I tend to be someone who just jumps in and does it...even if it's scary...even if I'm nervous...even if I don't think I can do it. Correction....I figuratively jump in....because I am totally one of those people that has to "get used to the water" at the pool....I inch in slowly but surely being dragged deeper by my child as I whimper and whine and complain the whole time about how cold the water is. Everything else though....total jump right in.
I remember a couple of days after Emma was diagnosed, we wanted to go to some friends house to pick up our new cat...Daisy. These friends lived about 20-25 minutes away from us...kind of out in the country. I was scared to be that far from home...I was worried about diabetes issues occurring on the drive and having to pull over on the highway out in the middle of a cornfield or something and treat a stubborn low blood sugar. I was scared I would forget to bring something...the meter...enough strips...enough juice boxes. I was scared....but I did it anyway. I got behind the wheel and just drove...and she was fine.
I remember the first time I let her sleep over at a friends house. I was terrified. I check Emma's blood sugar overnight and I couldn't expect my then 8 year old to wake up on her own at 2am to check her own blood sugar and call me. I couldn't expect her friends parents to do it. I couldn't.....or could I? Turns out I could. I kissed her goodbye and dropped her off with a room full of her friends all giggling and squealing...and my girl was a part of it...she was the same...she was one of them. My heart was pounding in my throat...my eyes were stinging as I blinked back tears of fear and worry and panic as I drove home...without her. But I did it. I did it....and she was ok....the parents were incredibly helpful and she had an amazing time just being a kid.
I remember the first time I sent her off to school...just two months after being diagnosed. I was nauseous with fear. I was shaking. I was doubting my decision to send her that entire week beforehand. She was only 4 years old.....FOUR! She was new at this diabetes thing. I was new at it. Her teacher was new at it. We were both new at this school thing. My head was a swirling mess of chaotic terrifying scenarios and what if's and OMG I can't do this...how are they going to know if she's low...what if she passes out...what if they don't help her...what if I become paralyzed with fear as I hold her tiny little hand in mine as I walk her up to the door to her classroom? What if? What if I'm making a huge mistake? Well, I didn't....she was fine...she was more than fine actually. She managed her blood sugar checks all on her own from the very first day...her teacher was my partner in pancreating...Emma learned a lot...she had a wonderful time...she made friends...we jumped in together...with our hands raised high above our heads and our cheeks flush with excitement. We did it...together.
Well, two days from now....we will jump in again. Emma will be starting 4th grade. She will be expected to take on a bit more responsibility with her disease this year. It's a good thing. It's a scary thing. This will be the first year Emma won't have two teachers assistants in the room with her to help look out for her. This is the first year she will have a male teacher. This is his first year teaching students this young (he's never taught anyone younger than 6th grade). We've met him and he's on board with being on our pancreating team...which is a relief. He is admittedly forgetful...which is where my fears come in. So, Emma will be wearing a watch this year with alarms set everyday to remind her and her teacher about testing before snack times. I'm relying solely on Emma in the beginning days to recognize her lows and tell someone that she needs to test and eat something or drink a juice box. Her teacher won't know what she looks like or acts like exactly when she's low until he has some days under his belt with her....so I'm putting the majority of my faith and trust in my daughter. She's 9. She's had diabetes for 5 years now. She's never attended school without diabetes along for the ride. It's been with her since day 1. My fear is there...like a lump of hot coal in my gut. But I know, we can do this...we always do. We will jump in with both feet together and we will be fine....we will rock it. She will be just fine. This is nothing new in our lives and we will take that leap together once again....it's just what we do....we jump in and never look back.
Saturday, August 31, 2013
Monday, August 26, 2013
It's too hard
Sometimes it's just too hard.
It's hard to put on that happy face. It's hard to fit in. It's hard to realize that not everyone will be there for you even if you naively thought they would be. Sometimes it feels like no one really gives a shit. No one really cares. No one really gets it. They just nod and smile and keep talking about themselves.
It's hard to keep going. It's hard to choose happy 100% percent of the time. Words are easy...actions are hard. Sometimes I look around and wonder how the hell did I wind up here. I'm 36 and I'm here. It's hard to know that there will probably be no end to it. It's so hard to know that.....that I can't even think it....let alone speak it because I'm scared of the weight of those words and I'm scared of what they will do to me and I'm terrified that they will shatter me.
Sometimes it's hard to breathe. It's hard to see beyond what's in front of my face. It's hard not to feel guilty or jealous or angry. It's hard to shove all of the negative down....way down...and just live in the make believe world of strength and happy. It's hard to know that my every day is not normal....yes it's my normal....and I try my best....but it's not normal. It's not easy. It's not fun to silence the wishes in my head. Those wishes and hopes and dreams that are stifled by something that's completely out of my control.
It's hard.
And it hurts.
And sometimes that hurt bubbles up to the surface and it makes me feel like I am completely alone. Like the world is carrying on around me and I am standing there on the sidelines screaming for help and no one hears me because no sound actually comes out. It makes me feel trapped...and lost...and in the dark...and lonely.
Sometimes despite the fact that my head knows that I'm not alone....my heart begs to differ.
It's hard to put on that happy face. It's hard to fit in. It's hard to realize that not everyone will be there for you even if you naively thought they would be. Sometimes it feels like no one really gives a shit. No one really cares. No one really gets it. They just nod and smile and keep talking about themselves.
