Wednesday, October 30, 2013

Don't forget to look back

I have been told so many times over the years to not look back...always keep my focus on the path in front of me. I appreciate the sentiment and for the most part agree with the thought...but I do think it's equally important to sometimes stop and take a look over your shoulder to see how far you have come. It's good to look back and see all of the hills you have climbed...all the battles you have won and lost...all of the moments that you didn't think you would survive. I think it gives you a sense of accomplishment and respect for all that you have endured. It's good to look back and realize that all of those moments have led you to the place where you are currently standing. All of those moments are still with you...they are a part of you...they have made you into the person you are today.

I walked into my kitchen this evening to make myself a tea and enjoy the peaceful silence of my night. I walked past the closet door and glanced up at the calendar hanging on it. There was a tiny strip of paper poking out from beneath the calendar that I instantly recognized. I had forgotten it was still there. I lifted up the edge of the calendar and stood there staring at a sheet of paper I had hung up five years ago. It was a list of Emma's insulin to carb ratios from when she was first diagnosed. I had written them out on a chart and hung it up on the wall for easy access to help me remember how much to dose her for when she ate something. I stood there staring at that sheet of numbers...it was in my handwriting...the edges of the paper curled up over time. This chart was made by the old me...the version of me from five years ago.

I smiled and stood there for a minute looking back on our path...thinking about how much we have been through in the past years with diabetes. I remember being so nervous that I would mess up the calculations for her ratio and give her too much insulin...or too little. I was so nervous that I decided to make this chart. It eased my mind at the time. It was a comfort to have it hanging on the closet door. I remembered standing in that exact spot dialing up countless doses on her insulin pen...thousands of needles...carbs counted...dosages searched for. I stood there countless times...staring at that tiny droplet of insulin perched precariously on the edge of that tiny needle...knowing I was about to jab it into my child's body and give her what her pancreas could no longer do on it's own.

I looked over my shoulder for just a minute tonight and marvelled at the life we have led up to this point. I smiled at our strength...our endurance...our hope. I looked at the path behind me...some spots rutted and uneven...muddy and murky...dangerous cliffs and valleys. I looked back at the path behind me and saw breathtaking views...beautiful triumphs and victories...the suns rays cascading down all around me.

So, yes....I think it's important to keep your eye on the prize...focused on the horizon in front of you. I also think it's important to stop every now and again and be proud of what you have done...be proud of the path that you have already travelled. That path is a great place to draw your strength from when you are about to embark on the unknown trail ahead.

Tuesday, October 29, 2013

Happy Anniversary!

Today is my parents 41st wedding anniversary. Forty-one years....lets just let that sink in for a minute, shall we? .......

It's inspiring to say the least. I mean we fall in love, we want to spend the rest of our lives with this person, ride off into the sunset, and live happily ever after in a house with a porch swing and a white picket fence. We want to have a family with our love. We want to grow old with them and end up being one of those elderly couples we see in the grocery store parking lot holding hands as they walk to their car.

Marriage is not easy. It's not all sunshine and roses and good times filled with laughter. Marriage takes work. It's easy to love someone. It's not always easy to remember that love in the midst of mortgage payments and bills and cars that break down. It's not so easy to remember that love at 3:00am when your lying in bed contemplating whether or not it's possible to simultaneously plug the nose of your partner that is snoring like a freight train while anticipating their awakening so you can pretend like you weren't the one who did it and you had been asleep peacefully next to them the entire time. It takes work. It takes a mutual effort to remember that love...to remember that feeling of butterflies in your stomach as you catch eyes with them across the dinner table full of screaming kids with spaghetti sauce flung all over your shirt and noodles hanging in your hair.

Marriage is worth it though. It's worth the effort. When you wake up and have crust in your eyes and a wicked case of morning breath...and your love looks at you...I mean, really looks at you...and tells you that you're beautiful...that's love. When your partner knows what you take in your coffee and what you like on your turkey sub from Subway without being told...that's love. When they have worked long hours all week long and still get up with your child on the weekend to play the role of their pancreas...just so you can sleep in....that's love.

So, I think of my parents on this day and I am in awe. I'm in awe of their love and their devotion. I'm in awe of their determination and their strength. I admire their ability to stand beside each other for 41 years...holding hands...facing whatever life has thrown their way...together...as a team...a united front.

