Diabetes is ugly

Diabetes is ugly. It's an ugly disease. Let's face it, there's blood...there's needles...there's ketones, mood swings, blood sugar swings, complications, tubes, pumps, insulin vials.......it's not pretty. It creeps into our lives causing such chaos when we are so completely unprepared and so utterly unsuspecting. We are forced to make it work...to gather up all of this ugliness and somehow make it our own...make it into our own version of pretty. We are thrust into this life blindly. There is no time for setting things right in our own minds and stealing ourselves for the fear and stress that we are about to endure. The sleepless nights...oh how they weigh so heavy on our hearts. Those deep dark moments in the middle of the night...those that seem to never end...they are perhaps one of the most ugly things about this disease. Those moments where we have to endure the screams and cries of pain and fear coming from our babies mouths...echoing forever in our souls...pure ugliness. Those moments that we find diabetes becoming glaringly obvious in our babies lives even though we make it our top priority to make it not so...to make our kids see and believe that they are not different...that they are just like every single one of their friends...those moments sting with the slap of an ugly reality. Those moments of low blood sugars...be it during a sports activity, a play date, at school, at home, during an illness, for no apparent reason at all....or while our kids are fast asleep in their warm beds in the middle of the night...those moments for me are probably the most ugly thing about diabetes. Knowing that no matter how hard I try..no matter what I do...what I think is right..what mistake I may make...while she is sleeping, I have no way of knowing what is going on in her little body.....because she is not awake to share with me how she feels. Those moments that diabetes steals the re-energizing necessary sleep that my body needs to survive....because I stay awake to play the role of Emma's pancreas while she rests her body and mind. It's pure and total unfair ugliness. The moments where I sit here in the quiet sleeping house and think about what Emma's future holds...will she have any complications? Have I already made too many mistakes causing too many crazy blood sugars that will cause her body to be damaged later on in her precious life? How much time will she spend during her life going to doctor's appointments...getting bloodwork done, testing her blood sugar, giving herself insulin, making adjustments, making her own mistakes with this? Ugliness. Will she blame herself for mistakes like I blame myself in my head when I make mistakes? ugly. Will she be ok? Will she live to be an old woman? Will she have a good life? scary ugly thoughts.
Then I realize that even through all of the ugly horrible aspects of diabetes, there is beauty. Even through all of it's many terrifying and despicable moments...disgusting and unfair moments, there is a light. It leaves a strange and bitter taste in my mouth to say this, but in some aspects I am greatful that diabetes came into our lives. *GASP! have you lost your mind, Amy?!* I am greatful for all of the ugliness of diabetes, for one reason and one reason alone.

The ugliness has shown me what TRUE beauty looks and feels like.

I have had the honour of meeting some of the most beautiful people in the world. Other parents of diabetes children, other diabetic children themselves, people who have the same fight in their hearts that we do...people who want a cure just as badly as we do...people who will do absolutely anything for you or your child...people who cry tears of frustration and anger over this disease with you...and then will pick you up, dust you off, make you laugh, and help you continue on again. People who love your children as their own, people who truly care about you. If that isn't a thing of incredible beauty....then I don't know what is.
Diabetes IS ugly. For me, it will always be ugly. However without that ugliness in my life, I would be missing out on so much beauty...and that would be an unfortunate thing.

