Tuesday, May 29, 2012

Teetering on the edge

I feel myself slipping today. Slipping over the edge into that dark place with this disease. I am teetering on the brink of bad things going on in my head and I am trying to catch my balance. I'm trying to stay on top and not let myself fall....but it's hard. It's really hard this time for some reason. I've been in this place before. I've fallen over the edge many times and gotten sucked into the depression that comes with this life...this never-ending diabetic monotony extravaganza. It's a dark and scary place and it sucks you in. It's awful and I think the worst part of it is that I know it won't be the last time I fall in there. I know this because I can see the marks of previous days and nights spent in that sad place. I can feel the sadness and the wasted breath of screams of anger. I can see the marks upon the wall and the anguish behind them. I feel it. I know I will be there again...and I will find my way out again...and I will fall again...it's a continuous cycle. I find it hard to gather the strength to stay on top and not get sucked in. I don't know if it's because our JDRF Walk is coming up this Sunday...and it will be our 4th time walking. I don't know if it's because next month will mark 4 years of living with this disease...marking half of my baby girl's life. I don't know if it's simply because I am tired...tired of it all...tired of counting carbs, bolusing, deciphering patterns in her numbers and making adjustments to her basal rates...tired of the lows that come out of nowhere...the change in seasons and weather that wreak havoc on numbers. I don't know if it's just because I am tired of it all...I'm just tired. I hate this disease and I hate that it makes me complain. I hate that it makes me feel like I have to fight to stay on that edge...that positive edge that still has sunlight shining down upon it. I hate that there is even a black hole of sadness and depression that I know about. I hate it. I wish that I didn't even know that it existed. I wish that the morning light would shine and I would awaken with a smile upon my face as opposed to pure exhaustion in my eyes and a stuporing stumble in my steps as I make my way to her room to make sure she's still alive. I hate that fear....that never ending fear. I hate how sometimes I feel like I am just fooling myself into thinking that I am in control of this...that as long as I do my best and am as exact as possible and as on top of things as possible...that nothing bad will ever happen...that she will be healthy and happy and fine. I know there are people in this world that are always capable of seeing the positivity in things...and I am usually ok at it...I have a wicked sense of humor (i know...i know...wow...way to speak so highly of yourself at a time like this amy!) But I fall sometimes too...I'm not perfect. I get sad...I get mad at this disease...I get jealous of others that don't have to live this life. I know I shouldn't and I hate that I do...but it still doesn't take away from the fact that I still do sometimes....I can't help what I feel...I just feel it. I endure it and I hate it and I hate myself for not being able to control my emotions sometimes...i hate that I have allowed so many tears to fall. I mask my sadness a lot of times by trying to be funny...laughing it off...making fun of myself and acting like it's no big deal....but a lot of those times I think I am just trying to convince myself that I am ok...that I am fine...that the screaming tears going on inside my head are not really me...so i joke and I laugh...and I make light of it. It's exhausting. I would have hoped after 4 years of this that I would have learned a better way to cope with days like today...but I haven't...and I don't know if that makes me a bad person or not...but it's just the way it is. Maybe someday I will learn a better way...but for now, I will just attempt to keep clawing my way back out and hanging on for dear life to that last speck of sun shining down upon my fingertips.

The popsicle moments in life

Sometimes in this life with diabetes it's hard to remember the little things. The things that make all the difference. The things that make you realize that it is not all about the needles and the blood and the pain and the highs and lows. It's about the moments in between. We get so caught up in the day to day management of blood sugars that we tend to lose sight of what really matters...the seemingly small victories. Well, yesterday we had one of those victories and it seems like it renewed my spirit. It was an EXTREMELY hot day yesterday here in Ontario...we're talking 40 celisius (104F) with the humidity factored in....hot....really hot. I sent Emma off to school with all of the protection possible...a hat to keep her brain from frying when out at recess, sunscreen covering every exposed inch of skin, and instructions to drink water...lots of water...all day. There are maybe 3 tiny little trees on the playground at her school to provide a tiny amount of shade for the kids. It was really amazing to me to see them at lunch recess when I brought Emma back to school. Usually when I walk up the path I am greeted by the sounds of screaming banshees and the sight of a mob of kids running around like maniacs enjoying their free time in the fresh air. Well, yesterday I walked up the path and there was a crowd of kids gathered under the bit of shade...huddled together...sitting criss-cross applesauce in the grass...moving as little as possible. The other kids were sort of lying around in the field looking like a bunch of limp lettuce. It was quiet...there was no screaming...no running around. They were all trying to endure the heat as best they could, I suppose.
Anyway, later on that afternoon I got a phone call from the school and I was sort of puzzled. Usually I will get a little jumpstart to my heart when the phone rings and I see her school on the caller ID...except this time it wasn't snack time...it wasn't the "usual" time I would ever get a phone call with a problem in her blood sugars. It turned out to be one of the two teachers assistants (EA's) in Emma's class. Ever since Emma started school in junior kindergarten these two women have been there in the class helping out with another boy with special needs. They have always just taken it upon themselves to help Emma too when she needs it. They go above and beyond the call of duty and out of the kindness of their own hearts, they help her. I have always been greatful for the extra sets of eyes to look out for her. In any case, the EA called me and said, "One of the teachers brought in popsicles for the kids and they are 15g of carbs, and we were wondering if Emma can have one too?" I was floored. It brought tears to my eyes instantly and it was honestly the best news I had heard all day. I told her tha yes of course Emma could have one...just tell her to bolus for the 15carbs and not bother to check her BG again. I hung up the phone and it hit me....this woman cared enough to make sure Emma was included...to make sure that she didn't feel different. She cared enough to not only call me, but to also check the carb count ahead of time. I love the EA's for that. After school, as Emma and I were walking back to the car, we passed by this same EA that called me and I almost burst into tears. I told her thank you once again and she said, "aww it was nothing! I just wanted to make sure Emma got to have one too!" I love that she perceived the situation as nothing more than that. She didn't feel like she had gone above and beyond. She didn't feel like she had done anything out of the ordinary. She didn't feel like she had done something special. However, to me...and to Emma...that popsicle might as well have been a million dollars prize. To Emma, she wasn't different...diabetes didn't force her to stand out and be stared at or pitied. It didn't slap her in the face with reality and make her take notice to the fact that she isn't like everyone else in her class. The way that EA handled things for her....it made Emma feel normal. To me, that is more precious than anything in the world. I tried my best to express to this woman how her seemingly small act of kindness and compassion for my daughter meant all of this to me.....but I don't think I could ever find the proper words.
So, in the midst of the insanity...in the midst of the stress, the worry, the feelings of despair......try to remember the little things...the moments in between. Try to seek out and recognize your "popsicle moments".....because they are powerful. The "popsicle moments" will renew your spirit and make you feel like there really are good and decent...kind and caring individuals in the world that are on your team. They are on your side and will be there to help you make your type 1 kids life better. I love the EA's for that and I love our "popsicle moments."

