Strong, but exhausted…

 

 

This last week has been a bit of a ride for us. Well, to be completely honest, it has been quite the ride since our son was diagnosed with type 1 diabetes in 2015. But this week, he got his insulin pump, and we had to learn how to not kill him all over again. The learning consisted of us sitting in a classroom at the University of Alberta, with 8 other families, all with children there, while two nurses stood at the front of the class, and tried to cram as much insulin pump knowledge into our heads as we could handle before we all exploded.

To say this was stressful would be an understatement. I am not a fan of kids, and this classroom had kids of all ages (mine was one of the oldest) running amok for 3 days. Lucky for us, there was a small room in the back of the classroom (the old projector room) and it had a door. Score for me. I stuffed my kids in there for the training and let them go rampant on their iPads. Grade A parenting? Probably not, but I give zero shits. I wish I could say that solved all of the annoying kid problems, but that would be a lie.

That is not to say I didn’t feel bad for these kids. The little girl in front of us was less than 3 years old, and she had an insulin pump stuck to her tiny little chubby belly. I felt so bad for her, but laughed when she spilled her moms Perrier… we are all in this together. And the fact that she called it “rotten juice’ just made me snort laugh. She may have her insulin pumping into her from a thing on her hip, but she is still a funny little kid.

We learned a lot, one of the things I learned was that I could run on less than 2 hours of sleep and not murder the snotty bitch sitting in front of me. So, score for me. I also learned that the carpet in there is no longer stain resistant, and that you can smell spilled iced caramel macchiatos for hours after sopping them out of the rank ass carpet. I really think I did that aisle a favor – at least our area was aromatic in a good way.

For months leading up to this, I have been stressed and trying to remain calm; trying to convince myself that I can actually pull this shit off. But for months, all I have wanted was a shoulder to cry on. And while I did get that sometimes, I mostly heard “you are strong. You will be fine”. And while I appreciated the kudos and props, I didn’t believe it. And to me, that more or less just felt like placating so that people didn’t have to hear me talk about diabetes anymore.

I have lost so many people because of this disease. My life is no longer my own, and I lack new things to talk about most days. I am tired. I was up all night. Middle-little’s numbers are rubbish. Bla bla bla. But you know what? That IS my life right now. That is not to say I don’t miss my friends, or my sons functioning pancreas. But alas, not all things last forever…. and with his pancreas, so along went a lot of my friendships. C’est la vie.

LAH VEE!!

I know I can do this. I know I am strong. I know I am capable. I know I am smart. I know that my son is lucky to have me. But some days, I don’t fucking want to anymore. I want to crumble. I want to bawl. I want to have a total hissy fit and throw things. I want to spit at the heavens. I want to sleep through the night. I want to sit down and eat without doing math. I want to fucking fall apart. But I can’t. It hasn’t been allowed of me.

You know that old saying “you don’t know how strong you are until that is your only option” WELL! I fucking knew how strong I was and I didn’t need a lesson or reminder… and yet, here I am!

Some days I feel like it is totally unfair. Not for me, but for my son. He doesn’t deserve this. He doesn’t deserve this future; this mortality hanging over his head for the rest of his life.

But it could be worse.

He has me. I am strong. I am smart. I am tenacious. I don’t give up. I am strong. I am strong. I am strong.

I am also fucking exhausted.

 

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Oh look, another dumb post..


We are sitting smack-dab in the middle of a very important month (to us, anyway).

November is DIABETES AWARENESS MONTH, and while to most that means nothing, to us, it means the world!

Our son was diagnosed on November 9th, 2015. And we were in the hospital, learning how to keep him alive at this time last month, so we didn’t really even know what the month represented. To us, it was just the month that we celebrated our youngest sons birthday, and me and my husbands wedding anniversary. Now, it means so much more.

So, in an attempt to educate, advocate and get the word out about what almost took our boy away from us forever, I’ve been posting things about diabetes every day. And do you know what I have noticed? Really, nobody gives two shits! (except for the people it also directly affects, with the exception of VERY few)

I am sure there are people (family included) who sit behind their screens and scoff every time I make a diabetes post. And do you know what I have to say to them? “I hope something horrible never happens to you or your children.. because this sucks. And on another note, go sit and spin, you self-indulged asshats” And while that may lose me some people, that’s okay. Because at the end of the day, do I need those people in my life? The people who don’t really care that we are trying to teach people about what our life has become? No, I certainly do NOT.

Because while it may be seen as an inconvenience to see yet another diabetes post “clogging” your news feed, I can assure you, what it has done to our life is FAR WORSE and harder to deal with. And I can assure you, the people I am referring to are the ones who clog up their own news feeds with the most insignificant drivel, ridiculous re-posts, bullshit that doesn’t really affect anyone, worldly advice (that they probably don’t incorporate into their lives but want to sound worldly), or posts to flaunt their shit and things. And chances are good I am thinking the same thing about your posts.. “Oh look, another dumb post…”(PSA: this is directed at no one person in particular… just a generalization. So don’t go getting your panties into a knot if you fall into an aforementioned category)

That’s fine. Everyone is entitled to their own life and opinion. And I am not going to sit here and say that I have never posted drivel or inspirational crap, because I have. But I am also trying to bring light and understanding to a disease that was days away from stealing my baby from me, forever.

Until you have watched your own child fading away, begging for help and peace, crying over their tiny wrists and protruding hip bones, losing sleep over what is wrong with them, losing sleep over the possibility of losing them every single night, losing sleep over their insulin dose, why their numbers are so high, what did they eat, knowing every carbohydrate that enters their mouth, forcing water down their throat, crying because this is their fucking life now… until you have lived the hell, you will never get it.

