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.