Sunday, May 27, 2012

Veterans and Newbies together in the park

Emma and I spent some time at the park today with a few other local families that have kiddos with Type 1. There were 3 families including us that were "veterans" so to speak....and 2 families that are new to this life. It's sort of a strange feeling really...sitting there on the blanket in the grass and looking around at the different stages. Some have been through the wringer countless times now...illnesses, ketones, high blood sugars, low blood sugars. They have seen the things that this disease can do to you. They have a million stories and experiences they could share with you to give you some insight, some advice, some reassurance. They have been broken...they have been knocked down flat on their face from this disease. They have the experience under the belt and good or bad, they are willing to help the new people...because they know what it's like....they've been there...they've felt every single emotion the new people are currently feeling...and they have come out on the other side ok. I sat there listening to the new families and seeing the look in their eyes and my heart broke for them. There was one family with a little boy who I believe was 2 or 3 years old. I sat there listening to his Mom and Dad speak and immediately I was transported in my head back to those early days with Emma. She was 4 years old when she was diagnosed and it seems like a lifetime ago. I don't like to go back to that time...I don't like to open that door and allow myself to peek into that room...that sad, dark, dank room. I don't like it....but every single time I meet a newly diagnosed family, I do it anyway. I open it a crack...just so I can be there for them...help them in any way I can...make them see that I understand and that they will be ok...because I am ok....no matter if I have had the worst diabetes day imaginable...I am still ok. So, I open that door to my sad room just a crack...and I let that darkness wash over my heart for just a bit...and I try to portray this image of "ok-ness" for them. I know there are really no words that will truly honestly make them feel better....but I try to find the words anyway. I wish i could take the scared look from their eyes. I wish I could take that weight off of their shoulders. I wish I could take away that slight hint of fear and stress in the tone of their voice. I wish I could....but I can't...because we are now in this together....and I know that the circle will continue to grow...the people affected by this disease will continue to grow in numbers...the families that are "new" now, will soon be "veterans"...and they will in turn be there for future "new" families. It's a never ending circle of things. So, even though I know that it will be hard...and it will hurt my heart...I still go to these things...because I can't not go...I can't not be there for them...I don't have it in me to not do whatever I can to help them. It's depressing and yet comforting at the same time. What a weird life this is sometimes.
So, I left feeling that sadness in my heart again. However, on the way home, Emma said to me, "Mommy, I think there should be a special adoption place where Mom's like you could go adopt kids that have diabetes like me, and they don't have a Mom or Dad. Wouldn't that be cool?" Yes, it would be pretty cool. It's moments like those that make me realize how lucky I am. I don't know why she brought this up...or what made her think of it...but she did...and it made me smile to know that she has that special part of her heart that makes her considerate of others and kind...and caring. Once again, my daughter who is wise beyond her years...made me...the parent...feel better.

It's all been said before

Sometimes I feel like it's all been said before. It's all been experienced. It's all been done. It's all been talked about. We all know this life is hard. We know it is stressful and frustrating and sad and maddening. We know it. We live it. We wake up every single morning, get out of bed, and do it. We make it work...even in the midst of the worst blood sugar days, the dreaded stomach virus, ketones, and stubborn lows that just won't quit......we make it work. We get up and we do it.
I've been asked many times over the years...How do you do it? How do you keep going every single day and do it? How do you stick Emma with needles day in and day out? Doesn't it break your heart?
I've been told many times over the years...You are amazing. You are such a good Mom. There is no way that I would be able to do that every day. There's no way I would be able to give my kid a needle every day. She is such a brave soul and such a hero. You are both an inspiration.
While I do appreciate the kind words and encouragement, I honestly don't think we are doing anything particularly special or out of the ordinary in what a normal Mom would do for her child in a situation like this. You never really know what you are capable of or what you would do in a situation like ours until that day arrives. Once you are told that your child has a disease that will be with them every single day until a cure is found, a kind of shift occurs in your way of thinking. You go into survival mode and you muddle your way through until you are able to create something beautiful out of the madness. Diabetes is an ugly disease...and you make it your main goal every single day to turn that ugliness into something beautiful. Some days we achieve that with very little effort...and other days we barely squeeze out a tiny spark of beauty. Yet, we fall asleep that night and wake up the next morning to try all over again. The perseverance and tenacity required to live this life is what makes us astounding I think. We get knocked down, beat up, kicked over and over again. We sport the war wounds of a never ending battle. We lose...we guess...we try...we lose...we guess...we try...we win. It's an incredible ability to have in my opinion. To get shot down so many times...to fail so many times....and still have that fight left in you to get back up and try again. It's just the nature of the beast.
So, we soldier on and make it work. We accept it, we fight it, we win some, and we lose some. Through it all, we have faith....we have hope...we have each other. I think that is the most beautiful thing of all...the power of the diabetes connection. It's there between family members dealing with this together. It's there between husbands and wives, siblings, even pets. It's there between friends...be it kids at school, other families with Type 1 kiddos, Facebook groups, all of you fantastic blogging friends out there.......or any other variation of a true friend. That connection is there between us all. Every minute of every day...that connection is there...that comraderie...that bond. That to me is perhaps one of the most beautiful aspects of this life. The power of our perseverance and our bond will help us conquer this life together.

Friday, May 25, 2012

Diabetes Sucks Lane...Homes available now!

So, I was talking with some friends tonight about how cool it would be to have all of us D-Mom's living on the same street. I think one of my friends called it "Diabetes Sucks Lane." It was all said in a joking manner, but it really got me thinking...how cool would that be? There would be no worries about sending your T1 kiddo out to play...no stressing out over sleepovers...you could be absolutely confident that any and all food or snacks given out at playdates would be carb counted and bolused or injected for correctly. Ahhh...it would be amazing. It brings a smile and a sigh of relieving comfort to me just to think about it!
I get this same feeling whenever we are gathered at JDRF events or playgroups. The thought that runs through my head of the comfort I feel in knowing that if something were to go wrong with Emma or her pump, there would definitely be someone there to help. It's an indescribable feeling really. I suppose it must kind of be like what other Mom's feel when they send their kids places on a regular basis. There is no extra worry...no added fear...no stress bonus...leaving them at the door and from the moment they are out of your sight, your thoughts are always distracted...part of you still is with them. I don't really know how that feels to be honest. Yes, I do get snippets of that comfort and ease every now and again at the events I was talking about....but they are most definitely not on a daily basis. I wonder what it feels like to have that free feeling every day. It is so weird to me that I don't know what that is like. Sometimes I still feel like this is all a dream. I know it's been years now, and I shouldn't really feel that way anymore....but I do once and awhile. Sometimes I think I get so caught up in that day to day redundant pre-planning and monotony...that I forget that this isn't what the majority of the parents I know do. Most of my friends do not check their child's blood sugar first thing in the morning. Most of my friends couldn't tell you the carb count in a Happy Meal or a Emma-sized plateful of spaghetti if they tried. Most of my friends don't jab their kids with needles on a daily basis. Most of my friends would cringe at the thought of squeezing blood from their kids fingertips multiple times a day...every day. Hell, I'm sure I would be the same way too! I don't fault my non-D friends for that. Yes, I am jealous of it and jealous of their freedom from things like this......but I most definitely do no fault them for it.
So, when my D-Mom friends were talking about Diabetes Sucks Lane....it made me laugh...and then it sort of made me long for that version of our reality. It made me wish for that life. I got this sudden visual in my mind of a sunny street (for some reason resembling Wisteria Lane...a la Desperate Housewives...lol) on a warm summer afternoon. Sitting on my porch drinking a coffee and chatting with another D-Mom...watching our kids run up and down the street from house to house playing with all of the neighbourhood kids. We all had smiles on our faces. We all laughed. A warm breeze blew through the tree in the front yard and the kids were all together. I looked across the street and saw a D-Dad mowing his front lawn. Next door to him I saw a few D-siblings playing hopscotch on the sidewalk. Other people in our D-community were out walking their dogs...tails swishing back and forth...barking at all of the squealing kids as the walked by. I saw the sun setting and one of the D-houses had everyone over for a BBQ and a campfire...complete with S'mores for the kids and drinks for the adults. We all laughed and talked together...the night sky full of stars...blanketing us from the outside world. I saw BG meters being pulled out at random throughout the day...boluses given, pumps returned to pouches, juice boxes drank, and time outs for lows. I saw diabetes presence in this neighbourhood. It was there...just like it's here now...but it was different there. It was not stared at there...not judged there...not unusual there...not a source of panic and stress there....it didn't leave you with a feeling of being alone.
Diabetes Sucks Lane was nice. It was more than nice actually...it was peaceful and beautiful. I think I will store that vision away in my mind for the hard days with this disease. I will store it away in a safe place and pull it out when I need it. I will visit that street again in my mind when I am feeling like I just can't handle it anymore....and I know it will bring a smile and a calmness to my heart every time.

