IS a part of them both.
I'm glad they have that bond. I'm glad that Emma wasn't the only d-kid in the room tonight. I'm glad they both felt less alone.
I also want to mention that after my experience tonight, I tip my hat to all of the parents out their with more than one child that has diabetes. It's not easy. It's hard to keep the numbers straight. It's hard to split your thinking three seperate ways....one part yourself and one part for each kid. It's hard. You are all amazing people in my eyes...and it did not take me long to realize that.
Even after all this time, I still don't know everything about diabetes....I probably never will...but after tonight, I do know that if we aren't there to help each other....then the world would be a much sadder place. I'm greatful for my D-peeps....all of you...near and far.

Sunday, December 23, 2012

I think she knows

Emma and I were looking through old videos saved to my laptop the other day. We came across one that she made for World Diabetes Day and she was talking about the day she was diagnosed. She was only 4 years old...and I was always under the impression that she didn't really know what was going on other than we made her go to the hospital and that it was boring.

Well, she mentioned something in the video that really struck a chord with me and made me realize that no matter what the age...kids get it. They are a lot smarter than we give them credit for. They listen when we don't think they are listening. They can read the looks on our faces no matter how good we think we are at pretending everything is ok. They can tell by the sound of our voices and the look in our eyes. They know.

Emma said, "I remember how people kept taking me for walks that day. I think it was because they were trying to get me away from the bad news."

I do remember taking her out of that depressing hospital room and going for walks. I remember my husband doing the same. I remember the feel of her tiny little 4 year old hand in mine. I remember staring at the faces of the people around us in the hallways...staring at them and feeling the jealous tears stinging my eyes. I remember thinking to myself that I wished I could just scoop her up in my arms and run out the hospital doors. I wanted to flee the building, run outside as fast as I could, and just keep going. I wanted to leave and never come back. I remember walking past the cafeteria and seeing people milling about with their trays of food...thinking to myself how unfair it all was...how we were now destined for a life of restrictions and limits and battles with food. All the while I could feel the warmth of her tiny little hand in mine.

Thinking back on it now, I realize that in that moment...her tiny little hand was my strength. The feel of her hand in mine grounded me...it kept me sane. I wonder if she knew how much it meant to me that she was taking each minute in stride. I wonder if she knew at 4 years old that I felt lost...incapable...scared...like a failure. I wonder if she knew that any shred of confidence I had in my ability to be her Mommy had been the thing to flee the building...right out the front door....as soon as I heard the word "diabetes." I wonder if she knew I was wandering around...no purpose to my steps...no direction in mind...no end in sight. I wonder if she knew that she was the only thing making me keep moving...putting one foot in front of the other.

I wonder if she knows the same rings true today....over 4 years later. I wonder if she knows that she is the reason for every step I take...every stumble out of bed in the morning...every crawl into bed at night. I wonder if she knows that even though her hand is now not as tiny....that when it is placed in mine...I feel like I could conquer the world.

I think she does...I think she knows.

Wednesday, December 19, 2012

Cause you had a bad day...

We had a rough day today. I felt like my voice wasn't heard. I felt like my kid and I didn't matter...like we were just two small people in the world that didn't matter because we were hidden behind a mound of paper and rules and policies. I was hurt. I was angry. I felt sad.
Now that a couple of hours have passed, I can see through the red haze of being upset. I learned a couple of things today. I learned that I am a lot stronger than I thought I was...which is surprising to me...because I have always thought that since diabetes came into our lives, I had become stronger already. I learned that while in the midst of chaos and hurt and people who don't get it...people who don't understand...people who don't care...........there are STILL people that do care. I learned that THOSE people are the ones that matter and THOSE people are the ones that I need to think about. I learned that the faces of those people are what I need to pull up to the front of my mind and my thoughts. I need to focus on them and remember them and know in my heart that they have our best interests in mind....they care about my daughter...they care about us. I learned that the actions of a few do not reflect the actions and purpose of all.
I learned that there is no length that I won't go to when it comes to Emma. I will push and push and push until the results I need...the results SHE needs are reached. I learned that no matter how upset I am and how angry I am...I will keep going. When it comes to Emma I will always keep going....because it's what I do. I am her Mom and it's what I do. I have always liked to think that I would knock down walls, run to the ends of the Earth, fight off any problem that may arise for her. I knew I had it in me....but it was a nice reminder today to actually feel it. To feel that D-Mom fight...that fire in my belly...my emotions threatening to take over....it was a nice reminder even though at the time it hurt.
I learned that the people who care most about us feel the same way. They are in our corner and they are willing to do whatever it takes to fix things. They are there to join their voice with mine when I feel like my voice is falling on deaf ears. That's a comforting thing to know in regular ordinary life....it's all the more magnified when it comes to a life with D.
Today I learned that I do have a voice...and my voice matters...and I can't thank those people who helped me see that enough.

Monday, December 17, 2012

Survivor or Compassion

Like many people tonight, I was looking forward to watching the season finale of "Survivor." For the past few seasons, the show has become a sort of Mommy and Emma time. We watch it together...cheer on our favorites...enjoy the talk of the game...and hold onto a shared moment each week. What started out as simply another reality TV show for me that I enjoyed watching....has turned into an hour a week that I get to share with my daughter. An hour away from diabetes. An hour away from the day to day stresses. Just an hour a week that is guaranteed time for her and I to sit on the couch together and just be together.
We had been talking about tonight's episode all week...looking forward to it...discussing who we thought would win in the end. As time rolled around and we expected it to begin, we were disappointed to find out it was delayed....first because of a prior football game......and then due to the President speaking at the memorial service for the tragedy that occured in Connecticut.
As a parent of an 8 yr old, I decided to turn the channel. I did not want to have my daughter watch the speech. I don't know if that was the right decision or not....but it was the decision I made.
I went on Facebook and decided to check out the Survivor page on there to see what time the finale was due to begin so I would know when to turn the channel back on. What I saw at that point was disheartening to say the least. I read comment after comment from people....Americans, Canadians, people all over the world. The overwhelming majority of the comments were people complaining about the President being on....complaining about their tv show being delayed...complaining. Some stating how they didn't want to see Obama on the screen...the election was over...what was he trying to prove by speaking there. Some stating how they didn't give a shit about what happened in Connecticut...they just wanted to see their tv show. Some stating that it didn't happen to their kids...it didn't happen in their town...it didn't affect them personally...so who cares...just put Survivor on. Some stating that they were Canadian and it wasn't THEIR President on the screen...it wasn't THEIR country that was affected by this devastating occurance....so just put Survivor on for the Canadians at least. Some stating that they were so sick of seeing this tragedy plastered all over the news...all over the tv channels...all over the internet....enough already...just get on with things.
To read those comments felt like a knife through my heart. To read the hateful...selfish...mean spirited words that people wrote....ahhh it was probably one of the most disappointing things I have seen in a long time. To know that the majority of these people cared more about seeing the finale of a reality tv show...and whether or not they were going to miss the beginning of it...and how they would have to DVR it and watch it tomorrow........as opposed to having enough compassion...enough respect...enough human decency to be patient...let this speech occur...let these families of the victims heal...let the WORLD heal..........honestly, it made me want to vomit. To know that the overwhelming majority of these people thought these things...and are obviously incapable of seeing past the end of their nose......it made me fear the future that my daughter is destined to grow up in. I found it sickening.
I hope that what I saw and what I read was not how the rest of the world felt. I hope that this was just a group of selfish...mean...heartless individuals. I hope that everyone else cares enough to teach their children to have compassion. I hope that everyone else cares enough about each other to see that a reality tv show pales in comparison to the tragic realities of the world. I hope.
I witnessed an ugly display of human behaviour tonight....and I hope that people can take a moment to look outside of their living rooms and see that if we don't start caring for one another and having compassion...that the world will never change...it will only become worse.

Friday, December 14, 2012

My safe naive bubble

For the most part, I go about my day....fairly naive to the atrocities in the world. I function quite well in my little bubble. I have faith in those around me. I trust them. I believe that deep down everyone is good and everyone has good intentions. In my little bubble, no one would ever think of harming another. We all go about our days, smiling at each other as we pass by....helping each other by holding the coffee shop door open...saying thank you to the mailman. In my bubble, the world and everyone in it is good.
I know it's ridiculous to think this. I know it is not the case. I know there are more bad guys out there in the world than I am aware of. I know this to be true. I know there are tragic events that occur all the time. I know there are malicious individuals that have nothing but evil thoughts racing through their fevered minds. I'm not an idiot....I know this is the case.
After hearing of the tragedy that occured today, I cried. I cried for those parents....those families...I cried for those poor frightened innocent children. I cried. My tears will not bring them back. My tears will not ease their families pain. My tears will not accomplish anything productive. It was a natural reaction to a devastating occurance.
I am an American. I do not like guns. I am not in favor of guns nor will I ever be in favor of guns. I think it is absurd that any lunatic off the street can own a gun. Guns were designed to kill. Period. I may not be in the majority in my beliefs on this....but honestly I don't care about the majority. It is my opinion....and as an American, I am entitled to my opinion and I have the right to share it.
As 3:00 rolled around, I found myself standing on the playground at my daughter's school. I saw clusters of parents huddled together talking. I heard snippits of their conversations....guns...babies killed...travesty. I found myself looking around the playground and being leary....nervous...of the lone man standing and waiting. I stared at him....feeling a nervousness in my stomach...staring at his face trying to recall if I had seen him before. I was judging him.....judging him because of what occured today. I hate that I did that. I was ashamed of myself when I saw a child come running out of the school as the bell rang and ran towards this man...arms wide...ready to hug. I was ashamed of myself for judging him and saddened by the reality of the world around me.
I am afraid for the future world my daughter will live in. I have the typical fears.....will she achieve her goals? Will she be happy?...........I have the diabetes fears....will she live long enough to achieve her goals? Will she have complications? Will she struggle for the rest of her life or will a cure come?............and I have heartwrenching fears.......will a tragedy like today happen to her?
Will I spend my days peering out from my little bubble now.....cautiously peering....scanning the world around us for danger....fear...REAL fear? Will I spend my days always on the lookout for psychopaths carrying guns?
Or will I forget....as time passes....will I forget and revert back in to my bubble....and let the naive thoughts and feelings of goodness take over again?
I don't know. Time is a frightening thing. Time numbs us. The passing of time is a relative thing. Time will never hold the same meaning for those parents that lost their babies today. They were robbed of time this morning. A man with a gun took that from them today.
At the very base of it all.......I will never (nor would I want to) change the minds of those that are pro-gun. I will never (nor would I want to) try to make them think like me. The only thing I can do in the midst of the madness and fear and anger and devastation and heartache............is hold my child....teach her that there is no greater thing than love.....teach her that having compassion for others is ideal........teach her that acceptance is key.........teach her that while not everyone in the world is good, there is still good in the world. It's all I can do. Teach her...and hope.

