Saturday, November 30, 2013

First Shirley Temple

When I was a kid and my family would go out to dinner together, I would always ask my parents if I could order a Shirley Temple to drink. I remember thinking it was fancy and I absolutely loved the little umbrella that the bartender would stick in my glass for me...along with a couple of cherries or pieces of pineapple. I remember feeling grown up drinking I was cool because I didn't have a drink that came in some little kids plastic cup with Care Bears on it. I would sip it holding the heavy glass carefully in my little kid hands...not wanting to tip it over or spill a single drop. It was sweet and fizzy and I loved it.

Seeing as how Emma was only four years old when she was diagnosed, I never really had the opportunity to order her a Shirley Temple of her own when we'd go out. I always stuck to milk or water or sometimes juice. Once she was diagnosed, I remember how scared I was to go out to eat at a restaurant. I was afraid of not knowing the carb count in the food she ate, let alone any drinks. I would research ahead of time on the Internet and try to find the carb counts before we left just to make it easier on me. I focused on the food...kept it simple...basic typical foods that I knew she'd probably order like chicken nuggets or pizza. She ordered water to drink...every time...partly because she preferred water...partly because she didn't really know what she was missing out on when it came to soda or fancy drinks...and partly because I think she knew how hard it was for me to figure out the carbs in those special things.

Well, 9 years old...Emma had her first Shirley Temple ever. 5 1/2 years into this life with D and she finally had the chance to partake in something that many kids do in their lifetime. I didn't know the carb count...I didn't bother asking the waitress if she knew what it was...mainly because I didn't want to have to go into the big explanation of "my daughter has type 1 diabetes...I need the carb count because...yada yada yada..." I just didn't want to do it this time. So, I guessed....I thought back all those years my little self...sipping the sweetness...remembering how good it was....and I guessed at the carbs. I gave her insulin for it and for her meal....and we sat there as a family enjoying our night together. I worried and second guessed myself on the carb count....but I smiled as I watched her own small hands holding that glass...sipping her Shirley Temple slowly...enjoying the taste...savouring the sweet fizziness.

I smiled because it was a sweet memory for me relived in my daughter. Sure it was just a drink...a silly little kids drink...but to me, in that was so much more. We've come a long way in this life with diabetes over the years. I'm not afraid anymore. I'm not afraid to try. I'm not afraid to go with my gut and trust that in the end everything will be ok because I know what I'm doing and I know that I can fix any mistakes or wrong guesses if need be. I know that I can do it...and I'm not afraid. I stick needles in my kids fingers, arms, belly, and legs every single day...many times a day....and if I can do that without flinching....I can do anything.

Tonight, that Shirley Temple meant the world to me. Her smile while drinking it and her comments of how good it tasted meant the world to me.

By the way, I'm a damn good guesser sometimes....because she was a decent 8.8 two hours after she drank it.

Tuesday, November 26, 2013

Diabetes Milestones

Do you ever sit back and think about how weird our lives are? I mean seriously...the things we do every day with diabetes thrown into the mix are just bizarre. Needles and blood and carbs are just as normal and commonplace in our day to day lives as things like brushing our teeth, washing the dishes, and vacuuming the living room. It's weird.

The things that most parents remember and celebrate in their children's lives seem so.....different to me sometimes. Don't get me wrong, I partied like a rock star and danced around the house with Emma when she learned how to go on the potty. But I mean the things that we as D-parents celebrate are just...different.

For example, the first time Emma gave herself an injection, I was nearly in tears because my heart was overflowing with pride. When she figured out how to change basal rates on her pump and set temp basals, I found myself giving her a high five and twirling her around the room. Today, I was out  running errands and Emma called me on my cell phone. She informed me that her blood sugar was 6.5.....which is typically a pretty good number for her. I was about to ask her why she felt the need to leave class to call me and tell me about a good number, when she kept talking....she told me how she was 9.8 at lunch...just one hour and forty-five minutes earlier. She said that she called because she thought that was a bit too big of a drop in that amount of time and she wanted to make sure that she should bolus for the full amount of carbs in her afternoon snack. She told me how she didn't feel low...but she just wanted to double check because of that drop. Her snack had 28 carbs in it and she suggested that she only bolus for 18 just to be on the safe side because she was about to head outside for recess after she ate. Yea....I made a fool of myself dancing a little jig in the store and telling her that I was proud of her and that I think her plan sounded perfect and to just go with it.

