Friday, June 28, 2013

The Great check or not

Over the past few days, I've read quite a few "discussions" online about whether or not to test your diabetic child at night. Parents of children with diabetes are a passionate bunch...we have strong beliefs, strong feelings, and strong naturally, when it comes to something like this...we all feel the need to put our two cents in.

I am all for expressing your opinions. I am all for listening to what you have to say and hearing about what your reasons are for checking at night or not checking at night. I am an information addict. From the moment Emma was diagnosed, something switched in me....I needed to know everything...absolutely everything there was to know about type 1 diabetes. It made me feel better I have all of that information in my back pocket. It was a comfort. It made me feel like I had some sort of handle on things and some sort of control over the situation placed before me.

My personal belief is that I wouldn't go more than 6 hours without checking Emma's blood sugar during the why would I at night? I feel like I would rather take the 5 seconds to check her number and see what it is and go to sleep feeling ok with where things are opposed to blindly trusting that the basal rates I have set are perfect and the number will stay even all night. Again, that is simply my own personal opinion.

The thing that I don't agree with is all of the arguing that I have read lately about this topic. I feel bad for the newly diagnosed parents happening across these debates and getting overwhelmed...or scared...or confused...or swayed...or misled. I read comments from some parents that come across as attacking those that choose to check during the night. They seem to belittle these parents by calling them paranoid...or OCD...or even crazy. These myself...that choose to check overnight, are left feeling hurt and like they need to defend their actions. On the flip side, I read comments from some parents that seem to attack others for not checking...saying that they don't get it, they aren't good parents because they are putting their child at risk, they are naive, they are blindly trusting their doctors or nurses and having too much faith in a disease that is more often than not usually unpredictable. These parents that don't check must be left feeling attacked and like everyone thinks they are ill-informed and that the world thinks they are horrible neglectful parents.

I wish everyone could take a deep breath....pause for a second before they choose to unleash their fury on the keyboard in front of them...and try....just try to see things from the other side. We are all in this together. We are all individuals fighting the same thing. We are all unique in our approach at fighting this. We are all doing what we feel is best for our children. We are all different. Instead of turning things into a debate causing hurt feelings and harsh words.....I think we should all have respect for the fact that we are doing this...we are all living it every single second of every single day.

I guess I just wish people would choose their words more carefully. Think back to where your mind was at during those first few's a scary place, right? Choose your words carefully...gently...kindly...because you never know who might happen to log online in that exact moment and wind up having your words be the first thing they find after being thrust into this life with diabetes.

Tuesday, June 25, 2013


Tomorrow will mark 5 years that my daughter has lived with diabetes. 5 years worth of needles being jabbed into her fingertips and 5 years worth of me stabbing more needles into her arms, belly, and thighs. 5 years of dealing with low blood sugars and high blood sugars...ketones and carb counting...bloodwork and doctor visits. Tomorrow will mark 5 years of creeping into her room during the night to check her blood sugar. 5 years of never getting a decent nights sleep. 5 years of  holding my breath as I stand at her bedroom door in the hand on the doorknob...silently praying that she will wake up.

Tomorrow will mark 5 years of being my daughter's pancreas. It's not a job I ever wanted. It's not a job I signed up for. It's not an easy job by far.

Tomorrow will mark 5 years of being welcomed into a brand new family with open arms...caring arms...arms that understand every feeling and thought on this journey. 5 years of getting support and giving support. 5 years of falling flat on my face in defeat and knowing that someone is always there to lift me back up...dust me off...hold my hand and dry my tears. 5 years of being loved by some that I have never met in person. 5 years of meeting truly inspiring individuals that motivate me to be the best pancreas I can be.

Tomorrow will mark 5 years of opportunities and experiences that otherwise would have never happened. 5 years of being a part of something bigger than ourselves. 5 years of learning what is really important in loving them no matter what.

Our lives changed forever 5 years ago tomorrow and I can honestly say that we are better people for it. I have witnessed incredible beauty and bravery. I have experienced life to the fullest...each and every day. I have seen my daughter overcome and obstacle that was placed in front of her at such a young age. I've seen her flourish. I've seen her find her voice. I've seen her comfort and support other children in this life. She was forced to grow up too quickly and forced to learn about her own mortality far too soon...but she has taken it all in stride. She has never once felt pity for herself and her situation. She has taught me what it means to have hope. She has taught me more in the past 5 years than I have learned in my entire life.

Tomorrow will mark 5 years of living in the same house as my hero.

Diabetes may have invaded our lives, but it will never control our lives. Diabetes will never win. I know this every single time I look in my daughters eyes.

