A 6 year old's views on life and death

Yesterday afternoon my husband, daughter, and I went to a nursing home/hospital to visit my husband's grandmother. She is 84 years old and has cancer and was just brought there a couple of days ago. It's been a couple of weeks since I had seen her because between Emma and myself having coughs and colds and such...i just didnt want to bring the germs around her already weakened immune system. So, when we walked into the room...I was shocked. She was napping...but she did wake up after we came in. She looked like a completely different woman...she was hard to hear and understand...she looked so exhausted...no hair on her head...it was hard. I don't know if it was the right decision to bring Emma in there too or not...but I have always been upfront and matter-of-fact in my approach to life with Emma...so i think it was ok. Grandma didn't talk too much when we were there other than to tell me she was thirsty and to try and point out people who were in the pictures hanging around her room. She was having a difficult time though because she said the morphine she's on for pain makes her mind all mixed up. She sat there a lot of the time staring at Emma...just watching her and smiling. It made me wonder what she was thinking actually. I noticed that she had a bad cough as well...so i asked her if she would like a drink of water and she said yes. I grabbed the cup and straw and held it to her lips for her. She was too weak to even bring the straw to her mouth. Over the course of the visit I did this for her a few more times. When we left though I could not stop thinking...what if she gets thirsty again? There will be her cup of water on the table right next to her and she won't even be able to reach out and grab it for a drink. She won't be able to rely on the nurse coming quickly to help her get a drink either. How awful that is....such a basic necessity in life...being thirsty...and there you lie...wanting a drink of water SO BAD and you can't get it. It's beyond sad to see what our lives come to...laying all alone in a strange bed in a strange room....being tended to by strangers who seem bothered and too busy to actually care. We live our whole lives trying to do right and make a difference...trying to love and be loved...trying to do or be a part of something bigger than ourselves...only to end up in a place like that. Don't get me wrong...it was a really nice place! Lots of flowers, music playing, exercise room, etc. But I know that I would not want to spend my last days on this Earth in some random bed in some random room...taking my last breaths while being watched over by some random woman who only knows me by what is written on my chart. Death is a strange thing.
Anyway, I wanted to point out something else too. Once we got home, I wondered if Emma would make any comments about Grandma and how she looked. Well, no surprise there...Emma asked me why Grandma looked so different today? She wanted to know what happened to her poofy hair and why her face looked the way it did. I told Emma that Grandma has Cancer and the medicine they give you to try and get rid of the cancer will make your hair fall out. She asked me why I asked Grandma how her blood sugars where when we were there. I told her that Grandma also has Type 2 diabetes. Emma said to me, "Well, THAT'S not really fair, Mommy! She shouldn't have to have cancer AND diabetes!" ...................have I mentioned how much i love my child and how she thinks?...................Emma asked me if Grandma was going to die and if she would have to go to another funeral (her other great grandma passed away last february and that was Emma's first funeral). I told her that actually yes...Grandma was probably going to die soon and yes she would be going to the funeral. I told her that I think the people who die would much rather have everyone at their funeral not cry and be sad...I think they would want them to share memories of them and laugh and enjoy the stories. Emma said to me, "I think so too...except if it was like their FAVORITE relative...then they should be able to cry too."
Well, to make a long story short...I think that the world would be a much better place if we all tried to look at things from the same perpective as a kid. We become jaded as adults and tend to forget what really matters and whats really right. I love the fact that I have Emma around to remind me of these things. She teaches me way more than I could ever teach her. She makes me want to be a better person and I could never thank her enough.

My majorly vivid nightmare....

Well, the day has come and gone...we held our 3rd annual hot chocolate sale fundraiser for JDRF. I could not be more proud of Emma!! She raised $932.07 this year!! I know I have said it before, but I am truly so greatful for all of the support we got from friends and family. I am so lucky to have all of you in my life and you make it easy for me to teach Emma that there really are good people out there in the world that she can count on.
As I sit here though thinking about the day...I have a lot of other feelings going on too. While I was standing there behind the table talking to customers and friends, it sort of felt surreal to me. Even though we are 2 and a half years into diabetes, I still sometimes get that feeling of disbelief...like this can not be our lives. We can't possibly be the ones dealing with this day in and day out. It doesn't happen often...but sometimes I still feel like this is all just a bad dream and I will wake up at any minute and start crying with relief when I realize that it isn't true. Like all of the horribly stressful things we have gone through for this long are really just the result of eating some bad mexican food before bed time causing some majorly vivid nightmares. Standing out there today I would watch people read our sign and walk right on by. I even saw a man leave the store after buying a brand new blood sugar meter and just walk right by our table....no second glance...nothing. I watched these people walk into and out of the store...some of them with kids...and I wondered what goes on in their heads. What is it like in their family? Do they even realize how important it is to help each other out? Would they think any differently if it was themselves or their child dealing with this? For that matter...would I act just like them if Emma wasn't diabetic? Would I stop and at least look at what was going on? Would I even care? I can honestly say that I don't know the answers to these questions. I would like to think that I would....but I can't say for sure. Diabetes has changed me...it's changed my entire being...it's changed my heart. I have always been the type to want to take care of others before myself...and i think diabetes has just elevated that part of me.
I want a cure for diabetes. I have never wanted something more in my life. I want it so bad that it hurts...it hurts my heart and brings tears to my eyes. I want to wake up from this nightmare and start our lives over. I can't believe I am sitting here thinking of these sad things after having such a great positive day. What the hell is wrong with me? Ugh...I am such a loser sometimes. In any case, I am so thankful for everyone who came out and helped us. It really does mean the world to me. Thank you!!!