It's hard to keep going. It's hard to choose happy 100% percent of the time. Words are easy...actions are hard. Sometimes I look around and wonder how the hell did I wind up here. I'm 36 and I'm here. It's hard to know that there will probably be no end to it. It's so hard to know that.....that I can't even think it....let alone speak it because I'm scared of the weight of those words and I'm scared of what they will do to me and I'm terrified that they will shatter me.
Sometimes it's hard to breathe. It's hard to see beyond what's in front of my face. It's hard not to feel guilty or jealous or angry. It's hard to shove all of the negative down....way down...and just live in the make believe world of strength and happy. It's hard to know that my every day is not normal....yes it's my normal....and I try my best....but it's not normal. It's not easy. It's not fun to silence the wishes in my head. Those wishes and hopes and dreams that are stifled by something that's completely out of my control.
It's hard.
And it hurts.
And sometimes that hurt bubbles up to the surface and it makes me feel like I am completely alone. Like the world is carrying on around me and I am standing there on the sidelines screaming for help and no one hears me because no sound actually comes out. It makes me feel trapped...and lost...and in the dark...and lonely.
Sometimes despite the fact that my head knows that I'm not alone....my heart begs to differ.
Friday, August 23, 2013
Accept, Correct, and Move On
I lost today. In fact, if I'm being totally honest....I've lost the past few days. Diabetes has been kickin my ass with high blood sugars for a while now and I think it's a combination of being on vacation in Wisconsin last week visiting my family....and the fact that Emma got injured while we were there. Last Friday we took her to a place called Monkey Joes that is for kids....they have a bunch of bouncy castles and slides and games for kids to play. It's really a neat place! Emma decided to do a flip on one of the bouncy castles though and that's where it all began. She wound up kneeing herself in the forehead somehow and landed the whole maneuver on her head. Now, my kid is not the most graceful...she probably gets that from me actually...but she has taken gymnastics classes since she was almost 3 and knows how to land from a fall...this time though...ahhh...I think it was just the fates turning against us. She crawled out of there crying and holding her neck, poor kid.
Here we are one week later, a nasty bruise on her knee from the impact, neck still sore, a visit to the doctor, X-rays of her spine because said doctor was so concerned, and high blood sugars ever since. I know...we've been doing this for five years now and I shouldn't be surprised...I'm not surprised...just frustrated. I'm frustrated and exhausted...and I feel guilty for being frustrated and exhausted. I mean it's not ME who is having to deal with the blood sugars directly...it's not ME who is walking around with a sore neck...it's her.
Every time we check her blood sugar, I hold my breath a little bit...I think to myself, it's gotta be over now...I've increased basals, I've changed ratios, I've changed her site, I've corrected and rage bolused and set temp basals....it's gotta be a good number now...it has to be.....
....and then it's not....
....it's still high....
mocking me...shouting at me from the meter saying "nah nah na boo boo! I'm still high! Nice try, but you lose!"
I cringe...and I correct...and I set another temp basal...and I take a deep breath and swallow my anger and move on. It's what I have become an expert at over the years....accepting...correcting...and moving on. I wish diabetes would move on already. I'm tired of being the bigger person and always having to be the one to move on.
And then I look at her smiling face...her giggles...her love...and I am greatful for the technology and the ability and the CHANCE to accept...correct...and move on. It's a battle I will fight all the days of my life....because she IS my life.
Here we are one week later, a nasty bruise on her knee from the impact, neck still sore, a visit to the doctor, X-rays of her spine because said doctor was so concerned, and high blood sugars ever since. I know...we've been doing this for five years now and I shouldn't be surprised...I'm not surprised...just frustrated. I'm frustrated and exhausted...and I feel guilty for being frustrated and exhausted. I mean it's not ME who is having to deal with the blood sugars directly...it's not ME who is walking around with a sore neck...it's her.
Every time we check her blood sugar, I hold my breath a little bit...I think to myself, it's gotta be over now...I've increased basals, I've changed ratios, I've changed her site, I've corrected and rage bolused and set temp basals....it's gotta be a good number now...it has to be.....
....and then it's not....
....it's still high....
mocking me...shouting at me from the meter saying "nah nah na boo boo! I'm still high! Nice try, but you lose!"
I cringe...and I correct...and I set another temp basal...and I take a deep breath and swallow my anger and move on. It's what I have become an expert at over the years....accepting...correcting...and moving on. I wish diabetes would move on already. I'm tired of being the bigger person and always having to be the one to move on.
And then I look at her smiling face...her giggles...her love...and I am greatful for the technology and the ability and the CHANCE to accept...correct...and move on. It's a battle I will fight all the days of my life....because she IS my life.
Monday, August 19, 2013
Living in the Deep End
Do you want to know what I think the whole point of this all is? I think that we were handed this diabetes card in our lives because we were meant to live deeper. I know what you're thinking...live deeper? What the heck does that mean, Amy? Well, let me break it down for ya.
