It's the little things that really make you take notice. It's the little things that matter. It's the little things that prove to you that the big picture is really taking shape. It's the little things.
I've been so busy lately that I haven't had much spare time for anything...including making sure that I eat meals. I know...it sounds so stupid and I feel so stupid for even saying something like that. I know whenever I heard people say things like that, I always thought...really?....how could you seriously not find time in your day to just grab a quick sandwich or a bowl of soup....yogurt...a banana..something? Well, I get it now. I get how that special kind of busy feels where you literally have NO time to eat.
Well, for those of you that aren't in the know...I actually have hypoglycemia. I did the 'ol blood test...drank the disgusting drink...the whole deal...and was "officially" diagnosed as hypoglycemic. SO, that means I am supposed to eat several small meals throughout the day to avoid low blood sugars. I'm supposed to focus on the protein, the starches...basically the same foods I would give my own kid to keep her blood sugar at a steady number over night.
Well, I'm not always the greatest at remembering to take care of me. I'm not the best at focusing enough energy doing things to keep myself healthy. As a Mom, it's hard to do.....as a D-Mom, even harder. We spend our days so focused on keeping our kids healthy and their blood sugars in check, that we often times forget about ourselves.
Get to the point about the little things mattering the most already, Amy? Right?
Ok, well this weekend I had eaten breakfast...been too busy to eat lunch...and found myself laying on the couch mid afternoon, unable to have a clear thought, feeling like my head was full of mud, black spots dancing across my vision, my stomach nauseous, the room spinning, whole body shaking, arms and legs and fingers and toes feeling that old familiar tingling sensation I get when I am low. I hate that feeling. It's gross. That is the only word I can think of to describe it....gross. Well, Emma is familiar with low blood sugars. She knows what they feel like obviously and she knows what I look like when I am low. She saw me laying there....walked into the kitchen and grabbed a juice and ritz crackers with cheese. She handed it to me. She even opened up the straw on the juice box and popped it in the box for me. She did this all of her own free will. She saw the low. She reacted. She fixed it. She knows. She gets it because she has lived it and has learned it. She saved me.
Talk about your epic role reversal, eh?
It's the big things....that are really in disguise as the little things. That's what matters.
Monday, November 26, 2012
Just a reminder...she still has diabetes
Sometimes things happen that remind me of just HOW little my daughter's pancreas does. You would think that I would be well aware of this fact seeing as how we are well into our fourth year of living with diabetes. I know it doesn't work. I know she has diabetes. I know that the only thing keeping her alive every day is a combination of her insulin pump, the insulin inside of it, me, and her. I know this...and yet, when normal every day occurances happen...and diabetes decides to rear it's ugly head.....it feels like a slap across my cheek...reminding me.
This weekend Emma held her 5th Annual Hot Chocolate Sale Fundraiser for JDRF. We had a great time, met lots of new people living with this disease, were embraced with support from family and friends, and raised about $1300 while we were out there. During a lull in the event, Emma decided she wanted to eat one of the yummy looking cupcakes that a friend of mine had made for us to sell. I told her the carb count and had complete faith in her bolusing herself before eating it. I mean why would I not? She boluses herself every single day at school as well as many times at home when I am too busy to do it for her. We continued on with our day, both of us distracted with spreading D-awareness, raising money, and having fun.
Afterwards, we arrived home and I had Emma check her blood sugar before dinner.....she was 28.5. For those of you not in the know, normal blood sugar range is supposed to be between 4.0-7.0. So, that gives you a little perspective into what was going on. Emma had forgotten to bolus for her delicious cupcake. She forgot. I forgot to double check with her that she did it. It was a mistake. Mistakes happen. That wasn't the issue I had with things.
The issue I had with things was the 28.5 screaming at me from the meter screen felt like a slap across my cheek. It hurt. It was a huge reminder that she has diabetes. A HUGE reminder that she can't just eat something as simple and innocent as a cupcake without taking insulin for it. A HUGE reminder that she is different than other kids. A HUGE reminder that her pancreas does...not...work. A HUGE reminder that YES this is OUR LIFE. A HUGE reminder that we are not perfect pancreases. A HUGE reminder. I could hear the word "diabetes" SHOUTING in my head in perfect sync with my pounding heart.
DIABETES DIABETES DIABETES! YOUR DAUGHTER HAS DIABETES! IT'S STILL HERE! IT HASN'T GONE AWAY!! IT'S STILL HERE!! HER PANCREAS DOESN'T WORK AND IT NEVER WILL AGAIN! YOUR BEST HOPE TO END THIS MADNESS IS A CURE! DIABETES DIABETES DIABETES!!!! SHE HAS DIABETES!!!!
That friggin 28.5 hurt. I could feel the slap and it stung.
I hate those reminders. I also find it bizarre that it almost feels like I trick myself every day and pretend like this is normal...what we do is normal. It's all normal and I have my shit together and i got this...i got this and i am ok and i don't get sad and i don't dwell on the negative and i make her life normal and regular and just like everyone elses. I fool myself every single day. I'm pretty gullible apparently...because when reminders like that forgotten bolus resulting in a 28.5 occur....it hurts.
I wonder if it will always be like this. I wonder if 10 years from now I will still feel that sting...or if I will become numb to that too.