My families...Canadian, American, and diabetic

Well, today is Thanksgiving in the States...and I am American...but I live in Canada...and have lived here for almost 10 years now. This is one holiday that I will never get used to. Thanksgiving in Canada is actually before Halloween here, which is VERY odd to me. I am so used to it being in November. In any case, it has gotten me thinking about everything that has happened this week and everything that I am thankful for. I am completely overwhelmed by the amount of support I get from people in our "diabetic family" here. It has always been difficult for me to deal with not having my family here in Canada with us. I miss them a lot and it only seems to get more and more hard to deal with as the years go on. I miss my mom and my dad. I miss everyone. I deal with feeling completely guilty for not choosing to live in a place where Emma can have her Nana and Papa in her life every day. It's my fault and my decision that has caused this to not be the case for her. My husband's father really is not involved and has not been involved in Emma's or our lives from the time she was born. He randomly comes around or calls...but really has not ever been an actual "Grandpa" to her. It's pretty sad actually because my husband's Mom passed away before Emma was born even...so she never got to meet her. I feel guilty about it a lot because not only is it my fault that Emma doesnt have Grandparents in her life...but it is also my fault that I have taken away my parents getting to experience having Emma in their lives too. It's hard and something I struggle with a lot...especially during holidays and special times like school events or gymnastics events. I see other kids...friends of Emma's with their Grandparents...and it makes me sad that Emma doesn't have that.
In any case, even though we don't have much in the way of family here...we do have some pretty amazing friends! Funny thing is...I probably never would have met any of them had Emma not been diagnosed with diabetes. These women are all amazing. They are fellow Mom's of diabetics...and our soon to be Mom dietician from the diabetes clinc.. :o) They are all unique and special in their own way. They all understand the thoughts and feelings and experiences we have on a daily basis because they have been there themselves. They support me in ways that my family would if they were here, which is amazing to me because I have only known some of them for a couple of years...compared to knowing my family for almost 34 years! I know that I can always count on them for advice or a laugh or even a shoulder to cry on when I need it the most. I hope they know how much they mean to me.
I find it funny how in life certain people are brought together for whatever reason. I'm a big believer in fate. I never would have thought 20 years...15 years...or even 10 years ago that I would be where I am at now. I never would have thought that my child would be diabetic. I never would have thought that I would be surrounded by these amazing people that I now think of as family. I never thought that diabetes would be a word I use daily. I never thought that this would be my purpose in life. Things all happen for a reason though...and whatever that reason may be in my life, I can honestly say that I am lucky to have the people with me that I do to come along for the ride.

Excited and SCARED outta my mind!!!

Ok...so i am scared out of my mind right now...and excited...and nervous...and stressed all rolled into one. The day that I knew would eventually come actually came today. My husband had to work late so it was just Emma and I for supper tonite. We ate and she had desert and I gave her the needle to cover all of it. Well, about 30 min. later she spotted a package of PEZ candy on the table and asked if she could have it. I sort of let out a big sigh like I always do when situations like this occur and I told her no because she just finished supper and I just gave her the needle...and I didn't want to have to give her another needle to cover the carbs of the PEZ and she would be having her bedtime snack in a couple of hours anyway...so no...just wait. I always hate that whole schpeel (is that an actual word?) I have to go thru in those situations. I hate denying my child something so simple. I have tried my absolute hardest over the past 2 and a half years to be as accomodating as possible when it comes to her food and snacks and I try to make her feel as normal as possible. From giving her a glass of water with a splash of apple juice in it when her friend is over playing and asks for an apple juice to drink....to perfectly timing the baking of chocolate chip cookies along with supper so she can have them as dessert and I can count those carbs in with her supper needle. It's hard...and it makes me tired...but I do it for her. So, I decided to bring to her attention that if she was on the insulin pump that she could be eating those PEZ right now...no needle involved...just eat them and push a button on the pump and we're done! Well, to my surprise Emma shouted I WANT THE PUMP RIGHT NOW!! I was in shock! Emma has always been against the pump...she's always been afraid of the needle with it...it was at the point where even talking about it would bring tears to her eyes. So, i asked her if she only wanted a pump now just so she could eat the PEZ? She said in the most mentally and emotionally exhausted sounding voice I have ever heard her use..."NO Mommy...I'm just tired of not being able to eat when I WANT to eat!" It broke my heart to hear that...to see her little face...her beautiful eyes looking so drained and so sick of it all. I think she has just gotten to that point...she's had enough...she wants her freedom back. I want to give that to her. I want her to be happy and healthy and eat whenever SHE wants to eat. I want that more than anything actually! It makes me so excited to know that this might really be happening! However, I am more scared than I have ever been in my life aside from when I found out that she was diabetic. I'm terrified. I've heard the saying "numb with fear" many times before...and now I know exactly what it means. My heart is pounding because I want this so bad for her...and yet my mind is moving non-stop at warp speed with all of these things that go along with a pump. The two main things that I can grab on to at this moment as they fly around my brain are (1) I am scared of losing that safety net of the lantus...I'm completely afraid of something going wrong with the tubing or the site and having her go into DKA very very QUICKLY. (2) I am wondering how in the hell I will be able to handle snack times at school. As it is I go to the school every day to get her and bring her home for lunch. Well, if she was on the pump I would then have the following schedule I think (unless there is some other solution that I am not aware of) 8:30am bring her to school...9:45am go back to school to push button on pump to cover carbs eaten at snack time...11:15am go back to school to get her for lunch...12:15pm bring her back to school cause lunch is over...1:45pm go back to school to push button on pump to cover carbs for afternoon snack...and finally 3:00pm go to school to pick her up for end of day. I might as well just register and join Grade 1 again.
So, anyway...I just needed to get this out of my head. I'm excited and freaking out and scared. I want to do the right thing though...I just wish there was a cure already and this wasn't even a thought in my brain.

Yelling at the TV

Emma has told me many times over the years that she doesn't do well with change. I've always thought it was kind of funny coming out of a little kid's mouth. Well, I am starting to realize that I myself do not like change so much anymore either! I mean I suppose no one really likes change...but we learn to deal with it. I think diabetes has made me dislike change even more though. I find myself cursing the weather man if he says that this afternoon will be sunny and mild....but tomorrow will be bitterly cold and overcast with a chance of snow. I find myself yelling at the tv and shaking my fist at him because of the huge change in weather that will be happening because I know how much the weather affects Emma's blood sugars.Poor weather man...it's not his fault I guess...it's not like he's the one who makes it cold or hot! Anyway, I also find myself trying to mimic what goes on during a school day on the weekends too. I'm not talking about actually sitting Emma down and teaching her math and reading or something. I just mean I feel like I am trying to hang on to the time schedule of things..eating...activity, etc of what goes on during the week at school. It's hard though! Things come up on the weekends and I feel like I am trying to hang on to that schedule by the tips of my fingers in the hopes that her blood sugars will be the same as they are during the week.
I also learned recently that our hero and angel and friend from the diabetes clinic will be going on maternity leave in March for an entire year. (Yes folks...in Canada the govt. allows you to take a full year off when you have a baby! With your job guaranteed when that year is up and you also get a certain percentage of your regular pay each week as well!) I am beyond excited and happy for her and her husband!! She will be a fantastic mom and I can't wait to see the baby!! However, I am a little nervous for that change...a little nervous that my reliable resourceful angel will not be on the other end of the phone for an entire year. I know that I can do it on my own. I know that I will be able to talk to her temporary replacement when needed. I know all of these things...but it still makes me a tad nervous for the change. We will survive though and everything will be fine. I am so lucky to have a friend in her as well...such a great woman!!
Anyway, I guess I better just "Man Up!" as Emma would say and learn to live with the fact that life is constantly changing. Things happen and i just need to accept that fact and accept that they are going to affect her blood sugar. Great...now I have that song from "Shrek" stuck in my head! You know the one...."Ch ch ch changes!"...the David Bowie song. That's alright...could be worse I suppose! At least for this particular moment in time the sun is shining and we are happy. What more could I ask for?