It's a different kind of pride. It's kind of hard to explain to someone really unless they live this life too. I mean how bizarre to get excited and proud over a phone call like that, right? How can it be the same thing as hearing your kid read to you for the first time? How can it compare to that moment when you are running along behind them holding onto the seat of their first bike...and you take a deep breath and....let go....watching them ride off down the more milestone completed in their lives? It can't compare. It's not the same. It's on a whole different level really.

When you see your child reaching a milestone in their life with diabetes, it's such an overwhelming feeling of pride....because you are seeing them get one step closer to becoming masters of their own life. They are learning one more thing to keep themselves keep themselves alive. It's one more step towards more skill they have more piece of knowledge that they will carry through life with them. So,'s means's a victory of living.

It's seeing that they can do this....they will do this...and they will be just fine.

Wednesday, November 20, 2013

Words that hurt

I read something on the internet tonight that hurt my feelings. I know it shouldn't....because it was simply one persons person I don't person who was just sharing their thoughts...and everyone is entitled to share their thoughts. But it still hurt my feelings to read the words nonetheless.

It was an adult living with type 1 expressing their frustration at parents of children with type 1 whining about this disease and complaining about it...when really it's not their disease...and one day they will be able to let it go...because their children will grow up...and they will be the ones dealing with it for the rest of their lives...or at least until a cure is found.

I'm happy this person was able to let their frustration out...but it stung to read their words. I know without a shadow of a doubt in my mind that if it was possible, I would take this from Emma. It's agonizing to know that it's her disease...that there's nothing I can do to fix it...there's no possible way for me to take it from her. It's a heartache that is indescribable. I've spent the last five years trying to keep her healthy...trying to do it right...trying to be the best pancreas I can be for her because I want her to live a full and healthy life. Even though, I know it's ridiculous to feel it, sometimes the guilt is so overwhelming that it is almost paralyzing. I know I did nothing to cause her to get this...but she came from me. I carried her inside me for 9 months...I gave birth to her....I gave her life...and this happened. How can you NOT deal with guilt every once and a while? When her BG's are high because I screwed up guessing on the's my fault...I caused the high...I am responsible for the damage that high and all of the other highs may do to her am responsible for it. The pressure to get it right is insane, to be honest.

I wonder if this person has children of their own. I wonder if they know what it feels like to have your heart walking around beside you every day...out there in the big bad world...carrying a heavy weight...this disease...all that it their tiny little four year old body. I wonder if this person knows what it's like to be the one responsible for keeping them alive...the one who is stabbing them with needles day in and day out...needles filled with a "medicine" that they need....a "medicine" that if miscalculated, could kill them. I wonder if this person has ever thought about things like that...if they've ever tried to put themselves in another persons shoes...a parents shoes...and see just how tortuous it is to hold that precious life in your hands and see the tears fill their eyes and know that you are about to inflict pain on them and you don't have a have to do have to because you want them alive.

I don't know the answers to these questions because I don't know this person. I am sure they were just venting and releasing some frustration...and that's's good actually...I'm happy they had an outlet to let it go.

But the words still stung me. I'm disappointed in myself for letting it get to me.

Monday, November 18, 2013

Miles to go before I sleep

Do you ever sit there and think that maybe this night I will go to sleep...I will rest my weary head...I will close my eyes to the day and wake up the next morning and it will all have been just a bad dream? It will all have been just a really long...really intense...really stressful and vivid nightmare?

I do.

Even though it's been over five years now, I still think that sometimes. Maybe it's that flicker of my old self still screaming in the back of my mind. Maybe it's her. Maybe she has been screaming so hard for so long that now her voice is but a mere whisper...and I only hear it randomly...when the day is done...and my ears are filled with the silence of my own bedroom.