This weekend Emma held her 5th Annual Hot Chocolate Sale Fundraiser for JDRF. We had a great time, met lots of new people living with this disease, were embraced with support from family and friends, and raised about $1300 while we were out there. During a lull in the event, Emma decided she wanted to eat one of the yummy looking cupcakes that a friend of mine had made for us to sell. I told her the carb count and had complete faith in her bolusing herself before eating it. I mean why would I not? She boluses herself every single day at school as well as many times at home when I am too busy to do it for her. We continued on with our day, both of us distracted with spreading D-awareness, raising money, and having fun.
Afterwards, we arrived home and I had Emma check her blood sugar before dinner.....she was 28.5. For those of you not in the know, normal blood sugar range is supposed to be between 4.0-7.0. So, that gives you a little perspective into what was going on. Emma had forgotten to bolus for her delicious cupcake. She forgot. I forgot to double check with her that she did it. It was a mistake. Mistakes happen. That wasn't the issue I had with things.
The issue I had with things was the 28.5 screaming at me from the meter screen felt like a slap across my cheek. It hurt. It was a huge reminder that she has diabetes. A HUGE reminder that she can't just eat something as simple and innocent as a cupcake without taking insulin for it. A HUGE reminder that she is different than other kids. A HUGE reminder that her pancreas does...not...work. A HUGE reminder that YES this is OUR LIFE. A HUGE reminder that we are not perfect pancreases. A HUGE reminder. I could hear the word "diabetes" SHOUTING in my head in perfect sync with my pounding heart.
DIABETES DIABETES DIABETES! YOUR DAUGHTER HAS DIABETES! IT'S STILL HERE! IT HASN'T GONE AWAY!! IT'S STILL HERE!! HER PANCREAS DOESN'T WORK AND IT NEVER WILL AGAIN! YOUR BEST HOPE TO END THIS MADNESS IS A CURE! DIABETES DIABETES DIABETES!!!! SHE HAS DIABETES!!!!
That friggin 28.5 hurt. I could feel the slap and it stung.
I hate those reminders. I also find it bizarre that it almost feels like I trick myself every day and pretend like this is normal...what we do is normal. It's all normal and I have my shit together and i got this...i got this and i am ok and i don't get sad and i don't dwell on the negative and i make her life normal and regular and just like everyone elses. I fool myself every single day. I'm pretty gullible apparently...because when reminders like that forgotten bolus resulting in a 28.5 occur....it hurts.
I wonder if it will always be like this. I wonder if 10 years from now I will still feel that sting...or if I will become numb to that too.
Tuesday, November 20, 2012
How do you teach perfection
Something occured to me the other day that I thought I would share. I spend a lot of my time trying to teach Emma about her diabetes and show her all the various aspects and minute little intricacies that come with managing this disease. It's a lot. I haven't dumped it all on her at once, like it was dumped on me all at once the day she was diagnosed. Over the past 4 1/2 years, I have taught her and shared things with her a little bit at a time. I've kept it age appropriate...which isn't always easy...because she is mature...and she is smart...and she is very perceptive. I've tried though to keep things in perspective for her and focus on one thing at a time until it seems like she was understanding. The thing that occured to me though is that I think I am stuck in this way of thinking that I am trying to prepare her so well and educate her so well......that she will never make a mistake.
I think that's one of my biggest fears in life.....that when she is grown (if there's not a cure yet), that she will make a fatal mistake...and I would never be able to live with myself. I would feel like a failure. I would feel like it was my lack of preparing her that caused it and that in turn it would be entirely my fault...and how would I ever be able to just keep going after that. I think I have it stuck in my head that if I just do it enough times and if I just explain it to her enough times and if I just show her and talk to her and repeat it repeat it repeat it.....that she will get it....and she will never make a mistake. I feel like I have it stuck in my head that if I just do this....then she will be a perfect pancreas. It occured to me the other day that I am completely 100% wrong in thinking that way.
There is no possible way that she could be perfect. There is nothing more perfect than a fully functioning healthy pancreas. There are pretty good replacements and pretty good stand ins for one....but nothing beats the real deal. I need to somehow come to terms with the fact that I can't prepare her enough...I can't repeat it enough...I can't prevent her mistakes. I can't make her into a perfect pancreas. I can't because she ISN'T one....she's not a pancreas anymore than I am a pancreas. She's human...and humans make mistakes. You do, I do, we all do.....there is no perfect human being on this planet. I need to somehow come to terms with that. I need to get it straight in my head that Emma WILL make mistakes. She WILL make them.....and that's ok....in fact that's a good thing. How the heck did I learn all that I have learned about diabetes?........most of the time it was from trial and error....from making mistakes. That is how we learn...that is how I learned...and that is how SHE will learn. I need to let her make mistakes and just do my best to make sure that the mistakes she will make are not so huge that they will harm her permanently. I need to focus on the big picture and just do my best to make sure that the mistakes she will inevitably make will be minor ones.
Mistakes are good. Mistakes shouldn't be thought of as bad things. I should not expect myself to be able to teach perfection...when I myself am not perfect. It's just not possible.
I'm learning...I'm trying to wrap my head around this concept...I'll get there.
I think that's one of my biggest fears in life.....that when she is grown (if there's not a cure yet), that she will make a fatal mistake...and I would never be able to live with myself. I would feel like a failure. I would feel like it was my lack of preparing her that caused it and that in turn it would be entirely my fault...and how would I ever be able to just keep going after that. I think I have it stuck in my head that if I just do it enough times and if I just explain it to her enough times and if I just show her and talk to her and repeat it repeat it repeat it.....that she will get it....and she will never make a mistake. I feel like I have it stuck in my head that if I just do this....then she will be a perfect pancreas. It occured to me the other day that I am completely 100% wrong in thinking that way.