I am going to continue posting about my son, because who knows who it might help. The symptoms masquerade themselves as so many different things. Our son was sick for a long time before his diagnosis, and it was written off as a multitude of different reasons. That’s what it does – it hides in the corner, wearing different masks, and lures your child into the darkness.. and for lots of kids, they never come out of the darkness, and they’re lost forever. Luckily, I am very stubborn and knew better. Lots of parents aren’t so lucky.

So THAT… that is why I am posting every day. Because someone might get to hear their child laugh for another day because of something I said. And that means more to me than likes and comments and activity on my posts.

So you keep posting what you want to, and I’ll keep posting about this. We can both coexist, and that is fine. I just hope, to these people who find more importance in their ridiculous shit on facebook than showing support to an 11 year old who fights a beast every single minute of every day, that nothing ever happens to your family or children. Because it is a different story when that coin is flipped.. and let me tell you, it is awfully lonely on this side of the coin.

People just don’t get it until they get it. And I pray to shit, you never get it.

 

I am back, bitches!

I have taken some time to chill, organize my life, and see how things feel. And what I can say right now is… things feel great! We are happy in our new house – it fits us very well and everyone is loving our new space.

Don’t get me wrong, the move itself was a slice of flaming hell. We had help. We arranged ahead of time for people to come help with the heavy cumbersome shit. I pack the house and clean after it is emptied, so the husband moves the shit. Seems fair. Except this time, help didn’t come. Bunch of hosers just didn’t show up. So who did the brunt of the heavy lifting? That would be us. At one point, my head was pinned between the wall and the couch, and I was not pleased. I know there are other people we could have called, but I have a very good reason for not doing so, which is why I am not bitching too heavily about moving our shit ourselves. Am I selfless? Did I want to give people their time with their families? Did I want to avoid being an inconvenience? NO! I don’t want those people calling us to move their shit. HAHA! Totally selfish, hence only being slightly annoyed.

Moving on…. We are settled and everyone is enjoying their respective spots in school.

Biggest little is thriving in grade 8 and just starting another year of volleyball. He is so good at that game, it is crazy. And it doesn’t hurt that he is very close to being 6 feet tall. Loser. I make him sit down when I give him shit, now. Nobody will take a 5’3″ person seriously when they hover 5-6 inches above them. He is a giant. He has a big heart. But at times I still question every choice I have ever made with him, due to the moron-adolescent big-ass attitude. Just have to remember it happens to the best of us and hope tomorrow is better. But as I remind myself all the time – it could be worse! He truly is a great kid and watching him become this beanpole with a vision for his life is kind of flooring me!

Middle-little (also known as the diabetic) is kicking ass this year. November 9th will be his 1 year diaversary, and he has got such a good grasp of it, our last appointment was mostly just sitting around and bullshitting with his nurses.. they didn’t even want to see his food log. He has grown (physically and emotionally) with this disease and we are blown away every day with how well he has adapted. He is in grade 6 and doing amazeballs with school and with his stupid busted ass pancreas. But he is so much more than just a diabetic kid. He is so funny and silly, and is going to earn a living with his amazing drawing and attention to detail. Just you wait and see….

Little-little!! Aww, here is where the changes are undeniable. My baby started kindergarten this year. Not only is it weird that he isn’t home two days a week, but he comes home and talks about this life that we aren’t a part of, and that has never happened before. It is tearing my heart apart a bit, but he is doing really well, so that helps. He attended his first bday party without us today, which is another change. Sigh… My baby. Seriously freaked out by this new development!

My husband!! Seriously… gush gush gush. I love the ever loving shit out of that man! Him appearing in my life was random, and a total miracle. My heart was obliterated before him, and now it is put back together in the most perfect way. He did a course at work this week, and walked away with a 98% which is amazing for someone who despises school, tests, speaking in front of people, has adhd, etc. And now this man, this amazing human that I get to share my life with, is a certified heavy equipment operator, and is certified to train people to not only run the equipment, but to also train other people to train people. In summation, he is a heavy equipment badass, and I am stupid proud of him! Plus, he is total sex on a stick, so there’s that, too.

Me…. I don’t really have a lot to report (at the moment) but shit is changing. My horizon is beginning to look a lot more pink, and the dark clouds are way behind me now. I have a few tricks up my sleeve… lets just say, what is coming next will be revolutionary in my life.

Like I said…. I’m back, bitches. But the me that is back isn’t the me you knew from before… I put myself back together differently this time.

*mic drop*

Diabetes life – More than needles and blood


Let me preface this with: my son has diabetes. It is new to us, but I am already very well versed in it, and don’t take lightly to BS being said about it. 

Now… 

When my son was diagnosed, other than losing my grandmother, it was the worst day of my life. My little boy, who was so funny and outgoing, and so full of life, would be thrown onto a new path and forced into a life he didn’t want. Heart. Shattered. 

But not only was he thrust into this life, we all were. His parents. His siblings. His friends (and their parents). His grandparents. His aunts and uncles. His teachers. His future girlfriends/wife. His future classmates. His future employers. People he has never met before are already impacted by this. 

Would we change our path if we could? No question about it!! But alas, his pancreas is gonna be a useless piece of shit forever now, so this is where we live. And this is where we deal. 

I keep saying “we”, as this is one hell of a team effort. My husband and I do the brunt of the work, but no one – NO ONE – does as much as our son! I’ll touch on that more in a bit. 