So, while my heart is hurting tonight as I think of the past five years....I know that my heart is strong enough to endure anything. Five years ago diabetes scared the living shit out of me....when I open my eyes tomorrow morning I plan on scaring the living shit out of diabetes.

Here's to the past 5 years. He's to kicking diabetes ass. Here's to loving fully...laughing always...and taking the next step. Here's to living OUR life to the fullest.

Here's to my extra sweet girl.

Dear Mrs. DaSilva

Dear Mrs. DaSilva,

I've thought about what I wanted to write in this letter to you for months now. I've tried to come up with the right words and the right feelings to explain to you just how much you have meant to us this year. How do you tell someone thank you for keeping your child alive all school year though? How do you explain to them that you treasured every single moment you had with them...getting to know them as not only your child's teacher...but as a friend? How do you tell them that you appreciate every little thing they did...every time they monitored the blood sugar checks and gave her snacks for lows and even just the simple fact that they took the time to learn and know what a low blood sugar is? How do you express this feeling of overwhelming gratitude and love and appreciation?

I don't know how. I don't know the right words to make you understand just how much you impacted our lives this year. I don't think there are words available to explain. I've thought about it and tried to come up with "delicious" words like you have taught the class about this year. It's impossible though.

You have not only spent the year teaching my daughter math, English, social studies, and the usual grade 3 lessons....but you have opened her eyes to the big world of possibilities out there. You talked about stories of children in other countries...far off places in the world...areas where girls aren't allowed to attend school. You opened her eyes to this. You made her think. You ignited that flame of curiosity in her mind and inspired her to learn. You took the time to nurture her socially, emotionally, and spiritually. You listened to her...really listened. You made her feel like not only did she have a voice...but it mattered. You made her feel like she was important. You eased her mind in moments of shyness and uncertainty. You gave her confidence. You made her feel safe. You showed her humour. You encouraged her to not only be herself...but to accept herself and love herself for being exactly who she is.

On top of all of this, you took the time to learn about her diabetes. You learned what it all meant and what had to be done. You knew that activity and exercise and emotions and illness and stress and changes in routine ALL could and usually did affect her blood sugars. You helped me start her on the path to independence with her disease by not hovering over her and instead giving her the knowledge and the ability to call me herself with problem blood sugars. You were my partner in pancreating her this year. You were on our team from the starting gates. You eased my mind and comforted me by knowing that you could handle it. I knew that when I dropped her off for school in the morning at 8:30, that you had it took the reigns from me and you took were her pancreas for me until the bell rang at the end of the day. You returned her to me safely every single day this school year. There are no words available to express my gratitude.

You are an amazing human being. You don't know this, but I have referred to you as my angel this entire year....because it's true. You made my life easier and I can't thank you enough.

So, while my heart hurts knowing we won't have you in our daily life next school year....I do know that you will still be there. You will still watch out for her. You will still hug her when you see her on the playground or in the halls. You will be lighting up the minds of a whole new set of students...but you will still have a place in your heart for our kiddos this year. I know this. I know it because it's who you are. You are a truly kind hearted and caring woman and we were blessed to get to know you this year. You are a part of our diabetes team...our diabetes You lived get know.

Thank you, Mrs DaSilva. Thank you from the bottom of my heart for being exactly who you are. Thank you for the incredible year. Thank you for the laughs. Thank you for the love. Thank you for being you and for being an amazing role model for my daughter. We will hold you in our hearts always and forever.

Amy Ermel

Monday, June 24, 2013

Dark thoughts

Do you want to know what I think about sometimes? Do you want to hear about the true depths of despair that diabetes sends me to sometimes...usually late at night...when I can't sleep...or when I'm waiting to check her blood sugar before I lay my own head down to sleep? It's not pretty. It's not happy. It's not good. It's a dark and scary place that my thoughts go to sometimes...not all the time...just sometimes. So, don't worry...I'm fine...I just wanted to share the things that diabetes can do sometimes.

Sometimes I think about what would happen if diabetes won and I lost Emma. I think about how that would be. I don't have any other children. I'm not saying that it would make it easier by any means if I had other children...or maybe I am...I don't'm not saying that. Either way, I would be devastated if that happened. I just sometimes think about how if diabetes wins, I would no longer have my only baby. I would no longer have the chance of grandbabies. Do you know the tremendous amount of pressure that puts on me? I feel the weight of that possibility every day. The fact that at any moment of any day...I could make a mistake...or she could make a mistake...or her pump could malfunction...or some odd chance occurrence could happen....some random event....diabetes could take her...and I would be left with nothing...without a reason to be.

Sometimes I feel like people don't understand because they don't care because it doesn't effect them personally. Sometimes I feel like I wish I could be one of those people. I wish I could be ignorant. But then I realize that while ignorance may be's certainly no way to exist.