Do you ever feel like you just can't do it anymore? Like you'd give anything to be able to just wave the white flag in defeat and lay the dirt...and fall asleep as the tears fall from your eyes. A sigh escaping your lips. You're so very tired...and all you want to do is just lay there in a heap and never move again?

I do.

Some days I feel like I have been doing this so long that I don't even know how to live without it. I don't know how to have a day without diabetes anymore. I don't remember what it's like to just go to sleep and not think twice about my child sleeping in the next room. I don't know what it's like to send her off to school without diabetes along for the ride. I don't remember what it's like to prepare a meal and just give her food without measuring it or counting the carbs or giving her insulin first. I don't remember what it's like. It's been so long. And does that poem go again? You know, the one by Robert Frost? "...The woods are lovely, dark and deep. But I have promises to keep, And miles to go before I sleep, And miles to go before I sleep." 

I have miles to go before I sleep.

And yes....these woods ARE dark and deep.....

...but they're also lovely...

Sometimes I have to keep reminding myself of that fact. Sometimes I lose sight of the loveliness. And that's ok. 

Wednesday, November 13, 2013

What WDD means to me

Tomorrow is World Diabetes Day. It's a day to advocate...commemorate...celebrate...and honour the birthday of Sir Frederick Banting. I have seen countless posts online today from friends and members of my diabetes family. Posts lighting up my screen a beautiful heartwarming shade of blue.

Tomorrow means so much more to me than just wearing blue...or spreading awareness...or sharing my experiences in this life. (All things which i will still be doing.) Tomorrow is a day that makes me realize how lucky I am. It's a day that makes me realize how much all of the people in my life mean to me. My fellow sisters in this life...the hands that hold me up...the smiles that heal my heartache...the spirits that ease my burden and help me to carry on. Tomorrow is a day for me to honour them...thank them...let them know just how much they mean to me and how much I appreciate what they do for all of our children. Tomorrow is a day to make sure they know....truly know that what they do matters and is noticed and appreciated. Tomorrow is a day to embrace them and look them in the eyes and let them feel the gratitude. It's a day to somehow find the words to let them know that I would be lost without them...that they are the sisters I never had and always wanted...that they are my heroes...that I admire their strength...their courage...their tenacity...their humour...their guidance, advice, kind words, knowing glances, simple yet silent hugs filled with understanding. Tomorrow is a day to make sure they believe in themselves. Tomorrow is a day to turn the mirror on them and let them see what I see when I look at them.

Tomorrow is a day to be thankful for all of my adult friends who have type 1. It's a day to let them know that their mere presence in my life is something I hold dear. I am blessed to have them in my daughters life. They are role models. They are friends. They are beautiful proof that this disease will not stop her. They are inspiring and I admire their incredible strength and am honoured to be a part of their families.

Tomorrow is a day to hug my daughter. It's a day to hold her close...breathe in her joy...her bravery...her laughter...and her love. It's a day to be greatful for the small moments...each ticking of the clock is a gift and sometimes life gets in the way and I forget that. Not tomorrow.

Tomorrow is a day of love for me. It's a day of gratitude.

Tomorrow is a day that matters to me.

Monday, November 11, 2013

Pretty little package

I think a lot of times people try to wrap diabetes up in this pretty little package and tie it with a nice neat perfectly knotted red bow. We try to decipher the impossible and we sometimes get lost in a swirl of numbers and circumstances. It's been five years now, and I am not an expert....not even close, actually...but I do know a couple of things.

Diabetes will never fit in a pretty little package. It will never be something that can be explained in certainties and black and white answers. There is sometimes no logic or reasoning to the number...the outcome...the problem. It is what it is. If we spend our days getting caught up trying to figure out why that one high blood sugar occurred that one time she ate that order of fries, we will wind up driving ourselves crazy.