Sunday, December 9, 2012

My secret for those that are new

In our 4+ years of dealing with diabetes, I have had the honour of meeting so many other people also affected by this disease. Some who have been doing this a lot longer than us. Some who are brand new. Every single person that I have encountered has taught me something. I think that is a pretty amazing thing. If I were to spend my days walking around thinking that I knew all there was to know about diabetes....I would be asking for nothing but trouble. If I were to keep my blinders up and avoid those new interactions and new experiences and new conversations, I would be missing out on appreciating my past and how far we have come. It's all a matter of perspective I suppose.

Whenever I get the chance to speak with parents who have been doing this for more years than I can even fathom, I find myself looking at them with a sort of awe...an admiring respect. I find myself asking them questions about how they handled certain situations, how they feel now, how they have been able to maintain their sanity and still focus on giving their kid a healthy normal life all at the same time.

Whenever I meet newly diagnosed families, my heart hurts. I am immediately transported back to those first few weeks of Emma's diagnosis. I can feel the same pain...I can feel the disbelief...the worry...the fear...the complete and total overwhelmingness of it all. It hurts. I hate going back to that place in my head. There are times where I just feel like I have to step away and not let myself go there. I feel like I have to protect myself and shove that pain back down...way down...bury it and hide it from myself, just so I don't have to feel it again. However, I look in their eyes....or I read their words...their cries for help...their despair...and I can't bury it. I can't shove it down. I can't hide it from myself.....because if I did...I wouldn't be helping. It feels like I would be turning my back on them...and myself really. I learn from the newly diagnosed families as well. I learn by helping them and offering my support, that I am in fact strengthening my own family. By listening to them, offering whatever help I can....I am learning how to appreciate how far we have come. I see those days where I fell down...flat on my face...defeated...discouraged. I see those days where it felt like the tears would never stop falling from my eyes. I see those days where I thought my heart was ripped from my chest. I see those days where I was so overwhelmed with the insanity of it all....that I thought there was no point in even trying to win.

I see those days where I finally learned that it's not about "winning"....or "losing"....but it is about the journey....it's about trying. It's about trying your best even when you feel like your best is not enough. It's about trying...even when you feel like you have absolutely nothing left inside of you to try with. It's about knowing that when you are feeling broken down...battered and bruised....that you must pick yourself up, dust yourself off, lean on a friend when you have to, and take another step. It's about having the courage and the belief in yourself to just....keep...moving. It's about learning...and trying...and giving every last ounce of yourself...because when all is said and done...that's really all we can do.

To all of those newly diagnosed families out there, I am going to let you in on a little secret. Are you ready? Listen carefully....and believe this with all of your heart...because it's true.

You will make mistakes. You will. We all do. There is not a Mom or Dad out there that is a perfect pancreas for their child. You will make mistakes...so do not beat yourself up for doing so. Instead, be PROUD of yourself for making them. (i know...i know...WHAT? seriously?).....YES....be proud of yourself for every single mistake you make...little or big....because they have all taught you something....they have all made you a better D-Mom or D-Dad. Don't let the fear win. Your fear does NOT deserve the time or the energy. Trust yourself. Believe in yourself. Know that you are the best person in the world for this job of being your child's pancreas. There is no one on the planet that could do it better. YOU are the one....and YOU can do it. Believe that.

Believe it and just keep trying.

Saturday, December 8, 2012

I am not like you....not even close

Sometimes when i am in a group of people, out in public, I feel alone. Sometimes when i am with friends who are also parents, i feel like i can't relate. Sometimes when I am sitting on the floor in the hallway at gymnastics class, and I hear other parents talking about their children....how they are exhausted from being up all night because their little one was coughing....it makes me feel like crying. Sometimes when i hear them complain about how they feel judged by their child's teacher on the foods they send to school with them, it makes me want to laugh. I want to stand up and say, "really?? you feel judged?...huh...." Sometimes when i sit here on the cold tile floor, and I hear all of this chatter going on around me....all of this normal chatter....all of the things that I would probably be talking about too if diabetes wasn't in our lives...all of life's mundane typical problems....i feel like i could just close my eyes...and fade away into nothing...and no one would even notice. Sometimes I feel jealous. Sometimes i feel a red hot firey jealousy burning in my gut as I stare at the floor....thinking why me....why us...why not them? Sometimes i look at their kids....their kids who look just like my kid on the outside...aside from the fact that mine has a pretty pink pump resting in her pretty pink heart pump pouch around her waist....they look the same. Except my kid has a vital organ in her body that attacked itself and killed off the things that make it possible for it to do its job. MY kid has an enormous amount of weight to carry around all day....my kid has to think twice before putting any food or drink in her mouth. MY kid has to push some buttons on her pump in order to eat or drink anything. MY kid has to do the job of her pancreas. MY kid....not theirs. I get jealous and i hate being jealous.
Sometimes I feel guilty for having these thoughts. How could I wish that diabetes had affected someone elses child and not mine? I feel horrible for having that thought....i do...because i don't wish this disease on anyone...its a life of insanity really. Sometimes i feel like a horrble human being for having this bad thoughts.....but i cant help it....they are thoughts that run through my head sometimes....even after 4 years.
And before you think to yourself, it could be worse Amy...stop feeling sorry for yourself...stop complaining...it could be worse! Your child could have been diagnosed with cancer....your child could have died! Count your blessings! Everyone has their own cross to carry! Before you say those things to me........stop.....because i have heard them all......and I KNOW you are right...it could be worse....i KNOW this. That fact does not make these thoughts leave my head or the jealousy leave my heart in moments of weakness. I KNOW it could be worse. Because of insulin....i can keep my child alive. Because of her pump....she can have a lot of her freedom back. Because we are able to count carbs and do the math and enter info and guess and try and learn......she is alive.
Diabetes is NOT easy though....and telling me that it could be worse does not make it any better. My child could still die........at any point during the day or night....she could die. I could make a mistake counting...she could make a mistake pushing buttons on her pump....her pump could malfunction.....and she could die. She could silently slip away from me in the night from a severe low blood sugar that i didnt catch because sleep overtook me and i couldnt fight to keep my eyes open anymore.....and i could awaken in the morning to find her dead.
She could DIE....at any given moment...on any given day....for any given reason....she could DIE.
Diabetes is not easy. It's not something that will ever be easy. It will never get to a point where she will have stable consistant numbers all day everyday. It just won't. It's the nature of the beast.
So, I am allowed my moment of jealousy...my moment of hatred...my moment of weakness...my moment of pity. I am allowed to feel the feelings that i feel. I do not want your comfort or your consoling. I simply want to let my feelings out into the air around me so they will stop clouding my mind, my heart, and my spirit.

Thursday, December 6, 2012

I AM doing this

So i've thought about it for what feels like years. I've come up with excuse after excuse to not do it. I am a pretty good arguer too...wait is that a word?...arguer?...whatever, it is now. Anyway, I would convince myself with excuses...there's not enough time, there's too much going on, it's too hard, you don't get enough sleep...wouldnt you rather spend your free time napping? I can't...I'm ok...I'm still young...I don't need to worry about that stuff yet.
Well, 3 days ago....I finally was able to shut up that nagging arguer. I shut her up and I did it. I went out and bought a workout DVD....Jillian Michaels Extreme Shed to Shred...to be exact.....and I started to work out. I made a promise to myself to do this every weekday. I will give myself weekends off...but every weekday, I will be sweating my booty off and cursing at Jillian through the TV.
I decided that through all of this stress and this insanity that comes with parenting a child with diabetes...I often forget about myself. I forget about making sure I eat right...about making sure I am healthy...hell, sometimes I even forget if I have put deodorant on in the morning! I need to think about me for a change. It's time. How can I expect to be a good pancreas to my daughter, if I am not healhty? How can I expect to be a good Mom to my daughter, if I am not healthy? I can't....it's impossible. So, I am doing this. I am taking baby steps and trying to think of me. Yes, it hurts...yes I am still hating every minute of the pain and the sweat...yes, i almost cried yesterday when I went to the drive thru bank machine and had to reach out the window to put my card in...because the stretching of my arm hurt so much. But, I am doing this. I am and there is nothing....absolutely nothing that will stop me.
Through my aching muscles, I have learned something. I have learned that I CAN do this...I CAN shut up that nagging voice in my head that has a million excuses not to. I CAN do this and I AM doing this. The reason why?.....BECAUSE I am a D-Mom. I have endured an unbelievable amount of stress and strain and worry and anger and obstacles and ignorance and exhaustion and pain because of diabetes. I have endured it.....

and I'm still here.