Wednesday, May 23, 2012

Bloodwork and dentist lessons

I was talking to my Dad the other day and I mentioned to him how bad I felt for Emma this week. She has to have two teeth pulled to make room for others that are already trying to grow in.....and she has to get her annual bloodwork done. You might think that because she is type 1 diabetic and has to have finger pokes and needles and blood taken every single day, that this experience would be nothing for her....old hat...just your run of the mill annoying medical appointment. Well, unfortunately this isn't the case. Emma has to go to the hospital for clinic appointments every 3 months. They weigh her, measure her, take blood from her to get her a1c number (the number that will show the doctors what her average blood sugar number has been for the past 3 months), and talk with the diabetes team of doctor, nurse, and dietician just to discuss any necessary adjustments in her dosages and things. It's all very boring and routine and just another thing at this point that we see as something we HAVE to do. The thing that sends Emma into a panic though is the annual bloodwork. Once a year they have to take an extra vial of blood from her to measure things like her cholesterol level and for celiac, etc. For regular bloodwork appointments, they will usually allow Emma to give up her blood through a finger poke....it's something she's used to...something that makes it easier on her...something that she feels hurts less. Yes, it takes longer...yes, they wind up having to squeeze her finger continuously to fill up enough in that vial.....it's a pain for them...but they do it...because when they try to take it out of Emma's arm, she screams like someone is trying to murder her....she attempts to bolt from the room...it's not a pretty scene. So, this is all fine and good...it's what we have found over the years that works for her. Well, they are unable to do this for the annual bloodwork though....because they need the extra blood....so Emma doesn't have a choice in the matter for this one....she has to suck it up and let them take it from her arm. I hate it. She hates it. The staff at the lab hates it. The other patients waiting in the hallway hate it. But we have to do it. Every year. Once a year. It has to be done. All thanks to diabetes.
So, I was telling my Dad about this and how I felt bad for her and how the bloodwork coinciding with the same time frame as getting two teeth pulled just made it all the more awful for her. As her Mom, I have this unending need to make things easy for her...make things good....fix things...make it better. It's just a feeling deep in my gut. I don't know if it will ever go away. I told my Dad about this and how I was struggling with it all, and he brought up a very good point to me. As usual my Dad tends to say things in a way that make me pause for a minute and say, "aha....I never thought of it that way!" He told me that it was all fine and good and completely understandable to feel bad for her and to want to try and fix it for her and make it easier on her.........but she also needs to know that sometimes in life we have to do things that aren't easy...sometimes in life we have to endure moments of difficulty and do things that we don't necessarily want to do...but we have to anyway. He told me that it is a good thing actually that she learns this as a kid, because if I were to always swoop in and make her life simple and easy and free from any difficulties and problems or hard times, that she could grow up believing this is how it should always be and she would never gain the skills to handle things on her own...to gain the inner strength to make it through difficult times. It really got me thinking...and I honestly see his point.
I think that since diabetes came into our lives, I have always assumed that she knows all about difficulty...she gets it...she understands that not everything in this world will be easy or come easy to her. I think I have gone a little overboard at times, trying to save her from any added pain or stress because she is already dealing with so much as it is in my mind. Yes, she is diabetic....yes, it is hard...no 8 year old should have to deal with the things that she deals with on a daily basis. At the same time though, I think that generally speaking...she doesn't see it as being all that difficult....I think for her....it just....is. It's the way her life is. It's the way it has been since she was 4 years old. It's really probably all that she remembers. So, by me trying to erase all of the other every day difficulties in life for her....I could possibly be doing more harm than good.
It's a difficult life we live...all of the obvious things that come with diabetes intertwined with things like this....the art of raising a well-rounded individual who is able to handle triumphs and defeats with just as much grace. It's hard...and I am learning right along with her.

Saturday, May 19, 2012

Her pink bikini bottoms

I have to admit....there is something seriously adorable about seeing my kid run around in her bikini at the splashpad at the park...with her pump shoved down the front of them. It makes me smile. You would think that it would probably make me want to cry or that it would be some glaringly obvious thing shouting at me that SHE IS DIFFERENT...SHE IS DIABETIC...but it doesn't. It makes me smile. Do you know why it makes me smile? Aside from the obvious immature teenager sense of humour I can have at times...where I see it and giggle inwardly at the whole "package" thing. It really makes me smile because it is a glaringly obvious thing that shouts across the park at me...SHE IS ALIVE...SHE IS OK....SHE IS PLAYING AND LAUGHING AND HAVING FUN JUST LIKE ALL OF THE OTHER KIDS ARE!!! Without that little package shoved down the front of her pink bikini bottoms, she wouldn't be here. Without the insulin pumping through that little tube coming out of her bikini and going into her belly, she wouldn't be alive. Whether it be by injection, syringe, or the little package.....if it wasn't there...I would have lost my daughter long ago. I would have lost my heart, my reason for breathing, my reason for stumbling out of bed in the morning.....it would have been ripped from my soul almost 4 years ago now. So, yes.....there I sat on the grass surrounding the splashpad this afternoon, watching her, with a big cheesy smile on my face. I saw her running and playing and laughing. I saw her soaking wet hair stuck in strands and clumps across her forehead and shoulders. I saw the sun glistening off the beads of water on her little 8 year old self. I heard her giggles and chatter as she found a couple of friends from school. It made me smile.
Sometimes when I watch her play, I find myself feeling like I am watching a movie of some other girl...and I am some other Mom...and diabetes isn't a part of our lives. I am just watching this incredible movie that is carefree and leaves you with all of those warm and fuzzy feelings as you walk back out of the darkened movie theater and into the daylight of the parking lot again. And then I blink....and it fades way...and reality sets in. Well, some days that feeling of reality is harder to settle back into again. Other days....days like today....it's beautiful.
I sat there in the park down the street from our house...the same park we have gone to countless times now...and I smiled. I smiled at her innocence...her beauty...at how lucky we are...but most of all, I smiled at that little package shoved down the front of her pink bikini bottoms.