Sometimes when I'm tired and the noise of the day is gone and I'm left with these thoughts...these dark and sad thoughts, I feel like if I share them with others that they will think I'm crazy...that they will think I need help...that they will think I am unstable. But I don't think that's the case. I think that it's perfectly normal to feel these things and to think these thoughts. I think that a lot of us probably have dark and scary thoughts...but we don't talk about them...because we are worried what others will think. We shouldn't care...we shouldn't worry...we should just talk about them because it makes you feel better. It eases some of the heaviness from your mind and your heart. It feels good to talk about these thoughts and realize that other people have similar thoughts...and it's's another kind of proof that we are in this together...we aren't alone.

So, that's my dark and scary thought....that's my fear...that's the added stress that I put on myself. It sucks. It makes me cry sometimes...but I'm ok in spite of it all...I'm fine...and it's ok.

Friday, June 21, 2013

Thank you Animas

In no way, shape, or form am I being compensated for this particular post. I just feel the need to share my love for my daughters Animas Ping because after two years of truly deserves some recognition for the extent of its awesomeness.

I'm sitting here on the eve of a big activity filled fun day at school for Emma. In the morning they will be having a play day outside with lots of games, running, and....well...playing. In the afternoon, they will be taking a field trip to the local park where they will be let loose to run through the splash pad, climb the monkey bars, swing, slide, and enjoy the beautiful weather with their friends. It's a well deserved day off after a year of hard work and learning.

Normally, days like this packed full of activity and water play, would make me nervous since we have the added bonus of diabetes. I admit, I am a little nervous about low blood sugars...but nowhere near as nervous as I could be. Reason being is because of her Ping. The fact that it's waterproof makes me relieved. She can run and play and get wet with her friends and I don't have to worry about taking the pump off and trying to figure out how much insulin to inject her with...or when to reattach the pump for quick boluses to make up for basal she will be missing with it unattached all day. I don't have to worry about it at all. It will still work no matter how wet it matter if she chooses to stand directly underneath the bucket of water that tips over once it's full to the brim. I don't have to even give it a second thought. I can set temp basals to decide how much insulin she is getting to ward off any potential lows. I can check her blood sugar and give her a snack and bolus her from the meter remote. I don't have to make her stop playing to dig her pump out of her pouch to bolus from it. I don't even have to touch her pump! She can take her snack and go sit with her friends and I can point the remote at her and give her the insulin without horning in on her girl time. I can fully and completely flex my ninja d-mom muscle and slip in...bolus...slip out...her friends clueless as to what I just attention drawn to clue at all what just occurred.

The Ping helps me help HER just be a kid...just like her friends. She will get to run and play and have fun just like everyone else. To say that I am greatful for this little device would be the understatement  of my life. I love her Ping. I love the freedom that it has given us. I love the comfort that it gives me. I love how inconspicuous it allows her diabetes to be. Her Ping has become my greatest and most powerful tool in this life with diabetes. I can't believe we lived without it for the first three years.

So, thank you Animas. Thank you for the piece of mind you have given me and the freedom you have given my daughter. Thank you for getting it. Thank you for understanding what it's like to be a kid with diabetes. Thank you for knowing what's important and what matters to HER. Thank you for making our lives easier. Thank you for creating this amazing device that has changed our lives.

Tuesday, June 18, 2013

Trust is a Must

I think trust is a difficult thing. Be it in regular old every day life....or life with diabetes. As children, most of us trusted completely. When our parents told us that if we behaved, we would get to go for an ice cream treat after dinner....we believed them fully...I mean they are our parents, right? When our friends promised us that they would help catch us if we fell on the playground...we believed them...wholeheartedly. It didn't matter that this friend was just as small as us and just a kid too...we believed them...we truly believed that we would be ok.

My best friend, Mandy, and I used to leap frog over the cement posts that lined the driveway of the parking lot to our elementary school at recess when we were little. There were two or three posts that were taller than the our 8 yr old eyes, the poles seemed 10 feet tall. I remember being scared to leap frog over one...but I didn't want to seem like I was a chicken or weak. I stood there with my hands on the pole afraid to move. Mandy stood in front of me on the other side of the pole...with her arms outstretched...promising me that she would catch me...that I would be ok...that I could do it. In fact, she started singing that old Cyndi Lauper song, "....if you fall, I will catch you...I'll be waiting...time after time." I looked at my best friend and I believed her. I knew that she would catch me. I trusted I did it...and she caught me.

As we get older though, we have experiences in life that cause us to have a harder time trusting people. We may get hurt or betrayed in a relationship...or a friendship...or we may witness some hard reality out in the big bad world that makes it harder for us to trust so fully and so easily. We become guarded...jaded...more aware of the need to protect our hearts and try not to give our trust so freely.