I can do this. I will do this. I AM doing this.

The world on a pin

It's like trying to balance the entire world on the end of a pin
a razor sharp gleaming pin
flashing across your vision
threatening to pierce all that you know...all that you are...all that you love
deflating the mere existence of your surroundings
air rushing out past your face
with the stench of defeat filling your nose
leaving you breathless and somehow longing for more
teetering on that miniscule edge
struggling to find that balance
that magical point where everything seems to fit
where everything seems solid...and there
will you ever find that point?
will you ever stumble across it and finally be able to
breathe again?
or will you be trapped in a never ending side show...
stuck trying to juggle your chainsaws and feathers
as you stare at the moonlight shining off your pin
and watch your world roll off into the darkness?

Monday, December 3, 2012

The secret lies within carrots!!

Let's talk carrots, shall we?
When I was a little girl back in the olden days....you know...the days of the cool wood panel sided table top PacMan game in the local Pizza Hut, the stirrup pants lovin...banana clip wearing...jelly bracelet stylin...holdin hands on the roller rink while "Take My Breath Away" blasted from the speakers? Yea, I'm an 80's child.
Anyhoo, back when I was a little girl, my Mom always told me that carrots were good for my eye sight. I believed her wholeheartedly...I mean why would I doubt?....she's my Mom. I would stand at the garbage bin and peel carrots like nobody's business...sprinkle salt on it...and crunch away...fully imagining my eyes gaining strength and my vision rivaling that of Superman with each bite.
Fast forward 27 years....I have awful vision...I wear glasses all day every day...without them I would probably spend the majority of my time walking into walls and mistaking strangers for my friends and family. So, either I am some sort of anomaly....or my mother lied to me just so I would eat all the carrots on my dinner plate. The jury is still out on that one.
Rewind 4 1/2 years....the day of Emma's diagnosis. We were sitting in that little hospital room trying to absorb what the doctor just told us...our daughter has type 1 diabetes. I struggled to maintain some sort of grip on reality as I watched my then 4 year old daughter play with the bubble wrap covering the floor...the bubble wrap that the receptionist laid out for her to play with and jump on while we waited in that little room. I watched her and tried to figure out how in the heck I was going to explain to her what had happened...what would now be our life....her life...until a cure was found. I tried to pull the right words out of my head to make my 4 year old daughter understand...to make it not sting so much to know that she would have to have multiple needles every single day...multiple needles jabbed into her tiny little perfectly unblemished fingertips. I struggled knowing that she was so young...how much would she really understand...would she even know what i was talking about...did I even know what I was talking about? I pulled her into my lap and I did what I usually do....I opened my mouth and let the words flow straight from my heart. I told her that she has diabetes now....but it would be ok....all it meant was that we had to pay close attention to her body and what she eats now more so than ever. I told her about the needles of course...and she cried of course...and I tried to lighten the mood of course...and I tried to fix it of course. Naively and ignorantly on my part because we had yet gone to meet the dietician at that point, I told her that it meant we would just have to eat better foods....like carrots.
Damn those carrots.
I told her that we would have more snacks that were good for our bodies....snacks like carrots.
For whatever reason, carrots seem to effect my life in the weirdest way. How wonderful would it be to have carrots be somehow remotely related to a cure for diabetes.......I can see the headlines now......Cure for diabetes discovered!! Secret lies within carrots!!........I would definitely forgive carrots for letting me down on the good vision thing if that was the case.

The fine art of guessing

It's kind of funny how diabetes will show it's ugly face when I am not ready for it. Not funny "ha ha"...but funny...weird. I took Emma to a birthday party for her friend this afternoon. It was at the movie theater actually and we got to see "Rise of the Guardians." (very good movie, by the way!)
Before the movie started, the group of girls were all standing huddled together near the snack counter. The theater employee was writing down all of the orders that the girls wanted so she could gather everything up for them in time. I stood there off to the side, smiling at their giggling and little girl chatter. It makes me happy to see Emma with her friends. It makes me happy to see her in a situation that is a normal kid situation. Sometimes it catches me off guard really...I forget that diabetes is always along for the ride. I know that must sound odd...how could I forget that diabetes is there? I honestly don't know. It's been over 4 years though...and I think that I work so hard at making sure she gets to live a typical kid life...that sometimes I forget that diabetes is there.
So, the theater employee asked the girls to raise their hand if they wanted a slushie to drink during the movie. Every girl's hand shot straight into the air..........including Emma's. Every girl shouted "me! me! me!"....including Emma. I don't usually buy Emma regular slushies because there are actually Crystal Light versions of them out at the store that are MUCH less carbs and thus a whole lot easier to manage blood sugars with for me. Emma actually prefers the Crystal Light version to be honest...she thinks they taste better. SO, I have zero experience in regular slushies...zero experience in knowing how many carbs are in them...zero experience in knowing how they will affect Emma in particular. So, needless to say...when I saw her hand in the air like that....it almost made me cry. Diabetes showed it's ugly face. There was my daughter, with a group of her friends....wanting to be included and have the same things they were all having...and the only thing different is that she has diabetes....and the other girls don't. Every fiber of my being wanted her to change her mind. Every fiber of my being wanted her to say, "wait! can i have diet coke instead?" Every fiber of my being wanted to make this work. I wanted to kick diabetes to the curb and know the carb count and know how it would affect her body and bolus her accordingly and make it work. I wanted to make it work. I wanted her to have that slushie and be a kid.
So, I did the only thing I know how to do.....I guessed.
To those that don't live this diabeteic life, I want you to know what that means. I guessed on how many carbs where in that slushie. I guessed. I took into consideration the amount of activity she had, the amount she would probably be having after the movie, the fact that she was also having popcorn, what her current blood sugar was, the fact that she was going to have pizza, juice, and a cupcake, and candy afterwards. I had to take into consideration the fact that it was rainy and dreary out, that she didnt have an overly active weekend beforehand because gymnastics class doesnt start until next weekend. I had to take into consideration the fact that she wasn't going to be sitting near me in the darkened theater. There would be many kids sitting in between us. I had to think about whether or not she would feel a low blood sugar while in that darkened theater...whether she would get up and tell me. There are a million things that I had to think about in that moment of time. I considered them all in a matter of seconds...
and I guessed.
The magnitude of the pressure put on my ability at guessing is unreal. My guess could in all honesty be a life or death decision. I guess all the time. I play my own warped diabetes version of Russian Roulette with my daughter. It's a sad fact.....but it is just that...a fact.
My shoulders sometimes slump from the weight of that pressure....but I still do it...because I have to...I don't have a choice.
So, I guessed today.....and I guessed wrong....I should have given her more insulin than I did...but now I know...and the great thing about diabetes is....we get to try all over again tomorrow.

FYI, she enjoyed every...last....drop....of that slushie.

Saturday, December 1, 2012

A 2:00am moment of weakness


Sometimes I feel like I am stuck in a timewarp. Stuck being someone that I don't want to be. Stuck being someone that I have been forced to be.
Sometimes I feel like I lost myself along the way and I am this new...different...version of myself. I miss that old me. I want to turn back and search the path for her. I want a chance to be her again. I want a chance to be her for just one more day.
Sometimes I feel like I am stuck in this never ending continuous loop of life. A life that I didn't choose...but a life that a series of events and choices that I did make have led me to. I wish I could slam my palms down on the table and make the spinning stop.
Sometimes I feel like I don't make sense. I feel like I don't make sense even to myself. I feel like if I were to even try to begin to explain the fire behind my eyes and the words that do manage to escape...that no one will get it anyway so whats the point...why bother.
Sometimes I feel like I give and give and give and one of these days that I am going to run out of myself.
I miss the old me. I wish I could be her again...see her eyes again...see the innocent spark...the naive light that resides within. Sometimes....just sometimes...even after all of these years...I wish that I could wake up one morning and see that this was all a dream...a nightmare...it didnt really happen...we didnt really live it...
Sometimes I feel like if I don't put on this happy smiley face for people that I will be letting them down. I feel like if I dont remain positive for them that I will let them down. I feel like if I don't do everything in my power to boost their confidence...make them feel like they can do this too...that I will be failing.
I'm not necessarily afraid of failing....but more so afraid of failing because i didn't try hard enough.
Sometimes I wish it could just be a little easier...a little more quiet inside my head...a little more sane.
I miss my innocent sanity.
I miss moments of not caring...moments where I didn't think about anything in particular...moments of quiet.
Sometimes I miss the old me a lot.

Monday, November 26, 2012

Epic Role Reversal

It's the little things that really make you take notice. It's the little things that matter. It's the little things that prove to you that the big picture is really taking shape. It's the little things.
I've been so busy lately that I haven't had much spare time for anything...including making sure that I eat meals. I know...it sounds so stupid and I feel so stupid for even saying something like that. I know whenever I heard people say things like that, I always thought...really?....how could you seriously not find time in your day to just grab a quick sandwich or a bowl of soup....yogurt...a banana..something? Well, I get it now. I get how that special kind of busy feels where you literally have NO time to eat.
Well, for those of you that aren't in the know...I actually have hypoglycemia. I did the 'ol blood test...drank the disgusting drink...the whole deal...and was "officially" diagnosed as hypoglycemic. SO, that means I am supposed to eat several small meals throughout the day to avoid low blood sugars. I'm supposed to focus on the protein, the starches...basically the same foods I would give my own kid to keep her blood sugar at a steady number over night.
Well, I'm not always the greatest at remembering to take care of me. I'm not the best at focusing enough energy doing things to keep myself healthy. As a Mom, it's hard to do.....as a D-Mom, even harder. We spend our days so focused on keeping our kids healthy and their blood sugars in check, that we often times forget about ourselves.