I look at my husband and our own 11 years of marriage, and I am happy. He loves me...I mean, he really loves me. I still get butterflies when I look at him. My heart still skips a beat when I hear him tell me he loves me. We have weathered quite the storms with diabetes in our house. We have managed it though....we are a united front...we are a team...we hold hands and face things head on.

I hope 30 years from now, I can be as strong as my parents. I hope that Emma will look back on her childhood and see what I see when I think of my own parents. Happy Anniversary Mom and Dad! We love you and thank you for being such an incredible example of what marriage should be like.

Wednesday, October 23, 2013

Perspective is a beautiful thing

Ya know what? I had a shitty day. It started out with skipping breakfast to stand in solidarity with my kid as she skipped breakfast because it was bloodwork day. She had to fast....so I fasted. The day progressed with a bunch of small annoyances...the little elderly woman at McDonald's got my coffee order wrong...but I decided to drink it anyway...because it was her first day...she was training...and she was the sweetest woman on the planet with a smile that could win over anyone.....so I drank it...and smiled...and wished her a good first day. I came home to find my cat puked on the carpet...right in front of the basement door...good times. Then Emma had a low blood sugar just after lunch. it wasnt one of those easy peasy give her 15 carbs and it does the trick kind of lows....it was a stubborn one. so, there I sat at a desk in her classroom...listening to the teacher talk about the branches of the government in his best Queen Elizabeth accent. Ok, that part was funny actually! Then the batteries in Emma's blood sugar meter ran out, so I hopped in the car and went to the store to get more. As I got back in my car to finally go home....I turned the key to start it up...and....nothing happened...my battery was dead. Clearly it's not a good day to be a battery in my house. So, I pulled out my cell to call the dealership which just so happened to be down the street from where I was and get them to come give me a boost. Keep in mind, we just bought this car less than a month ago...and this was the third time I have had to bring it in to the dealership. The first time was a stupid technicians error (he took a power washer to the engine on the day we bought it and wound up getting water in two of the cylinders which caused it to sputter and lurch). The second time was to get the CD player replaced because every time I put a cd in...it gave me an "error 5" message. Yes, my brain went directly to the error messages on blood sugar meters LOL! The third time...was today...a dead battery that actually needed to be replaced.

All of these things put me in a bad mood. I tried all day long to get rid of the dark cloud hanging over my head. It seemed like everytime I started to see the sun peak through again...something else would happen to send me back to square one.

And then I got an email from a good friend...telling me about her coworker. His son was just diagnosed with type 1 diabetes. He's 9 years old...just like Emma. My dark cloud vanished in an instant. My heart broke for this family. Thoughts of Emma's diagnosis day flew through my head. I felt the tears stinging my eyes as I remembered how it felt...how it feels...how it's still just below the surface.

I emailed this man...who had just spent his very first day as a D-Dad. I tried to find the right words to comfort them...to make them see and believe that it would be ok. I have found myself in similar situations many times over the years. I always want to run to them and hug them tight and make it all better....but I can't. I can't make it better. It's something that can't be explained in words. This family is now a part of our club. They will struggle...they will fail...they will cry and scream and yell and hate this disease.

But they will also smile. They will laugh harder than they did before. They will have hope. They will have a chance that most people never get....they will get to see just how strong their spirits are. The will live it. They will come to a point where they will accept it. It will be their new life now too.

So, I offer myself....my ears to listen, my voice to share my experiences and my support, my arms to lift them up when they need it, my hands to hold when they feel alone or lost, and my smile to make them see that it will be ok...that I believe in them...that I know they can do it.

So, yes....my day wasnt as bad as I thought it was. Perspective is a beautiful thing.

Monday, October 21, 2013

Just because I care

Just because I advocate for diabetes...does not mean diabetes rules our lives.

Just because I try to educate about this disease....does not mean that it's all I think about.

Just because I help my daughter with fundraisers for JDRF...does not mean that we spend every minute of every day asking for money, walking, riding, or selling hot chocolate for them.

Just because the majority of my posts on Facebook happen to be about diabetes....her highs...her lows...her struggles...and her victories.....does not mean that I don't have a life outside of diabetes.

Just because I make a conscious decision to help others who are struggling or new to this life...does not mean that I think I'm better than the next guy.