There is no possible way that she could be perfect. There is nothing more perfect than a fully functioning healthy pancreas. There are pretty good replacements and pretty good stand ins for one....but nothing beats the real deal. I need to somehow come to terms with the fact that I can't prepare her enough...I can't repeat it enough...I can't prevent her mistakes. I can't make her into a perfect pancreas. I can't because she ISN'T one....she's not a pancreas anymore than I am a pancreas. She's human...and humans make mistakes. You do, I do, we all do.....there is no perfect human being on this planet. I need to somehow come to terms with that. I need to get it straight in my head that Emma WILL make mistakes. She WILL make them.....and that's ok....in fact that's a good thing. How the heck did I learn all that I have learned about diabetes?........most of the time it was from trial and error....from making mistakes. That is how we learn...that is how I learned...and that is how SHE will learn. I need to let her make mistakes and just do my best to make sure that the mistakes she will make are not so huge that they will harm her permanently. I need to focus on the big picture and just do my best to make sure that the mistakes she will inevitably make will be minor ones.
Mistakes are good. Mistakes shouldn't be thought of as bad things. I should not expect myself to be able to teach perfection...when I myself am not perfect. It's just not possible.
I'm learning...I'm trying to wrap my head around this concept...I'll get there.
Thursday, November 15, 2012
You may say...
"You may say I'm a dreamer, but I'm not the only one."
You may think I talk too much or don't say enough. You may think that I am overreacting. You may think that I am being dramatic. You may think that I make my life out to be way more difficult than it actually is. You may think that I am a whiner. You may think that I don't have a life. You may think that I focus too much of my attention on diabetes and my kid. You may think that I am making her believe that she is defined by her diabetes. You may think that my hope will get me nowhere. You may think that it will never amount to anything other than wishful thinking. You may think that I am doing it wrong. You may think that I need to lighten up. You may think that I say the things I say and do the things I do because I want the spotlight. You may think that I do it for the attention. You may think that I am annoying. You may think that I post too much about diabetes. You may think that I do it because I have nothing better to talk about and because I let diabetes rule my life and my thoughts and every little aspect of every little thing that happens to us. You may think that I exaggerate. You may think that I don't need to check my kid as much as I do or worry about her as much as I do or stay awake all hours of the night to ensure she is safe. You may think it's not so bad...she could have it worse...she can get help if she wants it. You may think that it's easy.
But you would be wrong.
You may think that I am strong. You may think that I know what I'm doing. You may think that I have it covered and I don't need help or support or sleep or a hug or just a smile. You may think that I do the things I do and say the things I do because I am trying to make a difference. You may think that I do it to help others. You may think that I do it because I know what it feels like to be new and alone and scared and overwhelmed and sad. You may think I have it all under control. You may think that just because I smile and I joke and I laugh that I am ok. You may think that I just want to fix it. You may think that I see the sad look in a new D-Mom's eyes and I feel it....I don't just see the look....but I feel it. I feel it and it hurts and I want to fix it for them. You may think that I can do this.
Sometimes I don't feel like I can do this. Sometimes I feel like I have no idea what I am doing. Sometimes I feel like I am one step away from getting lost in the whirlwind of numbers and pumps and meters and insulin. Sometimes I feel like I have reached the top of the mountain and am standing tall and proud and singing at the top of my lungs with my arms raised high above my head in victory. Sometimes I feel indestructible. Sometimes I feel like I am in control.
Sometimes I forget that my kid has diabetes.
I do........not often....but sometimes.
One day I hope that I can forget that we had to do this at all. One day I hope that we can get off the roller coaster ride of diabetes and just sit down on the park bench and breathe. One day I just want to be able to take a deep breath......close my eyes....and breathe.
While I wait for that day, I will keep talking. I will keep sharing...the good and the bad...the reality. I will keep helping the new people. I will keep trying to fix that sad look in their eyes. I will keep doing it. Because it's all I can do. I don't have a choice. I could curl up in a corner and cover my sad tired eyes with my hands and be afraid of the life being lived all around me....but that's just not who I am. I can't do it. I have to be loud. I have to stand up. I have to share. It's not a choice...it's not an option....it is what it is...and it's just me.
You may think I talk too much or don't say enough. You may think that I am overreacting. You may think that I am being dramatic. You may think that I make my life out to be way more difficult than it actually is. You may think that I am a whiner. You may think that I don't have a life. You may think that I focus too much of my attention on diabetes and my kid. You may think that I am making her believe that she is defined by her diabetes. You may think that my hope will get me nowhere. You may think that it will never amount to anything other than wishful thinking. You may think that I am doing it wrong. You may think that I need to lighten up. You may think that I say the things I say and do the things I do because I want the spotlight. You may think that I do it for the attention. You may think that I am annoying. You may think that I post too much about diabetes. You may think that I do it because I have nothing better to talk about and because I let diabetes rule my life and my thoughts and every little aspect of every little thing that happens to us. You may think that I exaggerate. You may think that I don't need to check my kid as much as I do or worry about her as much as I do or stay awake all hours of the night to ensure she is safe. You may think it's not so bad...she could have it worse...she can get help if she wants it. You may think that it's easy.
But you would be wrong.