Get to the point about the little things mattering the most already, Amy? Right?

Ok, well this weekend I had eaten breakfast...been too busy to eat lunch...and found myself laying on the couch mid afternoon, unable to have a clear thought, feeling like my head was full of mud, black spots dancing across my vision, my stomach nauseous, the room spinning, whole body shaking, arms and legs and fingers and toes feeling that old familiar tingling sensation I get when I am low. I hate that feeling. It's gross. That is the only word I can think of to describe it....gross. Well, Emma is familiar with low blood sugars. She knows what they feel like obviously and she knows what I look like when I am low. She saw me laying there....walked into the kitchen and grabbed a juice and ritz crackers with cheese. She handed it to me. She even opened up the straw on the juice box and popped it in the box for me. She did this all of her own free will. She saw the low. She reacted. She fixed it. She knows. She gets it because she has lived it and has learned it. She saved me.

Talk about your epic role reversal, eh?

It's the big things....that are really in disguise as the little things. That's what matters.

Just a reminder...she still has diabetes

Sometimes things happen that remind me of just HOW little my daughter's pancreas does. You would think that I would be well aware of this fact seeing as how we are well into our fourth year of living with diabetes. I know it doesn't work. I know she has diabetes. I know that the only thing keeping her alive every day is a combination of her insulin pump, the insulin inside of it, me, and her. I know this...and yet, when normal every day occurances happen...and diabetes decides to rear it's ugly head.....it feels like a slap across my cheek...reminding me.
This weekend Emma held her 5th Annual Hot Chocolate Sale Fundraiser for JDRF. We had a great time, met lots of new people living with this disease, were embraced with support from family and friends, and raised about $1300 while we were out there. During a lull in the event, Emma decided she wanted to eat one of the yummy looking cupcakes that a friend of mine had made for us to sell. I told her the carb count and had complete faith in her bolusing herself before eating it. I mean why would I not? She boluses herself every single day at school as well as many times at home when I am too busy to do it for her. We continued on with our day, both of us distracted with spreading D-awareness, raising money, and having fun.
Afterwards, we arrived home and I had Emma check her blood sugar before dinner.....she was 28.5. For those of you not in the know, normal blood sugar range is supposed to be between 4.0-7.0. So, that gives you a little perspective into what was going on. Emma had forgotten to bolus for her delicious cupcake. She forgot. I forgot to double check with her that she did it. It was a mistake. Mistakes happen. That wasn't the issue I had with things.
The issue I had with things was the 28.5 screaming at me from the meter screen felt like a slap across my cheek. It hurt. It was a huge reminder that she has diabetes. A HUGE reminder that she can't just eat something as simple and innocent as a cupcake without taking insulin for it. A HUGE reminder that she is different than other kids. A HUGE reminder that her pancreas does...not...work. A HUGE reminder that YES this is OUR LIFE. A HUGE reminder that we are not perfect pancreases. A HUGE reminder. I could hear the word "diabetes" SHOUTING in my head in perfect sync with my pounding heart.
DIABETES DIABETES DIABETES! YOUR DAUGHTER HAS DIABETES! IT'S STILL HERE! IT HASN'T GONE AWAY!! IT'S STILL HERE!! HER PANCREAS DOESN'T WORK AND IT NEVER WILL AGAIN! YOUR BEST HOPE TO END THIS MADNESS IS A CURE! DIABETES DIABETES DIABETES!!!! SHE HAS DIABETES!!!!
That friggin 28.5 hurt. I could feel the slap and it stung.
I hate those reminders. I also find it bizarre that it almost feels like I trick myself every day and pretend like this is normal...what we do is normal. It's all normal and I have my shit together and i got this...i got this and i am ok and i don't get sad and i don't dwell on the negative and i make her life normal and regular and just like everyone elses. I fool myself every single day. I'm pretty gullible apparently...because when reminders like that forgotten bolus resulting in a 28.5 occur....it hurts.
I wonder if it will always be like this. I wonder if 10 years from now I will still feel that sting...or if I will become numb to that too.

Tuesday, November 20, 2012

How do you teach perfection

Something occured to me the other day that I thought I would share. I spend a lot of my time trying to teach Emma about her diabetes and show her all the various aspects and minute little intricacies that come with managing this disease. It's a lot. I haven't dumped it all on her at once, like it was dumped on me all at once the day she was diagnosed. Over the past 4 1/2 years, I have taught her and shared things with her a little bit at a time. I've kept it age appropriate...which isn't always easy...because she is mature...and she is smart...and she is very perceptive. I've tried though to keep things in perspective for her and focus on one thing at a time until it seems like she was understanding. The thing that occured to me though is that I think I am stuck in this way of thinking that I am trying to prepare her so well and educate her so well......that she will never make a mistake.
I think that's one of my biggest fears in life.....that when she is grown (if there's not a cure yet), that she will make a fatal mistake...and I would never be able to live with myself. I would feel like a failure. I would feel like it was my lack of preparing her that caused it and that in turn it would be entirely my fault...and how would I ever be able to just keep going after that. I think I have it stuck in my head that if I just do it enough times and if I just explain it to her enough times and if I just show her and talk to her and repeat it repeat it repeat it.....that she will get it....and she will never make a mistake. I feel like I have it stuck in my head that if I just do this....then she will be a perfect pancreas. It occured to me the other day that I am completely 100% wrong in thinking that way.
There is no possible way that she could be perfect. There is nothing more perfect than a fully functioning healthy pancreas. There are pretty good replacements and pretty good stand ins for one....but nothing beats the real deal. I need to somehow come to terms with the fact that I can't prepare her enough...I can't repeat it enough...I can't prevent her mistakes. I can't make her into a perfect pancreas. I can't because she ISN'T one....she's not a pancreas anymore than I am a pancreas. She's human...and humans make mistakes. You do, I do, we all do.....there is no perfect human being on this planet. I need to somehow come to terms with that. I need to get it straight in my head that Emma WILL make mistakes. She WILL make them.....and that's ok....in fact that's a good thing. How the heck did I learn all that I have learned about diabetes?........most of the time it was from trial and error....from making mistakes. That is how we learn...that is how I learned...and that is how SHE will learn. I need to let her make mistakes and just do my best to make sure that the mistakes she will make are not so huge that they will harm her permanently. I need to focus on the big picture and just do my best to make sure that the mistakes she will inevitably make will be minor ones.
Mistakes are good. Mistakes shouldn't be thought of as bad things. I should not expect myself to be able to teach perfection...when I myself am not perfect. It's just not possible.
I'm learning...I'm trying to wrap my head around this concept...I'll get there.

Thursday, November 15, 2012

You may say...

"You may say I'm a dreamer, but I'm not the only one."
You may think I talk too much or don't say enough. You may think that I am overreacting. You may think that I am being dramatic. You may think that I make my life out to be way more difficult than it actually is. You may think that I am a whiner.  You may think that I don't have a life. You may think that I focus too much of my attention on diabetes and my kid. You may think that I am making her believe that she is defined by her diabetes. You may think that my hope will get me nowhere. You may think that it will never amount to anything other than wishful thinking. You may think that I am doing it wrong. You may think that I need to lighten up. You may think that I say the things I say and do the things I do because I want the spotlight. You may think that I do it for the attention. You may think that I am annoying. You may think that I post too much about diabetes. You may think that I do it because I have nothing better to talk about and because I let diabetes rule my life and my thoughts and every little aspect of every little thing that happens to us. You may think that I exaggerate. You may think that I don't need to check my kid as much as I do or worry about her as much as I do or stay awake all hours of the night to ensure she is safe. You may think it's not so bad...she could have it worse...she can get help if she wants it. You may think that it's easy.

But you would be wrong.

You may think that I am strong. You may think that I know what I'm doing. You may think that I have it covered and I don't need help or support or sleep or a hug or just a smile. You may think that I do the things I do and say the things I do because I am trying to make a difference. You may think that I do it to help others. You may think that I do it because I know what it feels like to be new and alone and scared and overwhelmed and sad. You may think I have it all under control. You may think that just because I smile and I joke and I laugh that I am ok. You may think that I just want to fix it. You may think that I see the sad look in a new D-Mom's eyes and I feel it....I don't just see the look....but I feel it. I feel it and it hurts and I want to fix it for them. You may think that I can do this.

Sometimes I don't feel like I can do this. Sometimes I feel like I have no idea what I am doing. Sometimes I feel like I am one step away from getting lost in the whirlwind of numbers and pumps and meters and insulin. Sometimes I feel like I have reached the top of the mountain and am standing tall and proud and singing at the top of my lungs with my arms raised high above my head in victory. Sometimes I feel indestructible. Sometimes I feel like I am in control.

Sometimes I forget that my kid has diabetes.

I do........not often....but sometimes.

One day I hope that I can forget that we had to do this at all. One day I hope that we can get off the roller coaster ride of diabetes and just sit down on the park bench and breathe. One day I just want to be able to take a deep breath......close my eyes....and breathe.

While I wait for that day, I will keep talking. I will keep sharing...the good and the bad...the reality. I will keep helping the new people. I will keep trying to fix that sad look in their eyes. I will keep doing it. Because it's all I can do. I don't have a choice. I could curl up in a corner and cover my sad tired eyes with my hands and be afraid of the life being lived all around me....but that's just not who I am. I can't do it. I have to be loud. I have to stand up. I have to share. It's not a choice...it's not an option....it is what it is...and it's just me.

