Friday, May 31, 2013

Too much

I hate losing...and I'm losing right now...I'm losing and this post is going to be riddled with bad language...so if you have sensitive eyes or ears, please stop reading now.


I have been battling highs for days now...she has four molars coming in...it's humid and hot out...all things that make her high. Its the perfect recipe for disaster...and fucking combo plate from hell in my world. She's 29.2 right now....fucking 29.2.


I'm losing...diabetes is winning and I hate it. It's taking everything in my power not to cry. I don't want to cry. I don't want to give diabetes the satisfaction. I don't want to cry any more fucking tears for diabetes...no more...none...diabetes doesn't deserve it. It kills me that I am trying my best and my best is not good enough.

I was just walking around in the mall with Emma and looking at all of the people there and thinking...you have no idea...none whatsoever. You have no idea what it's like and I hope that you never do. Sure everyone has their problems...everyone has their own issues. I know that so many people have it worse than I do...I get it...I fucking get it already. But right here...right now...right in this moment of time I fucking hate diabetes with every single fibre of my being. I hate it and there is nothing wrong with hating it. There is nothing wrong with being pissed right the fuck off at it because you know what? It DOES fuckin suck! It sucks ass and I would give all of the money and all of the possessions I have in the world to make it go away. I would give my life for her. I would give her my pancreas if I could. I have bartered and bargained with God many times...please just make it stop...please make it go away...please make it better...I will do anything you want me too! I will be a better person I will be a better wife and a better mother and a better friend. I will do anything you want! Just please make it stop already! I can't take it anymore and she shouldn't have to take it anymore and we have had ENOUGH!

This disease just takes and takes and takes....and no matter how hard you try to convince yourself that you are fine and she is fine and it's just another setback and we will get through it and she will be fine and just keep swimming just keep swimming just keep fucking swimming....it's still there...we will still wake up tomorrow morning and it will still be there.

It NEVER GOES AWAY! Ever! It's ALWAYS FUCKING THERE! Like a paper cut that you can't stop touching...like when you burn your tongue on a hot cup of coffee and you can't stop fucking with it and it hurts and it's annoying and it's always fucking there.....except those things heal...those things go away eventually...but a busted ass pancreas is forever.

She did nothing to get this. Nothing. And here we are....pretending like we know what we are doing...pretending like it's all ok...pretending like we are fine. Well I'm not fine. I'm tired. And I'm losing and I can't fathom doing this for another day. I know I will....but in this moment....I can't imagine it. It's too much...too hard...too exhausting...just...too...much. And I have enough. I don't want anymore.

Wednesday, May 29, 2013

The emotional toll on a lion

I often wonder about the emotional toll that diabetes has taken on my kid. I wonder if it affects her more than she lets on. I wonder how often she thinks about it or gets upset about it or frustrated...or even worried. For the most part, Emma is a pretty easy going kid. She rolls with the punches and doesn't let too much get to her.

Over the years with diabetes, I only recall her expressing her frustration or sadness or even tears over things a few times. One of those times was yesterday. I was bringing her back to school after lunch and she told me how she gets annoyed with checking her blood sugar...how she's tired of it...it's been almost five years now...and she's tired of it. There we were walking up the pathway to the playground of her school...the same walk we have made countless times since she started at that school. I could hear all of the chatter and laughter and shouts from the other kids...playing...normal...not a thought of diabetes in their heads. And there my daughter was...9 yrs old in body....but ageless in her soul.

Whenever she has mentioned things like this about her diabetes, I always find myself feeling speechless and like I just got punched in the stomach. It takes me a minute to breathe again...as I stare into her big brown frustrated soulful eyes. I somehow always find the air...my mind kickstarts again and I shove the sadness back down...and I try to think of what to say to make it better. I try to find the words...the right tone...the right feeling...the right sentiment. I pluck the words out of thin air sometimes. I told her that checking her blood sugar is annoying...she's right...I feel the same way. I tried to use the analogy of how diabetes is a marathon...not a sprint. I think she understood. I hope she understood. I hope if anything...it gave her comfort.

I dropped her off on the playground with a kiss and an "I love you." She smiled as she ran off to play with her friends...diabetes frustration was gone from her face once again...gone from her eyes. She was a kid again...a 9 year old kid....another yelling, laughing, playing kid on the playground. I turned and walked back to my car...feeling the tears sting my eyes...feeling the anger at the tears...feeling the poisonous hate at diabetes threatening to spill over and ruin the day. I got in my car...turned on the radio..swallowed my sadness and my hate. I turned the volume up on the radio as loud as I could stand it...and sang along at the top of my lungs to Green Day's "Welcome to Paradise."  I drove down the road...not sure where exactly I was headed...singing/shouting...not caring who saw me...who looked at me when I got to a red light. I didn't turn the volume down...I didn't stop singing/shouting...I smacked my hand against the steering wheel to the drum beat...

And I let it all out...

I pulled into the parking lot of the grocery store. I turned the car off and the silence filled my ears...and I carried on with my day.

It's a marathon....not a sprint...and sometimes we need to live in the loudness of the journey for a minute. Sometimes we need to roar and hear the roaring to be able to appreciate the silence.

I hope Emma roared like a lion on the playground at school. I hope she roared like the lion I know she is.