Just because I am passionate about these things and work my ass off to try to give my kid the best childhood and life possible...does not mean that I am a bitch.

Just because I cry tears of sadness on bad days or when I'm tired or when I'm struggling or when I read about another child diagnosed or another child lost....does not mean that I'm a sap or weak.

Just because I give my last dime to diabetes fundraisers that my friends are holding...does not mean that I am ridiculous.

Just because you see things differently and choose to live your life differently than I do....does not mean that you are right and I am wrong.

Just because I can't sit idly by and silent and not do anything....does not mean that I have a big mouth.

I do all of these things because it's who I am. Deep down inside. If you don't like it or agree with it, I'm sorry....I can't help that. I do all of these things because...

I care.

I care about you.

I care about your kids.

I care about your family too.

I love.

I have compassion.

I am stubborn.

I am a fighter.

I'm a dreamer.

I'm a Mom.

I'm a D-Mom.

Sunday, October 20, 2013

Disruption

It's kind of funny how diabetes has a way of jumping right in the middle of your day and reminding you very quickly that your life is not typical. I wake up in the morning and go about my day like every other Mom out there...making breakfasts, getting the kids off to school, doing the laundry, the dishes, running errands, stopping at the store to pick up a couple of things. I don't wake up in the morning with the thought of...I wonder when diabetes is going to make an appearance and throw me for a loop. I don't wait in anticipation of the highs or the lows. I just go about my day...checking blood sugars, counting carbs, bolusing, as well as all of the other typical Mom things. So, when diabetes decides to barge right in and toss a high or a low in there....it startles me sometimes. It is like a slap in the face reminder really...as if I could ever truly forget.

Last night, Emma and I ran out to Walmart to pick up a few things...just like we have a million times before. We were chatting away and laughing hysterically at all of the different Halloween costumes they had for pets. Each time one of us would pull out another costume and hold it up to show the other one, we'd both burst out into uncontrollable giggles. There was everything from Yoda...to Batman...to Frankenstein...each one more adorable and hilarious than the next. I noticed Emma was laughing a little harder than normal...a little more deliriously than normal...I couldn't quite put my finger on it...but it sort of was like we were stuck in this bubble full of laughing gas from the dentist...everything was funny...everything was fast and extreme and loud...everything going on around us seemed in slow motion and the lights were a little too bright...so bright that they seemed to cast a dark shadow under Emma's eyes...and make her look very pale...so pale...scary pale...and I snapped out of it...diabetes slapped me in the face.

...she was low....scary low...

I picked up her giggling shaking body and put her in the shopping cart. Tears of laughter still shining on our cheeks. I asked her if she felt low...just like I have a million times before. I saw diabetes slap her in the face in that moment....it hit her...she finally felt the low...the laughter stopped...the humor gone from the situation. I checked her blood sugar and she was 2.8...and she still had 2 units of insulin running through her body from dinner. I handed her a fruit snack and she started shoving them into her mouth with shaking hands. I quickly pushed the cart over to the food aisle and grabbed a soda off the shelf and gave it to her. I grabbed a bag of peach gummy candies off the shelf and stood there trying to open them. My eyes never left my girl. I asked her if she felt like her blood sugar was coming back up. I don't know why I ask her that...but I do everytime...I think it's because I want to hear her say yes...I want her to tell me that she's ok...I want to hear from her that we made it through this low too. She told me she was ok...but that she hates when she is low in public because it feels like everyone is looking at her...and it bothers her...it makes her feel self-conscious.

I have hypoglycemia....have had it for years actually...and it sort of hit me all at once when she said that...she's right...she's exactly right...it does feel like the spotlight is on you and everyone around you is staring at you...judging you...thinking you are weird...thinking that you look funny and something is wrong with you. It's an odd feeling. I hate that feeling. I glanced around and no one was looking at her. No one was staring. No one had any idea that we were in the midst of a dangerous situation. They just kept moving along down the aisles...talking about sales on beef and how they needed to remember to grab a roll of paper towels.

I told Emma that no one was staring...it's just the low playing tricks on her. I think it comforts her to know that I get what that feels like and I have felt it before many times.