Let's be buddies, mmkay?

So, Emma is home sick from school today with a sore throat and cough. We took her to the doctor and she said it's just a virus and we should do the usual liquids, rest, tylenol routine. I hope that she is better in time for her Hot Chocolate Sale this Saturday. Anyway, it got me thinking about some things regarding diabetes though. I wonder how many things during the day actually get me thinking about diabetes to be honest. I should really pay attention one day and see how many times diabetes actually pops into my little brain.
In any case, this particular time it got me thinking about how greatful I am for one thing diabetes does FOR me instead of against me. I love how I can see an illness coming on with Emma a couple of days before she even shows any physical symptoms of it. For example this time, Emma's blood sugars have been running on the high side for the past couple of days. There was really no other reason or explanation why they would be that high...so I knew...I just knew something was coming. It's kind of nice to be able to have that little warning ahead of time so I can somewhat prepare myself for it. It's frustrating at the time I suppose...trying to keep those numbers down and in range. But I really do appreciate the fact that diabetes is helping me out that way! I guess it's not a full blown jerk face all of the time. It's an every day struggle sometimes to not let it get to me...to not let diabetes get me down...to not let it win. On days like today though, I really am thankful that I have it around. I never thought I would say that really. Don't get me wrong...I would still MUCH rather NOT have Emma have diabetes....but that doesn't take away the fact that i appreciate the few things that diabetes does do for me that are good. It's nice to be buddies just for this moment in time diabetes...thanks

Let's be honest

I was thinking today about all of the little things I know about Emma. All of the stuff that no one else knows about. Things like how she doesn't like to eat the ends of a banana. How she has a certain stuffed animal dog at the foot of her bed and it has a big black spot on its back that she wants covered up by a blanket because she says it is in the shape of a witch and it's scary when she's trying to sleep. Things like how at bedtime she likes to imagine herself on a cloud to help fall asleep. Every single night after the kisses and hugs and "i love you!" i have to tell her a new thing that can be on her cloud with her (i.e. shrek or a monkey or Nana's dogs). Things like how she does NOT ever want her pinky finger poked to check blood sugars. How she does NOT ever want a needle of insulin in her bum. It's really amazing how many little things there are. No wonder why I have such a hard time remembering where I put my keys.
It also got me thinking though about all of the little things that no one knows about me. Things like how whenever I have an eyelash that has fallen on my cheek, I pick it up and blow it off my finger and make a wish. How every time Emma and I pass by a fountain to throw a coin in and make a wish it's always the same. Every time I blow the candles out on my cake it's again the same. Every single time I wish for a cure for my daughter. I know my little wishes aren't going to bring a cure any closer...but I still do it...every single time. Wishes may seem silly to some...but I do believe in miracles...they must happen because otherwise I would not have my daughter. Another little thing about me that no one knows about is that whenever I am stressed or worried about Emma's diabetes, I always talk to my grandpa who passed away. I ask him for help and strength to make it through. I ask him to look out for Emma and keep her safe...and he always does. One more thing no one knows is that no matter how many times people tell me otherwise and no matter how much I will agree and say it out loud...i still feel guilty...i still feel like it is my fault Emma is diabetic. I can be told it's not so...and there is no way it is my fault. Deep down in the darkest parts of my heart...way down there where no one else can see...locked away from the rest of the world...i still feel guilty. Over the years I've gotten pretty good at hiding my true feelings...which I know is a bad thing...but it was just a way of coping in the beginning...a way to stop crying in front of Emma. I honestly don't think that it will ever go away.
In any case, here we are again...the house is quiet...Sunday night and letting my brain run free. What a creep diabetes is...

my loopy befuddled brain

Sometimes I think diabetes is mocking me...
Everything is going along nice and smooth and easy...and then out of no where..BLAMO! Let's throw a low or high blood sugar in there. Just for fun...just for shits and giggles to see how she will handle it this time. Let's see how well she can function with only 5 hours sleep a night every night for 10 days straight. Let's see how good of a mom she can be then. See how she can walk around and take care of her family and herself with that little sleep. HAHA! Good times. Sometimes I feel like I am losing my marbles because of diabetes. It takes and takes and takes with no break. If diabetes had a face...it would be next to the word "relentless" in the dictionary. I get so tired that i start to laugh at the dumbest things...I sit there laughing away at the cat sitting on the living room carpet playing with a straw. I know in my head that it's really not that hysterical...but I am so freakin tired that it's like I can't stop laughing. Usually in our house, because my husband works and I am a stay at home mom...i am the one who gets up with Emma and handles the majority of the diabetes related tasks. However, on the weekends when my husband isn't working...I will sleep in and he will get up with Emma and do breakfast needles and everything. I LIVE for those days. It's like I get to catch up on sleep and fill up my reserve tanks of energy just so I am able to make it through the following week. Well, sometimes my husband does have to work weekends too...so I miss out on those wonderful "sleep-ins". This weekend is going to be one of those times. When my husband told me he had to work Saturday AND Sunday this weekend I felt like crying. I immediately counted the days in my head until the next weekend when I hopefully will be able to sleep in again. 7 more days of not getting to sleep in...as long as he doesn't have to work next weekend too. That will be 12 days total in a row of not getting to sleep in...not getting more than 5 hours sleep in a row each night...I hope I have enough energy left in my reserves...stupid diabetes. Some people take naps that are as long as I get to sleep at night. Diabetes, I wish you would just be my friend already and we could be buddies and get along and figure out some sort of compromise. You let me sleep for a continuous 8 hours with no crazy blood sugars...and i let you make me figure out some crazy insulin to carb ratio involving pizza, ice cream, and pasta. Deal...or no deal? cause i'm not gonna phone the banker to get your final offer...i will just get Howie Mandel to kick your ass instead...lol