My husband and I are the ones who plan all of his meals, his snacks, his injection points; determine his carb to insulin ratios, how much long-lasting insulin to give; who hound him to drink lots of water; who make sure he gets lots of sleep and exercise; who deal with the random highs and sporadic lows. We are his first line of defense. 

Our other two boys help a lot. They help to put his lunches together, help to organize our pantry (which is a finely tuned machine on its own, with all of the food in it stacked in clear order, with the carb count written on top in sharpie) Our 4 year old hugs our DiaBadAss every time he has needles. And we play a game at mealtimes to see who can guess the closest to his blood sugar. It helps us all learn how he acts at different levels, and it helps him to learn how he feels at different levels. Plus, making it like a game takes some of the blah out of it. 

Here’s a “day in the life of” to show that we may make it look easy, but that is only because I am borderline OCD and am slightly Type A, and we work well together as a team. It doesn’t look easy because it is easy! Do not ever for a second think this is easy. We just deal a lot better than most:

On a regular (school) day, my son wakes up around 7:10, does the normal morning stuff and comes for breakfast. There, instead of sitting down and eating like most people are accustomed, he washes his hands, gets his kits and sits at the table. He then takes a strip out and gets his meter ready. Then he takes his lancing device, and patiently blows a small hole into his sensitive finger tip. He gently squeezes, wipes that drop off, and squeezes out a fresh drop, which he then gently places onto his ready test strip. While waiting for that number to appear, which will dictate the dose of fast-acting insulin he will have at that meal, he wipes his finger clean and gets his insulin pens out. Once the number comes up, we then begin determining the carb count for his breakfast, and using the blood sugar we just learned, and using his carb to insulin ratio for breakfast (and it’s different for all 3 meals in the day – something we had to painstakingly determine through trial and error) we figure out how much NovoRapid he will be taking. He then dials 2 units, shoots it into the lid, then dials in how many units he needs for breakfast (usually 4 units). Then he sticks that tiny needle into his tiny belly, and counts to 10, while the life-preserving smelly as hell insulin shoots into his non-existent fat (he has to pinch skin to create “fat” to inject into). Then once that needle is done, he gets his long-acting insulin ready to go. This one isn’t based on carbs, it’s an insulin he only takes once a day, and it lasts 24 hours (so they say). He primes this the same way, but through trial and error and what seems like a constant change in need, he takes the dose that we have determined is his “basal” need for the day. (It started out as 7 when he was first diagnosed, but over the course of 9 months, it’s increased to 14. That’s not to say it won’t decrease once school starts again, as being at school, he’s more active, but for now, it’s 14). He picks another spot on his poor needle torn belly, and sticks yet another needle into his pinched flesh. And only then, can he begin to eat his breakfast. Then we pack his lunch and snacks for the day, all the while counting his carbs, and writing everything down in his food log (including blood sugar tests and how much of each insulin he takes). Snack time rolls around at school, and he tests, texts me his number, and we determine if he can eat the snack was packed, or needs to replace it with a “free snack”(which we also pack, just in case), which is what he has when he is “out of range”. Lunchtime, and he pulls out everything we have marked as “lunch” in his lunchbox (so he knows what is snack and lunch, as it is exactly calculated), tests his blood get again, texts us the number, and we, recalling the carbs we packed for him and what his ratio is, tell him how many of his NovoRapid to take. Then he goes through the whole ordeal with priming and ramming himself with a needle, this time in the presence of his classmates and friends. The same is repeated for his afternoon snack, as well as his test when he gets home from school. Once dinner comes, we have already calculated his dinner carbs (after usually taking the packaging out of the garbage over and over, because we have forgotten the carbs, because that’s just what diabetes parents do!) and he goes through the whole situation again. 2-3 hours after dinner, he tests again, and if he is out of range/high, he takes correction insulin and grabs a bedtime snack (generally something free – he likes Whisps and cucumbers) and goes to bed.. And that’s when I take over. I test him around 10:30-11:00, and if he has correction insulin, again at 12:00. And every night, I wake up at 3:00 in the morning and check him. So on a typical night, I check him twice when he is sleeping. The nights he has insulin, I check 3-4 times. And the nights he is low and needs juice (which he drinks in his sleep)? I check him 5 times. With lows while sleeping, diabetics run the risk of slipping into a coma, and never waking up. While there is air in my lungs, that will not happen to my son. His life means more to me than 15 minutes of sleep. Then we wake up the next day, and round and round we go again. 

His doctors appointments are in a city 4 hours away. And we go every 3-6 months. (Every 3 right now). We are at the drugstore getting supplies every week and a half (his supplies take up over half of my previous liquor cabinet – how I drink less now, I’ll never know!) The pharmacists know us. The diabetic team know us by our first names (including our non-D kids). We do training with teachers at school, and several of them have our cell phone numbers saved in their phones. Our family and friends have been given crash courses on testing, needles, carb counting, radios, how to inject his glucagon for the emergencies in which he goes into a coma and can not eat his fast acting sugar. 

We have done more math in the last 9 months than I have in years. And you know what? He’s worth every tear, effort, sleepless night and frustration. 

There are a lot of misconceptions about diabetes, and I’ll touch on that another time… But what you need to take from this is: it’s hard. Every damned day is hard. It’s hard for us, but it’s the hardest for our son. Regardless of what we do or how much we put into this, it is only happening to our son. This is his life, we are just helping him learn how to make it be best possible. And I will continue to do so as long as he wants and needs me to. 