Monday, May 27, 2013

Where is my home?

Sometimes I feel like I'm torn in all of these different directions. I never really notice it unless it's quiet...and I'm alone...with my thoughts.

I grew up in Wisconsin. I was born there, went to school there, made my first friends there, fell in love there. My family still lives there. My home is there...but in a way it isn't. I have a million memories there...a million dreams and hopes and wishes all began there...many of them while lying beneath the white canopy on my princess bed in my pink bedroom. It's home...but yet it isn't.

I moved to Oregon when I was 19. It takes my breath away how beautiful it is there. I don't know that the people who were born and raised there truly realize just how amazing it is. The mountains all around you...the lakes and the forests...the ocean....it's incredible. I experienced the sites and sounds of the world around me while camping...in the middle of nowhere...just a sleeping bag and a tent. I bathed in a river. I sat around a campfire and listened to native american drum circles. I learned how to snowboard. I saw the Redwoods. I heard the sound of complete and total silence while sitting on a moss covered tree in the middle of the Redwoods. I bought my first car...a white VW Superbeetle. I saw the sunset on the Pacific ocean and saw the sunrise as I smelled the salty air all around me. I learned how to love the sights and sounds around me. I learned that I am a part of nature...I am a part of my surroundings. I learned how to stop...and look up to the sky or out to the mountains or across the sand dunes or across the water....and feel it...feel that i am a part of it all and it is beautiful. The people I met there are my second family. I love them more than I even know how to explain in words. They are a part of me....a part of who I am. I had my first broken heart there. I met my soul sister there...a woman who taught me what it means to be happy with who I am...just the way that I am. The people there are different than they are in Wisconsin. They're more laid back...more relaxed...more grounded with nature and the world around them. The friends I made there got me....they knew me...the real me...the me that I felt I couldn't be for so many years. They knew me and they loved me for me...exactly the way that I was. Oregon was once home for me. It was my first home away from home. In some ways, Oregon is still my home...my heart is still there. I met my husband when I lived there. I met him online actually. I fell in love with his voice...his laugh...his kind heart...I fell in love with him even though we were miles apart.

I moved to Ontario to be with him. I married the man of my dreams. It's been almost 13 years now since I met him, and I still get butterflies when I look at him. He makes me smile when I don't feel like smiling. He makes me laugh like no other. He loves me more than I could have ever hoped to be loved. Together we had Emma...my reason for breathing. She is my life...my heart. Ontario is home...but at the same time it's not. I live here...I have worked here...I have made incredible friends here...I have started a life here...a family here. I had to face unimaginable heartache here when Emma was diagnosed. I faced it head on and I grew as a Mom...I grew as a woman...I grew as a human being. I learned what the true meaning of the words perseverance and hope and worry meant. I learned them because I live them daily with diabetes. I met my d-family here. They have saved my life and my sanity on more than one occasion. They have supported me in ways that I never thought possible. The love me and I would be lost without them.

So, when the world around me is quiet, and I let my thoughts carry me away...I feel torn sometimes...torn in ways that I can't explain in words. Where is my home? Where do I belong? Where do I fit in? All of these places? None? It's a very unsettling feeling sometimes. I know that home is where the heart is...and my heart is with my husband and Emma. I guess feeling this way is probably normal. I have left pieces of my heart all over the place. My home is in Wisconsin....my home is in Oregon...my home is here. In a way I guess that makes me lucky...to have so many places that bring me love and happiness...I wish that I could have them all wrapped up in one though...especially nights like tonight...when it's quiet...and my thoughts carry me away.

I don't have it so bad

Ya know what? My life isn't so bad. I don't have it so hard.

I have a husband and daughter that love me more than I can explain in words. I have a few friends that love me. I have a cat that i think loves me...but when it comes to cats...one can never really be too sure. I have a roof over my head and clothes upon my back. I have food in my cupboards and insulin in my refrigerator.

I am free to speak my mind and voice my opinions. I can share what I'd like and have an open mind to accepting the views of others. I can walk out my front door and for the most part not fear for my life...again...one can never really be sure of what will happen. I can read what I'd like...watch what I'd like...listen to what I'd like. I can do what I'd like. I can be who I'd like and believe what I'd like.

I have tools that make my life easy. I have a car. I have a phone. I have money in the bank.

My daughter has an insulin pump...she has access to the tools she needs to live. I live in a part of the world where the government gives me money to help pay for the costs of her pump supplies...in fact they even paid for the entire cost of her actual insulin pump. In my neck of the woods, I can walk into any pharmacy and give them money...and they will give me insulin...or test strips...or anything that I need to keep my daughter alive. I can walk into any hospital emergency room in the country and know that she will be taken care of...at no cost to me. I am able to have a doctor see her for her diabetes clinic appointments every three months at no cost to me. I have access to a nurse, a dietician, a social worker any time I need them...all at no cost to me. She will not ever have to pay for an eye exam in her life...right now because she is a child....but later on (unless a cure is found) because she has diabetes.

I have an easy life. We can pretty much have anything that we desire. We have access to pretty much anything that we need or could ever want.

Many people do not. Many people struggle with even the most basic of things. Many people aren't able to access insulin. Words can not explain how that makes me feel. To know that something I take for granted....is something that another parent struggles with obtaining every single day....it's a feeling like no other.