Being brave and loving with my whole heart

For the past two weeks Emma has been trying to get up enough courage to go down the fire pole on the play structure at school on the playground. A lot of her friends are already able to do it no problem and I think it really bothered her to not do it herself. Well, for the past couple of days after school she would climb the stairs up to the pole and stand there trying to talk herself into just doing it. Each time she would psych herself out and we would wind up leaving the playground with her in tears because she couldn't do it. I tried everything to help her...telling her there is no way i would let her fall, i would stand at the bottom and help her, i wouldn't let anything bad happen! Nothing seemed to be working though. Well, yesterday after supper she asked me if we could go to the school so she could try one more time. It was pitch black outside (thank you very much daylight savings time! grrrr!) and pretty cold out too. I still had dishes to do and I was tired from being up at my usual stupid o'clock the night before checking blood sugars. I wanted her to be able to stop stressing about it though. I wanted her to be proud of herself for doing something that was scary. So, off we went to the school. It took about half an hour of standing there at the bottom of the pole...convincing her that she could do this to just trust me, the whole time shivering and trying to stay warm. I tried to look at it from her point of view...how scary it must have looked from up there...how hard it must have been to step off that platform and grab ahold of the pole. She did it though! I was so happy to see how proud she was of herself finally!
Sometimes I forget that she is only 6 years old. She is so brave about things like getting needles everyday, finger pokes for blood sugar checks, getting blood work done every 3 months for clinic appointments...dealing with everything involving diabetes. She knows about things that most kids don't know about it. She knows how everything she does can affect her blood sugar...she knows that playing with her friends can be fun of course...but it also can cause her blood sugar to drop too low. She knows that she is different. Just this morning she told me that she knows she is special at her school because she is the only one who is diabetic. She sometimes seems to me like she is older than she is...and yet other times she is still my baby girl. She still needs me to hold her hand and comfort her when she's scared. I hope she knows that I will always be there to hold her hand...Before she was born, I never knew how much you could actually love someone else. Love is not even a good enough word. From the minute I knew that I was pregnant I loved her. From the moment i looked into her eyes for the first time, she had me...she had my whole heart that very minute. I love her with my whole heart and soul. I wish I could make other people understand that is why i do what i do and say what i say in hopes of a cure being found for her diabetes. I guess people know that I do it cause she is my daughter. But it is more than that. I do it because i have such an overwhelming need to fix what is wrong...to fix it so she can live a long and healthy life...so she can someday have kids of her own without having to worry about diabetes complicating things..so she can know what it feels like. So she can know how I feel when I look at her.

Track 3 on my diabetes greatest hits CD

Those of you who know me personally already know this...but for those who don't...i am definitely NOT a morning person. It poses somewhat of a problem for me dealing with diabetes...but we manage. I usually stumble around and really don't talk at all until I have gotten my first cup of coffee in me. This morning I woke up half an hour late and in the midst of rushing around trying to get everything done and get Emma to school on time, i noticed something i've never paid attention to before. The sounds of diabetes. It's pretty weird really. All the clicks, ticks, beeps, and such. Sometimes they are so faded away in the background that I don't notice them at all...other times they are so loud and in my face that it is deafening. I never thought it would happen...and by reading my blog, you probably would never believe me...but more often than not I usually don't hear them at all. Usually I am so busy with everything, that I don't even notice or realize anymore that I am checking blood sugars or giving needles or even counting carbs. It's like my brain has rewired itself to just DO them...it's just another part of the routine...it goes hand and hand with eating. All of the other people in the world who are able to just EAT when it is time to eat..that is weird to me. I have forgotten what it is like to be able to just sit down and put the food in your mouth and eat. Sometimes when I look at food now I don't even see the actual food...i see a number...the carbs. Very strange. It apparantly has had no affect on me eating it though...lol..i certainly don't have a problem eating too many Nilla wafers for example. It is strange though...kind of sad in a way. Sometimes I wonder what I will do with my time when Emma is grown and out of the house. What will it be like for me at meal times? Will I still count carbs? Will I still measure out a cup of veggies for myself? How will I be able to break these habits that I have now? Will I ever get rid of the need to give a needle to someone after eating? How will I be able to go back to the way things were with food before diabetes? I think it will be hard. In the beginning of diabetes moving in and becoming an unwanted houseguest, I thought it would be hard to get used to adding the needles, blood sugars, etc to the meal time routine. I thought I would never be able to get used to it. Human nature is a strange thing...Now it is all such a habit to me that it is sort of weird. I have found comfort in the routine...comfort in the habit. So much comfort in fact, that I am a little worried of what it will be like to not have that routine...that familiar worn-in favorite sweater. Only time will tell I suppose.
I realize that I have gotten a little off my original topic...so I am going to try and rope it back in here...lol. The sounds of diabetes! Well, those times that the sounds of diabetes are deafening...those times are the scariest...the most dreaded. For example when Emma is low it seems like each of those sounds could make my head explode. The unzipping of her meter case...the opening snap of the test strip container...the beep as I put the strip in the meter...the clicking of the lancet...the ticking of the clock as each single second passes with an eternity. That "song" of that single moment in time is worse than any noise i've ever heard. Sometimes i think i would prefer to listen to nails on a chalkboard. Thankfully that particular song doesn't come on our playlist all that often. In any case...the sounds of diabetes are with me always...whether I hear them or not

Who is that I see in the mirror??