Period. 

Diabetic monster..

I read a very sad story tonight about a young and promising college athlete with type 1 diabetes who, like so many other people before him, quietly passed away in his sleep due to a low blood sugar. . It sneaks up, often without warning, those unpredictable nighttime lows. And without warning, if you’re not careful, they can sneak up and steal the most precious things on earth.. it doesn’t take long, and it comes without any noise or alarm. Just poof…….

My heart shattered into so many pieces while reading that story, the pieces could not ever possibly be counted… Because that is my main fear with my son. The highs and lows during the day we can handle; they are completely manageable.. While they are entirely infuriating and sometimes frustrating beyond belief, it is something that we can easily deal with. It’s the lows that sneak up at night.. that is where the terror lies.

After he’s given us his hundred hugs and said his million “I love you’s” and tucked himself into bed, that’s the scary part. Because when so many other children go to bed and peacefully slumber, only afraid of the monsters under their beds and in their dreams, diabetics are constantly in a battle with their own kind of nighttime monsters. And it is the parents of these humans that fight their own variation of these monsters. My son is still too young to fully manage himself; one day, it will be in his hands (I will always remain in the background… whether he likes it or not!) So, for the time being, it is on my shoulders to keep him on this earth, and as healthy as possible, and for as long as possible.

I haven’t slept through the night in months. I get my son to check himself when he goes to bed, then I check him when I go to bed a couple hours later, then I get up every single night at 3 am and check him again. I should be exhausted, I should feel drained beyond measure. But when it comes right down to it, that is my baby’s life there, and I am not willing to sacrifice it for 15 extra minutes of sleep. I jump out of bed and happily/groggily check his tiny little finger, only lit by the hall light, and he sleeps right through it. He sleeps through a sharp object blowing a hole into his delicate finger skin, me squeezing a drop of blood out, wiping it off, and squeezing another, and the incessant beeping of his glucose monitor. Then, once I have his reading, I either tuck him in and slunk back to bed, or rip to the fridge to grab his emergency juice (also known as his big brothers regular juice boxes… ah, the simple life) He even sleeps through me ramming straws into his mouth and forcing him to drink enough juice to bring him out of his lows (of which require me to recheck his finger every 15 minutes until he is back to an acceptable reading.. which means, I have to keep blowing holes and squeezing blood until he is back to a good level)

I’ve read stories of mothers who haven’t slept through the night in 20 years because of their Type 1 children. And that is absolutely going to be me. If there was ever a question before that I was going to be an overbearing mother and one of the ones who are still a constant in their children’s lives when they’re older, I have no doubt in my mind that I’m going to be now. Sorry future girlfriends, after everything I’ve been through with him, you’re just going to have to put up with me!

He is 10. He has a lot of years left ahead of him. And if it means I lose sleep for the foreseeable future, so be it; it means he wakes up every morning. If it means my cell phone bill is more every month, just so he can text me his levels, so be it; it means I know he is safe, and I always get a ton of “i love you” texts, and there’s nothing wrong with that. If my grocery bill goes up so he can have the best possible foods for him, and always be prepared, so be it; it means he has the best shot at being completely healthy and happy.

My son  is a Type 1 Diabetic. But he is so much more than that. He is my son, and I intend on helping him figure out exactly what else he is going to be.
  

Like a well planned game of dominos..

Being sick sucks, you know? Illness, any form, is just a giant asshole third wheel that follows you around and haunts your daily routine, until one day it develops a huge case of jealousy and demands that it becomes your significant other. WELL! Let me tell you, it is not significant nor is it welcome! Then the illness is all “me me me! Focus on me!” and your life becomes focused around fevers and chills, monster headaches and sore muscles, and spending more time inspecting the interior of your toilet bowl than a cleaning lady ever has or will.

You get my point. Being sick sucks. I wouldn’t say I am necessarily sick right now, but I can feel the selfish asshole third wheel just following me around, waiting for a crack in my armor so it can sneak in and engulf my very existence. It is like a well planned game of dominoes. At the moment, I have my dominoes all nicely lined up, and falling in a very specific and beautiful manner. But my third wheel is hell-bent on knocking them down out of order and creating chaos in my world. Well, that is just rude! Do you have any idea how time consuming it is to line those bastard dominoes up!?

At the moment (well, the last few days worth of moments) I have felt “off”. You know the feeling, nothing is particularly wrong, but at the same time, you just feel like something is about to be wrong. I have been weak and a bit dizzy, my head hasn’t been hurting, but it doesn’t feel right, my eyes feel like they are moving a bit slower than normal, my reaction time is off, and I feel just completely worn out.

My son (the cream center in my children oreo, also known as the diabetic one) has been sick all week, and sickness creates all sorts of hell and havoc for diabetics. Their blood sugar is basically an acutely orchestrated dance on a high wire, and even the slightest breeze can knock that bitch over. Well, any type of sickness basically acts like a fucking monsoon, and it throws the whole dance off. Way off. Sugar is released by their liver to help the body to give itself energy to combat any sickness. And then they are more prone to dehydration, because their body is fighting, and there is an excess of sugar in them because of their overprotective liver (stupid douchebag liver screws everything up) And if they tip into dehydration, their kidneys secrete even more sugar. It is a frigging crapshoot, and it screws him all up.