I don't think we were "chosen" so to speak. I think it was just our destiny. I think we were handed this card for a reason...to live deeper. We were meant to feel things differently than others...see things differently...live, laugh, and love deeper than what we would have otherwise done. No matter how hard we try to explain it to others who don't live this particular life, it will never truly make sense...we will never find the right exact words to make them understand what it's like. The only thing I can think of to compare it to is how different I was before I became a Mom. I was always told by my own mom and other friends who were already parents that it's an indescribable feeling to become a parent. Up until that point, I spent my life caring about myself and usually putting my own thoughts and feelings first. Well, once I held Emma in my arms for the first time....I changed. From that day forward I began to live my life for her. I put her first...her feelings...her thoughts...her happiness...it all has become more important to me than anything else on this Earth.
I think this was our destiny because we are meant to share these deep feelings with each other and create these bonds that would have otherwise not been formed. I think we are meant to try to show the rest of the world that true strength and love and purpose comes from living in the moment and not just enduring the journey or making it through the day...but rather savouring every last second that we are given together.
I think the needles and the highs and the lows and the carbs and the chaos of the monotony is a fact of our lives that we have to learn to accept and still find a way to connect deeper and share what we know. Share how living in the deep end of the pool is frightening...and extreme...and difficult...and sometimes it makes us feel like we are sinking and flailing our arms as we gasp for another breath. But also share how living in the deep end is freeing and sometimes it makes us feel like we could swim for miles and how we feel strong and connected to our bodies and the waters around us....we are in sync with each breath we take and each beat of our heart makes us realize that it's ok to float along holding hands with those around us...those we love...those we would jump in to save without a second thought.
Diabetes makes us feel deeper...love deeper...and live deeper.
I don't think we were "chosen" so to speak. I think it was just our destiny. I think we were handed this card for a reason...to live deeper. We were meant to feel things differently than others...see things differently...live, laugh, and love deeper than what we would have otherwise done. No matter how hard we try to explain it to others who don't live this particular life, it will never truly make sense...we will never find the right exact words to make them understand what it's like. The only thing I can think of to compare it to is how different I was before I became a Mom. I was always told by my own mom and other friends who were already parents that it's an indescribable feeling to become a parent. Up until that point, I spent my life caring about myself and usually putting my own thoughts and feelings first. Well, once I held Emma in my arms for the first time....I changed. From that day forward I began to live my life for her. I put her first...her feelings...her thoughts...her happiness...it all has become more important to me than anything else on this Earth.
I think this was our destiny because we are meant to share these deep feelings with each other and create these bonds that would have otherwise not been formed. I think we are meant to try to show the rest of the world that true strength and love and purpose comes from living in the moment and not just enduring the journey or making it through the day...but rather savouring every last second that we are given together.
I think the needles and the highs and the lows and the carbs and the chaos of the monotony is a fact of our lives that we have to learn to accept and still find a way to connect deeper and share what we know. Share how living in the deep end of the pool is frightening...and extreme...and difficult...and sometimes it makes us feel like we are sinking and flailing our arms as we gasp for another breath. But also share how living in the deep end is freeing and sometimes it makes us feel like we could swim for miles and how we feel strong and connected to our bodies and the waters around us....we are in sync with each breath we take and each beat of our heart makes us realize that it's ok to float along holding hands with those around us...those we love...those we would jump in to save without a second thought.
Diabetes makes us feel deeper...love deeper...and live deeper.
Sunday, August 18, 2013
Finding comfort in diabetes
So we are back from our annual road trip home to Wisconsin to visit my family....and I'm tired...not regular Amy tired...but beyond tired. I tried my best at being a pancreas...we had lows...we had highs...we had fun. Now that I'm back home in Ontario, I feel weird....like everything looks different...everything feels different...like I don't belong here and yet I don't belong there either. I feel like I don't belong anywhere. It's odd how the one constant in my life is diabetes. No matter where I am...it's always there. In Wisconsin, Ontario, or in the middle of some random town on the highway. I don't want to say it was comforting to have that one constant....because comforting isn't the right word totally. It was just there...and normal...and the same.
While I was there, laying in the bed next to my sleeping daughter, I started thinking about random things. I thought about what I think Heaven would be like. I know...weird, right? Yea...well I am weird...sorry. I think Heaven is a place where you get to relive all of your favorite memories...you get to do them all over again...experience the laughs and the smiles and the love. You get to experience your first time riding a bike again...your first sleepover at a friends house...your first date...your first love...your wedding day...the day your child is born...all the moments that are stored away in your mind forever.
I think that would be amazing. Maybe it's because I was just back in the city I grew up in...visiting all the old familiar places with my daughter...or maybe it was the day I snuck into my old junior high school and high school with my daughter...and walked behind her down the hallways...realizing how strange that moment was...I hadn't been there for 18 years...and there I was with my daughter, showing her the gym and the rooms and hallways that I wandered as a teenager. Maybe it was seeing my kid take the dog for a walk with her Papa. Maybe it was seeing her play on the playground of my elementary school with the first best friend I ever made when I was 5 years old. I don't know...maybe it was all of these things...they all made me think of all the memories I have stored away.
I feel torn in two once again...being back home. My family is there...and my family is here. It's hard. It's sad. It's a bizarre feeling that I know will eventually go away.
Diabetes is always there. It's a constant in my inconsistent life. It's normal. It's my normal. It's familiar...and what a strange thing to find comfort in. Diabetes, you never cease to amaze me.