Monday, November 12, 2012

I choose healthy and loud

I love my kid.....I really do. I love her more than hearts and stars and I have the tattoo on my leg to prove it. In 3 yr old Emma speak....loving someone more than hearts and stars is about as good as it gets.

I do have to admit though, that sometimes the non-stop questions and the non-stop talking and the non-stop energy that pours from her can get a little tiring. Maybe I just need a nap. Maybe I just need to not have to fight diabetes every single night to make sure she can sleep at night and wake up alive in the morning. Maybe I just need to buy some ear plugs.

I kid, of course......kinda. Some days her non-stop talking and questions makes me feel like I am a character on the Peanuts...sitting in the classroom right alongside Charlie Brown and his buddy Linus....listening to the droning of the teacher. Some days I hear that buzzing drone and i know she is talking to me and I know I should be paying attention because there is bound to be a question coming soon and I had better know what the back story is on this conversation before the question happens and I find myself stumbling for an answer...or giving a lame "uh-huh" reply to her. I know I should be paying attention for the simple fact alone that she is my kid and I should be the person she can count on to pay attention to what she is saying all the time. But, man.......sometimes I just can't. Sometimes I find myself drifting off to that classroom with Charlie Brown and hearing the droning buzz and just waiting for nap time. Being 8 years old is tough. I get that. I know that. I lived it and I remember it. I know there are a lot of questions running through your mind every single second of every single day. I know your mind is like a little sponge and you want to learn it all, say it all, do it all, and tell us all about it afterwards. It's all good stuff...it really is. But sometimes my poor mushy tired D-Momma brain just can't absorb any more words. Sometimes I can't find the right words myself to teach you what a pronoun is and the names of all 50 states and explain to you how come Eve ate the apple in the Garden of Eden and why condensation happens on the bathroom mirror and why Daylight Savings time has to happen and how to spell congeniality and tell you how exactly all of that information is stored on the internet and how come we can type in whatever we want and an answer pops up so quickly and why it's easier to do a front handspring if you take a running start because of the forward motion and why water spreads to the edges of the glass and away from the middle when you swirl it because of centrifugal force and how to spell centrifugal force and who the first person ever to make a movie was and how long the longest movie is and how come airplanes can fly even though they are so heavy and how heavy ARE airplanes actually.....and....and....and.......ahhhh I'm tired.

Then I have moments like last Friday when you had strep throat.....and you were quiet. You were quiet because you were sick. You didn't have any questions. You didn't have anything to chatter on about. You didn't do cartwheels in the living room or headstands on the couch. You were quiet.

and I missed it.

I missed the noise. I missed the movement. I missed the loudness.

I missed it because it is you....and I love you more than hearts and stars.

It made me realize how greatful I really am for the noise.....because the noise means that you are not ill. The noise, the chatter, the cartwheels, and the questions mean that you are healthy.........and I will choose healthy and loud anyday.

The phone call that changed my life

We all have that moment...that memory. We all know exactly where we were when we knew. We know what it felt like...how our insides felt as if they were trying to burst...our grip on sanity slipping....ever so slightly...all because of that moment.
Seeing as how it is Diabetes Awareness Month, I thought I would share my moment. I thought I would let you have a little glimpse into my world...my mind...my life....when I first found out that my daughter had type 1 diabetes.

I had actually been at a friends house when I received that life changing phone call from the doctor. After hanging up the phone, I immediately dialed my husbands number at work to tell him the news. I left the room that Emma was in because I knew that as soon as I heard my husband, Shawn’s voice on the other end of the phone, that I would not be able to hold back the tears. I didn’t want to scare Emma. I didn’t want to worry her already. So, I went downstairs and shut myself in the bathroom and called my husband. It felt like my heart was going to burst right out of my chest. It felt like my throat was closing up on me when I tried to tell him. The tears were spilling over and pouring down my cheeks. I managed to choke out the words, “I have to take Emma to the hospital…they think she has diabetes.” It was the first time that word ever fell from my lips and it left a horrible taste in my mouth…diabetes. When I hung up the phone with him, I leaned against the wall and my body felt weak. My knees gave out on me and I slid to the ground very slowly. Everything felt like it was in slow motion. I sat there on the floor of my friends bathroom feeling numb. It was like I was floating above myself. I was looking down and watching the na├»ve, carefree, and innocent version of myself. I was watching her sit there in a lump on the floor. Watching the tears fall down her cheeks and seeing each individual droplet fall like rain to the ground in front of her. In one hand she was holding the phone in a death grip as if she wanted to break it in half for being the device which delivered such horrific news. The other hand was placed across her chest as if she was trying to hold everything in…keep it all in place…keep herself whole. I saw the innocent light from within her slowly fading away…getting dimmer and smaller…until it winked out forever signifying the end of her carefree life. I saw this new version of myself stand up, furiously wipe the tears from her face, and try to control the anger and fear building inside her. I knew then that my soul was changed forever. My spirit was now completely different. Sure there were still glimpses of my former self in there, but I was now a changed person. In that split second it took for the doctor to say that one sentence, I was forever changed.

It's amazing what one moment in time can do to you.

Saturday, November 10, 2012

The art of being Muffined

I sometimes wonder how we must sound to people in the outside world....aka...the population not familiar with diabetes. There is a whole plethora of words that we use everyday and it sort of makes it seem like we really have our own language to be honest. I can't tell you how many times I have been out in stores and asked my daughter if she is high. To the outside world, that probably seems like an odd thing to be asking an 8 yr. old....but to us, it's normal. When I ask her if she is low, I'm not wondering if she is feeling down or sad...but rather if she feels like her blood sugar is low. When I ask her to check her finger, I am sure I must sound like some sort of weird Mom asking her child to see if she has been picking her nose or something gross like that. When I ask her what she is.........most people would probably think to themselves, "uhhh...she's a girl!"...but really I am looking for a blood sugar number response to that one. When my 8 year old kid shouts to me from across the aisle at the store that there are 20 carbs in a certain food she wants to get, it's not because I have made her into some sort of health nut or put her on a diet.......but rather that we need to know the carbs in every piece of food she puts into her mouth ahead of time.

I was talking with a friend on Facebook tonight...another D-Mom actually...and she had mentioned how her son was struggling with lows tonight because he had attended hockey school today. She explained that she had "juiced" "muffined" and "temp basalled" him. To read that completely made me giggle. We as D-parents have turned so many nouns into verbs. We have our own special language that makes complete and total sense to all of us..........but to the outside world, we must seem like we have a screw loose.

While I can't defend the screw loose perception very well, I can actually say that to sit down and play a game of Scrabble with a room full of D-parents would definitely prove to bring about some interesting results.

We are a unique breed of people. We have tweaked our lives, our emotions, our strengths, our abilities, and even our words....to make it work for us. We do it with style and grace and a little bit of humour thrown in for good measure. And let's be honest....who wouldn't like to be able to say they've been muffined once and a while?

Wednesday, November 7, 2012

MY tired is nothing compared to HER tired

Sometimes I get tired
Tired of the numbers. Tired of the routine. Tired of the finger pokes. Tired of the insulin...the carbs...the ratios...the basals...the needles...the blood...the site changes...tired of the whole thing. I get tired of the late nights. The early mornings. The alarms on the pump for a low battery. The fact that I have to carry around so many supplies and treats and juiceboxes with me everywhere I go. The monotony. The never endingness. The guessing. The trial and error. The fact that I have to be patient and wait for a few days to see if I can find a pattern in her blood sugar numbers. The variables. The INSANE amount of things that affect blood sugars.
Sometimes I get tired of the worry. The watching the clock. The waiting. The sick feeling that invades my body and takes over every single thought in my brain when I am battling a low blood sugar that just won't seem to come up. The frustration at high blood sugars that come out of no where....no rhyme or reason...no valid reason as to why it should have appeared on the screen of the blood sugar meter...mocking me...shouting at me.
Sometimes I get tired of the ignorance. The countless times where I have felt like a broken record explaining over and over and over again that my child did nothing to cause this disease...that yes she can eat that cookie...that yes I know you think you would never be able to stick a needle in YOUR child's body. Sometimes I get tired of the pity in your eyes when you ask me if I'm ok...if she's ok...if she's better now...if her blood sugars are more stable finally...if she will grow out of it...and even when you tell me it could be worse. Yes I know it could be worse......but knowing that does not make it any better...knowing that does not make it any easier to deal with...knowing that doesn't make me feel like I should be ok with what we have been dealt.
Sometimes I get tired of always having to fight...to stand up...to speak out...to advocate...to stand up in front of a crowd and share my story...to open up and fight off that shyness and that feeling of my blood rushing to my cheeks as the eyes are all pointed in my direction...listening to my voice...listening to me talk about our demons. Sometimes I get tired of the stigma that comes with being a D-Mom. The stigma that sometimes seems like a tattoo across my forehead....that I did this...it's my fault...I must have done something....I must be exaggerating...I must be making it seem like it's worse than it really is. Sometimes I feel guilty for being tired.

Sometimes I get tired of being tired.
Sometimes I just want to stop.
Sometimes I just want to lay my head down on my pillow and sleep.
Sometimes I get tired of it.

And then I realize that my moments of being tired are numbered. My days of having the opportunity to be not only someone else's pancreas.......but my DAUGHTER'S pancreas.......are winding down. My chance at laying the groundwork and the foundation for her to live a long and healthy happy life....is running out. Right now MY tired is nothing compared to the tired she will have to endure for the rest of her life. MY tired is but a mere blip in the grand scheme of things. MY tired has an ending. MY tired has a finish line. MY tired is not forever.
HER tired? Well......HER tired will continue on long after I am gone from this world. One day soon, MY tired will become HER tired and she will have to carry that burden and that load and that exhaustion each and every single day for the rest of her days....or until a cure is found.