Realizations from sick island

So I have been MIA for the past few weeks and it is all thanks to one of the worst stomach viruses to hit this house in a long time. Emma started it all off and passed it along to me. Each time that we are forced to deal with an illness and diabetes, I feel overwhelmed. I feel like I can't do it, like I am going to screw up, like the lows are going to never end, the ketones are never going to go away....but somehow we always pull through. We always seem to find the light at the end of the tunnel and make our way back to health again.
I have found though that when I am the one who is ill....it's an indescribable feeling. It's like I have to let go a bit. I have to put my trust in other people way more than I would ever feel comfortable with if I was in my right healthy mind. I am not saying that I don't trust my husband to manage things, because I do....but in all fairness, he is not normally the one to handle diabetes related things because he is the only one working...I am a stay at home Mom...and therefore I am usually the one at home managing the big D. Anyway, I find that letting go...that feeling like the diabetes world is just out of my fingertips reach. I know it's there...I can see it going on all around me, but I just can not do it. I was stuck on my own sick island in the living room...floating around on my raft that was the couch...bundled up under my big purple Snuggie and vacantly staring at the tv. I was stuck there feeling seasick, feverish, cold, and lost. Sure I made random leaps to the bathroom in an attempt to rid myself of the virus, but for the most part I floated along all alone. I saw dinners being made, carbs counted, boluses given. I saw blood sugars checked and corrections made. It was all going on right in front of me and I had absolutely nothing to do with it. The virus had forced me to take off my D-Mom hat and set it aside. All I can say is that it was a surreal thing.
One day in particular I actually kept Emma home from school because I was too sick to take her and I was worried that if she went low at school that I would somehow have to find a way to force myself to go there to help her. So, I spent the entire day slipping in and out of consciousness on my couch/raft and left most of the care to her. Emma is 8 now. She has been living with diabetes for nearly 4 years. She has been pumping for almost a year. She is mature and she knows when to ask for help. So, I would awaken in my fevered stupor on the couch to find her checking her BG because she felt low. I found her grabbing a snack out of the cupboard and gently waking me in her sweet whispered voice to ask me the carb count. I found her entertaining herself..playing with her toys, watching a movie, blowing bubbles on the porch. When I finally awoke late in the afternoon, I discovered her sitting on the floor near me working on a Get Well Soon Mommy card. My heart melted....ahhhh....how did I wind up with such a sweet girl. It's like I came home with this tiny baby in my arms....blinked...and now before me stands a kind, caring, nurturing, loving, and thoughtful little girl.
So, now that I am better I find myself greatful for the sunshine...greatful for the ability to sit on the porch with my girl and blow bubbles with her...greatful to count the carbs in her food...greatful to bolus her...greatful to give her a break again and be the one handling the tough stuff...greatful to let her be simply a kid again...greatful to be putting my D-Mom hat back on again (as much as I hate the damn hat...it's still mine...and I will wear it proudly and with strength)...but MOST of all, greatful to have witnessed just how lucky I am to have such an incredible husband and amazing daughter.

What a braid means to Emma

It's hard to tell your child that a family member has died. It's hard to tell them that someone they loved is no longer here on this Earth. It's hard to tell that that this person who meant a lot to them will no longer be there to go and visit....to go and laugh with...to go and hug. It's hard to tell your kid this. It's hard to look them in the eyes and tell them that the last time they saw this person is THE very last time they will ever see this person.......until they meet again one day in Heaven. It's hard to see the tears well up in her eyes...it's hard to hear her say that she is upset...that she misses this person who was special to her. It's hard to hear her say that she wishes she would have let this person braid her hair the last time she saw her.
See that was their thing....this family member and Emma....their thing was a teasing each other...joking...laughing...that was how they showed each other they loved each other. This family member would always try to braid Emma's hair...and Emma would never want her to...so she would squeal "NOoooooOOOoo!" and they would laugh...and giggle...and time would pass...and the routine would start again. It was sweet. It made me smile to see Emma have these moments with someone special to her in her family.
My mother in law passed away before Emma was born. My own Mom lives about a 10 hour car ride away from us. So, Emma doesn't really have very many female role models in her family. It's hard...it's something that worries me.
To see Emma lying there in bed...with tears in her eyes over her loss....I was sad. I hugged her and told her that this special person would not want her to be upset...she would not want her to be crying...she would want her to get a good sleep tonight and think of all the laughs they shared...she would want her to fall asleep with a smile on her face and peace in her heart.
It made me realize once again that life isn't about what you have...how nice your car is, how big your house is, how much STUFF you have to fill your house. Life isn't about the label on your clothing, the logo upon your shoes. It isn't about how much money you have in the bank, how much education you have, how many people are in your family, how many friends you have. It is about those little moments in between. The moments that fill up the space while you are waiting for the non-important things to happen. The games of tag at the park with your kids...out in the sun. The time you let go of your kids bike seat as you are chasing behind them as they are learning how to ride on their own...that moment of panic...as you release...and still running, watch them...riding away. The moment where you glance at your spouse or loved one and see them before they see you looking at them....you really SEE them...and your heart skips a beat...you get butterflies in your stomach at the fact that they love you and are sharing this life with you. All of those little moments that fill up the spaces in between....those are what matter....those are what you need to hold on to...those moments are what life and living really is.
So, Emma told me that she wants to wear her hair in a braid at the funeral home. I sit here with tears in my eyes as I just read back that last sentence. She wants to wear a braid in her hair....because it means something to her...it is her connection to this woman that was so special to Emma...it is their thing...and I am glad that Emma can carry that memory with her...and I hope it gives her comfort when she is sad.

Mommy, I'm scared...