Thursday, May 17, 2012

What I've learned in One Year of Pumping

I would like to take this moment to give props to Emma's insulin pump. Today marks 1 year of pumping. One year of having this incredible device attached to her that has made our lives so much easier. Over 121 site changes, a few battery changes, countless adjustments in her ratios and basal rates, and 365 days of freedom.
What a difference a year makes! One year ago today I was scared out of my mind to make this leap from the comfortable place of pen needle injections....into the land of pumping. It was a new path on our diabetic journey. It was unfamiliar and frightening. I didn't think we could do it. I didn't think that I would be able to trust this little pink device that runs on a AA battery to help me keep her alive everyday. I didn't trust myself to know how to operate it and make it work for our lives. I had just gotten to the point of having a tiny shred of confidence in my diabetes management skills, and then there I was about to toss it all up into the air and embark on this new path...clueless, new, and terrifying.
See, diabetes is scary in and of itself. There is no black and white answer to why things happen or what you can do to fix them. You just have to kind of hold on to the little bit of knowledge you have gained from experience and use it whenever you can. You have to keep that confidence and experience in your back pocket and add to it if you happen to gain something new. It's easy to get frustrated and overwhelmed...angry and stressed. It's easy to let yourself slip into that frame of mind. So, when you force yourself to throw caution to the wind and start all over again, it really takes an insane amount of courage. I honestly believe that in order to make it in this D-life, you have to have a certain something special. You have to have that spark...that underlying confidence that you yourself don't necessarily even know exists.
One year ago today, we began this journey of pumping and I haven't looked back once. I love her pump. She loves her pump. Emma has formed a bond and a connection with it that goes beyond just the physical sense. She has named her pump "Jumanji" after one of her favorite movies. She started off on this path being afraid of it and not necessarily wanting to even wear it all the time. She loved it and what it represented....but at the same time she didn't know what to expect. Now I look at her and I see how far she has come...how attached she is to it...how much it means to her. She doesn't like taking it off...she says that she feels naked without it...she misses the familiar comforting weight of it on her hip.
Over the past year, I have learned that I love the pump. I want to say thank you, Jumanji. Thank you for being the most important tool in my D-Mom tool belt. It takes a lot to be a Mom...but to earn that "D" in front of the title....well, that takes guts....it takes bravery beyond measure, heart and perseverance, strength that rivals the Heavyweight champion of the World, and determination....real honest determination that grows from within and courses through your body and mind. Jumanji has shown me that I have earned that "D"...I am capable of keeping my kid alive...I can do it...I am strong and I am determined. Thank you Jumanji for giving us back our freedom. Thank you for making our lives return to being about as close as they were before diagnosis as we could ever hope to get. Thank you for always being there...always figuring out the math for me to determine what precise amount of insulin Emma needs at that particular moment in time. Thank you for all of the things you have alerted me to...the battery changes, the occlusion warnings, the bubbles in your tubing, the bent canula, and the no delivery warning. Thank you for these things because you have taught me that while yes you are incredible....you are also not perfect...so therefore we must act as a team...you, myself, and Emma...we are a team in this. Not one of us can function without the other. Thank you for teaching me that it's ok to trust and have faith. Thank you for all of these things, but most of all I want to thank you for bringing that smile back to my daughter's face. Thank you for making it possible for me to see that smile...that joy...that freedom. Thank you for giving her back the ability to just be a kid. That to me is worth more than any amount of money in the world. Thank you. Happy 1st Birthday Jumanji!

Monday, May 14, 2012

A Day Without Diabetes...

I know the question has been thrown out there before to many people living this life....what would you do if you had just one day without diabetes? How would you spend that day? What would you eat? Would you do anything differently?
Well, I thought I would take a different approach to this question and ask you what YOU as the parent of a diabetic child would do? How would you spend your day of freedom from this disease? Would you sleep soundly for the first time in years? Or would you rise early and squeeze every last ounce of fun out of the day relishing every little moment without diabetes? Would you feed your child all of those "problem foods" for every meal...bagels or muffins for breakfast with a nice big glass of cold orange juice? Ooey Gooey cheesy pizza and a Dr. Pepper for lunch? Pasta, garlic bread, or Mac and Cheese for dinner? Ice cream and cotton candy for dessert? Or would you simply carry on like usual and stick to your normal menu for the day and simply smile at the fact that you didn't have to count carbs...figure out boluses...combo boluses...dual wave boluses? Would you run laps around the park with your child all day...go swimming, spend hours jumping on the trampoline, play hockey, soccer, and dance the night away without the thought of a low blood sugar entering your mind even once? Or would you stick to your routine...enjoy the comfortable normalcy and soak in the fact that you haven't had to check a blood sugar one time? Would you take your child to the movies and hand them their own bag of popcorn...put your arm around their shoulder and simply enjoy the movie....without having to fumble around in the dark and check their blood sugar?
Or would you just hold them.......hug them tight...and feel the tears upon your cheeks as you realize that there is no insulin pump hanging from their belt, in a pump pouch, or attached to their little body anywhere......it's simply a hug...no tubes, no pumps, no nothing in the way....just you and your child...hugging like you hugged them all the days before they were diagnosed.

How would you spend your day?

I can't know for sure, because the thought of a day like this is like a fairytale to me...soft and glittery...just out of my reach...and yet at the same time...it seems completely within my grasp. I want to experience MORE than just a day...I want a lifetime without this disease, obviously...but if I could have only one day I believe I would spend it wisely. I would rise early...even though sleep is precious to me now. After 4 years of getting little sleep...that of which is usually broken as well, I still believe I would choose to rise early. I would run into Emma's room to wake her and we would leave the house in our jammies and fuzzy slippers to go for McDonald's breakfast. We would laugh and sing the whole way there, not worrying about bringing along the blood sugar meter. I would get her anything on the menu that she asked for plus an extra large orange juice. We would cut through the park on the way home and spend some time there...running and playing, swinging and sliding, hanging from the monkey bars and not worrying about a low happening at all. We would skip home and giggle at the fact that my pockets aren't loaded down with juiceboxes or candy...in fact my jammie pants don't even HAVE pockets! We would change into our swimming suits without doing that shimmy manuever to make sure pump tubing is not tangled or twisted in the suit. I would pause for a moment to notice that there was no pump site attached to her belly...or thigh...or anywhere else. We would spend the day swimming and laughing and not giving diabetes a second thought. We would eat lunch late...play in the sand at the beach...build sand castles...enjoy the feeling of the sun on our skin...and just live in the moment. We would have a big campout in the backyard with all of her friends...toast marshmallows on the BBQ, make s'mores, and the kids would jump for hours on the trampoline. I can just hear their squeals of laughter and fun as I type this. I can just picture the look of pure joy and freedom on Emma's face. I can feel the weight lifted from my shoulders as I stand there witnessing this moment of childhood innocence. As the sun sets in the west and the sky takes on that breathtaking orange hue, I know that I will find myself getting anxious...the minutes ticking away...our time will soon be over. I will feed her pizza for dinner and savour the moment...as I watch her take each individual bite, I will savour it...I will be greatful for the fact that I won't have to worry about how to make the insulin pump act like a functioning pancreas would in a meal like this. I will recognize that it really is about the simple things in life. I will realize that I am lucky enough and that I take it for granted every time I put food into my own mouth. I will enjoy that pizza more than any other gourmet meal available on the planet. As the end of the day draws near, I will feel the sadness returning...the fear...the stress...the old familiar blanket of worry that I wrap around my meager shoulders every single day. I will feel it coming and I will laugh at the thought of Cinderella in camparison. I will feel that moment drawing near and I will force myself to return to my old self...my D-Mom self. I will carry Emma exhausted and truly happy up to her bed. I will tuck her in and kiss her goodnight just as I have every single night for the past 8 years. I will hug her tight. I will whisper in her ear that this day meant more to me than she could ever imagine. I will tell her that I am sad for the return of our version of normal...but I am confident that I can make it work...I am confident that I will continue on as I have for 4 years now...soldiering on getting ever closer to that day where we can return to our freedom again....where ALL of our days will be like this day. I will tell her that she is strong...she is beautiful...she is graceful in this life...and I hope that she had an incredible day. I will lay my head down upon my own pillow that night and close my eyes upon the greatest day I've had in years. I will fall into a silent and peaceful sleep content in knowing that we can do this...we will get there again...we will...I know this because there is no turning back...there are no do overs...there is no such thing as defeat.
That is what I think I would do with my day free from diabetes. To me, it is the most beautiful day I can imagine. How would you spend your day?

