Struggling with the tradition

It's 1:42am and I'm sitting here trying to fight back the tears.
This whole week I have been really excited and looking forward to Emma's 4th hot chocolate sale fundraiser for JDRF. It's always a fun time...we meet a TON of new people affected by diabetes, we get to spend time with the old familiar friends that stand alongside us every minute of every day fighting this disease...trying to make it work...trying to make it normal...trying to survive each day, and we do our best to spread awareness and raise some funds for JDRF. It's always a good day. I always wind up coming home at the end of it and feeling good...a lightness about my heart knowing that we are not alone...feeling proud of my little girl for coming up with this idea in the first place and proud of her for standing up and doing her part to beat this every day.
However right now I am sad. I'm sitting here staring at the pile of things we have all set to go in the morning. The signs, the prizes, the supplies...it's all waiting by the front door...and it's sort of hit me...this is our 4th time doing this. It's our 4th time standing out there fighting to come out on top. Our 4th time correcting the general public's opinion and perspective of Type 1 Diabetes. Our 4th time putting ourselves out there and doing the only thing we CAN do to help fight this...raise money and educate. Diabetes has taken so much from us...our ability to make every day things easy...our ability to spare our children from having to grow up and mature before they otherwise would have had to...our ability to sleep peacefully and soundly at night...so much...it has taken so much from us. So this simple little fundraiser is the one thing we can do...the one thing that makes us feel like we have purpose in all of this chaos...the one thing that helps grab us by the shoulders and pulls us back up onto our feet.
It's our 4th time doing this though...and there's still not a cure. It makes my heart hurt and is giving me quite the battle with allowing the tears to fall from my eyes right now. I'm struggling. It hurts. It's overwhelming and I'm tired. I want to say that I don't know how many more years I can do this fundraiser because it has become a very emotional thing for me....but I know that wouldn't be true...I know that I will still do it next year...and the year after...and the year after that. I will continue to do it every single year that I have to until a cure is found. It's what we do. It's become a part of our process...a part of our journey with this disease...a tradition so to speak.
So, even though I am struggling right now...and my heart feels like it is breaking as I stare at that sign that says "4th Annual" on it...and I am losing the battle with tears.......I will still do this...because I love her more than anything else on this planet...I would give my life for her...I would crawl to the ends of the Earth carrying her on my back if I had to...I would do anything...I will continue on until a cure is found.

The Fonz and a1c numbers

So, this past Tuesday Emma had her 3 month diabetes clinic appointment. Oh yes...the all important clinic visit that we all know and love. It entails a plethora of emotions leading up to the actual day and it usually turns out to be some sort of adventure (for us anyway!) We are over 3 years into this diabetic life and without fail, every single time clinic day approaches I begin to feel the stress ball growing in my stomach. I know it stems from the stress I put on myself to be a perfect pancreas...I know it is an unattainable goal...I know it will never happen...and yet I still do it. Add into the mix the fact that I want to see a good number...I just want to see it...I want that validation that all of those sleepless (or very little sleep anyway) nights are worth it...I want to see the number to prove to myself that I am not doing all of this only to wind up with a horrible result anyway. Another fine ingredient in the recipe for setup to failure is the fact that our doctor is not the most supportive person...I don't think I have ever heard a "keep up the good work" from the doc to be honest.
Sooo....that brings us to the past three months issues...Emma had strep throat, a bad cold, and we encountered a faulty reservoir which resulted in her spending an entire day in the 20's because it took me that long to hone my diabetes detective skills to figure out that was what the issue was! So, I walked into the hospital with all of this baggage on my back...the stress...the self-inflicted pressure, the fear of realizing that all of my efforts were to wind up in a bad number anyway. Let me assure you that it was a pretty heavy load. I have some strong shoulders, but it still felt like I was trudging my way down from the 5th level of the parking garage (I never get a good spot there! GRR!LOL!)
To make a long story short, her a1c did go up a tad....by 0.3 actually...enough to make me want to type a little "Pffft!" at all of the worry and stress I put myself through. It has made me realize though just how much pressure I put on myself...how much of this I take on...how much I convince myself that it is all my stress alone to shoulder...my burden to bear. It's too much. I need to learn how to ease up on myself and realize that diabetes is fickle. Diabetes has a mind of it's own. Diabetes does NOT play fair...in fact it doesn't follow the rules...it has NO rules really. It's sort of like the Fonz from Happy Days in that respect. The Fonz played by his own rules...he slicked his hair back in a sweet pompadour because that was how he liked it. He wore a leather jacket and road a motorcycle because that was his style. He got the ladies...he never had to put a quarter in the jukebox...AND he had a kickass catchphrase. Diabetes is the rebel in this life. Diabetes does what it wants, when it wants, where it wants, and how ever often it wants...cause it can...it sits atop it's shiny black motorcycle chillaxin (yea...I can say that...I know I'm 34...but I can still say that if I wanna! LOL!) and doing whatever it's little heart desires on our episode of "Happy Days". I however am more like Potsie or Ralph Malph...awkward...bumbling along...trying to keep up and fix things as they come. It's far from easy...no one ever said it would be though I guess. So, I'm going to attempt to ease up on myself and not carry around all of this pressure and stress. I'm just gonna sit back once in a while and whistle the "Happy Days" tune to myself.