My life is not so bad. My life is easy. I am greatful and I wrote this as a reminder to myself for when I may lose sight of that fact.

Tuesday, May 21, 2013

For those who try to "help"

If you knew what it was like, you wouldn't say the things you say. You wouldn't talk about cures that are out there and make it seem like the rest of us are fools for not having tried them or known about them already. If you knew what it was like, you would not speak of magic juices and hemp....raw food diets or carb free diets...moss that grows in far off places and the glorious cinnamon. If you knew what it was like, you would realize that none of these things will make a pancreas magically and miraculously begin to produce insulin on its own again. If you knew what it was like, you wouldn't refer to insulin as "medicine" or speak about ways to be able to give her less insulin...as if it's a bad thing...a thing that shouldn't be given in the first place. If you knew what it was like, you wouldn't post these things online for all to see...especially those new to this D life...those that are the most vulnerable...the most impressionable...the most naive. You wouldn't try to convince them that if only they were to follow your advice, that their child would be healed...saved....cured.

However, I know that you don't know what it's like. I know that you might mean well with your advice and your suggestions. I know that you believe you are only trying to help. I know that it might make you sad or sympathetic to what we endure on a daily basis. I know that our posts of highs and lows and struggles might make you uncomfortable...or upset. I know that you truly believe in your heart that you are helping us fix the situation or make our lives easier. I know that some of you are out for making a buck. Some of you are reaching for that almighty dollar and you don't care who you step over on the way. I know that some of you prey on the naive...the new...the easily influenced...because you know that it is a sure thing and it will be a piece of cake to take advantage of them. I know that some of you are just off the wall....and that's ok too....we are all a little off the wall in our own way.

I know these things because we are almost five years into this life with D. I know there is no cure. I know that none of the things that you speak of are true. I know that I could feed my daughter nothing but cinnamon for the rest of her life...and she would still have type 1 diabetes. I know that I could pour your magic juice down her throat...and the only thing that would happen is her blood sugar would rise unless I gave her insulin to cover it.....because there is sugar in juice...all juice...even your magic juice. I know that when I inject or bolus my daughter with insulin, I am merely doing the job for her pancreas...I am replacing what her body SHOULD be able to do on it's own...but no longer can. I know that no matter if I have to inject or bolus her with .05 of a unit or 5.0 units of insulin....it's not going to harm her or be better or worse for her body....I am simply putting insulin into her body because that is the amount she needs to help her system digest the food she just ate...and it is the same amount of insulin her pancreas would produce on it's own if it still could.

I know these things because I have years of experience under my belt. I'm not new. I'm not naive. I'm not vulnerable or easily influenced. I have seen the highest of highs and the lowest of lows when it comes to this life. I have experienced nightmares that I can not awaken from...because they are our reality. I have seen incredible and honest miracles as well. REAL miracles...miracles like seeing my child accomplish her goals, dreams, and desires. I have seen her reach beyond the stars and never let anything stand in her way. I have seen her do these things WITH diabetes. I have seen miracles in her eyes.

So, please...before you decide to share your discoveries...your cures...your solutions to our "problems", pause for a second...take a deep breath...and think about it first. Think about if it will truly be beneficial. Remember that if there was a solution to our "problems"....we, as parents, probably would have already tried it by now...or at the very least, researched it to the extreme...probably late at night while we are waiting to check our child's blood sugar. Remember that we love our kids more than any one else on the planet...and if there was a cure or a solution...we would be all over it. None of us like sticking needles in our kids...so if it was as simple as only feeding them raw carrots, don't you think we would have done it by now?

Thanks for listening. Thanks for trying to help. Thanks for caring. My suggestion for the future if you are still wanting to help though...is to just give us a hug, tell us we are doing a kickass job, offer to learn how to take care of our child's diabetes and actually do it, offer to watch our child for a couple hours after you have learned...jus so we can have a nap, or even just listen....just listen to our struggles and be a shoulder to lean on when we need it most.

Monday, May 20, 2013

Forgot about D

I remember being fairly new to this D life and wondering if the day would ever come where I wouldn't be worried all the time...or thinking about it all the time. I actually asked a 40+ year veteran of D if that day comes....and when. They told me that it would happen...the day would come where it would just be routine. The day would come where checking blood sugars, giving insulin, counting carbs would all become such a normal thing that I wouldn't even really be thinking about what I was doing...I would just do it. I remember shaking my head in disbelief when they told me that the day would come where I would find myself NOT even thinking about diabetes at all. They said it would happen and I would catch myself and be stunned that I actually....forgot?.....about it.

I know we don't ever truly forget about diabetes. I know that the reminders are there in nearly everything we do...be it food or activity or the numbers. We can't get away from it ever...no matter how hard we try. I'm assuming that even when Emma is grown, I still won't be able to get away from it because I will be worrying about her and wondering what she's doing and if she's ok and if diabetes is being fair. I have to admit though......

it has happened...

I have forgotten about diabetes. I have had moments of time pass where diabetes was not in my head. It was bliss....peaceful, happy, quiet....bliss.