My Mother's Day prayer

The thing about diabetes is that it doesn't ever stop. The days of blood sugar testing, deciphering all the numbers, counting carbs...it never ends...it just goes on and on and on and on. It's a perpetual cycle of numbers and blood and insulin floating around in our little corners of the world and sometimes it gets to the point where you feel like if you have to try and seek out just one more pattern...one more reason for the madness of whacky unreasonable numbers, that you just might scream...or slip over the edge into the land of crazy town.
Yesterday was Mother's Day. I always have this little mantra in my head when special days come along...Mother's Day, my birthday, Emma's birthday, Christmas.....I sit there and think to myself..."diabetes? please be nice today. Please be kind and give us a break. Just play fair for this day." Sometimes it does...and sometimes it doesn't. Yesterday, it didn't. When this happens, I think the impact it has on my emotions is even worse than if it was just another average ordinary day. I don't know why...but it does. Maybe it's because I put that extra added pressure on myself that day to be perfect...to make the day about the day and not let diabetes have the spotlight at all....and then when I fail...or rather, when diabetes becomes a scene stealer and makes me fail.....the sting is just a little bit worse.
Well, Emma hovered around the 14-15 blood sugar range all day...not good. I bolused for food, I counted carbs exactly, she was active...in fact we were outside for most of the day honestly...trampoline, the park, baseball, and playing in the sandbox. I gave her correction boluses to bring that number down, I checked for bubbles in her pump tubing, I did temp basals, I increased ratios and basals.....the whole nine yards. Finally just before bedtime I decided to change her site all together....as a last resort....because I had run out of ideas...my diabetes detective hat was slipping off my poor exhausted head, and it was the only other option I could think of trying. So, I changed it and sent her off to bed with the tears drying on her cheeks because I didn't have enough time to put numbing cream on and save her some of the pain. It was not the most ideal way I wanted to end my Mother's Day. This day was supposed to be about her and I and diabetes managed to wriggle it's way in there and steal away some of the joy from us.
So, I did the usual routine of waiting it out...watching the clock...having that mental argument with myself about how bad the numbers were today and how angry I was at diabetes and how I hoped this new site would solve the problem even though it wasn't site change day. Eventually 11pm rolled around and I got her meter and made my way upstairs to check her. I held my breath and did what I have done a million times before now. Whenever I am having an especially hard time with diabetes and it is bringing me down feeling like the weight of it all has sent me to my knees, I will talk to my Grandpa in my head. My Grandpa passed away years ago and Emma never had the chance to meet him. He was an amazing man. He had a heart of gold and was always there to make you smile. So, I talk with my Grandpa in my head asking for his help..his strength. I suppose it is sort of my own little version of praying at times. I trudged up the stairs to Emma's room and said, "Please let her number be under 10...please...just make it be under 10...under 10...under 10...under 10."
It's something that I do. It makes me feel better. It gives me hope that I am not alone in this. It gives me faith that everything will be alright. Diabetes is hard. It doesn't take breaks...it never ends...day after day goes by and we must just keep putting one foot in front of the other...just keep moving ahead...never pausing for too long to look at the numbers behind us. We need to accept those current numbers, do our best to make adjustments when needed, and keep moving. Diabetes is prehaps the world's longest marathon. It's an epic battle intertwined with moments of guilt, despair, sadness, anger, frustration, stress....and joy, pride, victory, happiness...and moments where we ALMOST forget that it's there...it just is...off in the background...there. No matter what the current situation is, we must keep moving.
What was Emma's blood sugar number last night at 11pm, you might be asking yourself?
It was 9.9
Thanks Grandpa for the Mother's Day gift.

Saturday, May 12, 2012

If I were to say...

If I were to say that you will find
a light worth blinding
your darkened mind,
would you listen
or would you hide
in the darkest corners you could find.
Safe and quiet
wrapped in your own arms
silent and scared of what could harm
hands splayed across your face
in defense of what was said
words of hate
words of loss
words of fear
that grow between your fingers like moss
If I were to say that you will survive
that blinding light
that moment of clarity,
would you believe my sincerity?
would you take a chance and remove your shield
or would you cower in the dark
seeking comfort in your mind which is sealed
What you can endure in the face of blindness
as you kneel in your damp and muddy corner
of home,
will bring you back to the land of hope
the whisper of faith
felt upon your sweaty neck
like the breath of a child
at rest
Snapping you back to the task at hand
reality begins in your new land.

Friday, May 11, 2012

Diabetes doesn't always win

Diabetes doesn't always win. It doesn't always wind up being in your face, screaming at you, making it's presence known. It isn't always in the forefront making it hard for you to think of anything else.

Sometimes YOU win.