He has been fighting this sinus thing for a week. Beauty part? He had no sinus symptoms at first, so we had no effing idea what the hell was wrong with his numbers. One day perfect, next day total shit! Glorious. And not the least bit frustrating! NO! I didn’t shed one single tear out of pure unadulterated frustration and exacerbation. Not one. (that is a lie, I had a meltdown. shut it…) But we got a handle on it, and I showed that sinus issue who is boss. Don’t mess with me! I have western medicine on my side! BWAHAHA! (I may be slightly off my rocker, due to the level of exhaustion I am currently rocking, and the fact that I don’t feel very good…) So while he was sick, the insulin floweth like a river. Needles, needles and more needles. Best part of diabetics getting sick? Other than the aforementioned hell on earth? Insulin resistance! WOOO! Turns out, when they are sick (or the wind blows a certain way, it seems…) their bodies develop a slight resistance to insulin, which makes it even more difficult to lower their already sky-high blood sugar. Oh the joys this disease has brought us all (for real though, we are doing amazingly well, considering how effing new this is to all of us) So while I was cranking my middle-little full of that foul smelling shit, I was then forced (gladly) into checking his level even more than normal, for fear that his resistance may have lowered it’s shield and may have driven him into a horrendous low. So, up almost every single hour during the night, testing his blood, listening to his breathing, making sure he was still breathing, nudging him to make sure he was okay.. sleepless nights are something that all mothers are familiar with, but when you have the added terror of your diabetic child sliding into a low in his sleep, then into a coma, and never waking up… yeah, your ass is out of bed like your sheets are on fire.

So while I was taking care of him, I may have slightly ignored myself. Not fully. I still remembered to exercise and shower, but I am seriously lacking sleep, and may have forgotten to eat every now and then (not may have, I absolutely did). All of this probably added up to enough to get my immune system lowered enough for that asshole third wheel to rock his asshole way in, and knock my dominoes over. Like an asshole. I may not be full-blown sick yet, but I can feel that one domino just weebling there, like a fucking weeble-wobble.. and it could go either way. My sweet and selfless husband has let me sleep until 9:00 all weekend, in an attempt to help me “sleep it off” which is helping a bit. But he is in the middle of 2 weeks worth of 13 hour night shifts, and has been sleeping all day, and gone all night, so even with the extra hour of sleep in the morning, I am still exhausted, because I am left alone to take care of all 3 boys. I don’t mind, they’re not horrible. But it is still tiring to do when you don’t feel good, and one of them requires so much extra attention, and one of them is four. The oldest is okay, but he is almost 13 and is swimming in a sea of extra testosterone and attitude, which is a whole new adventure for us.

Either way, being sick sucks. It sucks for me, it sucks for my oreo.. it just plain sucks. Just leave my dominoes alone, k? It has taken me a long time to line them up, and I am not too keen on anything making a mess of them. dominoes-game-graphic-3d-wallpaper-colorful

Not all sunshine and rainbows..

The last few days have been trying. That’s not to say that the previous days were particularly easy, but we were handling it.

Slight catch up. My middle son got diabetes in November. And it has not been all sunshine and rainbows since then. I am beyond grateful that we caught it when we did, but a part of me will always grieve for the piece of my son that was lost on that day. He is such a beautiful boy, with an amazing heart and a promising future. He is so full of life and humor and love. And no matter what we do now, and how hard we try, there will always be a part of him that was taken away that day. I will fight until my dying breath to make sure that my baby is happy and taken care of, and always do my best to remind him of his inner light.

But like I said, the last few days have been hard on him. There is so much about this stupid asshole disease that is literally left up to trial and error. There is so much guessing and testing and trying. So much of it resides in the grey. It is not as cut and dry as most diseases, and that makes it SO FUCKING INFURIATING!

Why? Why are his normally stable numbers all of a sudden creeping up? From a steady 6-8 to an 11, then 14, then 15, and then from there, there was no going back. We battled. We rallied. We racked our brains as to how to fix it, why it was happening, what could have caused it… We threw out his insulin and gave him a new cartridge, we revamped our meal plan, I went through 2 months worth of numbers and food logs and checked for any patterns, we made him sleep more, drink more water, have more protein, increased the insulin to carb ratio, increased his lantus dose… I did everything that any professional would do in my position.. and then I hit my breaking point.

I caved and called the Health Link. In my province, it is a call center run by nurses who listen to symptoms and help you decide if you need the doctor or emerg or maybe some allergy pills. More often than not (I would say 98% of the time) they send you to the doctor anyway, but I still call. I will not be doing that again! While it is useful for some things, they are not allowed to do shit about kids with diabetes. I told her “I have everything sorted, I just have one question” and I asked it, and all she did was reprimand me on his numbers and told me to call his nurse. THANKS TIPS!! After completely exacerbating myself with that very nice, albeit completely useless, woman, my sons diabetic nurse finally called me back.

Our regular nurse is no longer at the health unit, so we have a new lady that I have yet to meet. She seemed very nice, but upon telling her my story, my frustration overfloweth, and I had a little breakdown while on the phone with her. We talked for an hour, she reassured me that I was doing everything right, and that I was a good mom and he was lucky to have me… but I can not begin to tell you how broken I felt. While she did make me feel a bit better, and we did hash a few things out and get some ideas going between the two of us, I still feel like I am failing my son because I can’t fix him!

Why is he high? These are the reasons we came up with….

  • he was left high all weekend and his body built up a resistance to insulin (yes, that bullshit is legit)
  • he is going through a growth spurt
  • he didn’t sleep enough and his body is feeling insulin resistant
  • he is fighting some sort of infection or illness
  • he is dehydrated
  • he is stressed out about something
  • he isn’t rotating his injection spots enough and his tummy is building up an insulin resistance
  • his insulin was somehow exposed to extreme temperatures and it’s garbage
  • his carb ratio needs to be adjusted
  • he needs more of his all-day-long insulin
  • his “honeymoon” phase is over
  • who. fucking. knows.