One of those moments occurred this weekend. For whatever reason, the weather really seems to play a big part in how Emma's blood sugars behave. This weekend we had beautiful weather....sunny...warm...like the perfect start to summer type of weather. Her readings have been perfect. I realize now that I have typed that statement out, I probably jinxed things and she will have horrible numbers tomorrow...but alas...that's the way it goes sometimes. Anyway, her numbers have been perfect. Every single one. All of them have been in perfect range. She has eaten foods that I had to guess the carb count on. She has had a lot of activity....A LOT of activity. I have given foods and juice to her without bolusing and set temp basals on her pump ahead of time to avoid any potential lows. I've gotten them all right. It's like I'm in a zone....a pancreating zone....I've found my groove...the stars have aligned....and everything has worked out perfectly.

So, for a moment yesterday....and a moment today....I forgot. I sat there on my deck watching her play with a friend....blowing bubbles and playing hopscotch......and I forgot.

I smiled as I remembered years ago when that 40+ year veteran assured me that the day would come. I smiled and marvelled at how far we have actually come in this life. So, this post is for you specifically, newly diagnosed D-Mom or D-Dad. The day will come. I promise you. I know you are probably sitting there shaking your head in disbelief just as I did. I know you won't truly believe me until it actually happens to you too...but I hope that you can read this and take away a little nugget of peace in your heart...and know that the chance...the possibility...it's there.

Thursday, May 16, 2013

Two Years of Pumping

Two years ago this night, I was freaking out. Two years ago this night, I was panicking. Two years ago this night, I was certain that it was entirely possible to actually be scared to death.

Two years ago this night was the last night Emma had before starting to receive her insulin through an insulin pump. I barely slept that night. I knew in my heart that we had made the right decision to begin pumping, but I was terrified anyway. I knew that her blood sugar levels would improve. I knew that it would give her more freedom. I knew that it was a good thing. All of these things that I knew though...did absolutely nothing to help calm my pounding heart.

I was afraid. I was putting all of my faith in this little pink device that runs on one single AA battery. I was forcing myself to leave my comfort zone of injections....where I had been for about 3 years. I felt like I was closing my eyes and taking a leap off the edge of my reality....where I would land, I had no idea. Would I be able to do it? Would I screw up and somehow give her too much insulin and kill her? Would I insert the infusion set incorrectly and cause the insulin to not be able to flow into her body and wind up killing her? How was I going to be able to do this?

...and here we are two years later...

Life with an insulin pump is not easy by any means. It's not a magical device that acts as her pancreas for her. It doesn't automatically know how much insulin she needs or know how to keep her alive on its own. It is not her pancreas....it doesn't compare to the real deal. Nothing could compare to the real deal.

We have had many ups and downs these past two years. The first time I inserted an infusion site into her belly on my own at home, I was terrified...my hands were shaking...I was sweating...stuttering...stammering...laughing like an idiot over the smallest things because I was so nervous. I put the DVD Animas sent us with her insulin pump in and pressed play. I followed along with the how to insert an infusion site section...step by step with the man on my TV screen I would watch a step...pause the DVD...do the step on Emma...press play...watch the next step on the DVD...pause...and do it on Emma. It took me about half an hour to get it done...but I did it...and she was fine...and I was proud of us....proud of myself. I proved it to myself that yes...I could in fact do what needed to be done to keep my child alive every day.

I managed one time to insert the site into her thigh muscle instead of the soft tissue next to it. The tiny plastic canula that goes into her body hit the muscle and bent at a 90 degree angle....causing the insulin to not be able to flow through into her body. I did not know this occurred because I can't see inside of her body. I didn't know she wasnt getting any insulin until about 3 hours later when I checked her blood sugar and the meter simply and horrifyingly said "HI"....which means her blood sugar was so high that it wouldn't register on the meter. That was a definite low point. In fact it was one of the scariest moments of my life. Emma would switch from hysterical crying...to hysterical laughter and back again in a matter of minutes...all because of her blood sugar.

We have gone on two nine hour road trips to the US. She has gone to at least 100 two hour long gymnastics classes while wearing her pump. She has had two birthday parties...two Christmases....two Easters...two Halloweens....all while wearing the pump. She has educated her peers about it. She has educated her teachers and school staff about it. She has had numerous fundraisers...came up with the idea for wanting a diabetic doll like Barbie....all because of her pump. She has spoken with other children who were afraid of the pump..but still wanted to get one too. She has comforted them...reassured them...made them see that it's not so scary. She has met some incredible people along the way.

Her Animas Ping insulin pump has made our lives about as close to how they were before diagnosis as we can possibly get. It has given us freedom...allowed her to regain more of her childhood...allowed her to just be a kid. We have gained a whole new family in our support system at Animas. We aren't just a number to them. We aren't just another customer. We are family....for life.

 So, I dedicate this post to you, Jumanji (that's what Emma calls her pump). Thank you for being by my side over these past two years. Thank you for being my greatest tool in this fight. Thank you for all the joy you have given her. I love you and I would be lost without you. Thank you.

Wednesday, May 15, 2013

Amazing talks

I had the most amazing talk with Emma tonight. It kind of came out of nowhere, as most all amazing talks seem to happen. We were laying in her bed together watching a movie about gymnastics. Emma loves gymnastics...she's been taking lessons since she was 2 years old.