Today, Emma and I won. We owned this day...not diabetes. After lunch it was school carnival day and I was volunteering in the one classroom where the "white elephant sale" was being held. This meant that Emma wouldn't have me walking around the rest of the carnival with her....I was in that one room handling all of the tickets and sales of donated items for the entire time...over 2 hours to be exact. This time frame overlapped Emma's usual afternoon snack time as well. So, this meant that Emma and her friend would be walking around the school...looking after themselves, managing their own tickets, buying what they chose to buy, eating what they chose to eat, and Emma would be in charge of snack time on her own. Lately I have been trying to give her more freedom and independence. I've been trying to loosen the reigns so to speak....and give her more control of her disease....because it is in fact HER disease. So, we came up with a master plan to conquer this day. I would go stand my post in the classroom. I would get an upper grade student to look after my duties when snack time rolled around and I would track Emma down to remind her to check her BG and eat her snack. Can I just share how odd of a feeling it was to wander the halls of her school by myself? There I was scanning the mobs of people...looking for my girl...trying to keep the panic at bay and shove those crazy thoughts and mental images out of my head of her passed out somewhere with no one around to help other than her friend....another 8 year old girl...not trained in diabetes...knows nothing of what to do to help Emma other than bring her to a teacher if she's acting weird or says she feels low. SO, on I walked...peaking in classrooms..searching for her face...the face I know better than my very own. It took 3 classrooms before I finally discovered her and 2 friends making bead necklaces. Ahhhh....I let out the breath that I didn't even realize I had been holding...my heart resumed it's normal rhythm. I walked up to her and she very nonchalantly said to me, "Oh hey Mommy! We're making necklaces!"
Well, to make a long story short, she checked her BG, bolused for the snack I gave her, ate it, and went on about her afternoon of fun. I was left standing there...watching her run off with her friends...giggling, hair flying out behind her, and just...being...a...kid. It was perhaps one of the most beautiful things I have ever seen in my life.
At one point during the afternoon, she returned to me at my post with a gigantic chocolate cupcake in her hand, sky blue coloured frosting slathered all over it, and sprinkles covering every last inch. Her friend said to me, "Emma and I wanted cupcakes, and she needs you to tell her how many carbs are in it so she can eat hers now!" I couldn't help but laugh as I heard this little girl using words like "carbs"...a word that she probably wouldn't otherwise have known about at 8 years old...if not for her friend, Emma. I guessed the carbs, Emma bolused, she shoved the yummy looking cupcake in her mouth as she laughed and shouted goodbye to me before running out of the room again. My girl was taking care of herself. She was doing the right things. She didn't just eat the cupcake and worry about insulin and diabetes later. She was doing it. Her friend was showing understanding and compassion. Her friend was treating this little detour in their fun as just another average everyday occurance. It made me smile. She's gonna be ok. She has good friends. She is smart. She is responsible. She's going to be just fine.
After the carnival, Emma went to her other friends birthday party for 3 hours. It was a mobile video game trailer actually...called the Game Asylum. It was AMAZING and the kids really had a blast. They were on this trailer playing XBOX, Playstation, and Wii on these fantastic flat screen TV's on the wall. There was lots of jumping around, dancing, and fun.
This day was filled with a ton of activity, a lot of treats, a load of fun. It was also filled with independence, perfect blood sugars, and proof that my kid is responsible. I got peace of mind that she knows what she is doing and that she has some friends who actually care enough about her to help her out and be there for her.
So, yes.....we won today. We beat diabetes today. It was a sweet victory and I will hold onto this memory forever. When we are struggling with diabetes...because invariably those days will happen from time to time....I will remember this day and know that diabetes doesn't always win....sometimes we do...sometimes we hit it right out of the ballpark...and that is a good feeling.

Thursday, May 10, 2012

My thoughts on fundraising

I think one of the more difficult things for me to handle with this disease is the fundraising. It's hard to ask people for money. It's gets harder with each passing year. I think back to the days before Emma was diagnosed, and I can understand other people's point of view on the subject. If diabetes doesn't affect your day to day life...what personal connection would you really have with it? What would make you even want to help out and donate to the cause...to a potential cure? What would make you even care? I mean it's not you living with it....it's not YOUR child. I get it...I understand. I don't think that I would have really given it too much thought honestly and that actually makes me feel a little ashamed to admit now. I definitely have a whole new perspective on the aspect of "causes" and raising funds for a cure. I have walked through the fires and flames of a disease that has no cure. I have experienced that grief and that loss for a basic and yet miraculous bodily function. I have seen the terror in my daughter's eyes as I approach her with a needle and I have felt that sinking feeling...that gaping wound in my heart ripping open and teaching me that nothing in this life is for certain...nothing is guaranteed. I have lived these moments...moments that unless you are the parent of a child with a chronic disease....you would never be able to comprehend and I could never expect you to.
Remember when you were young and your parents would say things to you like, "You'll see one day. You will know. You will understand why we worry about you and why we question you. You'll see." At the time you probably thought they were full of it and just being typical annoying parents. Until one day, you actually had a child of your own....and you did see.....you did get it. Well, it's sort of the same thing as that. I can explain to you, speak with you, share my experiences and stories, blog about it, advocate, and try to educate.............but you could never possibly understand unless you lived it as well. I get that. I respect that. I understand that.
All I ask is that when you see me posting about diabetes, asking for a donation to go towards an organization like JDRF, or simply sharing links to my blog posts......please take a minute to think outside of your own bubble...step away from your own little corner of the universe.
Take a minute to think about how you would behave if it was your child living with this. Would you do the same? Or would you sit idly by and "hope for the best?"
I don't like asking you for money. I don't like asking for help. I don't like asking you to walk beside us in the Walk for a Cure. I don't like feeling that I am complaining about diabetes. I don't like feeling that I am annoying you by sharing our stories. I don't like it. I am not a complainer or a pessimist by nature. I am a good person. Simply put, I am a Mom who is trying to do right by her daughter. Just like you. I am just...like...you. Yes, my situation is slightly different...a little more extreme at times...a little scarier...a little bit more worrisome.....but I am just....like...you.
So, I continue on....asking for money...donations...help. I do it for Emma and for all of the millions of other diabetics in the world. They deserve it. Having to get needles everyday...bleed everyday...it sucks. Counting and measuring everything out...every morsel of food before you put it in your mouth. Having to plan ahead for the simplest of things like going to the park...or having a picnic. Having the word "sleepover" strike fear into your heart. Waking up late or sleeping through your alarm...your heart pounding as you walk into your child's room...holding your breath and hoping that today isn't the day that you find their lifeless body in bed...surrounded by their stuffed animals....lost in the night from diabetes. It may seem like I exaggerate...like I am being a drama queen...making this life seem crazier than it really is...more extreme than it really is..............I only wish that were the case.
So, when you read my posts....please don't just dismiss them. Please don't ignore them and skip on ahead to see what's going on elsewhere...in your world without diabetes. Give me a chance. Give my kid a chance.

Wednesday, May 9, 2012

A woman's strength / A D-Mom's strength

A woman's strength is not measured in the amount of bags she can carry in from the car. It's not measured in the number of children she can carry around the house while keeping life running smoothly. It's not measured in the daily chores she is able to accomplish or the errands she runs while going about her day.

A woman's strength is complex...and layered. It's detailed and defined. A woman's strength emerges from the moment she realizes that she is capable. It is magnified from the moment she grows life inside of her belly. It skyrockets through the stratosphere in that instant when she lays eyes upon her first child.

A woman's strength will carry her through the darkest hours, the deepest pits of despair, the lowest of lows. It will soften the blow of life's worries for those around her...those that she holds most near and dear to her heart. A woman's strength will motivate, inspire, and uplift.

A woman's strength can seal a bond with other's going through the same things that she is going through....other women that are living the same life as her...mirror images of the power of one. She can heal their pain, ease their sadness, and comfort them in a way that no other soul could even begin to understand. Because you see, that bond....that strength is the same...it courses through every last one of us...connecting us across the miles.

A woman's strength is felt through her smile, her tears, her hugs, her knowing glance. It is a deep impenetrable buzzing of electric energy that floats between us....shared...drawn upon from those of us that need it most...and sent out into the night sky when we have loads to spare.

A D-Mom's strength is all of the above and a million times more. It's a wonderous thing that could not be understood...unless you have felt it and lived it yourself. It is formed the moment we hear the word diabetes in the same sentence as our child's name. It can not be broken. It can not be changed. It's there...for ever and an eternity.