There are some moments in this diabetes life that stick out and will probably always stick out for me. They are like permanently post-it noted to my memory....damn you post-it notes and your ease of use! Anyway, the past couple of days Emma has been dealing with a stomach virus. It wasn't one of the most severe scary cases we have ever seen in this house...but it was by far not the easiest either. I'll admit, there were moments were I broke down and allowed a few tears to fall, moments like when I drove to the pharmacy to pick up more ketone strips and I cranked the music, clutched my cell phone in my hand so I could still feel the vibration if my husband called to tell me Emma had passed out or thrown up or something while I was gone, and screamed/shouted along to the music. There were moments were I rested my chin on the edge of the computer desk, held my weary head in my own hands, and zoned out....thinking of nothing...a great big blank nothingness...and longing for the peaceful quiet non-diabetes filled open space of that blank nothingness. I longed for it. I wanted to silently slip away into that nothingness for just a moment and let the white noise crash through my tired brain and wash away all of the loud diabetes thoughts...thoughts of ketones that wouldn't go away, low blood sugars that wouldn't come up unless I suspended her pump which in turn would cause her ketones to go up, thoughts of her throwing up again, or having it come out the other end again....and why do I feel the need to state that delicately??? I mean we are all adults here....we are all parents or have parents or will be parents possibly one day....we've all done it...we all think it's gross...no one likes it...but we all know what I'm talking about so why don't I just freakin say it??? Diarrhea!! THERE I said it...I feel better now. So, anyway....those loud thoughts were crashing around in my head and I just wanted to slip away into the white noise and forget for a minute...forget that this is my life...this is our life...diabetes is a part of our life...there is no escaping it...there is no wishing it away...it just is....it is what it is...this is the hand we were dealt...this is the hand we must play. Sure we could choose to fold and lay our cards down on the table....but I've never been one to let a challenge pass me by. I am stubborn, I am strong willed...I am a fighter...I love deeply and I believe in us. Even in the face of all that loud diabetes insanity...ketones, lows, vomit, diarrhea, pumps, bolus, basal.....even when I am feeling lost and like I am wildly flailing my limbs all around struggling to find some sort of step...some sort of ledge...some sort of grip on something..ANYTHING...I know deep down that we can do this...we are strong and we can do this.
So, the physical aspects of diabetes and this particular stomach virus were hard...they are still hanging on by a thread as I type this actually because those stubborn ketones will not let go of their grip. However, the metal and emotional aspects of this particular bout are what almost knocked me flat on my face this time. Last night as Emma laid her head down on her pillow...camped out on the living room floor with me...she began to cry. Through her tears she whispered in her sweet angelic voice full of fear, "Mommy...I'm scared. I'm scared that this time I am REALLY sick." Another piece of my battered and bruised heart broken away again. It's hard to believe that I have any pieces left at this point honestly.
No one tells you at diagnosis about moments like that. The nurse doesn't prepare you for what to say. The doctor doesn't explain to you that your heart will break time and time again. No one tells you that you will have to see the fear in your child's eyes...your baby...the person to whom you gave life. No one tells you that you will have to hear them say these things...that you will have to somehow know what to say to comfort them. No one tells you these things. I haven't decided if it's because they don't want to scare you with too much too soon.............or if they just don't know.
Diabetes for me...almost 4 years in....has shown me that a good chunk of this battle is mental and emotional strength. I just hope I am strong enough to have the right answers for Emma when she needs them.

What sucks? KETONES SUCK!

Ketones ketones you suck
you make me want to scream
you make me want to cry
you make me want to stab you in the eye
I hate sick days.....i really do
i hate them more than a trip to the dentist
more than a trip to the DMV
more than having to talk to the person i dislike more than any other person in the universe
i hate them
it's like trying to juggle a damn chainsaw and a feather all at once
on stage
in Vegas
with a packed audience
spotlight on you
everyone chanting
DROP IT
DROP IT
DROP IT
it effin sucks
this post sucks
i suck
diabetes sucks
stomach viruses suck