You may think that I am strong. You may think that I know what I'm doing. You may think that I have it covered and I don't need help or support or sleep or a hug or just a smile. You may think that I do the things I do and say the things I do because I am trying to make a difference. You may think that I do it to help others. You may think that I do it because I know what it feels like to be new and alone and scared and overwhelmed and sad. You may think I have it all under control. You may think that just because I smile and I joke and I laugh that I am ok. You may think that I just want to fix it. You may think that I see the sad look in a new D-Mom's eyes and I feel it....I don't just see the look....but I feel it. I feel it and it hurts and I want to fix it for them. You may think that I can do this.
Sometimes I don't feel like I can do this. Sometimes I feel like I have no idea what I am doing. Sometimes I feel like I am one step away from getting lost in the whirlwind of numbers and pumps and meters and insulin. Sometimes I feel like I have reached the top of the mountain and am standing tall and proud and singing at the top of my lungs with my arms raised high above my head in victory. Sometimes I feel indestructible. Sometimes I feel like I am in control.
Sometimes I forget that my kid has diabetes.
I do........not often....but sometimes.
One day I hope that I can forget that we had to do this at all. One day I hope that we can get off the roller coaster ride of diabetes and just sit down on the park bench and breathe. One day I just want to be able to take a deep breath......close my eyes....and breathe.
While I wait for that day, I will keep talking. I will keep sharing...the good and the bad...the reality. I will keep helping the new people. I will keep trying to fix that sad look in their eyes. I will keep doing it. Because it's all I can do. I don't have a choice. I could curl up in a corner and cover my sad tired eyes with my hands and be afraid of the life being lived all around me....but that's just not who I am. I can't do it. I have to be loud. I have to stand up. I have to share. It's not a choice...it's not an option....it is what it is...and it's just me.
Monday, November 12, 2012
I choose healthy and loud
I do have to admit though, that sometimes the non-stop questions and the non-stop talking and the non-stop energy that pours from her can get a little tiring. Maybe I just need a nap. Maybe I just need to not have to fight diabetes every single night to make sure she can sleep at night and wake up alive in the morning. Maybe I just need to buy some ear plugs.
I kid, of course......kinda. Some days her non-stop talking and questions makes me feel like I am a character on the Peanuts...sitting in the classroom right alongside Charlie Brown and his buddy Linus....listening to the droning of the teacher. Some days I hear that buzzing drone and i know she is talking to me and I know I should be paying attention because there is bound to be a question coming soon and I had better know what the back story is on this conversation before the question happens and I find myself stumbling for an answer...or giving a lame "uh-huh" reply to her. I know I should be paying attention for the simple fact alone that she is my kid and I should be the person she can count on to pay attention to what she is saying all the time. But, man.......sometimes I just can't. Sometimes I find myself drifting off to that classroom with Charlie Brown and hearing the droning buzz and just waiting for nap time. Being 8 years old is tough. I get that. I know that. I lived it and I remember it. I know there are a lot of questions running through your mind every single second of every single day. I know your mind is like a little sponge and you want to learn it all, say it all, do it all, and tell us all about it afterwards. It's all good stuff...it really is. But sometimes my poor mushy tired D-Momma brain just can't absorb any more words. Sometimes I can't find the right words myself to teach you what a pronoun is and the names of all 50 states and explain to you how come Eve ate the apple in the Garden of Eden and why condensation happens on the bathroom mirror and why Daylight Savings time has to happen and how to spell congeniality and tell you how exactly all of that information is stored on the internet and how come we can type in whatever we want and an answer pops up so quickly and why it's easier to do a front handspring if you take a running start because of the forward motion and why water spreads to the edges of the glass and away from the middle when you swirl it because of centrifugal force and how to spell centrifugal force and who the first person ever to make a movie was and how long the longest movie is and how come airplanes can fly even though they are so heavy and how heavy ARE airplanes actually.....and....and....and.......ahhhh I'm tired.
Then I have moments like last Friday when you had strep throat.....and you were quiet. You were quiet because you were sick. You didn't have any questions. You didn't have anything to chatter on about. You didn't do cartwheels in the living room or headstands on the couch. You were quiet.
and I missed it.
I missed the noise. I missed the movement. I missed the loudness.
I missed it because it is you....and I love you more than hearts and stars.
It made me realize how greatful I really am for the noise.....because the noise means that you are not ill. The noise, the chatter, the cartwheels, and the questions mean that you are healthy.........and I will choose healthy and loud anyday.
The phone call that changed my life
We all have that moment...that memory. We all know exactly where we were when we knew. We know what it felt like...how our insides felt as if they were trying to burst...our grip on sanity slipping....ever so slightly...all because of that moment.
Seeing as how it is Diabetes Awareness Month, I thought I would share my moment. I thought I would let you have a little glimpse into my world...my mind...my life....when I first found out that my daughter had type 1 diabetes.