Nightmare

Wandering down the dark and muddy path
Roots and stones jump out at my feet threatening to send me sprawling
landing face first in the earth.
Shamed and scared
Tears fall from my eyes to mix in with the dirt,
a puddle of pestilence before me,
mocking me,
threatening to drown me.
A canopy of green shelters me from the storm,
the ever present storm.
The sense is lost,
as am I.
Aimlessly moving about...
full of undying doubt.
The echos of my heart whisper in my ear
like the sweet breath of a sleeping baby in my arms.
Her tiny hand curled around my finger
grasping, 
safe...warm...home.
Footsteps emerge from behind...
pounding...gaining...tracking us down.
Muffled voices all around
knowing...always on the move.
Losing sight of what is near
overcome with insane fear...
oh my sweet dear,
will we ever get out of here?
Focus on her tiny hand
the softness...the sweetness...the innocent warmth.
Escape desired and forever out of reach.

Our World Diabetes Day interview

There are so few moments in life that force us to remember what is truly important...what truly matters. We get stuck in the mundane and monotonous routine of blood sugar checks, insulin injections, pump site changes, numbers, numbers, numbers...and we tend to forget those little things that mean so much.
Well, today I got to enjoy one of those moments...and I am still feeling the afterglow of it. Emma and I were invited to be guests on a local TV show here called "Daytime" to talk about World Diabetes Day and Emma's 4th Annual hot chocolate sale fundraiser for JDRF. I got her from school and we drove to the station with a ball of nervousness growing in our bellies. Like I have mentioned before, I am NOT a big fan of public speaking...I don't like all the attention focused on me...I get shy, nervous, stumble on my words, turn beet red, and it usually turns into a big uncomfortable situation. Emma is not a HUGE fan of being put in situations like that either...but once she is there and in the moment, she really is at ease and seems to enjoy it. We arrived and were greeted with some of the most amazing people...the host was incredible...he immediately began crackin jokes and making Emma laugh...I am so greatful. We sat down on the couch and once the cameras started rolling...the nerves were out the door. I made a point of not looking at the camera...I wanted to say all of the things that were flying through my mind. I wanted to talk about diabetes and make the viewers understand...I wanted them to get a true honest to goodness glimpse into our lives and maybe possibly hopefully ignite some spark of compassion...some tiny bit of curiosity in them...so that they would talk about it with someone else...spread the word...educate each other. I felt the enormous weight of my thoughts on my shoulders. I wanted to make you all proud. I wanted you to feel confident in me and my ability to get the word out there and spread the awareness. I hope I accomplished that. I hope that my words reached through the screen and touched someone at home...I hope that I made a difference today. Isn't that really what this life is all about? Making a difference? Loving your friends and family to the utmost capacity and making a difference in the world? I believe so anyway.
While I sat there listening to the host talk to Emma, I had to choke back tears. I have said many times before how proud I am of her...for her bravery, her compassion, her kind soul, her drive, and her ambition. However today....ohhh today was so much more. I sat next to her on the couch and watched her speak about her diabetes. I watched her OWN it...I watched her show off her pump...I watched her talk about her hot chocolate sale and how important it is. I was overcome with a feeling so much greater than pride...it was incredible. I was in awe of her...her courage...her tenacity...her attitude of "this is me...this is who I am...take it or leave it"
Once the interview was over, I saw her smile...and I knew...she was proud of herself. She knew that she made a difference today...she knew that she left her mark today. We walked out of that TV station with a spring in our step and smiles that stretched from ear to ear. As a Mom, I try to teach her what is important in life. I try to teach her that it is much better to stand up and fight for what you believe in...even if everyone else around you thinks you are a fool for trying. I try to teach her that this disease does not define her. She is so much more than diabetes. I try to teach her that she should never sit back and let pity rule her days...it's ok to be sad...it's ok to hate it...it's ok to let those feelings out...but don't let them rule your days. I try to teach her that being who she is...honestly and truly who she is...being a leader in this world...it's so much better than the alternative. Never hide yourself. Never hide the true you. I try to teach her that it doesn't matter what anyone else in the world says or thinks of you....the only thing that matters is what YOU think...that YOU know you did something special...that YOU know you made a difference today...and that YOU are proud of yourself.
Yep, today was a good day...and I am a lucky girl...I won't be forgetting that anytime soon.

What I would like you to know

Tomorrow is World Diabetes Day. I sit here thinking about all of the 31 years of my life that I lived with Nov. 14th passing right by me...clueless to what it was or what meaning it held for so many people. I had no idea honestly who Sir Frederick Banting was or even the fact that he had discovered insulin. I didn't know the magnitude of this disease. I thought that all a diagnosis of diabetes meant was that you had to adjust your diet and you were no longer able to eat any sugar. I thought that it was something that could be taken care of with a pill every morning...and if you were affected with a really "bad case" of it, then you had to have a shot of insulin every day too. I thought that the only thing a diabetic had to worry about was the food that they put into their mouths and the amount of exercise they had to do to maintain a healthy weight. To make a long story short....I was clueless....I was ignorant...I had no idea.