Diabetes invades your life at diagnosis. It sneaks in like a thief in the night. You're naive...unaware...still peacefully living your life...so when diabetes arrives...it hurts...it feels like your reality has been ripped violently away from your spirit. Those wounds never heal completely...time forms a scar for you to be able to carry on though.

As you continue on with your new life, diabetes will barge right in and disrupt your new normal...it will knock you back on your heels and sometimes even send you to the ground...flat on your face. It's what you choose to do from that moment on that really matters. I hated yesterday's low...I hated today's two lows. They all disrupted our life for a brief moment....but only a moment. Our eyes become clearer again eventually...and we keep walking down the aisle too..talking about sales on beef...and remembering to grab a roll of paper towels...

...and how freakin adorable Daisy the cat is going to look in her new Frankenkitty Halloween costume...

Tuesday, October 15, 2013

Embarassed

Even after all of these years, diabetes still sometimes steals a piece of my heart....grabs it when I least expect it...squeezes it, crushes it between it's evil fingers, throws it on the ground and stomps all over it. It leaves this ache in me...this deep sadness...a shadow inside me...it hurts like someone is stabbing me from the inside out.

Early this morning...about 2 hours before the alarm was set to go off...I heard Emma call out to me from her room. I can sleep through anything...loud tv's, music, anything....the only thing that will wake me up in an instant...is the sound of my daughters voice. I sat bolt upright in bed and fumbled for my glasses. I untangled myself from the blankets and stumbled in the dark over to her room. My first thoughts were....low low low...OMG she's low...here we go...she's having a seizure....my worst nightmares come true...I need to remain calm and save her....low low low...shake the muddied sleep from my brain...focus Amy...focus....oh God please don't take her from me!

I saw her face...and she was not low...she was crying....she looked up at me with tears streaming down her face...and told me she had wet the bed. My brain quickly rewound the previous nights events...knowing it was my fault this had happened. It was my fault she was crying and had wet the bed. I had checked her blood sugar before I went to bed and she was 6.4....a really good number....but just a tad too low for me to feel comfortable leaving her at all night....so, I gave her 7 carbs to boost it up just a tiny little bit. Well, that 7 carbs sent her blood sugar up to 15....and her body tried to get rid of the excess sugar now sitting in her blood...by peeing it out. So, it was my fault. I screwed up. Not the first time....and most definitely will not be the last. Diabetes is a jerk like that.....it gives you the opportunity to feel like a failure at least once a day.

In any case, I cleaned her up....and brought her to our bed to sleep the rest of the morning away until it was time to get up for school. My husband was already awake and getting ready for work...so there was plenty of room. I got her meter and checked her before going back to sleep. As I stood there, waiting for the meter to countdown and show me a number......she looked up at me and through her tears said, "I'm so embarassed Mommy. This is so embarrassing. I mean I'm 9 years old...and I just wet the bed.....sigh....I'm sorry....I can't believe I did that....I'm so embarassed."

Cue heartbreak.....

I told her to not be embarassed....to not say she was sorry....I told her its ok and it was not her fault....she didn't do this on purpose. I explained to her what had happened that night. I crawled into bed next to her...wrapped my arms around my baby girl...and just held her. I brushed her hair from her tear stained face and held her. I told her that I love her...and I'm sorry this happened...but it's ok.

For the first time in a long time, I fell asleep with my daughter in my arms.

Diabetes stole another piece of my heart this morning....but it also let me have that moment of love. That moment is what I choose to remember about this day.

Monday, October 14, 2013

Needing help is ok

Sometimes all you need is a little help through the starting gates. You need that gentle hand guiding you...showing you the way...sharing their experience and their light. I struggle sometimes with what to do...I wander around in circles...lost...heart full of aching misery...my blinders are up to the light that is surrounding me. Sometimes I need that help to peel away the blinders...to take away some of the heartache.

I have a hard time asking for help...a REALLY hard time. I don't know why exactly. I think maybe it's gotten worse the longer I've been a D-Mom. I think I have this convoluted idea in my head that I need to appear like I have it all together...I need to appear strong...I need to put up this front like I know what I'm doing most of the time. When those times occur that I screw up and diabetes gets the best of me...or life in general gets the best of me...I need to just be strong anyway and say I'm ok and I don't need help...I'm fine...I'm good...really I'm ok. When a lot of those times, I'm actually not ok. I think it's because the day before Emma was diagnosed, I was naive...I was oblivious to this life. I was set in my easy...comfortable...low stress life.......and then the rug was ripped out from beneath me. So I feel like if I keep this strong shield up...that I will be safer. Alas, not really the case. I don't know why I think I am so easy to fool about stuff like this.