but most of all

ketones suck

What my d-life is like

So do you want to know what it's really like? You know when you ask me during regular conversation how things are going and how Emma is doing and if her levels are good yet? Well, I thought I would take this opportunity to explain to you what exactly this life entails just to give you a bit of an idea. I do so not from a place of annoyance or a place of irritation....but more so from a place of wishing to educate.
I wake up every single morning to the sound of my cell phone alarm blaring from in Emma's room next to mine. I have to put it in her room because I have gotten so accustomed to the sound that I sleep through it. I put it in her room because I don't get enough sleep at night and if I were to leave it in my room, I would sleepwalk over to it and shut it off and just go back to bed. So, I here it going off in her room over the baby monitor that is on my nightstand. Yes, she is 8 years old now...far from being a baby anymore...but I have to have a baby monitor in her room because I worry that I won't hear her when I am in bed. I am afraid that she will call to me that she feels like she is having a low blood sugar and I won't hear her...and therefore not go into her room with life saving juice...I'm afraid that she will have a seizure from this low blood sugar and I will be none the wiser...fast asleep in my own bed. I'm afraid that I won't hear her struggles, screams for help, those noises unknown to me that occur when a person is having a seizure. I don't know what those noises sound like...and I pray that I never will. I have the baby monitor set up still even though she is 8 years old now, because I am afraid she will pass away in her sleep...leaving me forever...leaving me on this Earth to somehow attempt to find a way to continue breathing without her by my side.
So, I wake to the alarm blaring over the monitor and I stumble bleary eyed out of bed and over to her room. As I approach her closed bedroom door, I pause for a moment...stealing myself for the worst. I fear that when I open that door one morning...I will find her lifeless body...her heartbeat stolen...the breath from her lungs stolen in the night...diabetes stealing her from me. I hold my breath and open her door....see her smiling face...and my heart starts beating again knowing that I have been blessed with the joy of having her with me for another day. We start each morning with a hug and a "good morning! did you have a good sleep?" I always reply to her question with a lie....I say that I did have a good sleep even though I have not had a good sleep in almost 4 years now. We head downstairs to begin our day.
I go to the kitchen and she sits down on the couch or lays on the floor cuddling with our cat Daisy. Daisy spends a few minutes purring loudly and walking circles around her Emma...as if to say her own version of  'good morning! i love you!' I grab one of my tools of the trade...her blood sugar meter...and pop a test strip in the end, jab a needle into the tip of her finger, squeeze a drop of blood out, and test her blood sugar. I add up the carbs I am about to give her for breakfast and bolus her via her insulin pump for the food she is about to eat. I used to have to look up the carb counts on her food....but now I know most all of them by heart...better than my own phone number actually. After breakfast, she gets dressed and we head out to school. I kiss her goodbye and hold her gaze for just a little bit longer than I normally would. I search her face for signs of a low blood sugar coming. I search her face for signs that she could be in danger because of diabetes once she is out of my care. She heads into school and I head home...my thoughts consumed with the last image of her face. As I walk away, a piece of my heart is left behind. I will worry...I will have this sinking feeling in the pit of my stomach for the next couple of hours. Visions of what could happen while she is at school race through my mind. I worry that she will go low and not catch it....because even though she has gotten better at recognizing those low feelings...she still doesn't get it right all the time...she's only 8. I worry that her teacher won't spot a low. I worry that they will forget to call me if she is low. I worry that when I kissed her goodbye just a few moments ago that it will in fact be the very last time that I get to kiss her goodbye.
I go home and distract myself with cleaning the house, playing on the computer, or any multitude of things while I wait to pick her up for lunch.
Once lunch arrives, we come home and do the same old process of checking her blood, counting carbs, and bolusing her. Her blood sugar can be affected by a million different things. If she had gym class that morning, if she had a test to take, a presentation to give, if we are walking to school versus if we have a ride, if it is sunny, rainy, or freezing out, if she has a cold, if she is getting over having a cold, if she is upset, if her friends are fighting or upset with each other, if she is stressed, excited, worried, sad, mad, tired, hyper, or any other emotion out there. I have to take all of those things into consideration when I choose what to give her to eat and how much insulin to give her for that food. We go back to school and I kiss her goodbye again...lingering again...searching her face again...waiting again for those couple of hours to pass before I can get her at the end of the day.
After school, she comes home and we repeat the process of checking her blood, she does her homework, she plays, she acts like a kid. If she chooses to play outside I must make sure her blood sugar number is ok before she leaves. If she wants to jump on the trampoline I have to work magic better than Houdini and remove her pump, check her blood even more, give her extra food with no insulin to cover it...all because trampolines cause her blood sugar to drop like a rock. Why did we get one then if it's so difficult, you may be asking yourself? Simple.....because she's a kid....and she deserves to play like a kid...regardless of if she has diabetes or not. She didn't ask to have this. We did nothing to cause her to have this. It just happened. Simple as that. The luck of the draw. It's our life and I refuse to let diabetes stop her from being a kid. So we have a trampoline. She jumps. She plays on it....and I make it work.
Supper arrives and we repeat the same process...check blood, count carbs, give insulin, eat. All of those same factors that affect blood sugars come into play again. I adjust things to make it work. I guess. I guess all the time. I guess all day long. Sometimes I'm right. Sometimes I'm wrong. She plays more, we laugh, we go to the park, and we have fun.
Bedtime arrives and the process is repeated again for bedtime snack. It's exhausting. It may not seem like a big deal or a big thing to have to count and adjust and work with numbers all day....but it is. When those numbers you are adding and adjusting have a direct impact on the well-being of your child....it is a big deal. When you are working with those numbers, you can't just assume what you are doing is going to be fine...no problem...because those numbers could very well be the numbers that cause a big enough situation to happen where your child will die.
When she is finished with her snack, she brushes her teeth and we go up to bed. I sing "Twinkle Twinkle Little Star" to her every single night. Yes, she is 8 years old now and that song is a bit baby-ish for her...but I still sing it. It makes her smile. I hold her and kiss her...tell her that I love her...she tells me that she loves me more than hearts and stars. I tuck her in fully knowing that it could be the last time I tuck her in ever. I walk to her doorway and turn out the lights on another day...another successful day...another day that I was lucky enough to spend with her.
I walk downstairs and begin my routine of staying up as late as my body will let me. I check her blood while she sleeps every so often to make sure she is ok and not low...because she has only woken from a low blood sugar once the entire time she has had diabetes. It scares me. I walk into her room and old a flashlight in my mouth while I grab her hand as she sleeps...I jab a needle in her fingertip to get more blood to test it and I am saddened by the fact that she no longer even wakes up or stirs from this act. She has gotten so used to the needles, that she does not even wake from them anymore.
I hold all of the cards in this. I have complete control and complete say in how much insulin goes into my child's body. I am her pancreas. I am only human...I make mistakes every single day. I carry around the enormous weight of the pressure that comes with being the one in charge of keeping my child alive. I am her pancreas.
So if I appear to be distracted or tired....if I appear to not look my best...if I appear to be in a daze or worried or stressed...odds are I am. I don't want your sympathy...I just want to be treated the same as anyone else....I just want to be ok...I want to be ok...and I want a nap.