Did you ever walk past a mirror when you are out in public..say shopping at a store for example...and you catch a glimpse of yourself out of the corner of your eye and think "WOAH! That woman could use a nap!"? That happened to me the other day...very disturbing. It got me thinking though...I wonder how other people perceive me. I mean deep down I really don't care what others think of me...unless they are members of my own family. But from a general curiosity killed the cat point of view...I do wonder. I wonder if people assume I've been crying or sick or on drugs when they notice the blood shot eyes i tend to walk around with every day because I've been up at stupid times of the night checking blood sugars. I wonder what they think when they see me stopped with the blood sugar meter supplies out laying on top of the loaf of bread in my shopping cart while getting groceries...checking Emma's blood sugar in the produce aisle of the store because she looks a little TOO pale to me. What do they think when they see me pull out the needle of insulin in the middle of the mall and see me lift up Emma's shirt to get at her belly so I can give her the needle to correct a high blood sugar? I wonder if people who know me feel sorry for me because of diabetes. I wonder if they think that my life is so sad and that diabetes makes everything so much less fun in our house. Do they think that we have it so much harder than them and do they look at Emma and their kids and think how happy or lucky they are that it's Emma and not their child who is diabetic? Do they know that sometimes I wish that it was some other kid and not Emma who has diabetes? These are some of the things running through my head in that split second it takes to catch a glimpse of myself in a mirror at a store.
Who knew my mind moved that fast? lolol...i sure didn't

The Emma/Mommy bubble

A couple of days ago we went to an indoor playground for a JDRF event. I talked about it in my last blog actually. Well, I wanted to also bring up something that happened that same day. Emma's numbers were on the higher side all day, so when we got there I decided to not give her her usual afternoon snack because I didn't want her blood sugar to skyrocket. Everything went ok when we were there and we went about our usual business at home of getting supper ready. Well, about 30 min. before supper was going to be done Emma came up to me and said that she thought she was low. I checked her and sure enough she was only 2.9. I instantly got that panicked feeling in my heart...my brain focused solely on juice box juice box juice box. Get the carbs into her before something more dangerous happens. I opened the fridge, grabbed a juicebox, jammed the straw into it and shoved it in her mouth. Then I sat there staring at her...waiting for her to finish it. I absolutely hate that feeling. The waiting and wondering if it is working...if it will bring her up quick enough. I hate seeing her so pale and so shaky with the panicked look in my eyes mirrored in hers. So, she finished the juicebox and I waited a few more minutes...staring at the wretchedly slow clock...my stomach clenching and twisting in fear...trying to force my hands to stop shaking and stop wanting to pick up the meter to check right away because i know i need to wait longer to give the juice time to get in her system. I can't take my eyes off of her...im afraid if i do that she will pass out or worse. After she drank the juice and i was able to wait long enough, she told me that she still felt funny..........ugh. So, I checked her again and she was 2.6. awesome. So, once again the pounding heart comes back and i rush to grab anything at all that has carbs and shove it at her. Well, to make a long story short...her blood sugar finally came back up to normal. I hate that moment in time though...when you are waiting for it to be ok. It's like everything else in the world has stopped...no other noise...no other sound...nothing is moving...like someone has pressed pause on the dvd of your life. The only thing that I can focus on is Emma...her eyes...her face...her shaking hands holding the juice that is putting carbs back into her little body...my own shaking hands holding the meter and lancet...staring at the clock..watching that minute hand draaaaggg around the numbers. It's like her and I are in our own little bubble and everything around us is gone...we are solely focused on diabetes and her body. I hate what diabetes does to her...i hate what it does to me. I will never let it beat us though...it won't win. If it takes the rest of my life to ensure that my daughter is cured...that is what I will do. She doesn't deserve to have this in her life. No one should have to watch their child turn white as a ghost and shake uncontrollably...telling you that they feel low...needing you to make it better. You can't kiss diabetes and make it better...you can't make it go away...you can't "fix" your child's diabetes. Diabetes takes away one of your number one duties as a mom...the ability to make your child better with a kiss. Each time this fact is thrown in my face...each time one of these moments in time is thrust upon us...each low blood sugar episode...it hardens my heart a bit more. I hate that diabetes can do that to me and i hate that i am not strong enough to stop it from happening.

The eyes of the world...

Today we went to a Family fun day event put together by JDRF. It was really great to spend time with some of the other diabetic families in our area and Emma had a blast playing at the indoor playground. It's nice to have these families in our lives. It's nice to be able to sit on a bench and talk with another mom who understands. It's nice to not have to feel like we are the odd ones out when I stop Emma from playing for a minute to check her blood sugar. I have said it many times before, but I don't know what I would have done these past 2 and a half years without having these other moms in my life. It really is like a family to me. We are all connected on such a deep emotional level that it really is amazing. There are some of us who have been dealing with this disease for a lot longer than others...and some who are brand new. We are all together in this journey. I find it interesting just looking into the eyes of these women while talking to them and seeing something I recognize in myself. The newer eyes still have the look of sadness, worry, stress, exhaustion, and sometimes guilt. I can look into their eyes and see myself at that point (and still at some moments now!). It brings all of those emotions back up to the surface...it hurts my heart so much that they are now with us in this fight. Those eyes look like they wish that they could just wake up from this nightmare and have everything be back to normal...back to how it was before the doctor told them their baby was diabetic. I wish i could tell them that they have more strength in themselves then they could have ever imagined. I wish I could change it for them...i will be there to help them anytime they need me.
Then I look into the eyes of a mom who is at the same point in this fight as me. I see a bit of confidence, familiarity, strength beyond all measure, still worry and stress, still tiredness, a knowingness of how far we've come and how much we've endured, a worry of what is yet to come, a bit of peace and acceptance of it all. Looking into these eyes is like putting on your favourite sweater...its comforting, warm, familiar. I can look into these eyes and KNOW in my heart and soul that I am not alone...I will always have these women in my life to help me and be there for me. I will always help and be there for all of these women too.
Then i look into the eyes of a mom who is at a point in this journey far beyond me. She has been at this so much longer than I can relate to. In these eyes I see worry and stress and tiredness still...but I also see a strong confident woman. I look into these eyes and I see endurance beyond anything that I can imagine. It makes me feel like I can do this too when I look into their eyes. It gives me hope and confidence.
These women are all very special to me. I hope on some level at some point in time I can be as important to them as they are to me. That is all we have in life really....each other. All of the STUFF we have doesn't really amount to anything in the end. I think that it is all about WHO we have in our lives...who has made an impact on us and our souls deep down where no one could possibly understand unless they are dealing with it themselves. It's about who WE have made an impact on as well. That is all I care about..surrounding myself with truly good to the core people. Being there for someone who needs help. That is what I love about life...