Many of us were told at one point or another that we weren't good enough or we weren't doing a good enough job. Many of us had people doubt us and our abilities. Many of us were compared to others growing up and wound up feeling like we never could possibly measure up.

So, when you throw diabetes into the mix now...I think especially in the beginning, we doubt ourselves even more so. We feel like we can't do it because it's too's too's too scary and it's too overwhelming. We feel like we can't trust ourselves. We feel like we are standing at that proverbial pole...ready to leap frog over it...but frozen to the ground in fear...because there is no one waiting on the one to sing Cyndi Lauper for one we can trust so honestly and openly and freely...not even ourselves. The only thing standing on the other side of that pole is diabetes. And sometimes it feels like it's standing there singing something more along the lines of Tom Petty's "Free Fallin" and laughing at us...taunting us.

I think there comes a point in every D-parents life where they realize they must trust in themselves. They must dig deep and truly, honestly, openly, and freely believe in themselves and their ability to do this. We must find our inner Cyndi Lauper and really believe it...believe in ourselves...because at the end of the day, we really are the only ones on this planet that know exactly what our version of this life with diabetes is like.

Monday, June 17, 2013

In a Perfect World

In a perfect world, I wouldn't be a D-Mom. In a perfect world my daughter would not have type 1 diabetes. In a perfect world there would be no such thing as type 1 diabetes.

I would be married and have lots of little children running around...laughing, playing, driving me crazy with their constant chatter. I would live in the same city as my parents and my children would grow up with them in their lives every day. I would have a job as a teacher...because I love children. Or maybe an artist, because I love to draw and paint and create. Or maybe a writer, because I love the feeling that I get inside when the words I choose...and the order I choose to put them in....makes sense to others...and makes them feel understood...and not alone.

I would have a dog and a cat. I would take my children to the park or the forest or the beach every weekend. I would take them on play dates and to birthday parties and to gymnastics and soccer lessons. I would kiss them and ruffle the hair on their heads as I turn and walk back to the car without a second thought or worry as to whether or not they would still be alive when I returned to pick them up.

I would serve them hot dogs at the picnic table during the summer with Hawaiian punch to drink. I wouldn't count carbs or measure anything out. I would slice up watermelon and laugh as they held the rinds up to their faces like they had giant green smiles. I wouldn't wonder what was happening inside their little bodies at every meal time. I wouldn't know what it's like to stab them with needles every single day. I wouldn't squeeze blood out of their fingertips multiple times a day. I wouldn't know what insulin smells like or how annoyingly and yet effectively sticky skin-tac actually is. I wouldn't hate fact, I would love them...I would love blowing them in the backyard and watch my children chase after them in the summer sun. I wouldn't know what it's like to truly be sleep deprived. I would get a solid 8 hours sleep every single night. A peaceful and restful sleep. A rejuvenating sleep. I wouldn't need two cups of coffee and 30 minutes of being awake in the actually feel more like a human and less like a zombie. I wouldn't know what it's like to feel helpless. I wouldn't know what ketones are and how insanely difficult it is to manage the balance of low blood sugars and ketones and illness.

In a perfect world, I would love and be loved and there would be no one saying no and nothing standing in our way.

Alas, it's not a perfect world. There is no such thing as perfect. It's simply an empty word full of unreachable expectations and heartache. Perfection in the ideal realistic sense of the word is honestly whatever you choose to make it.

My life may not be this fairy tale I described...but my life is perfect in it's own way. I have a husband that loves me and a daughter that loves me. We laugh...we work hard...we live as perfectly as we can.

Friday, June 14, 2013

For those that have had a bad D day

While perusing Facebook, I couldn't help but notice quite a few D-Mom's are struggling tonight. They have been battling numbers today...feeling like they are losing the fight...and the frustration is taking over  their exhausted minds. So, I just wanted to write this post for fellow blood sugar warriors.

You matter. Yes,YOU! You are unique and important and beautiful. You are patient and caring and supportive. You are loving. You are a fighter. You stand up for what you think is right even if at times you feel like you are standing alone. You love your children more than anyone else on the planet and that means something...that matters. You give your children a sense of safety and security. You are their rock. You are their soft place to land at the end of a hard day.

You deserve a moment to be pissed off at this earned that right the second you found out your life was forever changed. You are allowed to be mad sometimes. You are allowed to hate a less than ideal blood sugar number. You are allowed to scream and yell and cry. You are allowed to feel defeated for a second....but only a second...because you will then realize that you can not be are a are a D-Mom and defeat is not an option. You are allowed to feel angry...jealous...overwhelmed. You have the right to tell someone at some point in your day that




You are allowed to feel however it is that you are feeling at any point in your day. It's ok. Did you hear me? IT'S OK! Feel it...let it out...let it go...and allow yourself to feel it!