A D-Mom's strength will guide you when you are lost, lift you up when you have stumbled along the way, and help you put the pieces of your heart and mind back together again when diabetes shatters them time and time again.

A D-Mom's strength is one of the few things in this world that you can count on. Just add it to the list of death and taxes....a d-mom's strength will be there for you until the end.

Monday, May 7, 2012

High blood sugars and emotions

It's funny.....not ha ha funny....but more so odd funny....during our entire experience with diabetes, I have never been able to tell if there was a mood difference with Emma when her blood sugars were high. She always seemed like the same kid to me. It never caused her to be mean or angry or anything really....the only sign that anything was wrong was that she had really dark circles under her eyes and would drink a lot of water.
Well, last Saturday night during our bent canula...HIGH BG situation...I got to experience first hand what exactly will happen to Emma when she hasn't gotten any insulin for a few hours. As she laid on the couch enduring an injection in her belly, a new site change, and being forced to drink as much water as possible.......she was in full blown panic mode. She would jump from one second of bawling her eyes out unable to communicate to me what was wrong and what was going through her mind........to another second of laughing hysterically at the cat.........to another second of uncontrollable tears and anger........to frustration and worry.......to hysterical fear and stress. It was like I was witnessing a complete breakdown in her ability to function. Yes her body was there....it was functioning...doing it's best to cope with the overload of sugar in her blood and the lack of insulin and the lame ass pancreas. But her mind....her poor innocent 8 year old mind....it was lost in a whirlwind of emotions and there was nothing I could do to help her except focus on the task at hand. Change her site, give her insulin, and try my best to comfort her. It was such an overwhelming and helpless feeling. Like being lost and stranded out in the middle of the ocean...carrying Emma on my back...floating along searching for land, some sort of light to guide me back to reality. I had no idea what I was doing. I was flying by the seat of my pants and taking it a moment at a time. Putting out fires left and right, trying to help my baby make sense of what was going on in her head. I usually resort to humor in high stress situations...I do whatever i can to make her smile...to make her laugh...and perhaps forget for a moment what is stressing her out....distract her mind and ease her into a more comfortable and familiar place. When you are up against extremely high blood sugars though...in the middle of the night...it's not easy. It's like trying to make a roomful of stuffy middle aged balding overweight men laugh at a knock knock joke. Or like trying to get a giggle out of a roomful of terrorists by telling them a "you might be a redneck..." joke. It's just not going to happen.
Now that it is Monday, i can sit back and reflect on what happened that night. I can breathe a sigh of relief and be greatful that we made it through this time. While in the midst of all the chaos that night, I kept telling Emma that "we can do this" and "we are stronger than diabetes" and "we will be fine" and "Mommy will fix this" and "hang in there, baby...you are tough and we will win this time!"........at the time they were just words to me. I said them to her....but I myself didn't believe that I could fix it...I believed that I had no idea what I was doing. But we did it...we made it again...we won.
I learned a couple of things that night....one being that the majority of the world (myself included) really take our functioning pancreases for granted. We eat, we drink, we laugh, and we cry....all without a second thought as to what a miracle it actually is to have a functioning pancreas. We take it for granted. I learned that my kid is tough. She is tougher than diabetes...even when she is screaming and crying and angry and sad and worried and upset....she is still tougher than it. She lives it. I am merely a supporting actor in this thing. I am simply standing on the sidelines cheering her on and helping her along the way. SHE is the one living it...day in and day out...no breaks...every single second of her life. It's her disease...and she it stronger than it. I learned that diabetes is a bastard...and it will affect not only your body...but your mind...your emotions...your thoughts...and your ability to feel like you are in control of them. While that lesson learned makes me unbelievably sad, it also makes me greatful to know that my kid made it through that moment...she did it...we did it...and we can do anything.

Sunday, May 6, 2012

Do you want to know what it's REALLY like?

Do you want to know what it's like? Do you REALLY want to know?
It's moments of pure bliss....total happiness at the victories..........and then hours later plummeting crashes to the deepest depths of the earth full of utter defeat. It's thinking that you have won...that you have beaten this bastard of a disease...that you are the one in control...you are not only keeping your kid alive, but you are also responsible for making sure they don't die. That is a tremendous indescribable amount of pressure to walk around with on a daily basis. It's what I would imagine hell to be like. Stuck walking on that tightrope between insanity and the real world for an eternity. It never ends. It never stops. There are no breaks...no time outs...no vacations...it never ends...it's a viscious cycle that goes on and on and on...
We had some of the sweetest victories ever experienced with this disease today. Emma went to a birthday party this afternoon and then immediately afterwards went to her 2 hour long gymnastics class...came home...had supper...and then went to the park until bedtime. I rocked it better than I have ever rocked it in the past 4 years with her blood sugars. I was the perfect pancreas. I kept her from going low. I was warmly greeted with a perfect 5.6 blood sugar at bedtime snack. Did I mention that she had pizza for supper too? Yes....the dreaded pizza that normally would cause crazy spikes and dizzying drops in her blood sugar unless I get the insulin doses JUST so...just perfect enough to have the insulin meet up with the digestion of her pizza. How insanely hard is that? Me...standing outside of her body...trying to determine what is going on inside of her...where the food is in the process of being digested...how quickly the insulin i just gave her is moving through her body. It's a friggin crap shoot. I did it though. I rocked it. She was fine. Alive. Happy. Smiling. Did I mention I also had to do a site change today? I had to do it after supper because of how busy she was today. I moved the pump site to her thigh then. As I went through the same process I have done every three days now for nearly a year, I felt like I was in the zone....I was moving like a machine...doing what my hands know how to do best at this point. As I squeezed the sides of that infusion set to trigger the spring loaded needle to shove the tube into her skin........I felt it......something felt weird.....it felt off. I asked her if it felt normal to her and she said yes....so I blew it off as me being paranoid. I live my life in a constant state of jumping from total paranoia to liveable calmness and peace...familiarity.
Fast forward 4 hours................Emma's asleep in bed.......I check her blood sugar like I have a million zillion times before and the meter tells me that she is "high".........that means that it is so high that the meter can not measure the exact number anymore. To say my stomach dropped through the floor would be the understatement of the century. I immediately knew that it was the site. I knew that I should have listened to my damn first instinct...my gut feeling...I should have just changed it when I realized that it felt weird...wrong...off...when I changed it originally. But I didn't. I ignored that voice.
So, I had to wake her up, bring her downstairs, and change it again. I had to give her an injection in the stomach....for the first time in nearly a year. She was crying uncontrollably because her body was bogged down with too much sugar in her blood...she had been abruptly woken up....and stabbed in the stomach with a needle...and told that she had to endure yet another site change.
We did it. She laid on the couch crying...whimpering....telling me that she was upset, scared, worried, angry...........a whole mix of emotions. She felt like she was dying of thirst. She felt all of these horrible feelings.....because of me..........because of my error.
I fucked up.
I pulled out the old site and discovered the canula was bent at a 90 degree angle.
She had gone hours without getting ANY insulin at all.
because of me.........because of my error.....because I must have hit muscle when I changed it earlier.
I know, i know i know......shit happens.......mistakes happen.....i'm not perfect.......none of us are.
but as I held my baby girl in my arms and dried her tears.....tried to comfort her........using the most basic of my Mom skills........comfort my upset child............I sat there and wallowed in the fact that this whole situation we were stuck in was because of me..........because of my error.
I hate diabetes. I hate it with a red hot firey passion. I hate it with every single tiny fiber of my being. I hate what it does to my baby. I hate that I have to carry around this bullshit......this pressure.......this immense unbearable pressure. I hate it. It's not fair and I hate it.
I just wish it was easy. Not even easy so much....but just EASIER. I don't want to be in this club anymore. I love my D-Mom friends like they are my own sisters...........i Love their kids.......but I don't want to be in this club anymore. I want to take my baby......scoop her up in my arms and run........just get the hell out of here and outrun diabetes........beat it......get away from it......I just can't carry it around with me anymore.
It's too much pressure and I am not strong enough anymore.........diabetes has beaten me down day after friggin day and i just don't want to do it anymore. I am a good person. My child is an AMAZING person. We didnt ask for this. we didnt sign up for this. We didnt do anything to cause this.
So, why....................................................
why did it choose us................................
why did we have to be the ones to do this...................
why did i have to cradle my 8 year old baby in my arms tonight and rock her....try to comfort her....she wasnt sick....she didnt have the flu........she was caught in an overwhelming moment of despair with this disease.....................
all because of her Mom
Do you want to know what its like? Do you REALLY want to know?
Imagine explaining to your sobbing child that YOU are the reason why they feel like this and the reason why they are having to deal with this moment of insanity.
That is what it's like. How in the hell can one ever be ok with having a conversation like that. How in the hell can you live day after day walking on that tightrope...carrying that weight.....trying to find the balance and make it to the end.........all while having faith that there will actually BE an end.
How???? I've been trying to do it for 4 years now and tonight I feel like I am back at square one.
Do not pass go.....
do not collect $200..........
do not expect to ever get out with your sanity.......
just keep walking that line.