A knife through the heart...

So yesterday at lunch time Emma was 3.1...ugh! The rest of the day was absolutely perfect though...she was actually 7.5 at three different times during the day which is awesome. Anyway, at lunchtime based on her low blood sugar reading and the amount of carbs she ate...it worked out that she didn't need a needle at all to cover it. This is a pretty rare occurance to be honest. I think in the past 2 1/2 years it has only happened one or two other times. It's weird too how at the beginning of diabetes being in our lives I never wanted to give her a needle...i always felt so bad having to do it. Well, now I feel like I am doing something wrong when it works out that I don't have to give her one! The last time it happened, I brought it up to Emma how cool it was that she didn't even need a needle for that particular meal. I thought it was pretty neat that for that one moment of the day we could sort of "pretend" that she wasn't diabetic. Well, Emma had the complete opposite reaction. She instantly burst into tears! In between sobs, she was telling me how she missed how things were before diabetes when she NEVER had to have a needle for ANY meal she ate. She said how much she hated diabetes and wished that it never happened to her. That was probably one of the lowest points for me since this all began. It was like a knife straight thru my heart to see my baby girl so upset...so hurt and angry and bitter about how things have to be for her. Emma is typically a very easy going mellow kid...she kind of rolls with the punches and doesn't seem to get too bothered by things. So, it is quite a shock to me sometimes when she reacts like that. People always say things like "it just breaks my heart"...I say it too actually. Well, to see my little girl sitting there crying her eyes out, feeling so helpless and hopeless....my heart actually did break I think. A piece of my heart broke that day...it kills me to not be able to help her...I don't have the words or the knowledge of how to handle a situation like that. I just pulled her into my lap and hugged her and wiped away her tears and kissed her. Our kids should never have to deal with something so heavy like that. Us as Moms should never have to deal with that either...we shouldn't have to sit there and try to think of how to comfort our child when they are filled with so much despair over something that they didn't ask for...they never asked for diabetes...they didn't do anything wrong to get it...they are so innocent! Diabetes has hardened my heart I believe. It has made me react differently to things. It has changed my whole perspective on things. It's changed ME forever like it or not. For the most part, I think Emma deals with her diabetes better than I do. She is a lot stronger than I am. She is a lot stronger than most adults I know. She is my hero. So, needless to say...yesterday when it worked out that she didn't need a needle at lunch...i didn't mention it to her at all...i didn't even bring it up. I just continued about our business and she didn't even notice. Or maybe she did...and just held it all in this time. I hope not...i hope that she can just be comfortable with letting out her emotions and feelings when she needs to. Diabetes is a bully...i hate it...

Eating out with ignorant folks

So, yesterday was a pretty busy day. After school we had parent student teacher conferences and then we went to pick my husband up from work. On the way home we stopped to grab a quick supper at A&W. Well, while we were sitting there and Emma was eating...I gave her her needle just like normal. There weren't too many other people in there...and I didn't make a huge obvious deal about what I was doing...I just went about my business of giving the needle just like I do every single day. I have never tried to hide the fact that I am giving her a needle...I've never tried to make a big deal out of it...I've never really treated it as anything unusual or out of the ordinary. I am just helping my child out by giving her something that her body can't make on it's own anymore. It's the same as cutting up your child's food into bite sized pieces so they won't choke. I just consider it as one more part of the routine of eating...wash hands, eat, count carbs, needle. I have noticed many times over the years though that some people out there have a real problem with me giving my child a needle in public. I have gotten glares, stares, rude comments, and the always amusing "pfftt" noise from people. I find it funny too that 99.9% of the time these things are coming from grown adults. People always think and say that children are cruel...they are mean and make it hard for others to feel like they fit in. Well, I personally think that most adults are the actual ones with the issues. Kids may glance over to see what I am doing when I give Emma a needle or check her blood sugar...simply because they are curious. Adults will assume the worst...they assume that it is some kind of "drug" , which blows me away because my daughter is SIX! why the hell would they think I am giving my 6 year old child drugs? If they are smart enough to realize that it is in fact just insulin I am giving her, then they pass judgement on what I am in fact letting her eat at the time. The worst places I have found for that are McDonald's and Dairy Queen. Don't get me wrong...we DO NOT eat at those places all the time! It isn't healthy for anyone diabetic or not. Anyway, the all-time worst was one day I had taken Emma to eat lunch at Dairy Queen and afterwards I got her a little ice cream for dessert. While eating her food, I gave her the needle. This woman who was probably in her 60's was watching the whole time...she had this disgusted look on her face. I was watching her out of the corner of my eye the entire time because I knew that something was going to be said...my radar was up...I kind of  can see it coming now. Well, she gave me the "pfffttt" noise and sat there shaking her head and commenting to herself how disgusting it was that I was letting my child eat that food and making her have a needle. Why didn't I just feed her better and not let her have any sugar? Ahhh...it's really disappointing sometimes how ignorant people are. How did we get to be so cruel to each other? What happened to make us this way? I have developed some pretty thick skin over the past 2 1/2 years...so it really takes a lot for me to actually get upset over something someone says about my daughter's diabetes. I hope that when she is older she doesn't have to hear too many ignorant comments or be treated cruely by people who feel like they know everything. And if she does...I hope that I have taught her how to handle it with a grain of salt and not let it get her down. There is so much more to diabetes than just needles and blood sugars and carbs....way more than most people ever realize. In fact I think the needles and all of that are really the easiest part of it. It's the mental strength you must have to really make it. You need to be able to dig deep and be strong mentally and emotionally. You need to believe in yourself and your abilities. You need to have faith in yourself. There is so much that I am trying to teach Emma about this...I hope I am not forgetting anything important. I hope that she will know some day what it's like to not have this annoyance in her life. She deserves it.