It's all about learning how to roll with the punches and make it work in that gray area of guessing at carbs and predicting how activity and insulin will affect the blood sugar. We have to teach ourselves to be ok with not knowing why a high blood sugar occurred. We have to accept that sometimes shit just happens. What worked for you one time last week, can have a totally different outcome today.

Diabetes isn't pretty. There's the pen needles masked in brightly coloured cases, the insulin pumps with fun skins of every imaginable pattern and colour, the meter cases shaped like frogs, and pump pouches with flowers or rainbows or superhero patterns on them. We try to make it pretty. We try to make it less....medical. But it's still a needle beneath that pretty packaging. It's still a medical device that we use to keep ourselves or our children alive. Beneath it all, no matter how much we try to make it pretty....diabetes is ugly.

It's so ugly that sometimes it makes our thoughts ugly too....sometimes it makes our spirits ugly...our mood ugly. And you know what? That's ok! It's ok to get pissed. It's ok to be sad. It's ok to see that ugly number pop up on the meter and let an ugly word fall from your lips in frustration. It's ok to cry. It's ok to let whatever ugly feelings you are having just pour from your heart. It's more than just's good's healing. If you leave those ugly feelings and thoughts trapped inside, they will fester and grow and become too heavy a burden to bear. So, let them out. Unleash the ugly when you need's ok.

Don't ever forget though....that once the ugly thoughts and feelings are out of your head, you just might find yourself seeing the beauty once again. The smile on your child's face...the laughter that escapes from their lips...the hugs...the embrace of a true kindred spirit who knows all about the ugliness. Let the ugly out....but always keep an eye out for the beauty when your done.

Sunday, November 10, 2013

I wonder too much

I wonder what it will be like when a cure arrives. I wonder if I will find out from a breaking news story on TV....or a call from a fellow D-Mom...possibly a call from Emma's doctor. I wonder if I will even believe it...or if I will be jaded and leary about the whole thing. I wonder how it will work....will we all march down to the hospital and wait in line to receive it? Will we find ourselves standing there surrounded by hundreds of our friends...our family...our people? Will we cry...hug....scream with joy and in line bursting with excitement? Will we stand there shock...overcome with emotion that renders us silent?

I wonder how it will feel to stand there waiting for our turn. Will they call our name? Will we have to take a number? Will we have to make an appointment first?

I wonder how that car ride to the hospital will feel. Will I remember that first car ride to the hospital...when she was about to be everything seemed to be moving in slow motion....people smiling and holding hands as they walked down the idea that inside that car, my world was crumbling all around me. I wonder if it will feel like a short ride...or the longest one of my life. Will I run every red light? Will I continue on like a daze of disbelief?

How will I tell my daughter? How will my heart and my head be able to withstand the magnitude of emotion that will surely come when I utter the words, "they found a's over...we did it!" How will my heart not burst with love and relief and pure joy in that moment?

These are things that I think about. Things that have crossed my mind countless times over the years. Things that keep me moving. Things that hurt my soul if I linger too long imagining the day. It's easy to say...just have hope...just have faith...just keep plugging along...patience is a virtue. It's easy to say. It's easy to convince yourself of these things day in and day out while you are living it. Oh, but when the day is gone...and the night sky wraps it's silent arms around you in a weary's's hard not to think....

Friday, November 8, 2013

Holding my breath

It's hard to explain to someone how diabetes doesn't only affect the person diagnosed, but rather the entire family. I mean..yes...obviously the person diagnosed is the one feeling it and living it and enduring the needles and pain and highs and lows. But this disease also affects the family too.

I've found it harder to relate to things that upset "regular" people. Things like getting frustrated over one sleepless night...or not being able to find a babysitter so I can go out with friends for some adult beverages...or not getting to go out on a date night with my husband. I can't relate to it because it's not my life anymore. That life was ripped from me years ago.

When I'm around other D-Moms, I feel like I can breathe. I feel like all of my minutes up until the point that I'm with them are spent with me holding it all in...holding my breath...holding my feelings inside...pretending to be the old me. And then when I get around my D-Mom friends....I can just let it the me who I truly am now. I would walk to the ends of the Earth for these women. I would give them the shirt off my back...the last dollar in my pocket...anything. I would do anything they needed me to do because they know...they get it...we are one.