She started to explain to me how she is upset with herself because she has been trying to learn how to do front walkovers and just can't quite seem to get it. As the tears started to fall, she said that its hard for her because she is afraid of falling and hurting herself. I could see the frustration in her eyes and my heart ached for her. It's difficult to see your kid feeling defeated...feeling like they aren't good enough.

I hugged her and wiped away the tears and explained to her that she shouldn't let her fears stop her from doing anything. I told her that she needs to keep practicing...keep trying...taking all of the fears she feels and turning them into motivation to make it happen. I told her that when she feels scared to try something, to take a minute and think about all of the things she has done in her life so far...all of the needles she has endured...all of the pain...all of the highs and lows...all of the fears that diabetes has brought her way......and remember what she has accomplished in spite of it all. I reminded her of the fundraisers she has come up with...the people she has gotten the opportunity to meet because of diabetes. I told her that she can't give in to these fears...she can't let them dictate what she does in her life...because if she does, her life won't be as much fun. We can't live our lives being afraid. We cant give up that power and that control to something like fear. We can't reach our goals with that added weight of fear upon our shoulders. We need to take a deep breath...grab ahold of that fear...and run with it. We need to turn it into the very thing which keeps us going.

I am incredibly greatful that I was able to use two very special people we have met as examples of people who have stared fear in the eye and reached for the stars anyway. Ironically enough, they are both type 1 diabetic. Funny how that works, isn't it? Two of the most fear defying people I know...just so happen to have type 1 diabetes too.
I saw the fear wash away from her eyes as I explained their stories to her. I saw the comfort take over. I saw the inspiring motivation settle behind her tear filled eyes. I saw it. I saw the feeling of recognition and sameness and bravery take over where the fear had just been moments before. I saw it with my own two eyes.

I told her that I believe in her. I believe in her even when she doesn't believe in herself. I will help her practice. I will stand by her side. I will be there...no matter what. I told her that she can do it. I told her that I know she will do it. She is stronger than she sometimes believes...braver than she even realizes...more capable than she knows of doing whatever her heart desires.

The conversation ended as always with a hug and a plan of action for helping her reach her goal....this time in the form of a post it note on the table to remind us to practice every day after school.

I walked downstairs and happened to glance out the window. I saw the most breathtaking sky. Purples and pinks and yellows...the sun was setting on this day....and it looked as if the sky was on fire. It was gorgeous. I stood there for a minute and smiled....realizing that I am incredibly lucky. I am surrounded by beauty....the world around me...and the world within my heart. Today was a good day.

Monday, May 13, 2013

What might have been

I sometimes wonder what my life would be like had diabetes not shown up uninvited. It use to make me sad to think about a life that we could have had....a life that was never to be written.

I got 4 years as a regular old Mom. Four years of giving her sips of my juice...bites of my food. Four years of opening the pantry door and asking her what she wanted for a snack...without a carb count or insulin ratio thought in my head. Four years of watching her run and play and be a kid. I got 4 years of sleeping peacefully at night....ok...more like 2 1/2 years of peaceful sleeping...Emma was not a good sleeper as a baby or toddler...but in any case...I got a good solid 2 years of worry free sleep every night.

Looking back on it now, I realize how blissfully unaware I was and how much I took for granted. Emma was my first child...my only child. I realize that I am starting to forget what it was like on a day to day basis. The memories I have of being her Mom during those first 4 years are like a whisper of what once was. It's sort of like looking through a window in the middle of winter...taking a deep breath and as the window in front of you fogs over when you exhale....you still try to see through...you wipe away the fog...leaving behind streaks in the shape of your fingers...but yet you still try to look through. My original life...my days as a regular Mom are outside that window. It's blurred and fogged over...but I still see it. I still see that version of myself. I miss her sometimes.

I wonder how my life as a Mom would have played out had the events that occurred on June 26, 2008 been different. What if the doctor had walked into the room and said, "oh it's just a bladder infection...here is a prescription for an antibiotic...she should be feeling right as rain in a couple of days." instead of saying the dreaded D word? What if we had been able to walk out of the hospital that morning...hand in hand...gotten into the car...and driven away back into our regular old life? Would I be happy? Would she have been happy? Would she still be the same kid she is today? Would I have gone back to work when she started kindergarten? Would she still have ended up being as independent and strong willed as she is? Would I? Would I be more emotional and cry more over silly little things? Would I be as compassionate? Would I still have this overwhelming urge to help people? Or would I have been so wrapped up in my own life...my job...my friends...to even cast a second glance?

I don't know. I don't know how we would have ended up. I don't know what our lives would have been like. I will never know because the doctor didn't send us on our way that day....he didn't give me a prescription....he said the words type 1 diabetes...and our lives were never to be the same.

Sometimes when I feel the need to daydream about what might have been and I wipe away the fog from that window, it makes me realize that despite all the pain diabetes has caused on this side of the window....I like our life...I like it because it's REAL...and it's strong...and it's ours.

Sunday, May 12, 2013

Plus size models

As Emma and I were sitting here watching the season finale of Survivor tonight, a commercial came on TV for a plus size women's clothing store. I've seen it a million times before. The women are beautiful, plus sized, posing in front of a peach coloured screen out in some park type location. I'm not quite sure what the point is of the random peach coloured screen just hanging out there in the middle of the park....but that's beside the point.