I had actually been at a friends house when I received that life changing phone call from the doctor. After hanging up the phone, I immediately dialed my husbands number at work to tell him the news. I left the room that Emma was in because I knew that as soon as I heard my husband, Shawn’s voice on the other end of the phone, that I would not be able to hold back the tears. I didn’t want to scare Emma. I didn’t want to worry her already. So, I went downstairs and shut myself in the bathroom and called my husband. It felt like my heart was going to burst right out of my chest. It felt like my throat was closing up on me when I tried to tell him. The tears were spilling over and pouring down my cheeks. I managed to choke out the words, “I have to take Emma to the hospital…they think she has diabetes.” It was the first time that word ever fell from my lips and it left a horrible taste in my mouth…diabetes. When I hung up the phone with him, I leaned against the wall and my body felt weak. My knees gave out on me and I slid to the ground very slowly. Everything felt like it was in slow motion. I sat there on the floor of my friends bathroom feeling numb. It was like I was floating above myself. I was looking down and watching the naïve, carefree, and innocent version of myself. I was watching her sit there in a lump on the floor. Watching the tears fall down her cheeks and seeing each individual droplet fall like rain to the ground in front of her. In one hand she was holding the phone in a death grip as if she wanted to break it in half for being the device which delivered such horrific news. The other hand was placed across her chest as if she was trying to hold everything in…keep it all in place…keep herself whole. I saw the innocent light from within her slowly fading away…getting dimmer and smaller…until it winked out forever signifying the end of her carefree life. I saw this new version of myself stand up, furiously wipe the tears from her face, and try to control the anger and fear building inside her. I knew then that my soul was changed forever. My spirit was now completely different. Sure there were still glimpses of my former self in there, but I was now a changed person. In that split second it took for the doctor to say that one sentence, I was forever changed.
It's amazing what one moment in time can do to you.
Seeing as how it is Diabetes Awareness Month, I thought I would share my moment. I thought I would let you have a little glimpse into my world...my mind...my life....when I first found out that my daughter had type 1 diabetes.
I had actually been at a friends house when I received that life changing phone call from the doctor. After hanging up the phone, I immediately dialed my husbands number at work to tell him the news. I left the room that Emma was in because I knew that as soon as I heard my husband, Shawn’s voice on the other end of the phone, that I would not be able to hold back the tears. I didn’t want to scare Emma. I didn’t want to worry her already. So, I went downstairs and shut myself in the bathroom and called my husband. It felt like my heart was going to burst right out of my chest. It felt like my throat was closing up on me when I tried to tell him. The tears were spilling over and pouring down my cheeks. I managed to choke out the words, “I have to take Emma to the hospital…they think she has diabetes.” It was the first time that word ever fell from my lips and it left a horrible taste in my mouth…diabetes. When I hung up the phone with him, I leaned against the wall and my body felt weak. My knees gave out on me and I slid to the ground very slowly. Everything felt like it was in slow motion. I sat there on the floor of my friends bathroom feeling numb. It was like I was floating above myself. I was looking down and watching the naïve, carefree, and innocent version of myself. I was watching her sit there in a lump on the floor. Watching the tears fall down her cheeks and seeing each individual droplet fall like rain to the ground in front of her. In one hand she was holding the phone in a death grip as if she wanted to break it in half for being the device which delivered such horrific news. The other hand was placed across her chest as if she was trying to hold everything in…keep it all in place…keep herself whole. I saw the innocent light from within her slowly fading away…getting dimmer and smaller…until it winked out forever signifying the end of her carefree life. I saw this new version of myself stand up, furiously wipe the tears from her face, and try to control the anger and fear building inside her. I knew then that my soul was changed forever. My spirit was now completely different. Sure there were still glimpses of my former self in there, but I was now a changed person. In that split second it took for the doctor to say that one sentence, I was forever changed.
It's amazing what one moment in time can do to you.
Saturday, November 10, 2012
The art of being Muffined
I sometimes wonder how we must sound to people in the outside world....aka...the population not familiar with diabetes. There is a whole plethora of words that we use everyday and it sort of makes it seem like we really have our own language to be honest. I can't tell you how many times I have been out in stores and asked my daughter if she is high. To the outside world, that probably seems like an odd thing to be asking an 8 yr. old....but to us, it's normal. When I ask her if she is low, I'm not wondering if she is feeling down or sad...but rather if she feels like her blood sugar is low. When I ask her to check her finger, I am sure I must sound like some sort of weird Mom asking her child to see if she has been picking her nose or something gross like that. When I ask her what she is.........most people would probably think to themselves, "uhhh...she's a girl!"...but really I am looking for a blood sugar number response to that one. When my 8 year old kid shouts to me from across the aisle at the store that there are 20 carbs in a certain food she wants to get, it's not because I have made her into some sort of health nut or put her on a diet.......but rather that we need to know the carbs in every piece of food she puts into her mouth ahead of time.
I was talking with a friend on Facebook tonight...another D-Mom actually...and she had mentioned how her son was struggling with lows tonight because he had attended hockey school today. She explained that she had "juiced" "muffined" and "temp basalled" him. To read that completely made me giggle. We as D-parents have turned so many nouns into verbs. We have our own special language that makes complete and total sense to all of us..........but to the outside world, we must seem like we have a screw loose.
While I can't defend the screw loose perception very well, I can actually say that to sit down and play a game of Scrabble with a room full of D-parents would definitely prove to bring about some interesting results.
We are a unique breed of people. We have tweaked our lives, our emotions, our strengths, our abilities, and even our words....to make it work for us. We do it with style and grace and a little bit of humour thrown in for good measure. And let's be honest....who wouldn't like to be able to say they've been muffined once and a while?
I was talking with a friend on Facebook tonight...another D-Mom actually...and she had mentioned how her son was struggling with lows tonight because he had attended hockey school today. She explained that she had "juiced" "muffined" and "temp basalled" him. To read that completely made me giggle. We as D-parents have turned so many nouns into verbs. We have our own special language that makes complete and total sense to all of us..........but to the outside world, we must seem like we have a screw loose.