I love a good cliche, but man when I am pissed off after a hard day of fighting the numbers...the last thing I want to hear is how the sun will come out tomorrow. I'm pretty sure little orphan Annie had no experience being a D-Mom. So, know that I get it...I hear it...I feel your pain and your frustration and your exhaustion.

I feel it because I live it too.

So, take this pissed...cry...and close your eyes on this madness for a moment. Know that I believe in you and I know in my heart that you can do it. I BELIEVE in you...yes, YOU! Sleep well tonight and let's take another crack at this bastard of a disease tomorrow.

Wednesday, June 12, 2013

What's it like?

Do you know what I think is weird? How I really have no experience parenting a child that does not have diabetes. I mean sure...Emma wasnt diagnosed until she was 4, but still. It wasnt enough's never enough time I suppose.

Sometimes I wonder what it's like. I wonder what it would be like to have a child that does not have diabetes. Would life be easier? Sure...most definitely. But would it be....better, somehow? No, I can't say that I think it would be. I wonder what it would be like to have another child...for Emma to have a  sibling without diabetes. Would Emma feel different? Would she be different? Right now in her life...she is the only child in the house...the only one with type 1 diabetes. There is not a constant in her face reminder that her childhood is different.

I wonder what it would be like to give someone food without measuring it...without counting the carbs in it. I wonder what it would be like to leave the house.....and just




not make sure I grab the meter and snacks for in case of low blood sugars...and the glucagon kit....and my cell phone...and...and...and....sigh.

I wonder what it would be like to never utter the words bolus or site change or check your finger. I wonder what it would be like to send my kid off to school...or gymnastics...or a birthday party...or a sleepover...and not have to pre-plan everything...and not have to wonder and worry if she is going to have a low blood sugar and die. I wonder what it would be like to go to bed at night and....just...sleep.

Mostly I wonder what it would be like to live from this burden...this inconvenience...this annoyance...this weight upon my shoulders....this pressure...this responsibility to keep her alive every second of every single from this insanity.

I imagine that it would feel light...and airy...and calm.

I imagine that it would feel sweet...ironic choice of words and all...but true, nonetheless.

Sunday, June 9, 2013

I cried

I cried today. I cried that uncontrollable cry...that kind where no noise escapes your lips...but the tears fall from your eyes without stopping. I was surrounded by hundreds of people. I sat on a picnic table bench and I cried. I was embarassed and wiped furiously at my eyes. I felt stupid for crying. I felt like I was being ridiculous...I felt weak.

We had just completed our fifth time walking in the TELUS JDRF Walk for a Cure. Five times we have done this. Five times we have participated in this event. It was a full circle moment for me to even be there because it was held at the exact same location as the first walk we ever took part in. Five years have passed and as I walked along the route, it gave me time to reflect on how much life we have lived in the past five years. I saw a little girl walking beside us...holding her Mom's hand and I was transported back to our first time. I could feel Emma's little four year old hand in mine. I could feel my chest tighten as I remembered that day and how much it moved me to be with the other people much it meant to me to be with walk with fight this disease with them. I looked over at my extra sweet girl and blinked back the tears as I saw her now 9 years old...walking with a friend from school that came along to show her support. I saw Emma laughing with her...smiling...walking along the much life has been lived in these past five years.

I saw other people's eyes...some had that look of experience and exhaustion. Others had that all too familiar look of new....sadness...worry...fear of the unknown that becomes commonplace in this life. I walked along and I felt it...I felt the connection and the fight. Young and old, new and experienced, parent and child, grandparent, friend, neighbour, volunteer.....we all walk. We all walk together towards that proverbial finish line and one day our steps will take us across the real finish line.

I took the same "finish line" picture with my girl that we always take. I got her some lunch and sat down on the bench. When Emma and her friend were finished eating, they went off to check out some of the booths and games set up. After a few minutes, they returned and Emma's friend handed me $20. She said, "this is for a cure for Emma." Then she told me that she had written on a sign "I wish for a cure for my friend." The girls smiled and ran off giggling back to the games area. I sat there grasping the $20 in my hand and the tears began to fall. I couldn't help it. This little girl touched my heart. She came out to support her friend and she's only 8 years old. There is something incredibly awe inspiring and unique about the way kids are. They don't look at things the same way that adults do. Somewhere along the line in growing up, a lot of us lose that...and it makes me sad. But kids, ahhh kids look at things for what they are. They have a friend...they love them. They have a friend with a disease that they don't quite understand fully...but they know that it involves needles and blood and sometimes having to take a break...and having to push buttons on her pump everytime she eats. They have a friend like this and it doesn't doesn't change their feelings about this friend. It is what it is. They accept it and they don't let it change how they feel. I love that.