There are literally so many reasons why diabetics sugar levels go all psycho, but all I know, is that his did. I do know a few of those things are true, and I busted my ass for him to rectify that which was done wrong for him (no fault of my own).

I am his person. I fight for him, so he doesn’t have to. I fight and bust my ass and lose sleep and feel insane, so he can have a semblance of a childhood. But we still had to get to the root cause of his stupid high numbers.

He has had a runny nose, but hasn’t complained once. Not once! So after he texted me his lunchtime number today, I decided to pull the mommy card and yank him out of school, so I could have him home for a big chunk of time, and focus on him and getting him better. Being excited can raise blood sugar, and with him already higher than I would like, I figured being at school would just perpetuate it. So, he came home! And on the way home, he was really sniffly. It hit me! “is there any sort of pressure or pain in this part of your nose?” And he said yes. BAM. I had my answer (well, part of it.) It is now believed that after his numbers were left high for a whole weekend, his body was stressed enough to allow him to get sick again. I gave him a sudafed (pharmacist approved) and had him drink a liter and a half of water, gave him his correction insulin… and for the first time in 4 days, I got him below 10!! I almost cried. He almost cried. And I kept it down all day. It was one of those moments where you just feel totally relieved.. and yet, stressed at the same time.

This is his life now! This is what we have to look forward to forever. Any time he is sick, or stressed, or excited, or sleep deprived, going through puberty, doesn’t drink enough water, his body decides to be an asshole, etc etc… I feel so sorry for him.

This whole disease is a crock of shit. I am just hoping and praying that there are some amazing advances in the field in his lifetime, so he can maybe have a bit of an easier time.

But for now, know this. Diabetes sucks ass. It is a crock of shit. My heart shatters when I think of what my funny happy baby has to go through now. But I will be by his side, doing what I can, for as long as I can. And maybe even longer.. haha, I am pretty stubborn, I’m not sure I will ever allow anyone to tell me I am not needed. Oh yes, I believe I may be one of “those” mothers… bwahahaha!!

 

 

 

Almost a new year..

  

Well, it happened. Another year has come and gone. 2015 started out like a lamb and bombarded through us like a starving lion on the hunt for bloody carcass. It was pleasant in some points, but for the most part, it was trying in every way, shape and form. But I have this to announce: WE MADE IT! I am quite proud of my little family and everything we were able to accomplish this year! It wasn’t easy, but we all landed on our feet and I think we are better and stronger because of it.

A few curveballs were thrown at us. But like I always say, when life throws your curve balls, get a bigger bat. And if that doesn’t work, use it to hit the pitcher! And that’s exactly what we did. We beat the shit out of the pitcher, and we are all doing just fine with our new rolls as bat-swinging-bad-asses.

You know how they say that you never know how strong you are until that is the only option you have? I believe that to be true, to an extent. I always knew I was strong (I have lived through my fair share of shitstorms and difficulties, and came out on top every time.. bruised and battered maybe, but still on top) Well, this year, my family was tested, and hot-damn, are we ever a bunch of strong people! SO PROUD!

We had a very exciting, and sometimes stressful, 12 months. But we handled it like champs. The most challenging thing that we had thrown at us was our 10 year old was slammed with diabetes. It was not expected, came out of left field and took us all by surprise. BUT! My little unit has pulled together, became stronger, and are now a bunch of carb counting, needle giving, blood sugar measuring, snack organizing, 3am alarm setting, crazy people!!! And I am so proud of how we all pulled together, and so proud of how we are all supporting not just our middle-little, but eachother. I have watched my 3 boys get closer than ever this year, watched my husband become even more of an amazing father, and figured out how bad-ass and strong-as-hell I can be. It is humbling and awesome!

I am excited to see what we can do next year. I do know that whatever is thrown at us, we are gonna rock it!

Bring it on, 2016!!!!!!

An update on the madness…

I have been MIA from posting lately, and it can be summed up in one sentence: A mom’s work is never done. HA! How true is that phrase!

I was just trucking along, thinking “I got this shit”. I was juggling my husbands work schedule (with him only working Friday-Sunday nights, you would think it would be simple. But nay nay – he works a ton of overtime, and never says no when someone asks him to cover their shifts.. it is a blessing and a curse), handling my sons insane volleyball schedule, had things sorted for my 10 year old to start soccer, figured out our schedule for the older boys to start parkour in the new year, helping to plan and organize fundraising for the two older boys trip to Quebec City in April, and was planning my 4 year olds birthday party. Oh ya, and my job and volunteering, as well! The life of a mother is rarely dull.

One weekend, the weekend of my baby’s 4th birthday, actually, we spent at the boys school for our oldests volleball tournament. Me and the three boys were at the school until 9:30 at night, handing out food and treats in the concession, in between the games. My 10 year old had just had his immunizations on Friday, and wasn’t feeling so shit hot. I remember standing in my room on Friday night, after I had tucked everyone in, and called my husband in a puddle of tears “something is wrong with Jesse.. I just know it. I can’t handle him being sick. He can’t be sick” And he assured me nothing was wrong, and he was probably just sick from his shots. I calmed down enough to get some sleep that night.