While I can't defend the screw loose perception very well, I can actually say that to sit down and play a game of Scrabble with a room full of D-parents would definitely prove to bring about some interesting results.
We are a unique breed of people. We have tweaked our lives, our emotions, our strengths, our abilities, and even our words....to make it work for us. We do it with style and grace and a little bit of humour thrown in for good measure. And let's be honest....who wouldn't like to be able to say they've been muffined once and a while?
Wednesday, November 7, 2012
MY tired is nothing compared to HER tired
Sometimes I get tired
Tired of the numbers. Tired of the routine. Tired of the finger pokes. Tired of the insulin...the carbs...the ratios...the basals...the needles...the blood...the site changes...tired of the whole thing. I get tired of the late nights. The early mornings. The alarms on the pump for a low battery. The fact that I have to carry around so many supplies and treats and juiceboxes with me everywhere I go. The monotony. The never endingness. The guessing. The trial and error. The fact that I have to be patient and wait for a few days to see if I can find a pattern in her blood sugar numbers. The variables. The INSANE amount of things that affect blood sugars.
Sometimes I get tired of the worry. The watching the clock. The waiting. The sick feeling that invades my body and takes over every single thought in my brain when I am battling a low blood sugar that just won't seem to come up. The frustration at high blood sugars that come out of no where....no rhyme or reason...no valid reason as to why it should have appeared on the screen of the blood sugar meter...mocking me...shouting at me.
Sometimes I get tired of the ignorance. The countless times where I have felt like a broken record explaining over and over and over again that my child did nothing to cause this disease...that yes she can eat that cookie...that yes I know you think you would never be able to stick a needle in YOUR child's body. Sometimes I get tired of the pity in your eyes when you ask me if I'm ok...if she's ok...if she's better now...if her blood sugars are more stable finally...if she will grow out of it...and even when you tell me it could be worse. Yes I know it could be worse......but knowing that does not make it any better...knowing that does not make it any easier to deal with...knowing that doesn't make me feel like I should be ok with what we have been dealt.
Sometimes I get tired of always having to fight...to stand up...to speak out...to advocate...to stand up in front of a crowd and share my story...to open up and fight off that shyness and that feeling of my blood rushing to my cheeks as the eyes are all pointed in my direction...listening to my voice...listening to me talk about our demons. Sometimes I get tired of the stigma that comes with being a D-Mom. The stigma that sometimes seems like a tattoo across my forehead....that I did this...it's my fault...I must have done something....I must be exaggerating...I must be making it seem like it's worse than it really is. Sometimes I feel guilty for being tired.
Sometimes I get tired of being tired.
Sometimes I just want to stop.
Sometimes I just want to lay my head down on my pillow and sleep.
Sometimes I get tired of it.
And then I realize that my moments of being tired are numbered. My days of having the opportunity to be not only someone else's pancreas.......but my DAUGHTER'S pancreas.......are winding down. My chance at laying the groundwork and the foundation for her to live a long and healthy happy life....is running out. Right now MY tired is nothing compared to the tired she will have to endure for the rest of her life. MY tired is but a mere blip in the grand scheme of things. MY tired has an ending. MY tired has a finish line. MY tired is not forever.
HER tired? Well......HER tired will continue on long after I am gone from this world. One day soon, MY tired will become HER tired and she will have to carry that burden and that load and that exhaustion each and every single day for the rest of her days....or until a cure is found.
MY tired is nothing compared to HER tired.
Tired of the numbers. Tired of the routine. Tired of the finger pokes. Tired of the insulin...the carbs...the ratios...the basals...the needles...the blood...the site changes...tired of the whole thing. I get tired of the late nights. The early mornings. The alarms on the pump for a low battery. The fact that I have to carry around so many supplies and treats and juiceboxes with me everywhere I go. The monotony. The never endingness. The guessing. The trial and error. The fact that I have to be patient and wait for a few days to see if I can find a pattern in her blood sugar numbers. The variables. The INSANE amount of things that affect blood sugars.
Sometimes I get tired of the worry. The watching the clock. The waiting. The sick feeling that invades my body and takes over every single thought in my brain when I am battling a low blood sugar that just won't seem to come up. The frustration at high blood sugars that come out of no where....no rhyme or reason...no valid reason as to why it should have appeared on the screen of the blood sugar meter...mocking me...shouting at me.
Sometimes I get tired of the ignorance. The countless times where I have felt like a broken record explaining over and over and over again that my child did nothing to cause this disease...that yes she can eat that cookie...that yes I know you think you would never be able to stick a needle in YOUR child's body. Sometimes I get tired of the pity in your eyes when you ask me if I'm ok...if she's ok...if she's better now...if her blood sugars are more stable finally...if she will grow out of it...and even when you tell me it could be worse. Yes I know it could be worse......but knowing that does not make it any better...knowing that does not make it any easier to deal with...knowing that doesn't make me feel like I should be ok with what we have been dealt.
Sometimes I get tired of always having to fight...to stand up...to speak out...to advocate...to stand up in front of a crowd and share my story...to open up and fight off that shyness and that feeling of my blood rushing to my cheeks as the eyes are all pointed in my direction...listening to my voice...listening to me talk about our demons. Sometimes I get tired of the stigma that comes with being a D-Mom. The stigma that sometimes seems like a tattoo across my forehead....that I did this...it's my fault...I must have done something....I must be exaggerating...I must be making it seem like it's worse than it really is. Sometimes I feel guilty for being tired.