So, there I sat....tears pouring down my face...embarassed at my inability to "keep it together" and up walks a friend of mine. She asked how I was and put her arm around my shoulder. When I explained about Emma's friend and her kind gesture, my friend got tears in her eyes...she got it...she understood...she felt it too...she felt exactly what I was feeling in that moment in time...and she handed me a Kleenex.

THAT is what this day was about for me. This fifth time walking was about friends. Friends who are there for you no matter what...friends who love you and support you no matter what...friends who get you...friends who really truly get you and will take that second to put their arm around you and look at you with tears of understanding in their own eyes.

Friends. That's what this day was about for me.

Friday, June 7, 2013

Shortest and most accurate blog post ever

INDISPUTABLE FACT: Type 1 diabetes is NOT caused from eating poorly and it can NOT be reversed by any type of diet.

So, you know....spread the word and educate the ignorant before they tell someone else otherwise.

You're welcome.

Me time

I actually had a moment tonight where i didnt have anything I had to do. I cant remember the last time I had free time to myself to do whatever I wanted. It felt nice. So I chose to spend my time writing. Just writing. Writing about whatever happened to come into my mind at the time. So here is what I came up's not finished...but it is finished for this moment.

She whispers softly to the creature high above her in the trees...muffled mumbles of a sleeping child. Squinting against the morning sun, she  can make out the tiny black eyes staring down at her...flittering back and little back marbles. She slowly raises her head from the bed of moss beneath the tree...everything is throbbing...pulsing...keeping tempo with her own heartbeat. How long has she been here? Where is here?

The sky is like nothing she has ever seen before. It looks like a child's watercolour painting hung up on some proud parents refrigerator door. Swirls of blue and green bleeding seamlessly into purples and yellows. It's beautiful and yet...wrong. It's the world around her is still fast asleep and she is all alone...except for the curious spy in the branches above her head. There are no homes on the other people...there's not even a road cutting through the land before her...just emerald green fields dotted with enormous trees filled with leaves of every colour imaginable. Again the thought of a child's watercolour painting strikes her. She giggles at the thought of being trapped in a painting...a child's painting.

She can't remember what happened or how she got here...she can't even remember her own name or if there is anyone that might be looking for her...wondering where she is and when she will be home...or if she even has a home. She's thirsty...her body aches with every small movement. Each blink of her eyes feels like a jackhammer pounding in her mind.

The spy from above...her new..and only friend...spreads its wings and flutters down through the thick branches. It circles her head seeming to check her out...and decide if she is safe or not. She whispers again to her new friend...this time asking where water could be. Her throat feels like it's on hot sparks of pain. Her mouth feels stuffed full of cotton and her tongue lays limp...useless. She whispers her question with no hope for a's a bird and birds can't understand...birds can't reply. Those black marble eyes shine with delight at the sound of her voice. Could that be? Could this bird really understand her?

Her new friend takes flight and she notices each individual feather on its wings. They too seem not real...from another imaginary world thought up by a child...lying on the floor of their bedroom painting the afternoon away on a rainy Sunday. The bird seems to fly almost a's feathers shining brightly in the sun. There is no fluidity to its's body seems to slice through the air in rapid flutters rather than smooth gliding motions.

She finds herself following the bird across the field and to a dense cluster of those unique trees. There has to be water near...don't animals instinctively know where water is? She shakes her head in embarassment and can't believe that she is actually putting all of her trust in a bird...a bird from another world, at that. As she stepped into the forest, the smell hit her all at once....she could smell the water. She raced ahead...leaping over rocks and fallen branches...her bare feet landing softly on the cushioned moss covered ground...the air rushing past her face and causing her long brown hair to fly out behind her like a cape. The smell was sweeter than anything she had ever smelled before...the scent filled her nose with delight...causing her to pick up the pace even more. She wanted to taste the dive right in and gulp the fragrance around her in mouthfuls.

Her mechanical bird friend kept pace with her and as she stole a glance his way, she noticed he was smiling. Birds can smile? Well, if they can understand me and lead me to water....then why not? This bird can smile.

Thursday, June 6, 2013

What the Walk means to me

This weekend we will be participating in our 5th JDRF Walk for a Cure. Ironically enough, this year the walk is being held at the same location that it was that very first time we walked. It's sort of like a full circle moment for me.

I remember how I felt that first year proud I was...and yet how sad I also was at all of the other families out there walking. I was angry to have to now be a part of their now be a part of them. I wished that I could have just continued on about my merry way without ever having known a walk like this even existed. However, there I was...walking...a part of of them.