When I finally do open my mouth and let the words fall out asking for help, I immediately feel nervous....like I should've just kept trudging along in my own head. Almost every time though that I allow myself to be vulnerable and ask for help, I am always amazed at the relief that follows afterwards. I feel like a weight has been lifted. It's freeing. It brings tears to my eyes to know that there really are people out there that can help....angels that walk among us.

It's not all that bad to need help. It's not that painful to ask. It doesn't wind up making me feel weak or stupid. In fact, it makes me feel the complete opposite of that. When I finally ask for help, I feel stronger...I feel safer...I feel like I can do it. There's a moment that passes where I actually see that the supportive hands on my shoulders and the kind words in my ear are where I can draw my strength from until I become comfortable enough to take those steps on my own.

Moral of the story....needing help is ok...no matter your age, your experience, or your comfort level. Needing help is ok and it doesn't mean you are weak.

Thank you for the help tonight, my sweet friend.

Thursday, October 10, 2013

Those moments

You know that moment when you ask someone a question and they have a look of complete and total blankness on their face? Like you just spoke to them in a different language and they have absolutely no idea what you said...but they don't want to seem like a fool...or rude...or like they aren't interested in what you have to say.....so instead they just nod and smile?

You know that moment when you don't even have to speak to another person......you just look at them.......and they get it? They get it because they have been there. They get it because they know how it feels to have your heart pound in fear and your hands shake from nervousness and your mind race from thoughts of doubt and worry and defeat. You know they get it just by the look in their eyes...the slight tilt of their head...the way they bite their bottom lip...the ease with which they open their arms to embrace you with tears in their eyes and a pounding of their heart that is in sync with your own. They get it....because they get you.

You know that moment when you meet a complete stranger and one simple word is uttered between you and it's like your worlds collide...two lives forever intertwined....bound together by the same battle...the same life...the same word....

....diabetes.....

You know that moment when you can breathe again? When you let yourself go and the tears that you didn't even know you had been holding in, suddenly start to fall from your eyes....and it feels good...it feels safe....it feels normal...and right...and sane?

That moment happens every single second of every single day in our world. I am greatful for those moments. I am greatful for the moments of clarity and sanity that exist in between the moments of madness and chaos. I will hang on to those moments and those people for the rest of my journey. Those moments trump anything that can be thrown my way. Those moments define strength and love.

Tuesday, October 8, 2013

Bittersweet Symphony

So this morning was a hard one. The perfect storm of circumstances occurred and it all resulted in my kid being low and scared. I don't really want to go into detail about it because that's not the point I'm trying to make with this post.

The point I'm trying to make is this....there seems to be a fine line I walk with this disease. I want people to get it. I want them to understand. I want them to treat it the same way and with the same amount of passion that I do. I want it to mean the same thing to them that it does to me even though I know in my head that it never could unless it actually DID happen to them too. People are strange like that...until something affects us personally...many of us tend to glaze over and just not put too much thought or feeling into it. I want them to take it seriously. I want them to really see just how quickly things can turn south. I want them to see that it's really not all about food and sugar and exercise. I want them to understand...truly understand...just how fine of a balance it is to keep things in range and healthy. I want them to see it for what it is and realize that my daughter is only 9...still a kid...JUST a kid. She's not an adult. She is completely capable and intelligent and knows more than most, how to take care of her diabetes.....BUT she's still just a kid. I want them to see that this isn't a short term thing. This isn't some illness that will go away. I want them to stop thinking for a minute and let it sink in.....

...she will have this for the rest of her life...her entire life....24 hours a day...7 days a week...365days a year....

I want them to let that sink in and respect that fact. I want them to understand that while yes, she's been doing this since she was 4 years old....her diabetes is not "in control" or "getting easier" or "becoming normal". I want them to see that the fact of the matter is....she has been doing this for more than half her life now...and she IS pretty amazing at it....but she's still JUST a kid.