Reaching for the stars takes work

Do you know that it's ok to dream big? Do you know that it's ok to reach for the stars and set your sights on something that seems so ridiculously out of reach that you could only be fooling yourself into thinking that you would ever come clsoe to actually reaching it? Do you know that it's ok to believe you will get there one day? Do you know that it's ok to let yourself keep that flicker of hope alive...that fire...driving your desire to get there? Do you know that you can do it...you can achieve absolutely anything you put your mind to?

I didn't know those things when I was a kid. I'm not saying that my parents didn't give me the skills or the belief or the self-confidence to try to reach for the stars. I'm sure they told me those things from time to time. I just was never one to really believe in myself. I was never one to think that I was good enough, or smart enough, or that I would ever amount to anything even remotely spectacular in this life. I thought that I was just average. Just middle of the road...smart...but not a genius, funny...but too shy to share it with the world, ok looking...never as pretty as the other girls in my class. I had friends....quite a few actually....but I was never popular in my own eyes. I was never one to hold my head high as I walked the halls of school. I was more the type to focus on my feet and appear to be distracted with something else...so I could avoid eye contact with those that were "popular."

So, when I had Emma...I wanted to make sure that she was confident in her own abilities from the get go. I wanted her to know...really truly know...that it doesn't matter what others may or may not think of her...what truly matter is what she thinks of herself. I wanted to teach her that being who she is...even if it doesn't go along with the popular crowd...is way more important than pretending to be someone she's not. I wanted her to know in her heart that she is a beautiful person...a kind person...a smart and friendly person.

I also wanted her to know that it is ok to dream big and reach for the stars. I wanted to her to experience the joy of the journey. I wanted her to see that it takes hard work and determination to achieve what you want in life. I know she is only 8 years old...but I think that it is important to learn these things at a young age....because then it will stick with you throughout your years and you won't wind up like me....finally realizing these things at 35 years old...a few decades wasted on doubting myself and not having confidence.

I have been helping Emma reach for the stars a lot lately. We have been working on gaining enough attention on the idea she came up with for having a Diabetic Barbie available in hospitals, in homes, in stores for all our Type 1 friends. It brings a joy to my heart to see her get excited over the progress we are making with this and the support we are receiving. It is a joy like none I've felt before. I am seeing the confidence grow inside of her. I am seeing the light in her eyes as she gets to experience first hand how there are massive amounts of people out there in the world who are going to help you...they are going to be there for you and support you. I am seeing her believe. That in and of itself means more to me than anything I could have hoped for in this whole process.