Tuesday, December 31, 2013

Happy New Year!

Happy New Year to you, diabetes!

As we enter into our sixth year with you....I'd like to take the time to let you know a little something. I've accepted you as a member of this family long ago...I don't like you...sometimes I have so much hatred for you that I can't even see straight...but I accept you. You're not going anywhere...your bag is unpacked...you have your own spot at the dinner table...I get it...it's ok...I don't like you, but I put up with you.

This year Emma will be celebrating her 10th birthday...and a few months later, you will be turning 6. We've been through a lot...scary times, stressful times, angry times, and even proud and happy times. I've yelled at you...screamed through tears of uncontrollable frustration and exhaustion. I've seen you go to school with Emma and watched her put you in your place and show you that she's in charge...not you. I've laughed in your face with each victory...knowing that you must be sulking in the corner...angry that you keep losing the fight. You've sucker punched me more times than I can count....but the stubborn side of me smirks through gritted teeth every time I pull myself back up off the ground...stare you down and prove to you that I'm not afraid..that she's my kid....not yours...and we will always win.

This year we will soldier on....with you at our side....living life on our own terms...because it is just that...OUR life...not yours. I know this is your home now too...but I'm ok with that. You can have the ratty old pull out couch in the basement. Sure, a few springs are shot and bound to poke you in the back all night...but that's all I got for ya. You weren't invited...and you won't be here forever. One day I will kick your ass to the curb, change the locks, and watch you disappear with the horizon.

Happy New Year old friend. Good luck finding someone to kiss as the clock strikes midnight.

15 Minutes

15 minutes

15 minutes can mean a lot of things to a lot of different people. For example, I could tell my 9 yr old daughter that in 15 minutes she needs to go take a shower and put her pajamas on.....and she interprets that 15 minutes as being an hour and a half.

When I am on hold with the phone company trying to get some answers as to why our phone is out while my kid is at school and undoubtedly about to be checking her blood sugar before snack time, and the recorded message tells me they are experiencing a high volume of calls at the moment and my expected wait time is 15 minutes.....I interpret that as I might as well grab a pillow and a blanket because I'm going to be waiting quite a while forced to listen to a Muzak version of "Mandy" by Barry Manilow.

When my Mom used to tell me that we were leaving our cousins house in 15 minutes to head home after playing there for the afternoon, I always knew it really meant we wouldn't be actually leaving for about another hour....because our Moms would talk....say goodbye....talk some more....grab the coats....talk more....walk to the door...talk more........aaaaannnd then yell to my brother and I asking where we were and why we weren't ready to go yet when she told us it was time to go an hour ago.

To me....as an adult....a D-Mom to be exact, 15 minutes seems like an eternity. When my kids blood sugar is low, and I have to sit there waiting to retest her to make sure it's coming back up after the snack or juice I've given her.....well, each individual second that ticks by is actually painful for me sometimes. I try to distract myself...make a tea, watch TV, go on Facebook, but it doesn't work. I sit there with this awful feeling in my stomach...just panic...will it come up? Will it work this time? How many minutes are left to wait? 13? You've got to be kidding me...that was totally longer than 2 minutes! Is she ok? She looks pale....but she's asleep...and it's dark in here, aside from the headlamp I'm wearing and shining on her sleeping face. She's breathing weird. Is she ok? Should I wake her up? How many minutes are left? 10?!!! This is insanity...I still have 10 more minutes to wait?! 10 more to agonize...staring at her...waiting...hoping the juice worked this time....insanity...this is total insanity....if people only knew what this feels like right now, they would understand...they would donate to research for a cure...they would understand....if only they could feel the heavy...intense...electric panic that shoots through your body with every tick of the clock. It feels like you're drowning in the dark...alone...helpless....no hope. If they only knew....they wouldn't brush off diabetes...or treat it like it's no big deal...they would understand.

15 minutes....it means something totally different to me than it used to.

Thursday, December 26, 2013

Judgey McJudgersons

It's a tale as old as time....people judge others...they judge them based on appearance, behaviour, the words they choose to use, their beliefs and morals....the list could go on and on. People judge others. It's absurd to me.

When Emma was born, I learned very quickly that people will also judge your parenting style. You're not raising them properly...they should be breastfed....you should use cloth diapers....don't hold her all the time...let her fall asleep on her own...just let her cry it out...she will learn. It was enough to make my head spin. Everyone had an opinion and thought their opinion was right.