While I was there, laying in the bed next to my sleeping daughter, I started thinking about random things. I thought about what I think Heaven would be like. I know...weird, right? Yea...well I am weird...sorry. I think Heaven is a place where you get to relive all of your favorite memories...you get to do them all over again...experience the laughs and the smiles and the love. You get to experience your first time riding a bike again...your first sleepover at a friends house...your first date...your first love...your wedding day...the day your child is born...all the moments that are stored away in your mind forever.
I think that would be amazing. Maybe it's because I was just back in the city I grew up in...visiting all the old familiar places with my daughter...or maybe it was the day I snuck into my old junior high school and high school with my daughter...and walked behind her down the hallways...realizing how strange that moment was...I hadn't been there for 18 years...and there I was with my daughter, showing her the gym and the rooms and hallways that I wandered as a teenager. Maybe it was seeing my kid take the dog for a walk with her Papa. Maybe it was seeing her play on the playground of my elementary school with the first best friend I ever made when I was 5 years old. I don't know...maybe it was all of these things...they all made me think of all the memories I have stored away.
I feel torn in two once again...being back home. My family is there...and my family is here. It's hard. It's sad. It's a bizarre feeling that I know will eventually go away.
Diabetes is always there. It's a constant in my inconsistent life. It's normal. It's my normal. It's familiar...and what a strange thing to find comfort in. Diabetes, you never cease to amaze me.
Saturday, August 10, 2013
Looking in the Rearview
Emma and I are going on our annual road trip back home to Wisconsin tomorrow. It's over a 9 hour drive. This will be our third time doing it and I get the same feeling of....worry?...fear?...stress?...I don't know how to describe it...but it's the same feeling I get the night before we leave every time.
I'm not afraid of the drive itself...or getting lost...or anything like that. I am afraid of the fact that the big D will be in the backseat with us. I'm afraid that she will rip her site out and I will have to do an impromptu site change on the side of the highway. I'm afraid that she will go low in the backseat and not be able to reach the juice boxes or get the straw open and into the box itself. I'm afraid that we will wind up sitting on the side of the highway in some random town in the middle of nowhere with no help in sight and I will be out of low snacks (which is a complete impossibility because I've packed enough low snacks to last her a month easily....but this is where my irrational mind goes on the eve of our trip) and I won't know what to do and I will sit there panicking and trying to flag down someone to help us and she will be crying and low and my worst nightmare will come true. I'm afraid that I will be driving down the highway and look in my rear view mirror and she will be asleep...but I will think she's passed out from a low and I will freak out. Basically I have all of those irrational thoughts and scenarios and visions running through my head. And I know they are irrational...and I know they are all things that most likely will not happen...but I still think of them. I still have to go through this process and I know once we are actually on the road, that I will be fine...she will be fine.
Looking in the rear view, I need to see her....not just the big D. I need to realize that I know what I'm doing...she knows what she's doing...and together we make an incredible team.
Looking in the rear view, I need to see all the miles we have travelled...literally and metaphorically. I need to allow myself to see them and realize that we have come a long way. We have not only just made it through some intensely difficult situations since D came into our lives, but we have lived them and experienced them and became better people and closer together because of them.
Looking in the rear view mirror, I need to see that the big things...the important things...the moments we remember and laugh about later, are all moments that had nothing to do with diabetes.
Diabetes may be in the back seat with us tomorrow, but I can always kick it out and strap it down in the trunk if it tries to be a backseat driver. I wish more than anything that I could kick it out of the car and laugh as it tumbles across the highway...but for now....for this moment...for this years road trip, I will settle for looking in the rear view mirror and sticking my tongue out at it instead.
I'm not afraid of the drive itself...or getting lost...or anything like that. I am afraid of the fact that the big D will be in the backseat with us. I'm afraid that she will rip her site out and I will have to do an impromptu site change on the side of the highway. I'm afraid that she will go low in the backseat and not be able to reach the juice boxes or get the straw open and into the box itself. I'm afraid that we will wind up sitting on the side of the highway in some random town in the middle of nowhere with no help in sight and I will be out of low snacks (which is a complete impossibility because I've packed enough low snacks to last her a month easily....but this is where my irrational mind goes on the eve of our trip) and I won't know what to do and I will sit there panicking and trying to flag down someone to help us and she will be crying and low and my worst nightmare will come true. I'm afraid that I will be driving down the highway and look in my rear view mirror and she will be asleep...but I will think she's passed out from a low and I will freak out. Basically I have all of those irrational thoughts and scenarios and visions running through my head. And I know they are irrational...and I know they are all things that most likely will not happen...but I still think of them. I still have to go through this process and I know once we are actually on the road, that I will be fine...she will be fine.
Looking in the rear view, I need to see her....not just the big D. I need to realize that I know what I'm doing...she knows what she's doing...and together we make an incredible team.
Looking in the rear view, I need to see all the miles we have travelled...literally and metaphorically. I need to allow myself to see them and realize that we have come a long way. We have not only just made it through some intensely difficult situations since D came into our lives, but we have lived them and experienced them and became better people and closer together because of them.
Looking in the rear view mirror, I need to see that the big things...the important things...the moments we remember and laugh about later, are all moments that had nothing to do with diabetes.
Diabetes may be in the back seat with us tomorrow, but I can always kick it out and strap it down in the trunk if it tries to be a backseat driver. I wish more than anything that I could kick it out of the car and laugh as it tumbles across the highway...but for now....for this moment...for this years road trip, I will settle for looking in the rear view mirror and sticking my tongue out at it instead.