Sometimes I get tired of being tired.
Sometimes I just want to stop.
Sometimes I just want to lay my head down on my pillow and sleep.
Sometimes I get tired of it.
And then I realize that my moments of being tired are numbered. My days of having the opportunity to be not only someone else's pancreas.......but my DAUGHTER'S pancreas.......are winding down. My chance at laying the groundwork and the foundation for her to live a long and healthy happy life....is running out. Right now MY tired is nothing compared to the tired she will have to endure for the rest of her life. MY tired is but a mere blip in the grand scheme of things. MY tired has an ending. MY tired has a finish line. MY tired is not forever.
HER tired? Well......HER tired will continue on long after I am gone from this world. One day soon, MY tired will become HER tired and she will have to carry that burden and that load and that exhaustion each and every single day for the rest of her days....or until a cure is found.
MY tired is nothing compared to HER tired.
Saturday, November 3, 2012
Emma and diabetes' first sleepover
Ok, so I have clearly lost my mind and I am letting Emma go to a sleepover tonight. I am scared out of my mind because it is the first sleepover she has ever gone to...it is the first time she has ever slept somewhere without me....the first night my baby girl has slept somewhere else without me since the day she was born. I am scared. I'm scared that diabetes won't play nice. Im scared that she will go low or be too high and get ketones and im scared that something dangerous will happen. I'm scared that the Mom looking after her won't understand my instructions and something bad will happen. I'm scared. I don't think i have been this scared since the day she was diagnosed. What if I am making a mistake? what if I am jumping the gun and letting her do something that she isn't ready to do? How in the hell am I going to be able to get any rest myself tonight? The mom is going to be checking Emma at 11:30.....I set a temp basal....i will be going over there to check her myself at 2:00am....the mom will be checking her again at 6:00am and then i will be there at 8:00am to have breakfast with them and pick her up. In reality....it's only 3 hours till i go over there to check her......and then 6 hours from then till i can pick her up. Thats only 9 hours with her out of my sight.....I am friggin scared...9 hours is a lot of hours when diabetes is along for the ride. I'm scared. I hope everything will be ok. I pray everything will be ok. I want diabetes to leave her alone for the night so she can just enjoy being a kid. I want her to have this experience and get to be a kid.
She is only 8. This is the age where sleepovers begin. This is when it happens. I knew it was coming. I knew my days were numbered. I knew that I would have to reach this day soon enough. I knew it would be hard. I knew i would be scared.............and yet........nothing could have prepared me for how scared i actually am.
I hate this disease and i hate how scared it makes me. I hate that I didn't just drop my kid off at a party....i also dropped diabetes off. It's there. It's eating the pizza and the cake and playing the games. It's making crafts and it's playing Just Dance on the Wii too..........it's there......it's there..........it's always friggin there and i hate it. I hate that i couldnt just drop her off...kiss her goodbye and tell her i will see her in the morning.....i hate it. But this is our life. THIS IS OUR LIFE. There is absolutely nothing I can do about it......because diabetes invaded my family......invaded my child......and THIS IS NOW OUR LIFE.
I have learned over the past 4 1/2 years that i tend to jump into things with both feet. She was diagnosed just two months before starting kindergarten and I was terrified to send her to school..........but i did it. She asked to start on the pump when she was in 1st grade........i was terrified of the change..........but i did it. I just jump in. I rip the proverbial bandaid off and just do it even though it scares the shit out of me. So, I am seeing the irony in the fact that i am doing this. I am keeping up with my pattern of jumping in with both feet and just doing it.
Please God let her be ok tonight. Please keep her safe. Please watch over her when i am not there. Please help the other Mom understand what to do when she needs to. Please let this work. Please let her be ok. Please let her wake up to another day tomorrow and please let me see her beautiful face.
Please.
Just please......please help my heart stop pounding and please help me breathe. Please.
I just want her to get to be a kid.
She is only 8. This is the age where sleepovers begin. This is when it happens. I knew it was coming. I knew my days were numbered. I knew that I would have to reach this day soon enough. I knew it would be hard. I knew i would be scared.............and yet........nothing could have prepared me for how scared i actually am.
I hate this disease and i hate how scared it makes me. I hate that I didn't just drop my kid off at a party....i also dropped diabetes off. It's there. It's eating the pizza and the cake and playing the games. It's making crafts and it's playing Just Dance on the Wii too..........it's there......it's there..........it's always friggin there and i hate it. I hate that i couldnt just drop her off...kiss her goodbye and tell her i will see her in the morning.....i hate it. But this is our life. THIS IS OUR LIFE. There is absolutely nothing I can do about it......because diabetes invaded my family......invaded my child......and THIS IS NOW OUR LIFE.
I have learned over the past 4 1/2 years that i tend to jump into things with both feet. She was diagnosed just two months before starting kindergarten and I was terrified to send her to school..........but i did it. She asked to start on the pump when she was in 1st grade........i was terrified of the change..........but i did it. I just jump in. I rip the proverbial bandaid off and just do it even though it scares the shit out of me. So, I am seeing the irony in the fact that i am doing this. I am keeping up with my pattern of jumping in with both feet and just doing it.