I remember when I first heard about the walks and how I didn't really understand the point. I mean how is walking going to make a difference? How are a group of people taking a stroll through the great outdoors going to do anything when it comes to diabetes? I didn't get it. I didn't understand why it was something people did or why there were teams or why t-shirts were a big deal? I didn't understand. If I'm being perfectly honest, I thought it was a little silly. I thought that the rest of the world could really care less that we were out there walking.

Fast forward to now.

Here we are just days away from approaching the starting line again. I know what it means now. I know how important the walks are. I know how much money is raised for research for a cure. I know the effort that goes into pulling this off. I know the awareness it brings. I know the bonds that are formed between people walking along the trail...the unspoken bond that flows between us...around us...through we walk. It's a light that shines so brightly that we are only able to feel it. We feel it in our hearts...our minds...our souls....with each step we take. We feel it each time we lock eyes for but a moment with another person with diabetes living in their home. We feel it as we see other children testing their blood sugars, drinking juice boxes, or taking their pumps out to bolus. We feel it. We feel it....because it's's's raw...and it's honest.

For me, the walk is mostly about this. Being a part of something bigger than us. Spending part of the day with people like me...people like my daughter...people that get it. The metaphorical walk we take together is represented in real life...with real steps...on a real life physical journey.

Yes, we reach a finish line on this walk. Yes, it makes me cry every....single...time. Yes, it means more to me than just finishing the JDRF's an in your face reminder that one day we will reach that actual finish line...the REAL one...and that to me is worth every single step along the way.

Tuesday, June 4, 2013

My little secret

Wanna know a little secret?

Sometimes I feel like I am the worlds biggest failure at being my kids pancreas. Sometimes I feel like  anyone else...hell, EVERYONE else...could do a better job than me. Sometimes I feel like I am totally and completely screwing up her life and it will be all my fault if she winds up having complications when she's older. Sometimes I feel like I have absolutely no idea what the hell I am doing.

Sometimes I guess at the carbs in her food instead of looking them up because I'm too tired to find the iPad and search for it. Sometimes I have a little argument with myself at night while I am lying on the couch....I should go check her blood sugar. I should go check it because she has been running high for the last couple of days at this time and I should go check it...but I don't want to...I don't want to get up from my comfortable spot...I don't want to get up and grab the meter and put my stupid headlamp on and walk all the way upstairs to her room and check. Usually the argument lasts for a good few minutes until I finally give in and get up and go check her...because I have to...I know I have to...even when I don't want to.

Sometimes I leave her at a slightly higher number than I normally would at night before I go to bed...because I I just want to have that cushion...that slightly higher number that gives me piece of mind that she won't plummet in the night and she will wake up in the morning. Sometimes I just want to sleep.

Sometimes I swear at the number on the front of her...because the frustration is just too much to control and it slips out...and I don't care that she hears it...I don't care that she sees me get pissed off at the number...because ya know what? Diabetes is going to piss her off in her life many times too, I am sure.

Sometimes I read posts on the internet from other D-parents about this perfect a1c they just got or this perfect blood sugar they got after feasting on pizza...and I want to slap them. I read about how they have perfect numbers and their child never cries over site changes and their child skips joyously into the room on bloodwork day and willingly hands over their arm for the technician to jab the needle in to draw the blood from. They smile and giggle and chat about school with this tech...and when it's all done they hug and everyone gets a gold fucking star. Sometimes I read these things from other D-parents and it makes me want to smack them in the head....just a little bit.

Sometimes I feel like a big fat failure. Sometimes I feel like I have no idea what I am doing. Sometimes I feel like my kid is going to hate me when she's grown.

So, that's my secret....and it's ok...I know it's ok to feel this way sometimes...I don't feel this way ALL of the time...and that's ok too.

Monday, June 3, 2013

Pajama shirts and cures

I find it strange how sometimes random objects have a huge impact on me. I was just sitting here folding Emma's clean laundry...putting the clothing in stacks on my couch...shirts...dresses...pajamas. As I was folding and the pajama stack grew taller, I found myself noticing that nearly every single one of the shirts in her pajama pile is a diabetes related shirt. Sure, there are a couple of fun kid type pj's...monkeys playing soccer...purple kittens...but the majority of her pj's are fun brightly coloured pants that we pair up with diabetes shirts. They are shirts that we've acquired over the years from various JDRF events, diabetes friends, and even one from World Diabetes Day.

I sat there staring at this pile of daughters pajamas...things that I have seen her wear countless times. Things I've seen her wear as she is standing there brushing her teeth before bed. Things I have seen her wear as I wrap my arms around her and kiss her goodnight. They represent something that should not be...something that should not be a part of her life. These shirts hold memories of moments in our lives...walks that we have participated in...snapshots of our life with diabetes.