MY tired is nothing compared to HER tired.

Saturday, November 3, 2012

Emma and diabetes' first sleepover

Ok, so I have clearly lost my mind and I am letting Emma go to a sleepover tonight. I am scared out of my mind because it is the first sleepover she has ever gone to...it is the first time she has ever slept somewhere without me....the first night my baby girl has slept somewhere else without me since the day she was born. I am scared. I'm scared that diabetes won't play nice. Im scared that she will go low or be too high and get ketones and im scared that something dangerous will happen. I'm scared that the Mom looking after her won't understand my instructions and something bad will happen. I'm scared. I don't think i have been this scared since the day she was diagnosed. What if I am making a mistake? what if I am jumping the gun and letting her do something that she isn't ready to do? How in the hell am I going to be able to get any rest myself tonight? The mom is going to be checking Emma at 11:30.....I set a temp basal....i will be going over there to check her myself at 2:00am....the mom will be checking her again at 6:00am and then i will be there at 8:00am to have breakfast with them and pick her up. In reality....it's only 3 hours till i go over there to check her......and then 6 hours from then till i can pick her up. Thats only 9 hours with her out of my sight.....I am friggin scared...9 hours is a lot of hours when diabetes is along for the ride. I'm scared. I hope everything will be ok. I pray everything will be ok. I want diabetes to leave her alone for the night so she can just enjoy being a kid. I want her to have this experience and get to be a kid.
She is only 8. This is the age where sleepovers begin. This is when it happens. I knew it was coming. I knew my days were numbered. I knew that I would have to reach this day soon enough. I knew it would be hard. I knew i would be scared.............and yet........nothing could have prepared me for how scared i actually am.
I hate this disease and i hate how scared it makes me. I hate that I didn't just drop my kid off at a party....i also dropped diabetes off. It's there. It's eating the pizza and the cake and playing the games. It's making crafts and it's playing Just Dance on the Wii too..........it's there......it's there..........it's always friggin there and i hate it. I hate that i couldnt just drop her off...kiss her goodbye and tell her i will see her in the morning.....i hate it. But this is our life. THIS IS OUR LIFE. There is absolutely nothing I can do about it......because diabetes invaded my family......invaded my child......and THIS IS NOW OUR LIFE.
I have learned over the past 4 1/2 years that i tend to jump into things with both feet. She was diagnosed just two months before starting kindergarten and I was terrified to send her to school..........but i did it. She asked to start on the pump when she was in 1st grade........i was terrified of the change..........but i did it. I just jump in. I rip the proverbial bandaid off and just do it even though it scares the shit out of me. So, I am seeing the irony in the fact that i am doing this. I am keeping up with my pattern of jumping in with both feet and just doing it.
Please God let her be ok tonight. Please keep her safe. Please watch over her when i am not there. Please help the other Mom understand what to do when she needs to. Please let this work. Please let her be ok. Please let her wake up to another day tomorrow and please let me see her beautiful face.
Please.
Just please......please help my heart stop pounding and please help me breathe. Please.
I just want her to get to be a kid.

Friday, November 2, 2012

My Facebook D-Day

In honour of November being Diabetes Awareness Month, yesterday I decided to update my Facebook status every time I did something diabetes related. I wanted to share a little bit about our day....not just the usual statistics and the shocking moments that will inevitably come with managing this disease.......but more so the day to day stuff...the meat of the proverbial diabetes sandwich. I wanted to share with those that do not live this life every day. I wanted to show them that even though I have gotten quite good at pretending that I am not worried and that all is ok ALL of the time.....that in reality, I do worry...I am scared when I drop my kid off at school....I am terrified to go to sleep at night for fear of what will happen inside my daughter's body while I am unconscious. There really isn't a perfect way to explain to someone how it is...how it feels.....the only way I could come up with to get my point across was to share our experiences. It was just one day in our life. One day amongst hundreds now that we have lived with this disease in our house. Just a tiny little snippet of an average day in the life of parenting a child with diabetes.
My best hope for doing this was that people would read it. I felt that as long as they read it, they would gain a little education and a little insight. I felt like maybe...just maybe....they would gain a bit of understanding....true understanding. I wanted them to see that we don't want pity. We don't want the sad faces and sad eyes. We just want understanding.
It just so happened that diabetes threw me a curveball in the morning and caused Emma to be low a couple of times. We dealt with it and moved on. It was pizza day at school. She had a playdate after school, it was cold out, she was tired from the night before from trick or treating. I shared all of the potential factors in things that affect blood sugars. I shared it all. I opened the door to my honest life....and shut off the switch on pretending...for just one day.
The response I got was overwhelming. There were many I have known since I was young who commented and thanked me for sharing and giving them a glimpse into our D-life. There were some that I see every single day that said the same. It made me feel good. It made me feel like I had accomplished something...gotten my point across.
I admit that I was a little worried that most people would just ignore my posts or even block them so they didn't have to read my continuous updates because they were annoying. I admit that after a while, they were even starting to annoy me. I was a little surprised to find myself being annoyed with them because I was the one who was writing them and sharing them! I think that it turned out to sort of be a slap in the face of d-reality for me honestly. I mean I KNOW what we do everyday. I KNOW the stress, the worry, the constant necessity of "being on". I live this life and I know what it entails....however when I wrote it all out like that....status update by status update...moment by moment...as we leaped over each hurdle diabetes put in front of is....it sort of
just....hit....me.....
THIS is what we do
THIS is how we live
THIS is a normal average day for us
The highs, the lows, and everything in between.
It's just how it is. Seeing the words written out like that.........*sigh*...........it hurt my heart.
I was saddened at how quickly we were able to accept this life as normal. I was saddened at how much we have changed in 4+ years and how what once would have been bizarre and scary.........is now our everyday lives.
It also made my heart ache....in a good way. I was amazed at how far we have come...how much more educated we are...how much more comfortable we are...how much determination we have...how nothing will stop us....not even a disease that currently has no cure.
I read my updates and was proud. Proud of myself.....but mostly proud of Emma for she is the one that is truly living it every day in this house.

Wednesday, October 31, 2012

Diabetes, Baseball, and Halloween

Sometimes I feel like being a D-Mom is sort of like being a player in the ultimate game of life or death baseball. Sometimes diabetes throws a curveball our way....or sometimes a fastball that appears to be directed right at our heads...or on a good day, sometimes it's just smooth and straight right across homeplate.

Sure, we strike out many times....we hit an easy pop fly and diabetes catches that ball in one easy stride...we step into it and hit that ball with all of our might only to grimace and realize that it's a foul...and sometimes....just sometimes...we knock that ball right out of the park.
You know the kind....a homerun...sailing over the fence...fireworks exploding in the night sky beyond the park lights...the crowd on their feet roaring in victory with us! Sometimes it happens and we get to trot around the bases soaking in the cheers and high fiving our teammates along the way.

I feel like I hit a homerun this morning. Today is Halloween and at Emma's school everyone got to wear their costumes to school. There was a dance-a-thon in the gym, treats, crafts, fun stuff for everyone. This is our 5th time celebrating Halloween with diabetes along for the ride. It's never easy to anticipate the way her blood sugars are going to react to all of the excitement and treats and activity. Sure I have 4 other Halloween's to base my assumptions off of....but you know what they say happens when you assume. So, I have learned to take it one step at a time. Not just "get through" the moments....but experience them....make memories...file them away for those days in my future where I will look back on my life and smile. I guessed this morning and gave her a little less insulin than her pump told me to give her for breakfast in anticipation of the dancing and excitement. I am a firm believer in it's better to have her run a little high on days like this at school, than to have to battle lows. I glanced at the clock at home when I knew she would be in full tilt dance mode at school. I said a little prayer for her safety. I wished for her to have fun and just be a kid....laugh with her friends...dance like a goofball...just be an 8 year old girl. I sent all my good pseudo-pancreas vibes down the road to her. I reassured myself that we can do this....she can do this...I can do this...everything will be fine.
I picked her up at lunch time and giggled to myself at how impossible it was to scan her face for signs of a low...not very easy to see if she is pale through a bunch of zombie facepaint! We got home, I checked her blood sugar...and was met with a 5.2. It doesn't get much better than that.
I had my homerun. I had my victory. I had my moment to trot around the bases and pump my fist in the air.
Sometimes diabetes wins an inning...and sometimes we do. The thing to remember is that the game continues on...there is always another chance up at bat. It's an epic game of wills and I think we all know who will come out victorious in the end. I think we all know who will wind up on the jumbo-tron with a smile the size of Texas...jersey dusty and dirty from sliding into home.

Tuesday, October 30, 2012

A story continued....hope

A while ago I wrote a poem....that turned into a story. For some reason I have been thinking about that story all day today....and I feel like there is more to it....more to say....so this is what I have been thinking of today...finding myself lost in this random world as I went about my day.


Her hair splayed out upon the grass surrounding her weary face like a glowing halo
The only sound...her own breath
constant
the rise and fall of her chest seems to center her thoughts
Off in the distance a bird chirps and the sound of it's wings is magnified
inside her head....her weary head
feathers rustling against each other
As the sun shines down from a cloudless sky,
she wonders how she got here...
how did she wind up in this place
how long has her body been floating amongst the wildflowers and weeds?
The soothing warmth of the sun's rays feels like an old familiar blanket
soft...worn through...comforting.

