Thursday, January 30, 2014

The common cold blues

Do you know what sucks? When you are coasting along not really letting diabetes into the forefront of your mind...handling blood sugars as they come...seeing consistency....everything is all good good happy happy........

........and boom......she gets a cold....and all hell breaks loose.

Blood sugars seem to increase with every sneeze and ketones lurk around the corner waiting to jump out and join the party inside her body. You hand her tylenol...you become a water fanatic and continually get her to drink more...flush it out...keep drinking water...gets the fluids in you. And you sit there pissed off because it's never just a simple cold. It's never just a sneeze or a sniffle. It's never just a cough. Diabetes is always there...no matter how well you think you're doing at managing it...no matter how much you think you're keeping the focus on life and living and making diabetes step back and not run the show.....it's always there...always. It's there when the numbers are good and the sun is shining and everyone is feeling fine. It's there when the clouds have drifted in hiding the bright blue sky from your eyes and your ears are filled with the sounds of sneeze after sneeze erupting from your child's room and the scent of chicken soup fills the house from the crockpot on the counter. Diabetes is there. Always. No matter how much you try to pretend like it's not and like it doesn't matter and like you got this and it's no big deal.....it's still there.

The thing that gets me the most I think is how it's sort of a slap in the face reminder that my child has diabetes. It may seem silly because of course I know she has diabetes...I know...it's in my face every day. I have become so accustomed to the routine though that checking BG's and bolusing and changing her pump site are just normal tasks that we do every day. The times where I feel as if I have been slapped in the face by diabetes letting me know it's still there, are when she's not well and a ridiculous blood sugar number screams at me from the meter...mocking me....saying, "see? I'm still here! I haven't gone anywhere!" It's maddening.

Sometimes I just wish it was easy. I wish I could pour her a big glass of orange juice and not think twice about the carbs....just give it to her so she can drink the cold tartness in gulps. Almost six years of having things like a common cold wreak havoc on her little body, is exhausting...mentally...physically...pancreatically.

The thing that amazes me every time she isn't feeling well though...is how it doesn't stop her. Diabetes has made her tough...it's made her determined...it's made her keep moving...no matter what. I must admit, that definitely makes moments like this week of sniffles and sneezes and high BG's a bit easier to handle.

Monday, January 20, 2014

Life or death decisions

As I dropped Emma back off at school this afternoon after lunch, I asked her if she felt low still and if she wanted me to stay and recheck her blood sugar in 15 minutes after she came back inside when lunch recess was over. She told me no, that she was fine...and if she felt low, she would handle it. We kissed goodbye and I left her running off to play in the snow.

It kind of hit me all at once as I drove away...just how bizarre it is that we make many life or death decisions every single day. I think that's the thing that is so difficult to explain to someone who doesn't live with diabetes in their house. That's the thing that can't really be put into words. That's the thing that is so difficult to wrap your head around in the beginning days after diagnosis. Every single day...every time you hand your child something to eat or drink...every time you stick a needle into their arm or push a button on their pump and give them insulin....you are making what could be a life or death decision.

I use to agonize over some of those decisions in the beginning...hell, I agonized over every decision honestly. I didn't want to make a mistake that could harm her. I thought about all of the factors involved...the food, the weather, the activity, the mood, past trends, if the stars were aligned...and then I would second guess myself. I lived that way for nearly a year...doubting myself...no confidence in my abilities...afraid that the thing I used to keep her alive would turn out to be the thing which would kill her...and it would be my fault...because I was the one giving it to her.

I was at the store with Emma the other day and I mentioned how we needed to grab some more AA batteries because I had just used my last one to replace the old one in her pump. She laughed and said to me, "weren't you scared when I started pumping and you had to trust a AA battery to keep me alive? That must have been hard." Yes, it was hard. I thought about it for months beforehand honestly. I couldn't believe that I was taking a leap of faith and trusting something that hangs on a rack by the the checkout line at the grocery store to keep my child alive and well.

Over the years I think I've become sort of numbed to the brutal reality of the decisions I make every day. I don't doubt my abilities anymore. I rarely second guess myself. I don't agonize over the extreme magnitude of it being a life or death decision......I just do it...I push the button on her pump. I run through the factors in my head in a matter of seconds....and I just do it.

Don't get me wrong, I still know my decisions can be life or death...I know it in my head and my heart....but it's not in the forefront in the same way anymore. It is what it is and we choose to live every day.

We choose life. We choose making memories. We choose to be in control.

Wednesday, January 15, 2014

Write what you know

They say write what you know...so here goes...this is what I know...

I know that I want another baby, but my husband does not...and this is something I have struggled with every single day for years now.

I know that I get my feelings hurt by others actions and words far too easily...and it makes me mad that I still haven't learned the lesson to not care...