Thursday, August 8, 2013
600
600.
This is the 600th time I've posted on my blog. 600 times of pouring my heart out, blabbing ridiculous thoughts that ran into my head in the wee hours of the morning. 600 times I've sat in front of my keyboard with anger coursing through my veins over this disease, tears streaming down my cheeks as I try to wipe them away just to be able to see the letters before me. 600 times I've let all of the randomness and fears and joys and victories and defeats and heartbreak and proud moments out of my head and through my fingers into words. I don't always make sense. I don't always get my point across. I don't always talk about diabetes.
600 times I have tried. I've tried to share a little bit about my life...a little glimpse of what it's like to be a Mom to a child with type 1 diabetes. I've tried to let you know that you're not alone...I'm standing there right beside you...holding your hand as we walk this path together...lifting you up when you need it. I've tried to make you see that anything is possible...even with diabetes along for the ride. I've tried to make you laugh in spite of it all. I've tried to encourage you and be supportive and help you find your voice.
600 times I've shared my deepest darkest thoughts and been afraid to hit the "publish" button for fear of judgement....but hit it anyway...because I know there's someone else out there somewhere in the world who feels the same way and will find comfort in knowing they are not alone. I've made friends that are now my family because of this blog. I've met some incredible people on this journey that have given more to me than I could have ever dreamed of returning to them simply through this little old blog here.
600 times. That's a lot of words. A lot of thoughts. A lot of feelings. A lot of life lived.
Thanks for being there for me and thanks for reading. Thanks for helping me see that this blog has not only helped me through the past years with diabetes....but it has also helped you.
The web address of this here blog that I started is laughingatdiabetes.blogspot.com because I wanted to share some laughs in spite of the stress and worry this disease brings. It turned out to be so much more for me though. Yes, I've laughed a lot....but I've also cried...and sometimes in life you have to let it out and cry a little so you can see clearly again and find your way back to the laughs.
Thanks for laughing with me.
This is the 600th time I've posted on my blog. 600 times of pouring my heart out, blabbing ridiculous thoughts that ran into my head in the wee hours of the morning. 600 times I've sat in front of my keyboard with anger coursing through my veins over this disease, tears streaming down my cheeks as I try to wipe them away just to be able to see the letters before me. 600 times I've let all of the randomness and fears and joys and victories and defeats and heartbreak and proud moments out of my head and through my fingers into words. I don't always make sense. I don't always get my point across. I don't always talk about diabetes.
600 times I have tried. I've tried to share a little bit about my life...a little glimpse of what it's like to be a Mom to a child with type 1 diabetes. I've tried to let you know that you're not alone...I'm standing there right beside you...holding your hand as we walk this path together...lifting you up when you need it. I've tried to make you see that anything is possible...even with diabetes along for the ride. I've tried to make you laugh in spite of it all. I've tried to encourage you and be supportive and help you find your voice.
600 times I've shared my deepest darkest thoughts and been afraid to hit the "publish" button for fear of judgement....but hit it anyway...because I know there's someone else out there somewhere in the world who feels the same way and will find comfort in knowing they are not alone. I've made friends that are now my family because of this blog. I've met some incredible people on this journey that have given more to me than I could have ever dreamed of returning to them simply through this little old blog here.
600 times. That's a lot of words. A lot of thoughts. A lot of feelings. A lot of life lived.
Thanks for being there for me and thanks for reading. Thanks for helping me see that this blog has not only helped me through the past years with diabetes....but it has also helped you.
The web address of this here blog that I started is laughingatdiabetes.blogspot.com because I wanted to share some laughs in spite of the stress and worry this disease brings. It turned out to be so much more for me though. Yes, I've laughed a lot....but I've also cried...and sometimes in life you have to let it out and cry a little so you can see clearly again and find your way back to the laughs.
Thanks for laughing with me.
Wednesday, August 7, 2013
I don't want to be a veteran
Sometimes I get the feeling like people think that because we have been doing this for so many years now, that it's easy...and we don't have any issues with it...and that it doesn't affect me or her anymore. I get the feeling like once a few years have gone by, people label you as a veteran....friends, family members, other d-parents, even doctors and nurses. Its like you reach a certain point in this life where you are just expected to be ok or something. I don't know when it occurred or how many days actually went by before I technically reached that point in other people's eyes...but I feel like we're there...like we are perceived as veterans already.
Just yesterday, sitting in the dreary little room at the hospital clinic for Emma's checkup, even the doctor referred to us as veterans. He had a student with him and was explaining to him a little bit about Emma's insulin pump. He shared her history...when she was diagnosed...how old she is, etc...and he said, "ahh but they're veterans now...they get it." It kind of irked me a little bit to be honest. I don't like being referred to as a veteran because I don't feel like I am. Yes, I know more today than I did five years ago....but I don't know everything. I dont think it's possible to know everything about diabetes because there are an infinite number of scenarios and possibilities and chance occurrences that can and usually do affect it. To me, it sort of felt like I was just kind of there....because I had to be...not because I had any questions or because I needed to be instructed on something....I was just there.
Being called a veteran makes me realize that we have been doing this for a long time...and I don't like that reality in my face. To be honest, I feel brushed off sometimes and looked over and passed by because I'm expected to just know it and get it and have the answers and be ok with it all and not get riled up about it anymore.