Emma turned to me and asked me why all of the models were bigger than the usual models she has seen on TV commercials. She didn't know that it was a commercial for a plus size closing store...but she did notice that the models were a bit larger than the typical women parading around on TV flipping their hair about as a breeze blows their clothing ever so gently.....why must there always be a breeze anyway? I haven't quite grasped the advertising advantage of that one. Anyway, I told her that these women on this particular commercial were modelling clothing from a plus size store. She seemed to accept that fact, pausing for a moment...and then asked me, "well why don't they have some of those women model clothes on TV for other things too or for other stores that have ALL sizes?"

It was a valid question. There are very few REAL looking women represented on TV. Usually there are scantily clad, extremely thin, pouty lipped women plastered all over the screen. The fact that this particular commercial warranted a comment from my daughter shows me that it is noticeable even to her.

Sometimes I wonder how much the world would change...if at all...actually if real women were represented more in advertising. Sometimes I wonder if girls like my daughter grew up with the plus size, thin, and somewhere in the middle model types represented equally....if it would change their perception of what is pretty. Sometimes I wonder if there was a better mix of body types out there on TV commercials, magazine covers, or billboards....would it help their self esteem? Would they see that all of these women are just as beautiful even though they are physically different? Or would it still be the same way it's always been? Is our perception of what is pretty or beautiful or worthy of being a model representation something that is ingrained in us from a young age?

.....and then Emma asked me, "Mommy, how come you never see models with insulin pumps on TV?"

I know some of you are probably thinking...well who cares? Why are you concerned with models and why are you making it seem like your kid is basing her self image on models on TV? Well, I just want to clarify....I make a conscious effort to build my daughter up...make her realize her own beauty...make her see that TRUE beauty comes from within. I've had many discussions with her about how a person can be physically appealing on the outside...but if they are mean or rude on the inside...it makes them less pretty...less appealing...less beautiful on the outside. I think she understands that and takes it to heart.

However, she is a young girl....growing up in a world dominated by media overload. I sometimes feel like I am fighting a losing battle. I will always reinforce to her what an honest and true beauty is. I can't help but think that it would make my job as her Mom a little bit easier though if things were different.

...."Mommy, I think it would be cool to spot a pump tube coming out from one of those models pockets."

I have to agree...I think it would be pretty cool too.

Friday, May 10, 2013

What does it mean to be a Mom?

What does it mean to be a Mom? Sure, we cook, we clean, we work, we are our kids chauffeurs, their teachers, their friend. We teach them how to speak, how to walk, feed themselves, dress themselves, tie their shoes, brush their teeth. We teach them the alphabet, how to count, how to spell their name, how to write, and how to read. We teach them that if they have one apple and we give them another apple....they now have two apples. We teach them to share, to be kind to others, to have respect, and to believe in themselves. We teach them how to ride their bike, how to swing at the park on their own, and that it's not very safe to climb up the slide...slides are meant for sitting on your bum and sliding down....that one never seems to sink in with them though, right? We teach them not to talk to strangers, to look both ways before crossing the street, and to call 911 in an emergency...and no...Mommy telling you that it's not ok to swing from the ceiling fan even though you really want to is not a type of emergency that 911 is used for. We teach them to tell the truth...even when the truth means they might get in trouble...it's still always better to tell the truth. We teach them to be kind to animals...love them...be gentle with them...feed them, walk them, and clean up after them. We teach our children to dream big...no matter how young they are. We teach them to stand up for themselves and for others. We teach them that it is better to give than to receive. We teach them to be polite...say please and thank you...you're welcome and that was thoughtful of you. We teach them to work hard...that nothing worth getting in life will come easy. We teach them to be greatful for what they are blessed with....a home...a family that loves them...food in their bellies...and clothing on their backs. We teach them that the world is a tremendously big place...but that doesn't mean that our one voice can't be heard. We teach them that it's important to never stop learning...ever...throughout our entire lives we learn. We teach them that even we make mistakes...we're not perfect...there's no such thing as perfection. We teach them that making mistakes is a good thing...it's how we learn. We teach them to pursue things that make them happy...discover their talents...seek out ways that they can bring joy to the world around them.

We teach them all of these things and more. We are magical creatures truthfully. We can make the tears stop and the pain go away with a kiss and a cuddle. We can bring a smile to their faces in the midst of a bad day. We can fill the room with their giggles when giggles really are the last thing they wanted to do. We are their heart...their home....their light and their love. We are Mom...Ma...Mommy...Mama...and for a brief period of time during the teenage years...Mother.

No one can love as strongly as we do. No one can love as deeply as we do. We are their biggest cheerleaders and their most dedicated fan. No matter how far away from us they may be....they are always in our minds and our hearts. They are the reason for everything that we do.

What does it mean to be a D-Mom? All of the above and then some. We cause our type 1 kids pain on a daily basis because we love Them. We never sleep because we love Them. We worry about what is going on inside their body every single day because we love them.  We have taken on the role of their pancreas even though we have no experience...no idea what we are in store for...sometimes no idea what we are doing....all because we love them. We work with them, their pump, their pen needles, syringes, blood sugar meter....to keep them alive every single day. They are the first thing on our minds in the morning...as soon as we open our eyes...before we even step foot out of bed........and they are the last thought that sweeps through our exhausted minds at the end of the day.