When diabetes entered our lives, I also quickly realized that people will judge the manner in which you choose to manage your child's disease. Don't refer to them as "diabetic"....bolus before they eat, not after....don't let them eat candy....don't let them drink diet soda...don't let them do this activity....make them check their own blood sugar, change their own pump site, inject themselves on their own, count carbs on their own.....make them do it on their own because it's their disease and they need to learn. Stop checking their blood sugar overnight! No, wait....be sure to check it at 3:00am! Make them wear an insulin pump...you're not a good parent if you don't because its the best option out there now! It doesn't matter if they scream and cry...you're the parent...you're in charge...tell them they have to! Let them stay home alone...don't let them stay home alone. Let them go on sleepovers...don't let them! Get the flu shot...don't get the flu shot! Don't let their a1c go too high...you need to keep it like my child's a1c...I have it in control....why aren't you doing it like me? I don't understand why you can't just do it this way....my way...the right way...the only way?!


Everyone is a critic. Everyone has an opinion. Why must there always be so much judgement in this life with diabetes? Why can't we all just accept the fact that diabetes is probably one of the most individualistic diseases out there? Why must we look down our noses at others that are living the same life as us...albeit their own version of the same life? Instead of beating each other down with our words and our unfair judgements, why don't we all just take a minute...swallow down that critique that is about to jump out of our mouths....and just offer a smile....a hug....a kind word of encouragement.

Diabetes is hard. It's a fact. The only constant is that it's ever changing and guaranteed to always keep you on your toes.

So, stop being mean. Stop judging others. Stop shoving your opinions down others throats. Stop perceiving yourself as being any better than the rest of us. We are all in this together. We are all the same....insulin wielding badasses that will get the job done no matter what it takes.

Tuesday, December 24, 2013

If there was Facebook in Heaven

If there was Facebook in Heaven, I would write on your wall and tell you thanks. I would put a smiley face emoticon and a heart too. I would tell you thank you for listening to me all day long as I struggled to get Emma's blood sugars down to a decent range. I wasnt looking for perfection....all I wanted was decent. I was near tears at one point this evening....ready to wave the white flag and let my guard down and just sob.....big ugly tears full of frustration and exhaustion. I was ready to let them go...but instead I closed my eyes as I stood at the kitchen sink....my back to the living room where Emma sat. I stood there and closed my eyes and talked to you again. I asked for your help. I begged for your help. I felt weak...and I was lost...I didn't want to shed any more tears for diabetes...especially on this day. See, I've shed enough tears over this disease that they could fill an ocean. I didn't want to give any more of my tears away to diabetes. I asked you to help me be strong again. I asked you to hold my hand and make me believe that I can do this...that this moment right here...right now...this moment is where I show myself what I am made of. I asked you to take away the sadness...take away the feelings of failure...take away the thoughts that I can't do this. I asked you to help me silence diabetes...silence it's negative shouting in my head...silence the way it seems to creep inside my head and convince me that I won't win...that I have no idea what I'm doing...that it's stronger than me...that it's a losing battle...that I will never succeed. I asked for your help...your comfort...your love.

And you were there. Her numbers are finally back down and decent. Christmas Eve...your birthday....wasnt ruined for her. Diabetes didn't win. We won. Together.

If there was Facebook in Heaven, I would write on your wall....

Thank you Grandpa. I miss you more than I can even begin to explain in words. I hope you had a wonderful birthday celebration up there. I bet it's so beautiful where you are that if I were to see it now, it would take my breath away. I can't wait to hug you again...wrap my arms around your neck...hug you and smell your old familiar smell...stare into your bright sparkly eyes...soak in your kind and caring smile...and just hear your voice again...hear your laughter again. I love you. Thank you so much, Grandpa.

I would end it with a heart and a like.


Sunday, December 22, 2013

Next Year

I'm not one to make New Years Resolutions, because it's too much pressure...and I have enough of that on a daily basis as it is. However, I do like to think about ways that I can make the upcoming year better.

I want to remember that it's just a number....be it an a1c number, a high blood sugar, or a low blood sugar.....I need to remember that it's just...a....number. It's not a reflection of how well I'm doing or how poorly I'm doing at playing the role of my daughters pancreas. We've been at this for over five years now and while I am getting better at remembering this fact, I still have my moments where the frustration over the number takes over and I walk around with a black cloud of unfairness over my head. I am going to work on letting the light through that cloud this year. I'm going to let it through and shine on the reality in front of my face. It's a number....just a number.