Yet, on the other side of that line I walk.....I want them to see that we can do this...we can thrive...we can rock this life...busted pancreas and all. I don't want sympathy. I don't want pity. I don't want people to feel bad for forgetting to help her. I don't want people to feel bad in general. I just want them to accept it for it it is...learn...and move on. I work my ass off to make this life easy...and make it look easy...because I want others to see that diabetes will not stop you from living your life to the fullest and achieving your dreams. I want to make it look easy even though I know that simple fact carries a negative impact as well...it perpetuates the myth that this disease is easy to manage...it stops people from truly seeing just how hard it is.

I walk this line every single day with my daughter. Sometimes we teeter over to one side....sometimes we fall off that line all together...sometimes the line disappears completely from the horizon ahead. Regardless, we continue to walk it together. I don't have all the answers. I don't know the outcome. I don't know how we "do it"....we just keep doing it...because we don't have a choice...we were never given a choice.

That's the lovely/awful thing about this disease. It just happened....we didn't ask for it. It broke my heart years ago to have that ripped away from us....BUT the fact that we never had a choice in the matter has proven to me just how strong we are. It's the perfect example of a bittersweet symphony.

Monday, October 7, 2013

A Beautiful Bulge

So today is picture day at school. My kid was all hyped up...picked out a brand new dress for the day...planned ahead exactly how she wanted me to fix her hair...had the perfect pair of earrings to match the whole ensemble. It's funny to me how much of a pre-planner she is. I was never that way. I have always been a go with the flow...fly by the seat of my pants kind of person...that is until diabetes entered our lives. THEN I learned pretty damn quick the importance of pre-planning...and attempting to be prepared for anything. It's not a skill I was born with or a skill that has come easy to me. I still struggle with it to be honest.

Anyway, when Emma got dressed this morning in her new outfit...I couldn't help but notice her pump was visible in the form of a big bulge sticking out from beneath her dress right at her waist area. It was a slap in the face reminder for me that, whether I like it or not...diabetes is always there...ALWAYS. Sure we can pretty it up with a fancy pump pouch...we can put stickers on it...we can have the actual pump in a variety of colours...pink being the one Emma has chosen since day 1.....but still it's diabetes. Strip away all of the layers of dazzling it up....and you're still left with a small machine attached to a tube that sticks into her body and delivers her insulin all day every day.

I sighed as I looked at it...my brain quickly trying to think of a way to fix it...to hide it...to make it less visible and less "odd bulge" looking for her on this picture day. I must have had a strange look on my face because after a minute Emma said to me....what? Is something wrong? Do I have my dress on wrong?

I looked up at her face...her eyes...and I sighed again...this time at her beauty...and how quickly she is growing up right before my eyes...growing up into a beautiful young woman. I smiled and giggle to myself as I thought...I made that....she came from me...I made that beauty. It was in that moment that I realized she could care less about the bulge protruding from her waist beneath her dress. It meant nothing to her. Honestly I don't think she even remembers she's wearing a pump sometimes. I looked at her standing before me and I realized that she is gorgeous....on the outside and on the inside. Diabetes is a part of her. The bulge beneath her dress is a part of her. It's her pancreas. The only difference between her and I is that her pancreas is visible to the world...mine is not.

She is beautiful to me for a lot of reasons....but this morning, I think perhaps the most beautiful thing to me that I saw was that bulge of her pump...and how it was not even on her mind when she thought about her upcoming picture.

I am greatful for the lesson she taught me this morning. It may be an invisible disease...with sometimes very visible tools needed to manage....but it's all beautiful. It's beautiful because of the person surrounding it. Not because of what they have or what they wear...it's not even because of what they endure....she's beautiful because of who she is as a person.

Saturday, October 5, 2013

A Promise

I think the world is full of chaos and dreams
Laughter and screams
No one knows what it means

A solitary confinement of  what once was
Flashes so brilliant
That they burn your eyes
Blinding the present
Shadowing the future
Of a moment that could never be
Without you and me
We will never see

The sun casts it's rays upon your face
As you lean back into your easy chair
Rocking gently on the porch
Of a thousand days
A thousand memories
A thousand nights spent discussing life
Dust twinkling across your eyes
And all you can do is sigh

A warm hand in yours
Reminding you of a long lost conversation
From a lifetime ago
A promise made
To hold your wrinkled calloused hand
As the breeze blows gently across your fingertips
Caressing your soul
Forever