There is not a word that has been invented yet that can describe our love for them.

Being a Mom is the most incredible feeling on the planet.

Happy Mothers Day to my own Mom, all of the other Moms in my family, my friends that are Moms, and my D-Moms. You inspire me and I am greatful to be a part of your lives.

Thursday, May 9, 2013

My So Called Life

So recently I've been watching episodes of "My So Called Life" again. For those of you not familiar with it, it's a TV series that aired in the 90's starring Claire Danes and Jared Leto. It's about life as a teenage girl...school, her parents, love, friends...growing up. I loved it back when it first aired and I love it now.

It's sort of bizarre though, because my reasons for loving it then as compared to now are very different. Back then, I was a teenager....I could relate...I felt like this girl, Angela, was living the exact same life as me. I felt like I didn't exactly belong. I felt like my parents didn't understand me and they just didn't know what I was going through. I had a huge crush on a "bad boy" type...and felt like he didn't even know I existed. I would pass him in the halls of school and my heart would skip a beat. I dyed my hair burgundy and wore plaid flannel shirts and ripped jeans. I listened to The Cranberries. I over-analyzed everything. I was trying to find myself. I hate that term...."finding myself".....it's one of the few cliches that I can't stand actually. I don't think a person can find themselves. I think that we are all completely aware of who we are....we might just get distracted along the way and feel lost...feel like we aren't fully there...fully present...fully ourselves. This show made me feel like I was understood....and isn't that really what we all want? To be understood? Isn't that the epic quest? To just finally be able to see the connection in someone else's eyes and truly believe that they understand us?

When I watch the show now, I love it because it transports me back to that time....to that version of myself. I can almost smell the Nag Champa incense burning and feel the soft flannel shirt sleeves against my skin. Echoes of Pearl Jam and Soundgarden ring in my ears. Time was so much easier back then....even though at the time, I thought it was so difficult...so hard...so overwhelming. I thought my world would end when my parents wouldn't let me go somewhere...or when I wrote a poem in my creative writing class that was full of teenage angst and despair....only to have my teacher write a comment on it...in red pen...saying "every teenager feels this way...this is nothing new." That sentence written in red pen hurt my feelings....it made me feel like I was just one kid in a crowd of clones...like my thoughts didn't matter because they had all been heard before...they had all be said...I wasn't important or unique.

When I watch the show now, I see things from the parent's perspective. I feel the Moms pain when her daughter doesn't want her around. I feel her pain when she wants to brush the hair out of her face and tuck it behind her daughter's ear...but she hesitates...her hand hanging in mid air...a look of letting go and sadness on her face. I understand the parents concern and worry now. I get it.

My So Called Life meant a lot to me as a kid....and I'm finding it still means a lot to me now. No matter what the year...what decade it is...or who I am in that moment.....I can relate. I feel understood. It's kind of strange how something that represents the old version of myself...the pre-D Mom version of myself.....still is relevant to me now.

Oh...and just to keep this post diabetes related......Angela's grandfather has diabetes....type 2 to be exact.

Wednesday, May 8, 2013

I lingered a little longer

I lingered a little longer tonight as I said goodnight
I felt her arms wrapped around my neck
Whispering I love you Mommy in my ear
I lingered
Savouring each fleeting moment
Echoes of our day ringing in my head
A beautiful symphony of
Laughter
Light
Love
I lingered a little longer tonight
Because I know that time is not on my side
I blink and she's grown
I glance away for but a second
And she's becoming more.....
Herself.
I lingered a little longer tonight
Holding her in my arms
Breathing in her youth
Hanging on to my child
Hanging on to my heart
Hanging on to my life
I lingered a little longer tonight
Visions of the days that lie ahead
Flashing through my mind
Trying to force their way through to the front
To the now
Visions of the unknown
Full of hope and
Breathtaking movements yet to be composed.
For life is but a sonnet
Twinkling through the treetops
Dancing off into the sunset on the horizon
I lingered a little longer tonight
I held my baby in my arms
I held onto the moment...
the now
greatful for the moment...
the now
I lingered a little longer tonight.

Tuesday, May 7, 2013

It's not normal

What we do everyday as parents of children with type 1 diabetes is not normal. It's not typical. It's not right. We stick needles in our children every single day. We squeeze blood from their fingertips. We count the carbs in every single morsel of food that they put in their mouths. We worry about things like the weather...not because we're concerned about whether or not we need an umbrella...but more so because we wonder how it will affect their blood sugars. We become experts at pre-planning for things like sleepovers, play dates, birthday parties, and sports. We walk around with mini grocery stores in our purses and pockets. The neighbourhood kids refer to us as "the mom who always has candy" or "the mom who always hands out freezies" in the summertime. Our children's friends and classmates refer to us by our first names because we have spent more time than most with them....field trips, school activities, pizza days, and treating lows during class.

It's an intense life we lead. We have to somehow get it straight in our minds and our hearts that we are attempting the impossible every single day. We are attempting to take over the function of a vital organ for our child every single minute.