Being called a veteran feels like I am kind of on my own....like I'm not allowed to have any strong feelings about a bad number or a bad d-day. Like those who are close to me think...ahh she's fine...they're fine...they know what they're doing...she doesn't and shouldn't need any help anymore.
While I wouldn't trade and go back to having to relive those early months after diagnosis again, it still would be nice if the weight that comes along with the word "veteran" wasnt so heavy.
Just yesterday, sitting in the dreary little room at the hospital clinic for Emma's checkup, even the doctor referred to us as veterans. He had a student with him and was explaining to him a little bit about Emma's insulin pump. He shared her history...when she was diagnosed...how old she is, etc...and he said, "ahh but they're veterans now...they get it." It kind of irked me a little bit to be honest. I don't like being referred to as a veteran because I don't feel like I am. Yes, I know more today than I did five years ago....but I don't know everything. I dont think it's possible to know everything about diabetes because there are an infinite number of scenarios and possibilities and chance occurrences that can and usually do affect it. To me, it sort of felt like I was just kind of there....because I had to be...not because I had any questions or because I needed to be instructed on something....I was just there.
Being called a veteran makes me realize that we have been doing this for a long time...and I don't like that reality in my face. To be honest, I feel brushed off sometimes and looked over and passed by because I'm expected to just know it and get it and have the answers and be ok with it all and not get riled up about it anymore.
Being called a veteran feels like I am kind of on my own....like I'm not allowed to have any strong feelings about a bad number or a bad d-day. Like those who are close to me think...ahh she's fine...they're fine...they know what they're doing...she doesn't and shouldn't need any help anymore.
While I wouldn't trade and go back to having to relive those early months after diagnosis again, it still would be nice if the weight that comes along with the word "veteran" wasnt so heavy.
Tuesday, August 6, 2013
Sometimes I want to Scream
Sometimes I just want to scream. I want to scream at the world. Scream until my ears are ringing and my throat is burning and my voice comes out as nothing but a whispered squeak. I want to scream about how unfair it is...how the numbers sometimes make me feel like I am drowning in a pool of ice cold water...how the whole monotonous never-ending fight sometimes makes me feel like I am teetering on the edge the world. I want to scream and cry and just let it all out in one giant frenzied moment of pure hate...hate for what his disease does to her body...what it does to my mind...what it does to this family. I want to just drop my shield and take off my armor and stand there defenceless and open and vulnerable and just let it out. Sometimes I feel like I could cry for days...white hot tears...tears built up from all the years of sleepless nights and frustrating highs and dangerous frightening lows. I want to scream about how your sniffles and your missed nap and your paper cut are nothing....nothing! I want to scream, you have no idea...none...and I hope and pray to God that you never do! I want to scream why? Why us? Why her? I want to scream until I can't scream anymore and just collapse on ground in a pile of nothing.
Sometimes I want to scream because I am exhausted and I feel like no one cares and no one gets it and no one knows what it does to my heart when I see a stupid number on the meter. Sometimes I want to scream because I am so sick and tired of the judgement and those that claim to be there and yet are never there and those that never even say a word and those that are fake and those that never see past the ends of their own noses. Sometimes I want to scream because I just simply hate it and I wish it wasnt here. Sometimes I just can't take it anymore...not one more blood sugar check or one more high or one more low or one more dizzying ride on this carnival ride from hell.
Sometimes I hate it so much that it almost scares me.
After five years, I've gotten pretty good at hiding my "sometimes feelings" behind my laughs and my sarcasm and my smile. I've gotten good at pretending like it doesn't affect me anymore. I've gotten pretty good at the whole "just keep swimming" mentality. I know I'm not a pancreas. I know it's just a number. I know it's only a snapshot of that particular moment in time. I know technology has improved. I know big things are on the horizon. I know it's all full of hope. I know this.
...but sometimes I just want to scream anyway...
...because I know it's her disease...
...and even though I am at the controls for now...
...one day, it will be only hers...
And that makes me want to scream.
Sometimes I want to scream because I am exhausted and I feel like no one cares and no one gets it and no one knows what it does to my heart when I see a stupid number on the meter. Sometimes I want to scream because I am so sick and tired of the judgement and those that claim to be there and yet are never there and those that never even say a word and those that are fake and those that never see past the ends of their own noses. Sometimes I want to scream because I just simply hate it and I wish it wasnt here. Sometimes I just can't take it anymore...not one more blood sugar check or one more high or one more low or one more dizzying ride on this carnival ride from hell.
Sometimes I hate it so much that it almost scares me.
After five years, I've gotten pretty good at hiding my "sometimes feelings" behind my laughs and my sarcasm and my smile. I've gotten good at pretending like it doesn't affect me anymore. I've gotten pretty good at the whole "just keep swimming" mentality. I know I'm not a pancreas. I know it's just a number. I know it's only a snapshot of that particular moment in time. I know technology has improved. I know big things are on the horizon. I know it's all full of hope. I know this.
...but sometimes I just want to scream anyway...
...because I know it's her disease...
...and even though I am at the controls for now...
...one day, it will be only hers...
And that makes me want to scream.