I think I spend the majority of my time trying to live in spite of with ownership. Sometimes, I think that I need to try and live more alongside diabetes though. I need to learn how to live with it and somehow merge the two parts of myself together...the old me...and the current me.

I wonder if the old me would understand how important that hold onto a shred of that innocent carefree light. I don't think she would, to be honest. Maybe that's why the 'me' that I am now tries so hard to put myself out there and be that friend to others.

It's funny how diabetes makes you feel torn in two sometimes.

Wednesday, November 6, 2013

How to save a life

Seeing as how it's Diabetes Awareness Month, I thought I would share a little bit about the days leading up to Emma's diagnosis.

In April 2008, Emma, my Mom, and I all went to Disney World for a little family vacation. Emma was only four years old, but beyond excited to go. I mean, it's Disney World...the home of all her favorite characters...Minnie and Mickey...the princesses...Lilo and Stitch. I remember the day we arrived, sitting next to Emma as we watched the parade come down Main Street at Magic Kingdom. It was incredible, this was her very first parade experience! I snapped a picture of her face to capture the moment forever....the look of awe in her eyes...the huge smile on her face...wait....the pale skin...the dark circles under her eyes? I noticed it, but I thought to myself that maybe she was just tired...jet lagged...overwhelmed from the excitement of where she was and what she was seeing.

The next morning I took a picture of her and my Mom as we headed to breakfast. Again...I noticed the pale skin...the dark circles...the slow steps...slow even for a four year old. She wasnt jumping and running. She wasnt squealing and talking a mile a minute showing her excitement. She was quiet...sleepy looking. Again, I attributed it to jet lag.

Fast forward to the beginning of June 2008. Emma began asking for cup after cup of water...especially at bedtime. I remember getting irritated thinking that she was just trying to prolong her time of being awake. She began to wet the bed again. I had no idea why...she had been fully potty trained for a good 2 years at that point. I thought it must have been from all the water she had been drinking. It was was hot...I figured she was just drinking more water than normal because of the weather.

One night I remember bringing Emma's little Dora sippy cup up to bed. I held it in my hand and told her that was all she was cup was she shouldn't chug it like she had been doing the night before. Let me be honest here.....I yelled at her. I yelled in the way only a Mom can yell....I yelled at my child to stop chugging her water.....because I was tired of changing her sheets so much and her mattress was going to be ruined. I yelled because I was frustrated at having to continuously run upstairs to her room to refill her Dora sippy cup. I yelled because I was irritated and I thought it was some sort of four year old behaviour thing.

I yelled.

I have since apologized for yelling....but the guilt I carry around from that will never leave me. She wanted all that water because there was too much sugar in her blood....because her pancreas had shut down...and I had no idea....I never knew the signs or symptoms of diabetes.

I yelled....and I will never forget that.

That night, I changed Emma's bed sheets three times in a two hour period. It honestly looked like she had dumped a pail of water on her bed every time. I remember laying her sleeping body on the bedroom floor and changing her and putting a blanket over her as I cleaned her bed and put fresh sheets on for the third time. I stood there crying....because I knew something was wrong...I knew that my Mom was right. I had been sharing the recent drinking and peeing situation with my Mom on the phone the day before and she told me that those were signs of diabetes. As I stood there in the wee hours of the morning that night before she was diagnosed, I cried...because I knew she was right.

I'm lucky I didn't lose my daughter that night. I'm lucky my ignorance didn't result in her death.

So, please....know the signs...share them with others so that they know. You could save a life.

Frequent urination
Extreme thirst
Fruity smelling breath
Dark circles under eyes

Monday, November 4, 2013

Embrace the Quiet

I think generally people just want to be understood. We have this need to feel like we make sense and like people get us. Being the parent of a child with diabetes is not easy. There are days where I feel like I want to throw in the towel. There are days where I feel like I just want to be quiet...because there's too much noise in the world...too much chaos...just too much.