It's bizarre really if you take a minute to step back and think about it. We are constantly chasing that elusive perfect number...that perfect balance. I have this ultimate goal in my head at the start of each day....good numbers...an even balance...no spikes and no lows. Every morning I wake up with the need...the desire to strive for perfection...even though everything in me is screaming that it's not possible. I still set myself up for inevitable disappointment every day. I still do it even though the odds are stacked against me. I face failure and disappointment almost daily and I am forced to mask my anger or my sadness about it. I mask it because I don't want people to know it bothers me. I mask it because I don't want Emma to see that it bothers me. It's just a number....it's just a high...we can fix it...it's just a low...drink this juice...it's just pizza...it's a wrong guess...a failed site...a bad day. Fix it and move on to the next number...the next day.

Yes, we sometimes get it right. Sometimes we have perfect days. Sometimes we reach for the stars and we make it happen. Life as a D-Mom isn't completely bad...it's not horribly sad and disappointing every moment of every day. Most days I go about my business as usual...routines and pancreating while laughing and having fun with my kid. Most days I face the disappointing number or diabetes problem head on and use the knowledge I've gained to fix it, accept it, and move on without a second thought.

Oh, but some days....some days I hate it. I hate every tiny set back and every tiny disappointment. Some days I get in a funk where I let the whole unfairness of it all wash over me. I don't like feeling that way...but I think it's necessary. I think it's healthy. I think it helps make the good days all the more special.

So, while our lives are far from normal....in the traditional sense of the word, it's still our lives....and we make it work...we laugh in diabetes face...and we make it work.

Friday, May 3, 2013

Loosening my grip

I became a Mom on February 14, 2004. I held Emma in my arms and felt complete. I felt like everything I had done in my life leading up to that moment had lead me to her.

Exactly 4 years 4 months and 12 days later, I became a D-Mom. I held that insulin pen needle in my hands for the first time and I felt sadness. I felt anger. I felt fear. I felt robbed. I looked in my daughters eyes and I remembered that day she was born...when I held her and saw all of the possibilities...all of the moments she would experience. I remembered it and it felt like it was being ripped away from me...stolen from her. And for what? Why? Why us? Why her?

Exactly 4 years 10 months and 1 week after that, I sit here feeling......ok. I feel normal....or my version of normal anyway. I feel like my 9 year old daughter can still have the future I envisioned for her when I held her for the first time. She can still have it all. Diabetes hasn't stolen that from her....it's merely along for the ride now.

I think I'm at the point now where one of my biggest concerns is figuring out how to be ok with handing over the reigns to her. She needs that independence. She needs to go play with her friends. She needs to take control of her disease for certain periods of time...all on her own...be the captain of the S.S. Diabetes so to speak. She needs to have those typical life experiences like playing outside at a friends house without me there too. She needs to figure out where she will carry her blood sugar meter while she's there. She needs to figure out where she will keep low snacks. She needs to have a low blood sugar while playing...recognize it...stop playing...and test herself...treat herself...call me to tell me. She needs to have these moments on her own....so she can gain the confidence in her ability to take care of herself.......because one day.....much sooner than I would like....she will be the one taking care of herself...not me.

I'm trying to take it one experience at a time...baby steps so to speak. I'm loosening my grip on diabetes and letting her do these things a little at a time. I trust her. I know she is smart. I know she is responsible. I also know she's only 9....just a kid. I know she shouldn't have to be taught these lessons in responsibility. I know this shouldn't even be a concern in our lives....but it is....it is a part of our lives. My job as her Mom is to prepare her....teach her how to play the game....give her the tools to use...and explain the rules. My job is to make sure she has the knowledge to succeed....and still be ok with making mistakes and failing. I made mistakes. I still make mistakes almost daily. Life with diabetes is a marathon....not a sprint and we learn every step of the way.

It's not easy to loosen the grip on diabetes....but I have no doubt in my mind that it is necessary for her success...her happiness...her independence and her confidence.

Wednesday, May 1, 2013

So you had a bad day

It's 2:11am....and I'm here on the couch....my head is pounding and my eyes are leaking...tears are rolling down the bridge of my nose and I can see them form into a droplet at the end...perched precariously on the tip...until it becomes too much...and it falls...landing on my shirt...leaving behind a dark spot...a reminder of the frustration...a reminder of the moment...

Today was a bad day. Three site changes...lows...highs...juice...blood...the whole works. Sometimes it's just too much. Sometimes it just builds up and one maddening moment turns into another and that turns into another and it gets so big and so overwhelming and so depressing, that it makes it hard to breathe.

So here I sit....trying to breathe. Crying tears that I don't want to cry....angry tears...overwhelming tears. Every single blink of my eyes is like a jackhammer pounding through my head. I can feel every beat of my heart...thudding away...echoing the pounding madness in my head. It hurts. It is a continual bass drum beat reminder of where I am...who I am...and what I'm doing.

Yes, it's a bad day...that has spilled over into a brand new day...but it's all one continuous day now isn't it? It's one continuous day that I live...separated by moments of broken silent sleep. Yes, I know this isn't the first bad day...and definitely not the last. I know I'm not the only one. I know there are some who have had much worse days. I know all of these things...but it still doesn't stop the pounding frustration in my head.

It's 2:11am and I really wish her pancreas would just work already. I just wish I never knew what this pounding feels like. I wish I could just sleep.

I feel like that tiny droplet of tears right now...trying to hold on...trying to stay whole...but I've fallen...I've fallen off the edge and the only thing I've left behind is a darkened memory and echos of this pounding day.