Saturday came, and he told me he had thrown up. I asked why, and he said (with a sly grin) “maybe cuz I ate 4 bags of chips last night?” and I laughed and told him he was probably right! And then off we went to another day of volleyball, expecting to be done around 1 or 2. It was my baby’s birthday!! And we had a whole day of stuff planned. Sufficed to say, we did not get to make it to most of our plans. We did, however, get a few hours to run off and take him to get balloons and to go to the toy store (where he met Darth Vader!) The toy store had this random Star Wars spaceship building competition that day, and I remember watching my little baby and my middle baby standing there and building spaceships.. and something caught in my throat. I started crying while watching my middle-little – I knew something was wrong. Call it mothers intuition, call it whatever you want. But tears filled my eyes as I watched him build his little spaceship and proudly show me. He seemed so weak, but he had told me he hadn’t slept well, so I assumed that was why (or I was trying to convince myself that was why)

We spent the remainder of the day at the school, where our oldest and his team came in 4th place! We then hauled ass home, quickly gave our little dude his bday present and snarfed a couple of cupcakes (which our middle -little avoided, for probably the first time in his life – another fact that filled my eyes with tears.. but in my mind, wrote it off as his belly ache from throwing up… maybe he was getting the flu.. yeah, that had to be it!) We then loaded up and went to see the new Peanuts movie for our little dudes bday. I calmed a bit watching our middle pound back his popcorn and iced tea.. maybe he is okay. 24 hour bug maybe? Then home to bed.

Sunday was very uneventful. Playing with new toys and running around the house, as with any other Sunday. Middle started getting kind of blah in the afternoon, and spent the evening on the couch watching tv and eating bananas (another sign I should have paid attention to)

Monday morning was middles doctor appointment. I had booked it almost a month earlier (it takes FOREVER to get into the doctor where I live) and he laughed that morning and said “I threw up again last night. Probably the popcorn. Good thing I have a doctor appointment today” We took our oldest to school and headed off to the doctor. During the drive, middle deteriorated. He wailed in agony that his stomach was in knots and his legs were shaking involuntarily. I figured he had some sort of reaction to his shots, or had the flu, and quickly got him to the doctor. By the time we hit the office, he couldn’t stand. So I scooped him up in my arms and carried him, slightly taken aback at how light he felt. Again, tears. I knew in my gut that something was wrong. But I kept trying to tell myself that he was okay (I have a tendency to be overly pessimistic, and was trying to not be) They had him pee in a cup (quite the feat considering he couldn’t stand at this point) and took us to the exam room, where he promptly collapsed onto the exam bed. Trying to fight back tears, I stared at my poor 10 year old baby laying there, all sick looking and in pain. The doctor came in and said the words I had been dreading for days “there was glucose in his urine” and that is all it took… tears started running. My son heard and saw my reaction and started crying. They did a finger prick and it popped up on the screen…. I was praying I saw the number wrong… no way he can be 22.9! I collapsed on top of him, sobbing and apologizing over and over… he kept asking why, and I couldn’t make words come out. The doctor then quickly got to work, calling the emergency room to get them prepared for us to get there. My son, my baby, my sweet little comedian… diabetes. Not the flu. Not a uti. Not a reaction to his immunization. Diabetes.

I cried the whole way to the hospital, my eyes covered by my sunglasses (the crying shield of most moms!) and pulled up to the emergency room, knowing full well what was about to happen. See, right after I got married when I was 22, my first husband got type 1 diabetes. Same kind of thing as my son – peeing and flu-like symptoms. His doctor checked him and sent him immediately to emergency. I already knew the drill. I had already been through it once in my life. Already experienced the super high finger test, already been told to go straight to emergency, already been told to tell the admitting nurse a certain glucose number, already been through the week of testing and IV’s and blood work and dieticians and nurses and doctors. Already been through the world shift and carb counting crash courses. I stood outside the emergency room, tears brimming my eyes, as my 10 year old crunched over on the ground in excruciating pain. I kissed the back of his head, and scooped him up in my arms again, and carried him across the threshold of the emergency room, fully knowing that my life was about to turn inside out. I stood there as they checked him in, being judged and reprimanded by several nurses “how could you let his glucose get so high? you should have brought him in long ago. do you have any idea how sick he is? why did you wait so long?” on and on… I had to repeatedly explain that he was not a diabetic, but I feared he was about to be diagnosed as one. The judgement broke my heart. They all looked at me like I was a horrible mother… I can’t even begin to explain how many pieces my heart had shattered into by that point. He was finally put into a room and painfully hooked up to an IV to get him hydrated. He was so dehydrated at that point, it took so many tries to get his IV in… I had to walk away.. his screams still haunt me. My husband and I stood there, with our 4 year old in tow, in absolute disbelief at what was happening. We had assumed we would go to the doctor, get some antibiotics, take our boy home to rest, and spend the day together.

What I haven’t mentioned, that day was also our 2nd wedding anniversary. Not exactly how I expected to spend the day. Instead of being all lovey and snuggly with my husband, I was phoning people to arrange pick up of our oldest from school, finding someone to watch our 4 year old so my husband could go home to nap (he hadn’t slept from his night shift the night before), calling work to take the week off because I had to spend the week in the hospital with my son, trying to figure out who was going to be at home with the boys while my husband worked his night shift on Wednesday, and trying to keep myself from exploding into a giant mess on the floor. Luckily, my sister and her husband took our little guy and offered to get our oldest from school that night and keep them until after supper. Then my sister came to sit with me while my husband went home to nap. I can’t even begin to articulate how close I felt to having a complete breakdown that day. But I am amazed to report, I did not. And I still have not. I fear that one day it will sneak up on me and I will go lose my shit for a bit, but as of now, my shit is completely accounted for.