I know that I would do anything for my friends and I love them with all my heart, but it hurts me to feel like I don't have that one friend I just have to call when something happens in my life. I don't have that one person who I can call or go see and know that they won't judge me...or spend the whole time talking about themselves. I don't have that one person who would come over to surprise me on a random day with balloons...just because they were thinking of me and wanted to surprise me. I have a lot of extremely caring friends and like I said, I love them more than I can explain....but I don't have that one specific person...my person...and it makes me sad.

I know that at least once a day I feel like I'm failing as a Mom. I try my best to teach my daughter how to be a good person...a kind person...but sometimes I feel like my best isn't good enough.

I know that the older I get, the more I realize that sometimes choosing happy takes a lot more effort than just sitting there in silence and letting the world carry on around you.

I know that diabetes is hard. Ignorance about diabetes is hard. Being a pancreas for your child is hard.

I know that everybody's a critic.

I know that meeting the friends that live inside my computer for the first time...is one of my most favorite things. To hug them and know that they get it....they know...they live it too...to feel that D-Mom bond beneath your arms...it's comforting. It feels like coming home....like you've been travelling a long distance and finally made your way back home...walking through the door into your warm kitchen...well lit...cozy...smelling like homemade cookies.....comforting.

I know that I'm a good person. I'm a good Mom. I'm a good pancreas. I'm a good friend.

I know that I'm tired.

I know that I can't wait for the day to come when I have nothing left to say that needs to come out in a diabetes blog post.

Thursday, January 9, 2014

I felt like a monster

So Emma is turning ten next month. It's a big deal of course...double digits and all. We were discussing birthday party plans tonight and she mentioned how it would be nice to have a friend or two sleep over after her Rainbow Loom bracelet making party at Michael's craft store. I told her that was fine with me and asked her who she would like to invite to spend the night. After thinking it over for a while, she mentioned one particular friend. This friend has spent the night once before and she's a nice girl...well behaved...very friendly. However, the night she slept over here...I remember her making a big deal out of Emma checking her blood sugar and commenting about how the blood freaked her out and it was gross and couldn't she just not do that. Sigh...I get it...I really do...this friend doesn't see Emma every day...they don't go to school together...so she's not familiar with the whole diabetes routine. I understand and completely get that blood and finger pokes and all that jazz is not for everyone. We didn't shove it in her face. We didn't make a big deal about it. We just went about our regular diabetes business as quickly and discreetly and respectfully as possible while she was here. So, I reminded Emma of this whole scenario from last time and asked her if she was sure that this certain friend was the one she really wanted to spend the night. I didn't want to choose for her...I didn't want to sway her opinion of this friend or make her change her mind...I just wanted to make sure that she was certain with her choice.

Well, what she said next really....well...it left me speechless, to be honest. Emma is big into the Percy Jackson books and movies these days. There's a character in the most recent movie that is a cyclops. The other kids in the story are not...they kind of see him as different...weird...not normal. Emma told me that she changed her mind...she wanted to choose a different friend to spend the night because she remembered how it felt when this friend was making grossed out faces while she checked her blood sugar. She said, "it sort of made me feel like a monster, Mommy...just like in the Percy Jackson movie. It made me feel different and weird. She looked at me like I was weird. I know I'm weird...but I'm weird in a good way...a funny way...not a monster way...and I don't want her to look at me like that, so I think I want to ask someone else."

It kills me to know that she felt like a monster. It feels like someone stuck a knife in my heart and kicked me in the gut. It hurts to know that it's probably not the first time she felt that way....and it most certainly won't be the last. My daughter is tough. She's stronger than most adults I know. She has accepted her diabetes from the very beginning. She lives it. It's all she's ever known for almost as far back as she can remember. She is starting to forget the few memories she had of life before needles and blood and insulin and carbs. Those days are becoming a blurry image in a far off place in a time that lives behind a closed door now. That part of her memory is slipping away...because this is her life now...this is her routine...it is what it is and it belongs to her.

I wish I could fight every battle for her. I wish I could tell every person she will encounter who happens to have a grossed out look on their face or an ignorant comment falling from their lips...I wish I could tell them to shut up. I wish I could tell them to look at my daughter....really LOOK at her...don't feel pity...don't feel disgust...don't project your ignorant thoughts and feelings out and judge her.....I wish I could shield my daughter from all of these people she is sure to come across in her life....

.....but I can't....

I can't always fight her battles...I can't always shield her from the nastiness in the world...I can't allow her to grow up thinking the world is all sunshine and daisies and full of compassionate people everywhere.....because it's not true. There is ugliness out there. I have to teach her that the one thing she can control in these situations is how SHE reacts to them. She has a choice. She can choose to feel like a monster...different...weird. Or she can choose to see it for what it is...ignorance...and not let that ignorance change the way she feels about herself...because the ignorance is a reflection on them....not her. She knows she is strong...and brave...and kind...and compassionate...and funny weird. SHE knows these things....and I know these things....and THAT is what really matters.

Oh.....and diabetes? Fuck you.