Please God let her be ok tonight. Please keep her safe. Please watch over her when i am not there. Please help the other Mom understand what to do when she needs to. Please let this work. Please let her be ok. Please let her wake up to another day tomorrow and please let me see her beautiful face.
Please.
Just please......please help my heart stop pounding and please help me breathe. Please.
I just want her to get to be a kid.
Friday, November 2, 2012
My Facebook D-Day
In honour of November being Diabetes Awareness Month, yesterday I decided to update my Facebook status every time I did something diabetes related. I wanted to share a little bit about our day....not just the usual statistics and the shocking moments that will inevitably come with managing this disease.......but more so the day to day stuff...the meat of the proverbial diabetes sandwich. I wanted to share with those that do not live this life every day. I wanted to show them that even though I have gotten quite good at pretending that I am not worried and that all is ok ALL of the time.....that in reality, I do worry...I am scared when I drop my kid off at school....I am terrified to go to sleep at night for fear of what will happen inside my daughter's body while I am unconscious. There really isn't a perfect way to explain to someone how it is...how it feels.....the only way I could come up with to get my point across was to share our experiences. It was just one day in our life. One day amongst hundreds now that we have lived with this disease in our house. Just a tiny little snippet of an average day in the life of parenting a child with diabetes.
My best hope for doing this was that people would read it. I felt that as long as they read it, they would gain a little education and a little insight. I felt like maybe...just maybe....they would gain a bit of understanding....true understanding. I wanted them to see that we don't want pity. We don't want the sad faces and sad eyes. We just want understanding.
It just so happened that diabetes threw me a curveball in the morning and caused Emma to be low a couple of times. We dealt with it and moved on. It was pizza day at school. She had a playdate after school, it was cold out, she was tired from the night before from trick or treating. I shared all of the potential factors in things that affect blood sugars. I shared it all. I opened the door to my honest life....and shut off the switch on pretending...for just one day.
The response I got was overwhelming. There were many I have known since I was young who commented and thanked me for sharing and giving them a glimpse into our D-life. There were some that I see every single day that said the same. It made me feel good. It made me feel like I had accomplished something...gotten my point across.
I admit that I was a little worried that most people would just ignore my posts or even block them so they didn't have to read my continuous updates because they were annoying. I admit that after a while, they were even starting to annoy me. I was a little surprised to find myself being annoyed with them because I was the one who was writing them and sharing them! I think that it turned out to sort of be a slap in the face of d-reality for me honestly. I mean I KNOW what we do everyday. I KNOW the stress, the worry, the constant necessity of "being on". I live this life and I know what it entails....however when I wrote it all out like that....status update by status update...moment by moment...as we leaped over each hurdle diabetes put in front of is....it sort of
just....hit....me.....
THIS is what we do
THIS is how we live
THIS is a normal average day for us
The highs, the lows, and everything in between.
It's just how it is. Seeing the words written out like that.........*sigh*...........it hurt my heart.
I was saddened at how quickly we were able to accept this life as normal. I was saddened at how much we have changed in 4+ years and how what once would have been bizarre and scary.........is now our everyday lives.
It also made my heart ache....in a good way. I was amazed at how far we have come...how much more educated we are...how much more comfortable we are...how much determination we have...how nothing will stop us....not even a disease that currently has no cure.
I read my updates and was proud. Proud of myself.....but mostly proud of Emma for she is the one that is truly living it every day in this house.
My best hope for doing this was that people would read it. I felt that as long as they read it, they would gain a little education and a little insight. I felt like maybe...just maybe....they would gain a bit of understanding....true understanding. I wanted them to see that we don't want pity. We don't want the sad faces and sad eyes. We just want understanding.
It just so happened that diabetes threw me a curveball in the morning and caused Emma to be low a couple of times. We dealt with it and moved on. It was pizza day at school. She had a playdate after school, it was cold out, she was tired from the night before from trick or treating. I shared all of the potential factors in things that affect blood sugars. I shared it all. I opened the door to my honest life....and shut off the switch on pretending...for just one day.
The response I got was overwhelming. There were many I have known since I was young who commented and thanked me for sharing and giving them a glimpse into our D-life. There were some that I see every single day that said the same. It made me feel good. It made me feel like I had accomplished something...gotten my point across.
I admit that I was a little worried that most people would just ignore my posts or even block them so they didn't have to read my continuous updates because they were annoying. I admit that after a while, they were even starting to annoy me. I was a little surprised to find myself being annoyed with them because I was the one who was writing them and sharing them! I think that it turned out to sort of be a slap in the face of d-reality for me honestly. I mean I KNOW what we do everyday. I KNOW the stress, the worry, the constant necessity of "being on". I live this life and I know what it entails....however when I wrote it all out like that....status update by status update...moment by moment...as we leaped over each hurdle diabetes put in front of is....it sort of
just....hit....me.....
THIS is what we do
THIS is how we live
THIS is a normal average day for us
The highs, the lows, and everything in between.
It's just how it is. Seeing the words written out like that.........*sigh*...........it hurt my heart.
I was saddened at how quickly we were able to accept this life as normal. I was saddened at how much we have changed in 4+ years and how what once would have been bizarre and scary.........is now our everyday lives.
It also made my heart ache....in a good way. I was amazed at how far we have come...how much more educated we are...how much more comfortable we are...how much determination we have...how nothing will stop us....not even a disease that currently has no cure.
I read my updates and was proud. Proud of myself.....but mostly proud of Emma for she is the one that is truly living it every day in this house.
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