My son went upstairs to Peds, which would become our home for the next 8 days. I will summate a bit – my middle is afraid of needles, and had to have his blood checked every 4 hours for 2 days. His arm was hamburger. A few of the lab techs were great, however, there were two that I am certain could give lessons on human torture. There were some amazeballs nurses on that floor, a few of which took extra time to sit and talk to me. I am sure I looked like a complete wreck, so I appreciate the few who sat and talked to me, keeping me from going insane. And there wasn’t a single nurse on the peds floor who didn’t take the time to assure me that this was NOT my fault, or an oversight on my part. That it was just a fluke and it was amazing that I caught it when I did. That it was amazing that I made the appointment when I did, as he had no symptoms at that point. That I did everything right. That it wasn’t my fault. That I wasn’t a bad mom. That he had been mildly sick for a few months, but it was his immunizations that set off the “storm” that was his breaking point, and had he not got shots, he would have continued to be sick without anyone knowing it. That it was going to happen to him eventually, and there was nothing I could have done to prevent it. That in spite of what was happening, I was a good mom and he was lucky to have me. It was said by nurses, diabetic nurses, doctors… so I believe what they all say is true, and I have to learn to forgive myself.

I have nothing but good to say about the Peds nurses, our diabetic nurse, our dietician and one of our doctors. The other doctor was an absolute asshat. At one point, there was a confrontation in which he rushed me (like, across the room stomping and stood in my face in a threatening manor) and started barking shit at me. But instead of being a pushover and caving, I stood up for myself and didn’t back down. I am not sure if I did the right thing, but no one is going to stand there and tell me what is best for my son or our life, unless it is me. I had 4 nurses standing in the room as witnesses, all of which stayed after he left to apologize, then I had the unit manager come and apologize to me (because the nurses had all filed complaints against the doctor for how he treated me and spoke to me). I appreciated that. It is not every day that you stand up for yourself and then actually get backed by 5 people. The next day, the doctor himself came in and apologized for his behavior, which was unexpected. But he did it in a way that made it seem like he was apologizing, but still insisted that he was right. So it did not come across as genuine, but nonetheless, I managed to keep my head on, and kept from freaking out. I was kind of proud of myself. I am not a fan of confrontation, and this is one of the worst I’ve dealt with. But I know my son, I know my life, and I will do whatever it takes to protect that. And I did. Don’t poke the momma bear..

We finally got to go home and start our life. Carb counting and glucose testing and insulin dosing, and spending more time at Shoppers Drug Mart than I have ever in my entire life. Middle dude spent a few days at home, organizing his life and sorting out his new routine. 2 days after going home, I went back to work, and my husband texted me a video at 7:30 in the morning “look!” and it was of our middle giving himself his own needles!! That was a HUGE step in his treatment. Up until 4 days before that, he was still screaming and thrashing when he got his insulin. I can’t even tell you how night & day this was, and how proud I felt (I honestly burst into tears at work when I saw the video) And 2 days after that, he decided it was time to go back to school. We had a big meeting with his teacher and teachers assistant, and taught them everything and how to treat his highs and lows. And off he went, back into the arms of his adoring friends and classmates. He’s like a rockstar now. People mill around him when he does his testing and dosing. He loves the attention.

Since we came home, we have had 6 or 8 appointments. It has literally consumed our lives. But we adjusted so quickly and so seamlessly, it has changed everything, and yet nothing has changed. My husband, who has never had any experience with diabetes before this, has slid into the roll so easily, he didn’t even give it a second thought. He stands in the kitchen at meal times, and crunches numbers in his head, and has had no issues at all. He even came up with a time saving system that has helped tremendously! He took a sharpie and wrote the carb count on the top of all of the snacks. So his applesauces all have either 12g or 13g on the lid. Fruit cups are all 6g, 7g or 9g. His arrowroot cookie package says 5g/cookie. Our cereal containers have printed labels on top for the different cereals we have inside. Cheerios 17g/1cup MG cheerios 21g/1cup etc etc. It has made packing lunches and whatnot so much easier.

Our life has turned upside down and inside out. I haven’t slept through the night since the 8th of November. I still have to get up at 3:00am to check him. His carb/insulin ratio has changed 5 times since he was discharged. His 24hr insulin dosing has changed 3 times. He has had more lows than I care to admit. We have gone through more packets of rockets than I have ever bought in my life. We have done more math in the last month than I have done since school. I have used the term “carb” more in the last month than in my entire life. I have more numbers in my head than ever before. We have had more contact with their school than ever before.

BUT! My son has gained 6 pounds. His face has color in it again. His eyes aren’t sunken in anymore. He sleeps through the night now (even with me checking him at 3am). His legs don’t hurt anymore. He is happy and healthy and living a normal life. His needles and testing sucks, but I have my son back. I will cry forever whenever I think about that week (as I have done throughout this entire post construction) but of everything that could have been wrong with my baby, I am glad that it is so controllable, and that he can continue to live his life and do his thing. He just comes with a few extra holes and a couple extra accessories now.

But he is still my baby. I look at him and worry about everything that can now go wrong with him, but I also see a boy who has taken the bull by the horns and know that he has a good head on his shoulders and can handle anything. He is my little hero, and this whole ordeal has just brought us all closer and proved that we are capable of anything. My husband and my sons are amazing. And I have to accept that I am not so bad, myself.

Lesson: life is crazy and unpredictable! Love it for what it is.