I think being quiet gets a bad rap sometimes. People think you are sad or angry or struggling when you're quiet. When sometimes, I just want to lay down on my worn in green couch with a tear in the cushion that keeps ripping and getting bigger....lay my head down on the pillow...and be quiet. Sometimes I just want to lay there and stare at the ceiling and pet my cat and feel her purring vibrating through the palm of my hand...rhythmic and soothing.

Sometimes I talk to God. I am the furthest thing from being a good or dedicated religious woman....but I'm trying. I think I do it because it brings me peace. It makes my head and my heart feel better.

It kind of reminds me of when I was in kindergarten and we had a certain time every day where the teacher had us all just lay our heads down and be quiet. She turned the lights off...and we all were as still as possible. It wasnt for very long...and I'm sure it wasnt always successfully silent...but it was nice. I remember laying there staring up at the ceiling and listening to the sound of my own heart breath in and thoughts calm and peaceful.

Sometimes on really tiring and frustrating days now...all these years later...I just sit there and close my eyes...and picture that little classroom. Its nice.

When my heart is calm again, I open my eyes and begin again.

I think it's important to find the quiet every now and again. It's important to turn it all off and listen to the silence. Don't feel bad or guilty for taking that moment to yourself. It's ok. I understand. I get you. I hear how loud your life is too...because it's the same sound as mine. Embrace the quiet helps.

Saturday, November 2, 2013

I get it

Diabetes is perhaps one of the most misunderstood diseases. People think they know...but they really have no idea. There a lot of things that are in your face and obvious...the blood...the needles...the carbs. There's a lot of things that are sort of silent though. Things that most people wouldn't think twice about.

Have you ever skipped breakfast to stand in solidarity with your child as they prepare to have fasting bloodwork done? I have.
Have you ever been starving and wanted to grab a snack...but you choose not choose to wait because your child's blood sugar is so high that it's unsafe for them to eat something...even though they are starving too...and you don't want to eat in front of them? I have.
Have you ever stood at the kitchen sink and shoved a cookie into your mouth with your back turned to the living room because you don't want your child to see you eating it and ask for one too...because you don't want them to have to endure another injection just to be able to eat it? I have.
Have you ever seen other Moms give their child a bite of their food...or a sip of their drink...without a second thought...and felt a red hot fiery jealousy burn in your chest? I have.
Have you ever sat there eating chips out of the bag with tears in your eyes as you think about the fact that your child can't do that? They can't just mindlessly eat chips out of a bag....or any food out of a bag...they have to count each chip...measure each bit of food and take insulin for it. Have you ever tasted the mixture of your falling tears and chips? I have.
Have you ever stared at your own hands and marvelled at the fact that the finger tips are unmarked...they aren't covered in thousands of tiny black holes...calloused over from countless needles being jabbed into them? I have.
Have you ever thought about where your child will put their insulin pump when they wear their first prom dress? I have.
Have you ever thought about where they will put their pump when they wear their wedding dress? I have.

Diabetes can be loud at times. It can be in your face...meters screaming ugly numbers at you...mocking you. It can be a mess...a complete and total mess. Other times though, diabetes can be can be so quiet that no one else even knows it's there. No one but you notices the fact that your stomach is growling. No one notices the bag of chips. No one notices the fact that your child is counting each one they put in their mouth. No one notices the frustration in their eyes and the anger at having to wait to eat.

There's a lot of judgement that goes along with diabetes. Judgement from the ignorant...which I can't really get upset about because before diabetes entered our lives, I was ignorant too. There's also judgement from those that do live this life too...which is bizarre to me. I don't do it right...I don't follow the same rules as them...I post too much about it...diabetes is every day, not just during the month of one really hears my attempts to educate except for those that live this life too, so what's the point. Everyone's entitled to their own opinion. Everyone has the right to speak their mind. I get it. I really do.

This life is not easy. But for me....being silent...going about my day without even trying to make a difference...well, it's just not an option. To each his own. However we individually choose to live this life is right. There is no wrong way of doing it. Just live it and find a way to love what you do.