I want to remember that I'm good enough just the way I am right now in this moment. I'm a good Mom. I'm a good wife. I'm a good friend. I'm a good psuedo pancreas. No matter how hard I would like to try, I will never be able to please everyone all of the time. Not everyone is going to like me. Not everyone is going to agree with my opinions or beliefs. Not everyone is going to support me or be there for me and my family. Not everyone is going to get it. They just won't. And that's ok. I didn't get it before June 26, 2008 either. I can only do the best that I can do and that is perfectly ok. The only people who's opinions I should be concerned with our my family and close friends....because I know that they love me and care about me.

I want to remember that it's ok to make mistakes. Mistakes are the only way I will ever learn. It doesn't mean I've failed...but rather that I've succeeded in thinking outside the box and coming up with an alternative solution.

I want to remember that my kid is going to be 10 years old soon. She's going to want to spread her wings and fly away from the nest more often. She's going to want to be independent more. She's going to want to go on sleepovers and play dates. She will want to hang out with her friends and laugh and talk about boys and enjoy being a kid. I want to remember that just because diabetes is a part of her life, it doesn't mean she can't do these things. I want to teach her more and give her more responsibility and trust her more. I want to give her the chance. I want her to know that I will always be there for her and help her along the way no matter how old she is...because while, yes this is her disease....it is also forever embedded in my soul too...because she's my baby and I love her.

I want to remember that it's ok to be scared. Being scared means that you are doing something right...you are living...you are letting her live...you're not letting diabetes run the show. Being afraid is normal sometimes. It's what you choose to do with that fear that really defines your lives. I want to feel the fear and use the strength of that emotion to keep us moving forward.

Perhaps most of all, I want to remember that life isn't about the big moments...it's not about the victories or the defeats...it's about the steps in between...the small moments along the way...the moments where you feel like you can't go on...like you're losing...the moments where you are exhausted and ready to throw in the towel. Life is about those moments...it's about the journey....the smiles in the snow...the laughs late at night as the stars shine through your bedroom window...the feeling of your child's outstretched arms wrapped around your neck as they hug you and tell you they love you...just because. Life is about the games of Monopoly played on the living room floor on a Sunday night...or times walking through the grocery store hand in hand singing "Summer Nights"...or   walking through the rain trick or treating on Halloween with friends.

I want to remember that time flies by and she will be grown and gone before I know it....so I need to enjoy the little moments...the steps along the way. Diabetes is always there....but when I look at my child, I see life...I see joy....I see love. That's what I want to remember this coming year.

Friday, December 20, 2013

Dear Children of Today

Dear children of today,

First of all, I'd like to say thank you for being so incredibly awesome. It can't be an easy thing to do when you are constantly bombarded with a media blitz of brightly coloured tech toys that make fantastic noises and teach you that the only way to happiness is to get to the next level. See, I grew up in a time of Saturday morning cartoons full of pastel coloured bears that taught me how to share, late summer nights playing kickball in my front yard with the neighbourhood kids that taught me how to lose with grace and win with good sportsmanship, and spending hours upon hours outside at friends houses...only coming home to grab a quick bite to eat before heading back out again which taught me independence. We had Christmas parties at school, cupcakes for the class with every birthday, and Halloween parties where I was actually allowed to wear my plastic Wonder Woman mask on my face and not have it be considered a hazard or a weapon. Cookie Monster actually ate cookies. Bert and Ernie had arguments...but they always got resolved and life carried on.

I want to tell you that I'm sorry. I'm sorry my generation has changed the world for you in certain ways that seem ridiculous. I'm sorry that we are teaching you that the world is full of instant gratification...instant acknowledgement...instant recognition. I'm sorry that we have taught you that everything you see on TV is going to corrupt you. You know what? Watching Cookie Monster stuffing a cookie in his face shouldn't be reason for you to grow up being nutritionally challenged. That big blue monster is not your parent...he's not the one you should base your food choices or eating habits on. WE should be the ones who teach you....US...your parents....not some furry monster on TV. See, some people my age have this tendency to want to pass the buck....place blame anywhere else that they can think of...deflect the root of the problem onto things that you may see...or hear...on TV, the radio, in books, at school. Some of us just can't accept the fact that these problems are our problems....it's our responsibility and ours alone to make sure that you know the truth. It's up to us to tell you that yes.....cookies aren't always the best choice for a snack...and it's not always good behaviour to just shove it in your mouth with crumbs flying everywhere as you shout "coooookie!" It's up to us to say no once in a while and hand you that banana instead...and teach you that it's fun to peel it and pretend like you're a gorilla while you eat it. It's up to us to teach you that sometimes a cookie or two is not going to hurt you. It's up to us....not TV...not anyone else...just us...your parents. It's up to us to teach you to put down the video game controller sometimes...and go outside for a game of kickball. It's up to us to teach you how to play kick the can, hide and seek, and red rover. It's our job....no one else's.