Friday, May 4, 2012

They never tell you

They never tell you that one day you will have to let go. One day you will have to hand the reigns over to them and send them on their merry way to take care of themselves. They never tell you that you will have to trust that all the years leading up to that day will have been enough. That you will have to believe deep down in your heart that everything you have said to them and taught them over the years will have sunk in. That your voice will be the voice they hear in the back of their minds when they are struggling and not quite sure of what to do when faced with a crazy blood sugar number or a weird diabetes situation. They never tell you that one day your house will be quiet....free from all the noises of diabetes...the beep of the pump when you bolus, the beep of the blood sugar meter, the clicks and clacks of a site change, the rat-a-tat-tat of a pen being tapped against the side of a reservoir filled with fresh new insulin. They never tell you that you will find yourself sitting there in that silence, wondering what she is doing, what her blood sugar number is, and if she is ok...if she needs you...if she needs help. They don't tell you this. They don't tell you that with each passing year, you will see your child not only growing up in the traditional sense of the word....but also growing up with diabetes...taking on more responsibility with it...inch by inch taking a little bit more of it on themselves. They never tell you that and you will find yourself one day seeing your kid bolusing themselves, counting carbs on their own for the food they are about to put in their mouths, checking their own blood sugar, telling you of the adjustments that they think need to be made. It will dawn on you that while you were busy living your life and managing diabetes, she had been paying attention all along and learning every step of the way...and now she is using the skills she has learned. It will dawn on you that whether you like it or not, this is a good thing. She is owning her disease as opposed to letting it own her. They never tell you that you will reach this point and be overcome with feelings over pride and sadness. Two such extreme emotions all wrapped up in one...swirling around fighting for position in your heart. They never tell you about this and they don't prepare you for this....because I don't think there is even a way TO prepare someone for it. I wonder if they know that the only way to make it in this d-life is to live it. I wonder if they know that is the secret.
Live this life and make it your own. Make it work. Make it a good one. Make it fun. Know in the back of your mind that your kid is watching. Your kid is learning how to make it work and make it their own....by simply watching you. Know that yes...that day will arrive when your kid will no longer be a kid...and they will be managing this beast of a disease on their own. Know it, but try not to let it consume you and try not to let the fear and anticipation of that day soil the moments in between...the moments like right now.
Know that when the day arrives that you must let go, you will survive...your child will survive. You are a D-Mom and you have made it all of the years leading up to this point. You have made it and the strength that you have discovered within your heart because of this disease, will continue to be there for you. That strength will help you make it through this chapter of your d-life. You will take comfort in knowing that your strength shines brightly and a piece of your stubborn and determined heart continues to beat with the same strength inside of your child. It's there...and it will always be there...because even diabetes is not strong enough to break the connection between Mother and child.

Thursday, May 3, 2012


We breathe the light that shines right through
the light that lives inside of you
and in the darkest hours of night
the moments when you have no fight
break through those walls
the barricade surrounding your
most frightening falls,
trust that light
seek out that light
draw strength from that light
let it wash over your mind
your spirit
your bruised and scarred heart
let it wash over you
and clear your point of view
the jaded blurry vision of diabetes
washed away for the moment
opening your eyes to the clarity of hope
hope is like a child's most beautiful thought
eager for the coming days
of giggles and play.
hope is innocent
pure and strong
hope is the light shining bright and long.

Wednesday, May 2, 2012

Nearly 4 years and still attempting to flip the coin over

In a little over a month Emma will have been diabetic for 4 years. The mere thought of that makes my stomach tighten and my eyes sting with tears. Aside from the 1st year anniversary of being diagnosed, I think the other years have really felt like "just another day" to me. Sure, I always try to make them special for Emma....make the day about her and about how proud we are of her and how far she has come in the past years time. We always do something fun to celebrate her bravery and her determination in making this new life work...making it fit...and....basically just making it. I have done things like take her to Chuck E Cheese, a shopping spree to the Dollar Store, and even gone to see a movie. I know some people choose not to celebrate because they would rather just not remember the day...it's too painful for them. I have always tried to flip the coin though and look at it with a positive spin on it. However, this year....this anniversary...is going to be a difficult one...I think because it will signify that Emma has been diabetic for half of her life.
I was talking on the phone to my Mom last night about it actually and telling her how I am trying to steal myself and set my mind straight to prepare for this one. How soon enough, whether I like it or not, Emma will begin to have lived more days WITH diabetes, than without. My Mom could obviously tell that it was bothering me...I'm sure it bothers her too. I mean who would like to know that fact about their own child or grandchild? Who would be ok with that fact? Well, as I was talking to my Mom it occured to me that I need to try and flip the coin on this one too. As soon as that sentence fell out of my mouth, I realized that I need to try and look at it as Emma has LIVED more days with diabetes, than without. She has LIVED those days. She has thrived. She has made it work. She has been more brave than anyone I have ever met. She has become more and more strong with each passing day...each needle...each finger poke...and each insulin pump site change. She has done it. She has proven to me day in and day out what the true meaning of determination and strength is. She will have LIVED more days with this damn disease than without.....and I am in awe of that fact.
So, as this day quickly approaches, I will be trying to shove aside those thoughts of sadness and anger and look at it from that point of view.....I will try...and I hope that I have enough strength to see it that way instead.
Diabetes has taken so much from us....and I am going to dig deep and find my own strength as her Mommy to look at it that way. The other side of the coin...the sad, scary, depressing, angry side of that coin seems just too overwhelming.