I hate these shirts.....and yet I love them. I know that must seem bizarre...but it's true. These shirts are a tangible piece of what happened to her...what we've been far we've come. Not only do they show up in my laundry basket every week....screaming DIABETES at me...but they seem to be getting smaller...and the years go by. They aren't shrinking from the dryer though...they are shrinking because she is growing...she is getting bigger...older...and these shirts are becoming real life memories of just how little she was...just how young she was when diabetes first arrived in our house.

I love these pajama shirts because they remind me just how tough she is. She lays her head upon her pillow every night...sometimes with one of these shirts on her back...and she sleeps peacefully...she dreams...she hopes...she lives. She is a kid. She is a normal 9 yr old little girl that giggles over Phineas and Ferb episodes, blushes a bright beautiful red when you ask her about a boy that she has a crush on, and talks so much and so quickly that sometimes it makes me wonder just how many words she says in an average day. I look at her and I don't SEE diabetes. I see HER. I see a regular little girl with potential and intelligence and humour and bravery and strength. I see a little girl....MY little girl...who just so happens to be wearing a diabetes awareness shirt...because it's a part of her life...but it is not ALL of her life.

So, I keep washing these shirts...I keep folding them...I keep noticing them getting smaller...I keep putting them in her dresser drawer...and I keep seeing them on her. I know one day I will look at them piled up on the couch around me...and I will choose to hold onto as a keepsake...a memory of our days with diabetes. I will set it aside and keep it forever....taking it out sometimes...perhaps on her diabetes anniversary...and I will close my eyes and hold it to my nose...smelling it...and breathing in the memory of what we endured...what we lived. I will let myself have that moment to remember...and then I will fold it...and put it away...forever...and I will relish in the days of now...because she will be cured.

Sunday, June 2, 2013

Dear Emma

Dear Emma,

I'm writing you this letter because I want you to know how proud I am of you. We have been through a lot so far in your 9 years of life. We've had diabetes along for the ride for nearly 5 years now and it has been far from easy. I want you to know that I am proud of you. I'm proud of how you are choosing to live your life. I look at you sometimes and I can't even believe that I get to be your Mom. You were only four years old when you were diagnosed and I honestly have no idea how your little four year old mind was able to process it all. I am in awe of you on a daily basis....but I still haven't been able to wrap my head around your ability to accept your diabetes at such a young age. You accepted it and you took it at face value. You chose to make a difference. You chose to stand up and do your part to help find a cure. You chose to stand instead of sit idly by and feel sorry for yourself. I can't say that I would have been able to do the same at that young of an age.

As the years go by, you are becoming more and more independent and taking on more responsibility with your diabetes. We are a team now. I am trying to be ok with loosening my grip on diabetes and letting you hold the reigns more often. It's hard for me because I know that unless a cure is found, you will have to hold those reigns for the rest of your life. For me to have to hand that over to you, ahhh it's indescribably difficult. I struggle with wanting to help you forever...wanting to do it for you..wanting to carry the weight of it all you don't have to. I struggle with wanting to make your life easier...with taking it all on for you. I struggle with it...because I am your Mom...and I love you more than anyone or anything else in this world. I am supposed to help you and make it easy on you and make it all better.

I know in my heart though that I can't. I can't do it for you forever. I can't because I would be doing you more harm than good if I did. I would be holding you back. I would be stopping you from reaching your full potential and that is something that I refuse to do. I would be leaving you out there in the world without all of the tools you need to manage your disease. Diabetes was thrust upon us with no warning and i had to learn how to be your pancreas in a matter of days. I had to learn how to do it as we went along. I want to give you all of the knowledge you need to manage it and i want to give you all the time you need to learn. You have a greatness inside you...a greatness that shines so bright and I know if I were to keep my grip on diabetes forever...your greatness would be lost. You have a fierce independence that makes me proud. You are strong willed and you have strong opinions and you speak your mind. You stand up for those that need help. You stand up for yourself. You are going to make a difference in this world and I know that you will succeed in whatever it is you may choose to do.

Please know that even as I loosen my grip on those reigns, I will still always be there for you. I will walk beside you to the ends of the Earth. I will support you. I will be that shoulder to lean on whenever you need me. I will teach you all that I can. I will be your partner in pancreating if you need me. I will be your friend. I will dry your tears and cheer you on. I will be whatever you need me to be. Please have patience with me as I let you soar. Have patience and know that I love you.

I'm proud of you. Not just because of what you have done in your life with diabetes.....but rather because of who you are as a person. I believe in you. I trust you. I love you more than hearts and stars, my extra sweet girl.