See, we have gotten lazy sometimes. We have created these devices...iPads and iPods....iPhones and blackberrys. We've created these things that make our lives easier...but also distract us from what is truly important.......


So, I want to apologize. You are incredible kids...smart kids...funny, kind, compassionate, and capable of greatness. If I may be so bold as to speak for my generation, I want you to know that we are trying our best...and we love you...we want you to be happy above all else. So, while you may see these ridiculous things we have changed in your world...please remember that we are trying...and we're bound to make mistakes along the way. Be patient with us and together we can get it right in the end....this I am certain of.


Wednesday, December 18, 2013

Take time

Did you know that it's ok to say no? It is....really....I mean the world won't suddenly implode if you do. People won't hate you. Friends won't desert you. The skies will not open up with deafening thunder and vicious claps of lightening.

Time will keep ticking away....people will get over it...they will find a way to do it on their own or ask someone else. It will be ok. You don't have to do everything and be everything all of the time. You need to sit down, close your eyes, take a deep breath, and just.....be. It doesn't mean you are not good enough. It doesn't mean you failed. It doesn't mean you are a bad Mom or a bad friend or a bad person.

Take time for yourself...whether it's five minutes or five hours....don't forget to take time for yourself. Diabetes has a tendency to become all consuming some days. It seeps into your thoughts and your feelings when you're not always expecting it. It can sometimes make you feel like you're drowning in a sea of numbers desperately searching for that pattern amidst the chaos...your life raft of consistency.

When Emma was born, everyone told me...sleep when she sleeps...take naps with her...it's the only way you will survive. When she was diagnosed, I quickly learned that diabetes doesn't sleep....so I couldn't just apply the same advice and sleep when she sleeps or nap with her. At times it feels like it's me against the world....this big world full of uncertainties and problems with no solution. I live in a perpetual state of coffee assisted semi-controlled chaos...interspersed with sleep that is too short a time length to be considered "sleep" and too long to be considered a "nap."

So, I take time for me. I take time to just....be. I take a minute or sixty to just be Amy....not Shawn's wife...not Emma's Mommy...not Mrs. Ermel...just me...only me...the me I am beneath all of those layers...the me I've always been. Sometimes I lay down on the floor next to the cat and feel her purring beneath my hand as I pet her. Sometimes I watch ridiculously stupid programs on TV...ones that have characters named Snooki...or involve Amish kids trying out life in L.A....I watch them because they require no thinking on my part...and they make me laugh. Sometimes I pour myself a cup of coffee, sit down on the couch, close my eyes, and slowly sip the warm deliciousness. Sometimes I turn the radio up extra loud as I drive down the highway and sing along at the top of my lungs...not caring who sees me or if I look silly. And sometimes I just sleep....curled up under my soft comfy blanket...the cat at my feet...sleeping silently...dreamlessly...peacefully.

Whatever it is you choose to do, is the right thing to do. Don't lose yourself in this disease. Don't lose yourself in this life. It's too easy to get lost and find yourself beginning to drown. It's hard to hang on. It's hard to keep going. It's hard...but it's not impossible.

Monday, December 9, 2013

Emergency Room ignorance

In our diabetes world, there are few things that will strike fear into my heart more strongly than the awful combination of a stomach virus, low blood sugars, and high ketones. I can handle a lot...lows, highs, colds, pink eyes, ear infections, even broken bones and bee stings. I can handle pizza, birthday parties, sleepovers, and hormones. I can handle pumps and needles...finger pokes and blood sugars...carb counting and temp basals. I can do it. For the most part, these things have become second nature to me now. But the dreaded low blood sugar, high ketones, and vomiting combination platter....sigh...well, lets just say it scares me more than spiders...and if you knew me, you'd know that's a whole lot of fear right there.

Last Saturday started out like normal, we had breakfast...got dressed...went to gymnastics class. With about 10 minutes left of class, Emma came running up the bleachers to tell me she didn't feel well...she had to throw up. I had instant chest pains, my palms started sweating, and my mind went into overdrive panic mode envisioning her throwing up all over the other parents sitting below us. Well, to make a long story short, I got her to the washroom and she threw up...sweat was pouring off her face...and she looked like she had been hit by a transport truck. We made our way home and settled in on the couch for the old familiar routine of checking blood sugars, ketones, and trying our best to keep her hydrated.