Wanting another baby and OUR life's ride

So I have thought about writing about this before...but I always wind up erasing it and writing about something else instead. I should have known better though...because it is still floating around in my head banging back and forth trying to get out...lolol...so I should just write it out and be done with it. Anyway, I have always wanted to have more kids. I mean I LOVE Emma more than words can even describe...but I have still always wanted to have more...at least one more. My husband has 2 from a previous relationship. They are 15 and 12 and do not live with us. I have always wanted another baby though. I think part of it is selfishness. My family (parents, grandparents, brother, etc) all live back in Wisconsin where I am from. I think that makes me want another person with us here even more...another person for Emma to have. She has actually made many many comments to me over the years about how she wishes that she could be a big sister...and she could have a brother or sister who is here all of the time too. Well, problem one with this is that I don't think that my husband really wants any more kiddos. Problem two though is much more difficult...I think that I would constantly be worrying that the baby would have diabetes too. I think that I would be constantly looking for the signs...wanting to check their blood sugar too...worrying about a whole other person having to go thru the same stuff as Emma does. I wouldn't be able to handle the guilt if that happened...I would never be able to forgive myself I think. I would know that I selfishly wanted this baby...and it would be all my fault that they were diabetic too. How would I be able to accept that? And what if it never happened until they were much older than Emma was? What if we reached the point of that collective sigh of relief thinking that they weren't going to be diabetic too...only to find out that wasn't the case? On the other hand though...what if it never happened? How paranoid would I make this child fron my constant worrying about them? UGH. I know we can't control the future...we can't predict what would or wouldn't happen. We just kind of have to strap in and hang on for the ride. That is the whole point of life, isn't it? The journey...the experience...the ride... It isn't about the end result or finally getting to that specific point or getting that specific thing. It's about what happens on the way there...who we meet along the way...what we experience on the way there. I wish though that I could settle this in my head. I wish that either the feeling of wanting another baby would go away...or the feeling of worry and guilt about wanting another one would go away. I hope now that I have written it out, it will stop banging around in my head and I can have a little peace on that matter. I would like to be able to just focus on the ride we are on now...strap in...and try to keep all arms and legs inside the vehicle at all times. Except when we reach that first loop-de-loop....then it's definitely arms in the air and screaming my head off....

I often wonder what it would be like...

I have always liked to write poetry. I know I'm not the greatest at it...but I like to do it. So I won't apologize if it is horrible...lolol...cause writing it makes me feel better.

I often wonder what it would be like...
to not have to give any more needles
to not have to check any blood sugars
to not have to stress about illnesses
to not have to worry about highs and lows
I often wonder what it would be like...
to not have this ball and chain around my foot
dragging it around every day never-ending
carrying the weight of diabetes
with every step I take
on and on forever attached
I often wonder what it would be like...
to lay down in bed at night and do just that
lay
and sleep freely
no terrifying feeling in the depths of my heart about waking without her
I wish i had the words to tell her...
she is my world
she is my heart
she is my soul
she makes me ME
I wish I had the words to tell her...
she makes everything better
more beautiful
more innocent
fun
real
Diabetes may be on this road with us...
but WE are the leaders of the walk
WE are the leaders hand in hand
step by step
moment by moment
we continue on together.
I don't know how I lived before I had her hand to hold

I Was All By Myself

Even though I know I have a lot of friends who really do understand diabetes and what we go through every day...sometimes i still feel really alone. Usually it hits me late at night when the house is quiet and everyone else is asleep...like right now. It feels like I am standing in the middle of a huge crowd of people that are chattering away...laughing and talking and totally oblivious to the fact that i am standing right there...and I want to shout and laugh with them...but I can't...no sound comes out when I open my mouth. There I stand in the dark...just out of arms reach of the rest of the world...my fingertips are so close to being in the light with them, but no matter how hard I try..i just can't get there. It's a horrible feeling. I don't feel this way all of the time. Or maybe I do and I have just learned how to push the feeling down below everything else and try to ignore it. I don't know. Sometimes I feel like I can talk and talk until I have no words left to get out..and still people don't understand. People who are supposed to agree with me...people who are supposed to be on my side backing me up and believing in me...they just don't get it. I have a hard time with these "supposed to people". It's hard to be a Mom...it's hard to be an adult...it's even harder to be a parent to a diabetic. Sometimes I feel like I am just banging my head against the wall trying to make those "supposed to people" have faith in me and my abilities in doing a good job. I feel like I can never fully vent to them or let my true emotions out because they are annoyed with all the diabetes talk. I wish I could say to them sometimes that there are days when diabetes consumes me...it consumes every single thought in my head to the point where i feel like i could just explode. Then I feel like why should I have to try so hard to get those people to support me? why should i care? why do i feel like i have to prove myself? I know I am doing the best i can....why do i need approval from these "supposed to people"? I sometimes wish I could just get by with not needing someones shoulder to cry on every now and again. I wish I was stronger. In the beginning of Emma's diagnosis, I cried a lot...well I hardly ever cry now. I guess I have trained myself to hold it in and just be strong for my daughter...don't ever let her see me cry...be tough...be the strong and reliable Mommy that she deserves. Well, on nights like these when I feel completely and utterly alone in this...I think I will just sit here and write it all out and cry. I think i forget that getting the words out of my head and my heart simply just isn't enough sometimes...i need to cry them out too.

Irony and pancreas sharing

I sometimes wish that I could share my pancreas with Emma...I am hypoglycemic, which means that I have a tendency to have low blood sugar. I find it a bit ironic that my pancreas produces too much insulin and my daughter's produces none. It's a bit of a slap in the face to be honest. I wish there was a way for me to give her half of my pancreas and take half of hers...together we would make a fully functioning normal pancreas...lol. Irony is a jerk sometimes. It's ironic that for years I have had issues with insomnia...and now I have a child with diabetes which causes me to be up at odd hours of the night to check blood sugars. It's ironic that in my early 20's I worked as a telemarketer for non-profit organizations like public radio and PBS and I was HORRIBLE at it...I hated having to ask people for money...and now a lot of the time I go around trying to get people to help support Emma with her fundraisers for JDRF. It's ironic that for years I didn't have a doctor and never went to the hospital because i lived in the states and I had no health insurance...and now since diabetes i feel like i am always visiting doctors or hospitals for clinic appointments. It's ironic that I really am a shy person who doesn't particularly like talking to strangers or being the center of attention...and now since diabetes I have to speak up and talk talk talk about it to bring awareness. It's ironic that I personally don't have the greatest self-esteem and I have a tendency to doubt myself and my decisions...and now I worry and spend most of my time trying to build up Emma's self-esteem and make sure she believes in herself. Like I said before...irony is a jerk. I find it weird how things always seem to come full circle and balance out. Makes me wonder though about what I am doing now and how it will affect things later on down the road. I hope there's not too much more irony...i think i've had my fill of it...lol. After typing this blog now, all I can hear in my head is that Alanis Morisette song...isn't it ironic don't ya think?