The old man watches this vision of hope and beauty
a pillar of strength.
He leaves his post high atop the moss covered tower
descending the stairs one careful step at a time
His gnarled and spotted hand grasping the rail to his right
sliding along beside him
creating a high pitched twinge in the atmosphere between the cold stone walls.
His bones creak and his body shakes with each foot fall.
Determination causing beads of sweat to sparkle and shine upon his forehead
settling into the deep lines of wisdom
the crevices marking the monumental experiences of his life.
His breath is even
steady
rhythmic and sure.
He reaches the open door at the bottom and marvels at the dust motes flittering by through the rays of light that shine through.
Each a tiny marker of a world unknown.
With each of his hands gripping the door frame,
the old man steps foot into the open world for the first time in centuries.
The light is blinding to his wise eyes
his pale blue ancient eyes.
With a shaking palm shielding his sight,
he spots the woman in the grass.

The woman is lost in a moment of solitude which he can not bear to disrupt.
He knows she needs it.
He knows the sun is replenishing her soul
filling her heart with light and life.
He is drawn to her and can not deny the need to hold her face in the palms of his hands.

The woman opens her eyes to a shadow blocking the sun and knows it is him.
She remembers now
remembers seeing his face across the land
high upon his tower.
Reluctantly, she leaves her place of warmth in the grass as she stands
leaving behind an impression
a summer snow angel.

The woman opens her lips to say something...
hello....
how are you...
i remember you...
something.....anything.....
she is stunned to realize there are no words.
She simply gazes up at his ancient face and marvels at the wonders that lie beneath

The old man reaches his arms out and ever so gently rests his palms against her cheeks.
The woman is surprised at the strength and the soft touch.
She is surprised to find tears falling from her eyes...
completely unaware of when they began.
Seeing a mirror image of herself in his eyes.
The old man whispers a single word....
Hope

Sunday, October 28, 2012

I like you

She laid her sleepy head upon her pillow
raised her little arms up to wrap around my neck
i felt the warmth of her breath tickle my ear
as she said, "Mommy, i like you."
my heart skipped a beat and my eyes filled with tears
for she is my life
and to hear she likes me
when all that is expected is for her to love me,
ahhh.......well.....
that is worth more to me than all the riches of the world
I squeezed her tight
feeling her smooth cheek against mine
smooth like satin
feeling strands of her freshly washed hair tickling my nose
smelling of strawberries and soap
and I relished the moment
I held her in my arms as I have countless times before
I held her and I stopped time
Thoughts of finishing the laundry
getting things ready for school tomorrow
phone call to be made
floors to be washed
all swept away with the blink of an eye
Our arms wrapped around each other
for but a moment
a ticking of the clock
a moment
a memory
that now resides inside my heart.

Saturday, October 27, 2012

Just be Amy

Since diabetes entered our lives, I have learned that my cell phone ranks pretty high up there on my list of important tools used to manage the big D. It's right alongside the insulin pump and blood sugar meter honestly. I carry it around with me everywhere..when Emma is with me and when she's not. I feel the comfort in knowing that if some sort of emergency were to happen when we are out somewhere, that I would be able to use it get her help. When she is at school or a friend's house, i clutch it in my hands everywhere I go...anticipating that call..that text to tell me that her blood sugar is low and she needs me.
Tonight, we decided to pick up something for supper and my husband and Emma both decided they didn't want to go along for the ride...so I left the house and hopped in the car on my way to grab something to eat. I made it about two streets down from my house when I realized I left the cell phone at home. I instantly felt that sick panicked feeling in my gut...my heart was pounding...I contemplated turning the car around and heading home to grab it. I felt weird...I know it must sound silly, but I felt naked. I had one of those inner arguments with myself that I have sometimes...which i have noticed usually revolve around something diabetes related. I thought, if I turn around and go home and walk in the house to get my phone....my husband could feel like I don't trust him. He might feel like I had no confidence in his abilities to be her pancreas for the mere 20 minutes I would have been gone. I thought if the situation had been reversed, I would have definitely been offended and felt like he didn't trust me. I thought that if I didn't go home to get it, I would have to swallow that sick feeling and just deal with it....just live with it...just push through the naked feeling and focus on the simple task at hand of getting supper for my family. It wouldn't be so bad. Why was I making such a big deal out of nothing? Why was I arguing with myself about something so ridiculous? It's just a phone! It's not like she was going to plummet and have a seizure in the time it would take me to return home. I mean I checked her before I left and she was at a decent number. And that's all beside the point....my husband was there! He was sitting right there next to her! Did I think he was some sort of idiot that wouldn't be able to help her if she was low?
Yes, those are just a few of the thoughts that raced through my head as I sat at the stop sign a few streets down from my house. I know what you're thinking....really, Amy? You are that OCD about a phone? Well, the secret's out....yes, yes I am that way about my phone. It has become a sort of lifeline for me....a connection that I can have with my daughter no matter the time, place, situation....it makes me feel better.
So, after a car pulled up behind me and became impatient with my stupid inner arguing and honked their horn at me to get a move on already.....I decided to just go. I turned the car....and I went. I realized I was being silly and just went about my business of getting supper.
After fate decided my path, I decided to make it worthwhile. On a normal day when Emma isn't with me, if I am in the car...I rarely turn the music up loud for fear of not hearing my phone ring if she needs me. Today, without my phone....I cranked the tunes. I turned Mumford and Sons up as loud as I wanted....I sang along with Marcus Mumford at the top of my lungs...I had my own private little concert right there in the car. It felt nice.
I've come to the conclusion that while the tools of my job are not things that I would have ever chosen to have....they still provide me with comfort. The tools I use every day comfort me as much as they do her.....but every once in a while...it's nice to just be me....to just be Amy...my hands free of these tools...just me...the air in my lungs and my favorite song on the radio. It's nice to just be Amy sometimes.

Tuesday, October 23, 2012

a1c anxiety...and machine guns?

We've all experienced a1c anxiety. We all know in our heads that it's just a number...not something that we should be beating ourselves up over. We all know it...and yet many of us still get nervous...still get upset...still feel like a failure when we don't wind up seeing a good number.
I don't know why, maybe just because it's human nature to want to see a good number...to have a good result...to feel like all of our hard work has paid off and we have a good result to prove it...like getting a gold star or an A+ on our work as a kid in school.
Emma and I will be going to her clinic appointment this afternoon...t minus 2 hours and counting actually. I think the worst part for me is that moment before the doctor actually tells you what the result is. I think I have been so conditioned to always receive bad news while sitting in that drab room in the hospital clinic, that I just expect it. I mean really...that is the room that Emma was diagnosed in. That is the room where my life changed forever. That is the room where our innocence and naive way of thinking was washed away and flushed down the randomly hidden toilet that doubles as a cabinet in there. That is the room where my life as a Mom ended and my new career as a D-Mom and pseudo pancreas began.
It's the room where my 4 year old baby climbed up onto my lap and stared into my tear filled eyes as I explained to her that we would be ok...all the while feeling the overwhelming weight on my heart convincing myself that we wouldn't be ok. I felt suffocated in that room. I felt as if the light inside me had been rudely and abruptly extinguished and I would never be able to find a way to light it again. I felt like that room would swallow me whole if I let it.
It's the room where I learned how to give an injection for the first time. It's the room where the nurse forced the insulin pen needle into my shaking hands and MADE me stab a stuffed animal with it to practice.....MADE me stab myself in the stomach with it to learn....MADE me stab my daughter after she had eaten her first meal after diagnosis.
It's the room where I laughed through my anguish as I saw the receptionist lay bubble wrap out covering the entire floor...just so my daughter could have something fun to do while she was oblivious to the fact the her entire world was changing around her. I laughed hysterically...probably with a hint of lunacy as well....as I saw her jump up and down...up and down...over and over again...across the entire room...POW POW POW POW POW POW...as each bubble on the sheet exploded. Her laughter filled the room as the people walking by out in the hall probably thought that world war 3 had begun and machine gun fire was happening in that little room.
That room holds so many memories for me....sad, depressing, full of despair....that room sometimes feels like an entity all it's own to me. Sometimes I want to go in there with buckets of paint...all of the colours of the rainbow...and just fling them at the wall....wash away the drab blue of pain....and cover it up with new rainbows....new life...new hope. I want to change the way I see that room.
So, as I sit there this afternoon....holding my breath as those few seconds pass before the doctor tells me that a1c number......I will think of that change...and hopefully it will make it a little more bearable. I will hear the echoes of Emma's laughter and the machine gun pop of the bubble wrap...and I will focus on our life as a whole....and not just this one number...this one measurement of this one moment in time. I will try....and that's all I can expect from myself...just try.