Emma was diagnosed with Type 1 diabetes on June 26, 2008. She was 4 years old and about to start school for the very first time that September. She came to me in October and asked me if we could have a hot chocolate stand to raise money for the people looking for a cure for her diabetes. She wanted to help them. She wasn't willing to just sit back and remain quiet...let someone else take care of things...let someone else shout it from the rooftops that we need a cure. At 4 years old, she had enough social awareness to realize that if you want to make something happen, you need to open your mouth and tell someone...you need to reach for the stars and set goals for yourself that at the time may seem unattainable or out of your reach. So, on Nov. 14, 2008 we held our very first hot chocolate sale to raise money for JDRF. Emma managed to raise $1200 that night. I have so many memories of that night that make me smile. One image in particular though will stick with me for the rest of my life. I recall standing beside her and watching her talk to the local TV news reporter about her fundraiser. We were in the middle of a crowded grocery store, bright lights were shining in our eyes, and I looked down at her smiling face standing next to me...she looked like an angel to me...she was smiling from all of the excitement...she was beautiful...I saw deeper than that though...I saw the look in her eyes. I saw for the first time in her life, true pride in herself and what she had made happen. She was so overwhelmingly pleased that her idea that started out simply as a thought...a desire...a wish....had transformed into this...the reality which was now before her. It was amazing. I am so lucky that I got to be there with her and see her sweet face in that moment.
So, here we are about to have our 4th annual hot chocolate sale fundraiser. I feel a deep and raw sadness that we are still doing this...there is still not a cure. I hope that Emma doesn't ever get discouraged and doubt the power of this fundraiser. I hope she doesn't ever stop dreaming big.
I sat here tonight talking with her about Sir Frederick Banting and his life. I told her that he is a shining example of how important it is to be curious...to have that insatiable thirst for knowledge...to posess that perseverance and determination that will keep you going...keep striving...keep dreaming big and reaching for the impossible. I told her that you can never stop trying...never stop questioning...never stop learning...because once you do, once you succumb to that complacency and that stagnant way of thinking...all will be lost. I told her that one of the most important things in life that I wish for her is to continue to be curious and to continue to ask questions and educate herself.
So, here I sit...greatful beyond all belief for this man I have never met...and I hope that all of you reading this will not wait for Type 1 Diabetes to become a part of your life before you decide to take a moment to learn about it...to educate yourselves and share what you have learned with others. I hope that you will choose to stand up and reach for the stars in whatever you do in life...don't give in to complacency...don't lose that fire within...don't lose that hope.

I know you

I see you out there...creeping into your child's room in the wee hours of the morning...blood sugar meter and lancet in hand. I see you shuffling over to their bed, bleary eyed and exhausted...still half-asleep. I see you pausing...taking a moment to look upon them and take in their beauty...so peaceful...so sweet...diabetes is the furthest thought from their minds, and that is the most beautiful sight in the world to you. I see you wipe away that stray single tear that managed to escape from your eye and roll down your cheek. I see your face change from one of love and sadness...to one of strength, determination, and routine. I see you reach down and choose one of your child's callused and marked fingers and yield one of your tools of the trade...the lancet. I see you poke a needle into the tip and squeeze a droplet of blood out...while thoughts and mantras race through your mind...please show me a good number...please don't be low...please don't be high...please let it be good so we can all sleep safely and soundly tonight to awaken in the morning. I see you wait for the meter to count down and show you the number...the all important...all consuming number. I see you hold your breath for that last moment as the reading on the meter finally appears. I see you lean down and kiss your child's forehead...content and relieved that you were shown a good number...greatful and lucky that this time you won the numbers lottery and are rewarded with a safe child...and a half way decent sleep.

I see you out there. I know you. I know you better than your own family knows you. I know your deepest darkest thoughts, fears, feelings, and worries. I know your joys, your overwhelming pride, your relief, and your victories. I know your grief, sadness, loss, and struggles. I know how much it means to you to see your child smile...to see them succeed in spite of...in the face of...type 1 diabetes.

I know you. I know you because you are me....and I am you.

I will hold on

Sorry for all the poetry lately....but it's helping me to get it all out...


I will hold on
to all that is wrong
and dark and unfair.
I will grip it in my ceaselessly moving hands
with an intense passion threatening to take over my whole mind.
I will hold on
to all that is frightening and maddening
with a desperate attempt at staying afloat.
I will hold on
to all that is lost for good, never to return
with a fierceness that blooms within.
I will hold on
to the rope above that taunts me
swaying back and forth, promising
light and love and hope.
I will hold on
for dear life while struggling to win the fight,
grasping the mocking rope,
and pulling my head above water.
I will hold on
and furiously pull the immense weight of my unbearable thoughts
higher and higher
setting my sights on that light,
that love,
that hope.
I will hold on
and save myself from the bottomless abyss below
the deep and murky waters
that are constantly trying to pull me down,
down,
down.
I will hold on.