Easy fixes

This past Monday Emma went to school with a lot of extra things in her backpack...making it heavier than normal...and she wound up pulling a muscle in her neck. Poor thing! It got me thinking though...there have really only been about 3 times in her life that she has been injured and it had absolutely nothing to do with diabetes. I think it is kind of funny how weird it is for me to deal with a regular old injury. I am so used to everything having to do with diabetes or diabetes affecting some sort of problem or illness with her. I know it may seem weird to say this...but it sort of feels like somewhat of a relief when something happens to her and it doesn't have to do with diabetes! It's like I get to see how the other half lives for a little bit...i get to see what a parent of a non-diabetic child deals with. It's an odd feeling! My brain has rewired itself I think to just always be on red alert for any and all diabetes related occurances. So when something I would consider "simple" to a certain extent happens...i feel like yea i can totally handle this...this is EASY! I would take all the pulled muscles and broken bones and cuts and bruises and scrapes over diabetes anyday. I know that won't happen. It is nice though to just have something "easy" thrown into the mix every once and a while. It makes me feel like I know what I am doing. Like I can handle this and i can to a certain extent just "kiss it and make it all better" like a Mommy is supposed to be able to do. That is a nice feeling. Makes me feel like a good Mom.

Turning everything Blue and visualizing the perfect day

November is Diabetes Awareness month. I sit here and wonder what that all means to me. I think it is great that there is an entire month dedicated to diabetes...however, i never really see much media coverage or attention focused on diabetes this month...or any time during the year for that matter. I mean sure I see the odd commercial on tv for blood sugar meters and such...but nothing really to speak of. However, ever time I go to the grocery store it seems like I am surrounded by a sea of items on the shelf that have now "gone pink" to support Breast Cancer research. Now please don't get me wrong....i am all for breast cancer research and for them getting all the support they can as well. My Grandmother is a breast cancer survivior. I am in no way saying anything bad about the support they get at all. I just don't understand why at least for this month....i can't walk into the grocery store and see a sea of items that have "gone blue" to support JDRF or diabetes research and awareness? Why does it seem that diabetes is just kind of shoved in the corner? It's given the old "oh...yea we will get to that disease once we are done figuring out the other big more important ones first. You just hang tight, diabetes...you're fine anyways! just stop eating so much sugar and go out and get some exercise...you will be fine until we get back from trying to fix the other diseases!" It drives me crazy if I think about it too much. It makes me want to go out to every single store with my blue ribbon and wrap it around every single shelf in the whole place. It makes me want to call up the news and tell them that i am going to walk across the entire country on my own two feet while I am dressed entirely in blue and handing out brochures about type 1 diabetes....just to bring about awareness...just to maybe educate a few people. What would it take to grab some attention for this disease? Whatever it is I am willing to do it...i would do anything. I know i complain about having to always be the diabetes educator and advocate for Emma....but honestly, I will continue to do it until my last breath. I will stand up for her and speak out and fight and hopefully it will all pay off one day. It has to...
They say that to reach your goals you need to visualize yourself achieving them. I know that I am not smart enough to find the cure for diabetes on my own. However, I am smart enough to raise money for the cause, tell my daughter's story over and over and over again, and be there to support people who are living this life every day too. I visualize myself being able to drive to my daughters school...run into her class room and scoop her up in my arms...and tell her that it's OVER! It's done...they have a cure!!! I visualize the look on her face...the pure JOY and relief...the realization that she no longer has to get any more needles...she no longer has to consider diabetes as a factor in anything she does every day. I visualize that beautiful face of hers realizing that her nightmare is over...she can wake up now and never have to worry again if she is low or high. I visualize her being able to sleep in...or run and play all day without having to stop for lunch or a snack. I visualize her face when i can tell her. I feel like that day is so close...it's so close i can taste it...i can almost feel her arms around my neck squeezing with excitement and happiness. What I wouldn't do to have that day be today...

My little creature and her 3 choices

So this week Emma is "Creature of the Week" at school. Apparantly each week one student gets to have this honor because they have displayed some sort of good behaviour...sharing, being a good friend, etc. I am so proud of my little "creature"! This morning I had to send in 12 pictures of Emma and she had to choose 3 items that she wanted to bring in and talk about. I was very curious to see what she would choose to bring in. The first item was very easy for her to pick...she brought her Stitch doll in that she got from Disney World when she was 4 and we went there with my Mom. The second item she chose was the wrist band she wore in the hospital when she was born. She couldn't get over how tiny it was and how it only fit around a couple of her fingers now! Time sure does fly by and she sure is growing up fast. I wish I could slow it down just a little bit. The last item she chose to bring in was a little bit of a struggle...she went back and forth between a couple of things. This was a very important decision for her and she wanted to make sure she picked the right one! It crossed my mind to suggest to her something that had to do with diabetes...but I didn't. I wanted to see if she would choose something along those lines on her own. I wanted to see how much value she put on her diabetes...how much she thought it was a part of her and how important she felt it was to talk about. Turns out that diabetes is about the last thing on her list of important things in her life....that made me happy. It made me ecstatic actually to know that all of my worry about what she thinks of diabetes and how she perceives herself compared to her friends...and how much importance she puts on being diabetic..and how much she feels that it is a part of her life and who she is deep down....was all for nothing. I guess I worry about all of that enough for the both of us combined.
Anyway, the last item came down to either a framed picture of her Grandma who passed away before Emma was born.....or a magic book that she got from the magic store during the summer. I thought for sure she would choose the magic book because it is fun and cool and she would love to show her friends how it works. I was wrong though...Emma chose the picture of her Grandma. She said that she wanted to show her friends at school how pretty her Grandma was and tell them that is where she got her middle name from (Emma Beverly Ermel) ...and tell them that she never got to meet her because she died...but she is an angel now and she watches over her all the time...except when it lightening and thunders out...because then Grandma Bev is bowling with all of the other angels. I thought my heart was going to break when she said that....what in the world did i ever do to deserve such a sweet, thoughtful, and caring little girl? I wish there was a word out there to describe how much i actually love her.