Friday, August 2, 2013
My favorite things about diabetes
As odd as it sounds, there are actually some things that I like about the fact that my child has type 1 diabetes. It feels wrong to even think that way...that there could possibly be things that I like about this bastard of a disease....but it's true.
I love the fact that my child has gotten the opportunity to meet some amazing people. Just today for example, we had lunch with a friend that is marking the 40th anniversary of her diagnosis with a party next month. I sat there watching them both check their blood sugar, bolus for their food, and talk about things that I could never relate to...because i dont have diabetes...I'm just the Mom...i will never fully be able to grasp completely what its like. They talked about pump tubing that had gotten twisted up in a knot, accidentally cancelling a bolus and having to redo it, and getting asked if you can play games on the pump. To see my child's eyes light up as she spoke with our friend about these things was priceless to me....to be able to see her find comfort in the same...with someone who has been doing this for 35 years longer than her...ahhh there are no words to describe how special that was for me to see. As we pulled out of the parking lot on the way home from lunch, Emma said to me, "it's cool to talk to a grownup with type 1. Usually when I talk to kids who have it too...we just talk about playing and having fun...cause were kids. Getting to talk to a grownup who has it is awesome because she gets it and she knows....she just knows."
I love the fact that my child has friends her own age that care for her and are concerned about her. Tonight we spent some time at her friends house...he is a classmate of Emma's and has been her friend for over three years now. He doesn't make a big deal out of blood sugar checks. He doesn't get annoyed or irritated when Emma has to stop playing to drink a juice box because she was low. He waits patiently and when she's finished, they carry on playing...no big deal. I love that seeing these types of things is just normal for him. I love that he sees Emma as.....Emma.....not the girl with diabetes. When he overheard me telling his Mom that I had to take Emma to her clinic appointment next Tuesday, he asked, "does that mean Emma won't have to have her diabetes anymore then?" My heart hurt when he said that...I wanted so badly to tell him yes...I wanted so badly for his innocent thought to be true. This same little boy actually has overcome incredible things in his own life as well. He is going to have surgery next month to fix a hole in his heart. He's 9 years old...and he sees life in the most beautiful way...he has an infectious laugh and I am greatful that he is my child's friend.
Finally, I love the fact that I have time to teach my child about her disease. I wasn't given time to prepare for it. I wasn't given time to be ready or learn or figure things out. I had a matter of hours to learn how to give injections, check blood sugars, and count carbs. I had to fly by the seat of my pants....hold on for dear life...and learn...immediately...on the spot...right there. I didn't have time to breathe. I couldn't learn one step and practice it until I felt comfortable. I just had to steady my shaking hands, grab that menacing life saving needle, stab my daughter in the leg with it, and just do it.....go....make it happen and don't screw up because it's a matter of life or death...if you screw up she could die....DIE....her life is in your hands from this second forward so don't screw up! I love the fact that I have time.....I have years to teach Emma how to manage her disease. I can take it slow...teach her step by step...give her time to master the skills...give her the knowledge as we go along age appropriately...so that one day she will understand it all.
I love the fact that one day....when she is old enough and ready to take the reigns....she will be ready. I love that I can give her the gift of time...because I didn't have that....and I would never wish that way of learning on anyone.
I love the fact that my child has gotten the opportunity to meet some amazing people. Just today for example, we had lunch with a friend that is marking the 40th anniversary of her diagnosis with a party next month. I sat there watching them both check their blood sugar, bolus for their food, and talk about things that I could never relate to...because i dont have diabetes...I'm just the Mom...i will never fully be able to grasp completely what its like. They talked about pump tubing that had gotten twisted up in a knot, accidentally cancelling a bolus and having to redo it, and getting asked if you can play games on the pump. To see my child's eyes light up as she spoke with our friend about these things was priceless to me....to be able to see her find comfort in the same...with someone who has been doing this for 35 years longer than her...ahhh there are no words to describe how special that was for me to see. As we pulled out of the parking lot on the way home from lunch, Emma said to me, "it's cool to talk to a grownup with type 1. Usually when I talk to kids who have it too...we just talk about playing and having fun...cause were kids. Getting to talk to a grownup who has it is awesome because she gets it and she knows....she just knows."
I love the fact that my child has friends her own age that care for her and are concerned about her. Tonight we spent some time at her friends house...he is a classmate of Emma's and has been her friend for over three years now. He doesn't make a big deal out of blood sugar checks. He doesn't get annoyed or irritated when Emma has to stop playing to drink a juice box because she was low. He waits patiently and when she's finished, they carry on playing...no big deal. I love that seeing these types of things is just normal for him. I love that he sees Emma as.....Emma.....not the girl with diabetes. When he overheard me telling his Mom that I had to take Emma to her clinic appointment next Tuesday, he asked, "does that mean Emma won't have to have her diabetes anymore then?" My heart hurt when he said that...I wanted so badly to tell him yes...I wanted so badly for his innocent thought to be true. This same little boy actually has overcome incredible things in his own life as well. He is going to have surgery next month to fix a hole in his heart. He's 9 years old...and he sees life in the most beautiful way...he has an infectious laugh and I am greatful that he is my child's friend.