Monday, October 22, 2012

Mother's Intuition

We've all heard of "Mother's intuition" before, right? Certain random occurances that happen...things that we as Mom's know....things we feel...and there really is no logical explanation as to why they occured. I'm sure many people who haven't experienced this first hand would be skeptical and think that it's a load of malarky. I would have to say that before I became a Mom myself, I would also have fit into that category of skeptics.
In any case, I have now experienced it...I've felt it..I've heard about it and witnessed it first hand since Emma came into my life. I think the strongest moments that this intuition has occured have somehow involved diabetes. For example, last night I was sitting here on the computer...wasting away some time until I did my last blood sugar check for the night and got to lay my weary head down on my pillow and sleep. I still had about an hour or so to go before it was technically "time" to check her. I got this feeling in my stomach that wouldn't go away. It started in my stomach and I tried to ignore it...tried to keep doing what I was doing...wasting time. The tingling sensation started to travel up my chest and flow out my arms all the way to my fingertips. The best way I can describe it is sort of like that feeling you get when you are riding a roller coaster and your arms are high above your head waving like mad in the air...the wind rushing past them...feeling weightless...tingling. I felt like something was wrong...something was off. I felt this sense of urgency start to take over my body which made no sense to me because...like I said, I was simply sitting there on the computer wasting time. I felt like if I didn't get up and move, that something bad would happen...so ignoring it would do no good. I stood up and all I could think of was Emma...I know it may seem like Emma is really all that is ever on my mind...but in reality, that's not the case. She is there a lot of the time, but I do have a life outside of Emma land. Anyway, I couldn't stop thinking of her and feeling that panic rise to the surface....that urgent tingling panic. I could feel my heart begin to pound...a cold sweat take over my body...that sick ball of fear growing with each passing second in my stomach. You would think that after nearly 9 years of being a Mom...4 1/2 of them a D-Mom, that I would know instantly what this feeling meant and I would react immediately and listen to my body and do what is needed to be done......but apparently at 12:30am, the ignorant portion of my brain has taken over. I stood there having an inner argument with myself....do I check her? do I wait until the "normal" time? what if she's low and I don't check her and something happens? I would never be able to live with myself. what if I am just a lunatic and am imagining this whole feeling? why am I still standing here arguing with myself....just go check her so you will KNOW! Yea, I never claimed to be brilliant at that hour...let alone ANY hour of the day....years of sleep deprivation will do that to you.
So, I grabbed my tools of the trade...blood sugar meter, lancet, flashlight held in my mouth between my clenched teeth...and I went upstairs to her room to check her.
She was low.
Who knows how much further she would have dropped if I had ignored that feeling...that mother's intuition...and just waited that hour to check her at the "normal" time I do every night.
She was low....and I only caught it and was able to save her....because I listened (eventually) to my intuition.
We as Mom's carry our children around inside of ourselves for 9 months....their heart began to beat inside us...that is a miracle in the truest sense of the word. Why would we ever think that a bond like that would or could ever be broken simply because they are now grown and filling their own space in this world? That bond is forever. That intuition is forever. What a beautiful thing.

Friday, October 19, 2012

Is this normal?

So I went out for breakfast this morning with a fellow D-Mom...a good friend...a sister in this life. She gets me. I get her. It's easy....and I am greatful for that ease and that comfort and that same same. As we sat there eating bacon and chatting away about things, it occured to me how strange this life really is. We go out about our day feeling exhausted, feeling stressed, worried...it's always there...always in the back of our minds that at any gven moment the phone could ring and it could be our child's school on the other end telling us that our child is low....passed out...en route to the hospital. We live in that bubble of the constant threat of danger. Sure, we put on our happy faces and we pretend like nothing is wrong...we pretend like we got this...we can do it...we are fine! We pretend like we aren't tired and we aren't scared and we are absolutely perfectly ok.
For the most part, people believe us. For the most part, "the others".....aka...those that have not walked a day in the shoes of a parent of a diabetic child....they buy our facade...they believe our smiles and our reassurances....and our bold faced lies that we are ok...everything is ok. I don't know why we do it really. I don't know why we feel like we have to pretend to the others. Some of us even try to pretend to each other. Maybe it's because we want to seem like we are strong? Like we are capable? Maybe we act this way because we don't want to portray this image of weakness to others? Maybe we are just tired of the pity....tired of the sad eyes and the "oh I don't know how you do it! I could NEVER give my kid needles everyday!" that happened all the time in the beginning? I don't really know why we do it.
I think it is rather strange too how quickly we adapt to this life....how quickly we make it our new normal...how we accept the fact that feeling exhaustion on a daily basis is just a normal thing now. We have embraced that fear and that worry and have gotten so used to it that we don't even realize that it ISN'T normal to feel that way. It isn't normal to be this tired all of the time. It isn't normal to walk through the grocery store and find yourself standing there staring at a shelf of spaghetti noodles realizing that half your mind...half of your thoughts are somewhere down the road back at your child's school...thinking to yourself...I wonder if that lunch bolus was too much....is her basal rate to high?....she has gym coming up soon...I hope she will feel a low if it happens and remember to tell someone....does she have enough test strips in her kit at school still...only 3 more hours until I get to see her again and know that she is ok......ok what was I doing again?...RIGHT...pasta!! It is so strange to think that the way we walk around every day now FEELS normal to us because we are so used to it now......but in reality, it's NOT normal...and if one of "the others" ever had the chance to walk a day in our shoes, they would think we are mad....and not the "angry" kind of mad, if you catch my drift.
There are some that I have noticed see through the facade though. Some that stare just a little too long at your face...studying your tired eyes...knowing that they see something "off"....and yet not quite able to put a finger on what it is. There are also some D-Mom's I have met...like my friend from this morning...that just know....she just knows without me even saying a word...so there is no point in even trying to hide it. I find comfort in that. I find peace in that and it makes it a little easier to go about my day feeling the new normal that isn't so "new" to me anymore.

Wednesday, October 17, 2012

My Kaleidoscope

I remember sitting in my room as a kid and holding a kaleidoscope up to my eye...squinting through that tiny little hole in the end...pointing it towards the light on the ceiling. I remember marveling at the beautiful shapes and colours that appeared as I twisted and turned the end of it...wondering how in the world it worked. How did the people who made it manage to get all of those shapes and colourful objects inside the end of the tube? I loved how each shape moved into the next one with the simple fluid motion of my hand.
Sometimes when I find myself lost in this life....worried about things that I can not control...things that I can not change...things that truly don't matter.....I think about that sunny afternoon in my room. I think about how warm the sun felt on my skin as it shined through the window next to my bed....my pink canopy princess bed. I think about my soft blanket and pillow...my most special stuffed animals that had the honour of sitting on the bed instead of being put away with the other toys. I think about my white dresser with all of my little trinkets on it...all of the little shiny things that are special to a little girl. I think about how quiet it was....how serene and quiet.
As an adult, I've learned that sometimes we don't have all the answers. Sometimes we really have absolutely no idea what we are doing. Sometimes we get it right and sometimes we don't. The real fight...the real challenge...the real test of our character...is what we do with the obstacle that lies in front of us. Do we sit there staring at the problem getting upset and thinking woah is me? Or do we turn the end of that kaleidoscope and change our focus...force ourselves to look at the problem from another angle...another perspective? Do we let ourselves get trapped in that one scene...that one mind-boggling issue? Our eyes zeroing in on the hard lines and the sharp angles of that problem. Or do we adjust....with the slightest movement...a mere twitch of our focus...and see that those lines and angles aren't so hard...and they aren't so sharp?
Sometimes it is definitely easier said than done to keep things fluid. Sometimes it feels like even attempting that motion and that change would take the strength of a thousand Rocky Balboa's. Sometimes it feels like it would just be easier...safer...more familiar to just continue to look at the same picture. Sometimes those colours and shapes we have been staring at for what seems like forever bring us a feeling of normalcy....and that is ok too. Everyone deserves that moment of ease. Everyone deserves that comfort. However, we need to remember to take that chance and make that shift...keep things moving....because who knows what we could accomplish and what problem we could solve if we made that slight shift. The possibilities are endless and the beauty of a new design and a new picture spread out across our vision is guaranteed.

Monday, October 15, 2012

The Fog of Monotony

Do you ever feel like you are just going through the motions? Like you are just on auto-pilot...waking up in the morning feeling the exact same way you felt the day before...doing the exact same things you did...one foot in front of the other...same thing...never ending...trapped in a continuous loop of mundane monotony? Do you ever feel like you have reached that point where you are losing sight of the big picture and seem to be stuck....in a rut....of just "getting by"?
Yea, me too....
Sometimes I find myself checking Emma's blood sugar at night and seeing a number that isn't so good....knowing in my head that I should be sighing and trudging downstairs to get juice to fix it....knowing I should be feeling this sense of urgency and this panic...and yet, I feel nothing. I stare at that number and it is just a number....just one more number in the millions of numbers I have seen on that little screen...one more number that needs to be different...one more number that needs to be fixed...one more number that I can add to the list. Sometimes i find myself having gone the whole day while she is at school without having said a single word. I am stuck in that land of knowing that I have to get things done....and yet I don't want to...I just want to take care of myself for once and curl up on the couch and forget that I even know what the word diabetes means.
I must sound like the world's most selfish person saying that....and now I feel bad for even thinking it....but it's true. I'm not perfect...I have flaws. Sometimes I just want to sit down and do nothing. Sometimes I can feel myself slipping over that edge....knowing that if I let go, I will be stuck in that rut forever....not wanting to be stuck...not wanting to have to find my way back out again...but still having that threatening presence there looming over me nonetheless. Sometimes I'm just tired. Tired enough that I don't want to fight anymore...I don't want to hold on to the edge...I just want to let go.
Then I see my daughter's face....and I know that she doesn't now and will never have that option of just letting go. She will have this battle forever...long after I am the captain of her pancreas team. She doesn't have a choice. It is her disease....not mine. In the grand scheme of things, I will have this fight for such a short amount of time....just a blink of an eye. So what right do I have to complain? What right do I have to feel sad or depressed or angry or even exhausted? What right do I have to get upset and wish that the rut of neverending-ness would just end already? What right do I have to hate the monotony? What right do I have to feel bad?
I don't have that right. It's not my disease. It's hers. So I see her face in my mind and I keep walking...I keep moving...one foot in front of the other...because I do it for her. I endure it for her for the little while that it is mine to endure....because I am her Mom...and I love her more than the air I breathe and the life I live. At least the path in this rut is well worn and familiar...and at least I know I am not alone....I catch glimpses of other D-parents out of the corner of my eye. I know they are there....making their way through the fog of monotony with me...and I know we will make it back out into the sunshine again.