After almost six years of raising a child with type 1 diabetes, you kind of develop a sixth sense for knowing when it's time to wave the white flag and head down to the emergency room for some help. I tried my best at home, but it just wasnt working...she needed an IV. So, we packed everything up and headed down to the hospital.

I hate the hospital for a number of reasons...since diabetes came into our lives, the main reason though is because I have witnessed first hand just how little the emergency room staff know about type 1 diabetes. It's shocking to me really. I mean I get that they are not specialists...they haven't specifically studied type 1 for a length of time I'm sure. I am assuming that they are kind of a jack of all trades, so to speak. They need to be prepared for any situation that may come through those doors. I get that. I respect that. I admire it...because I know it took a lot of hard work, intelligence, and determination to get where they are today.

BUT....and yes, this is a big but....I believe there is an unacceptable lack of knowledge about even the basics of type 1 diabetes. In my experiences, I have had emergency room nurses argue with me that I did not need to know the carb count of the food Emma eats...but rather the calories. I've had other ER nurses, try to give Emma double the insulin she needed. I've had ER doctors forget about us in the acute care area of the ER for not just an hour or two....but SEVEN hours...he forgot we were there...just plumb forgot. I've had to follow a nurse around the ER begging her for some anti-nausea meds for Emma because she had been throwing up non stop for the entire seven hours we had been in the room of forgotten patients. I've had triage nurses yell at me to not give my child ginger ale when her blood sugar was dangerously low while we sat there waiting to be seen. Needless to say, I gave it to her anyway...I wasnt about to let my child pass out because of a yelling nurse. And last Saturday night, I had the ER doctor actually ask me if Emma's insulin pump monitors everything for her...so we don't have to do anything. Uhh...no...I wish, but no.

So, I am aware of this ignorance in the ER...I know not to trust them...not to leave my child alone with them...not to believe them all the time or give them my full trust...because every single time I've had to take her there, I've encountered unacceptable levels of ignorance about her disease. The thing that terrifies me the most though, is the newly diagnosed family that may walk through those doors. The family that is still kind of naive...still trusting...still believes all doctors and nurses know what they are talking about all of the time. It scares me.

I plan on doing something to rectify this situation. I plan on pushing for at least the basics to be re-taught to the ER staff. If I have to do it myself, I will. The way things are right now...currently...is not ok...it's not acceptable...and it must be fixed.

Tuesday, December 3, 2013

I just wanted you to know

I just wanted you to know that I get it. I understand you. I know the worry...the fears...the moments of panic, and the stress. I know what it feels like. I know how overwhelming it is and how some days you literally have to force yourself to get out of bed. I know what it's like to sit there waiting for the phone to ring. I know what it's like to feel your heart skip a beat when it does...and it's your child's school on the caller ID. I know what it's like to carry your phones around the house with you...even into the bathroom...because you have to be ready at a moments notice to run...you have to be ready to grab your keys and fly out the door to fix a low or correct a high. I know exactly how hard it is to send your baby off to school for the first time after diagnosis. I know the courage you have to muster. I know how it feels like you can't do it and you shouldn't do it. I know the argument you will have in your head as you kiss them goodbye and walk away. I know how every single fiber of your being...every single maternal instinct you have...every thought in your head is screaming at you that this is wrong...this is bad...this is dangerous...this is scary. I know it. I get it.....because I live it.

I just wanted you to know that I understand what it's like to be tired....totally and completely exhausted mentally and physically. I see you standing there at the kitchen sink...leaning against the counter...your eyes heavy...trying to focus on the number...always the number. I see you standing there...because I'm standing there with you. I know that you just want your kid to be healthy...and happy..and not be treated any differently because of this. I know that you will spend your days battling this disease trying to ensure that your kid can just be a kid. I know it. I get it...because I live it.

I just wanted you to know that you are strong beyond belief. You are special. You are made of the stuff that others only read about in books and fairy tales. You are that silent hero. I promise you that it can be done. I promise you that even on your darkest days...in the midst of your darkest hours...when you feel broken and battered.....know that it can be done...know that you can do this...know that you have the strength and the bravery and the determination to take that next step. You do. It's in you. I know it. I get it....because I live it.

Don't ever stop laughing. Don't ever stop learning. Don't ever stop loving.

These are the things which will get you through those moments where you feel like you can't go on.

I know it. I get it....because I live it too.