Finally, I love the fact that I have time to teach my child about her disease. I wasn't given time to prepare for it. I wasn't given time to be ready or learn or figure things out. I had a matter of hours to learn how to give injections, check blood sugars, and count carbs. I had to fly by the seat of my pants....hold on for dear life...and learn...immediately...on the spot...right there. I didn't have time to breathe. I couldn't learn one step and practice it until I felt comfortable. I just had to steady my shaking hands, grab that menacing life saving needle, stab my daughter in the leg with it, and just do it.....go....make it happen and don't screw up because it's a matter of life or death...if you screw up she could die....DIE....her life is in your hands from this second forward so don't screw up! I love the fact that I have time.....I have years to teach Emma how to manage her disease. I can take it slow...teach her step by step...give her time to master the skills...give her the knowledge as we go along age appropriately...so that one day she will understand it all.
I love the fact that one day....when she is old enough and ready to take the reigns....she will be ready. I love that I can give her the gift of time...because I didn't have that....and I would never wish that way of learning on anyone.
Happy Birthday to you
I get asked sometimes how I do it...how do I stick needles in my kid all day every day...how do I do that to my child and not break down in tears every time. At first, I didn't really know how to answer that question. I mean I know why I do it....because she's my child and I want her healthy and alive. Since June 26, 2008, I haven't had a choice....diabetes was thrust upon us and I just had to do it. I have hated every single injection time since day 1. For the first three months, I was scared to do them...scared that I would hurt her...scared that I would do it wrong...scared that she would hate me...scared that she would start to think of me as the bad guy...the one who is always coming at her with a needle. I was sad. I was frustrated. I was stressed And completely overwhelmed. I was dealing with a 4 year old child who is fiercely independent and strong willed and stubborn. She would thrash about and scream and cry and make every single injection time a living hell, to be honest. In the beginning I would cry right along with her. I would whisper soothing sounds of comfort to her as the tears streamed down my face and dripped onto my shirt. We cried together. My heart broke every time and I thought that there was no way on Earth that I was going to be able to continue to do this every day.
Eventually, she gave up the fight...and that in and of itself shattered me...to see her surrender to her reality at 4 years old. Injection times became easier. Life became routine. She stopped crying...and I stopped crying. Needles are just another part of our daily routine now. It's just another thing that we do every day.
So now five years later, when people ask me how I do it....I have a completely different answer. Yes, I say that I do it because I don't have a choice...I want my child to be healthy and alive. However now, I also say that I am able to do it because of the support of some amazing and incredible people I have met because of this disease. When I have bad days...battling highs for hours on end...fighting lows all night long...when I'm running on no sleep and I have no idea how I can possibly make it through the day, I know that I can count on my fellow d-moms and d-dads. They get it...they live it...they have been there and know what it feels like. They know that mind numbing exhaustion...they have had those days where it seems like the effort needed to even blink your eyes or take a deep breath....is just too...much.
There is one d-mom friend of mine in particular that I think of when I hear the words support...strength...drive...determination. Her name is Jen Hamilton Loving and she has three children...two daughters with type 1 and a son with hemophilia. She works...she is married to an amazing d-dad...she advocates for both diabetes and hemophilia...she educates others...she supports those who need it no matter how tired she is or how bad her day has been. She is always there to make you laugh...to make you feel loved and supported and motivated. I admire her more than I can even explain in words. She is the true definition of what a Mom should be.
Tomorrow is Jen's birthday and I want her to know that not only what she does in her life matters....but who she IS in this life matters. She is important. She is making the world a better place. She is raising some incredibly compassionate and strong children. She has a beautiful soul...honest and real and giving. Happy Birthday to you, my friend! I love ya and thank you for being who you are. I am a better person for having gotten to know you. Thank you for making this D-life a whole lot easier to live.
Eventually, she gave up the fight...and that in and of itself shattered me...to see her surrender to her reality at 4 years old. Injection times became easier. Life became routine. She stopped crying...and I stopped crying. Needles are just another part of our daily routine now. It's just another thing that we do every day.
So now five years later, when people ask me how I do it....I have a completely different answer. Yes, I say that I do it because I don't have a choice...I want my child to be healthy and alive. However now, I also say that I am able to do it because of the support of some amazing and incredible people I have met because of this disease. When I have bad days...battling highs for hours on end...fighting lows all night long...when I'm running on no sleep and I have no idea how I can possibly make it through the day, I know that I can count on my fellow d-moms and d-dads. They get it...they live it...they have been there and know what it feels like. They know that mind numbing exhaustion...they have had those days where it seems like the effort needed to even blink your eyes or take a deep breath....is just too...much.
There is one d-mom friend of mine in particular that I think of when I hear the words support...strength...drive...determination. Her name is Jen Hamilton Loving and she has three children...two daughters with type 1 and a son with hemophilia. She works...she is married to an amazing d-dad...she advocates for both diabetes and hemophilia...she educates others...she supports those who need it no matter how tired she is or how bad her day has been. She is always there to make you laugh...to make you feel loved and supported and motivated. I admire her more than I can even explain in words. She is the true definition of what a Mom should be.
Tomorrow is Jen's birthday and I want her to know that not only what she does in her life matters....but who she IS in this life matters. She is important. She is making the world a better place. She is raising some incredibly compassionate and strong children. She has a beautiful soul...honest and real and giving. Happy Birthday to you, my friend! I love ya and thank you for being who you are. I am a better person for having gotten to know you. Thank you for making this D-life a whole lot easier to live.
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