1. Diabetes is always on my mind, yet is it never on my mind.

Huh?

Let me explain.

When you and I are having a conversation about the new salad restaurant that opened in our town, I am listening. I am following along, thinking about what kind of salad I would get if we decided to go to lunch one day…and then I hear an ambulance…As I live only 2 blocks to school my thoughts immediately jump to figuring out where the siren is going (towards the school?) and if my son could have dropped so low that they were forced to give glucagon and call 911. So, yeah, I was in the salad restaurant conversation, but in a heart beat I am out of it.

2. Diabetes is the absolute last thing when I think about my son, yet it’s the first.

Huh?

Let me explain.

When I see my son, I see a gorgeous, intelligent, funny, lanky, bike riding 8 year old. I see a kid that makes me smile and cringe at least 100 times a day. I see a great big brother and an annoying big brother. I see a kid that loves his waffles with chocolate chips for breakfast.

Then I see diabetes. When I see a bike riding 8 year old riding a bit too slow, I wonder if he is going low. When I see an annoying big brother just getting a bit too much, I wonder if he is going high. When I see a kid that loves waffles turn his nose up at them, I wonder if he has ketones that are making his belly hurt.

3. Diabetes is the first thing that pops in my mind, but the last thing I would ever say.

Huh?

Let me explain.

My son is a dreamer. He is brilliant. He has all these plans for when he gets older that he is going to fly out into Space as well as explore the deepest depths of the oceans. He talks about climbing mountains and backpacking across Europe. He wants to travel across the US in an RV for one summer (ok, that’s my idea too).

When he talks about these things with immense excitement I think about his diabetes care, where he will get insulin while backpacking. I wonder how he will keep his insulin cold while travelling to Space. I am concerned what will he do if he goes low while scuba diving in Belize.

When he talks about these things I say it will be awesome, honey. I say that sounds exciting, I can’t wait for you to do it. I say you are going to have an awesome time.

Diabetes is here and it’s here to stay. I do my best to keep it out of my thoughts, my mind and my spoken word. We know it’s here, we know we have to deal with it, but we don’t have to give it center stage.

Some days I could do every single thing better. Some days there is not one thing I could have improved, it was that kind of lucky day you get once and while. Diabetes is tricky like that. One day you are on top of the world how you kicked D’s butt that whole day, and then the very next day you feel down in the dumps because no matter what you do, it isn’t right.

I did ask my son before he left for school this morning, “What is the one thing mama could do better when it comes to caring for diabetes?” He said, “What do you mean?” I explained the blog ‘contest’ to him and said I have to write about something that I could do better when it comes to diabetes, like testing you better, or something. He though for a minute and then he replied, “Nothing.” While I don’t believe him, I do know my heart swelled 10X it’s size after hearing that.

My son was diagnosed 5 years ago. From day 1 I was on my own. I faxed my numbers for 2 weeks straight and no one responded. Yes, when I would get them on the phone after waiting 3 days for them to call back then I had to fax a whole set of numbers, and then again, no response. It went on like this until I found www.type1parents.org where they became my sounding board. Everything I learned about diabetes I learned from Think Like A Pancreas by Gary Scheiner and Type 1 Parents. I would read about something in Think Like A Pancreas then bounce it off the members of T1P and then I would gather all that together and use it in my own decision making process for my son’s care.

Fast forward to 4 endo appointments a year for 4 years, so for 16 endo appointments my endo gave me advice regarding my son’s care that would have literally killed him. Taking basals that were .8 and asking for me to make them .4 even though the numbers looked awesome, just because .8 seemed to much for a 4 year old. He had never heard of that so therefore it must be wrong. 16 endo appointments came and went and NOT ONCE did I stick with the changes that the endo made on my son’s pump. NOT ONCE did I leave there feeling confident the changes were going to work. Therein lies my problem, the one thing I’d like to improve, I do not accept advice on numbers very well.

Up until a year ago I had no reason to trust my endo to help me make the right changes. Even his own CDE would say to me, “You’re not going to make those changes, are you?” Clearly showing her exasperation with the nonsense the endo was feeding me.

Now that we have a new endo, I am slowly learning to accept the few changes that he asks to make on my son’s pump. Of course I have to agree to them, and we discuss any concerns that I have, but it has taken me almost 5 years to accept that some changes made by an endo are good and helpful and should be at least attempted.

It’s a good thing to work towards, a good thing to improve, every one deserves a second set of eyes when checking over numbers. Hopefully after 5 years I finally have someone that can help me grow in this area. Help me help my son.

My son checks his sugar at the appropriate times. My son counts his carbs (or has us count them) before he eats anything. My son breezes through POD changes every 3 days. My son carries his diabetes bag every where around school without complaints. My son rocks when it comes to his diabetes care.

But THE one great thing that my son does is take it all in stride.

While this may not seem like that is a one great thing that someone can do. Let me tell you, taking diabetes in stride is amazing for anyone, never mind an almost 9 year old that is going on 5 years with this disease.

Diabetes is messy. Diabetes is annoying, intrusive, disrespectful and a bully. Diabetes doesn’t know when to shut up and just sit down. Diabetes doesn’t take a vacation. It is on duty 24 hours a day. Even Christmas. I mean for God’s sake even the Shoprite closes for Christmas, at least for a few hours. Nope, not diabetes.

Diabetes follows him to school. Annoys him in the shower. Insists on coming to the beach. Diabetes plays soccer, football, Frisbee and video games. Diabetes just…ugh.

Oh, diabetes also takes State Standardized testing. My son took our State’s testing last week. Diabetes was making sure my son remembered that it was with him all the way. Kind of like a cheerleader offering support, NOT.

Day One of testing my son’s blood glucose went from 119 to 53 to 60 to 358 where he stuck for a few hours. Over the course of the testing day, about 9:30 am to about 12:15 pm my son had to test his sugar over 5 times. His teachers were concerned with the low and then the high. Concerned enough that they had him test well above our normal testing schedule of 2 times per day at school.

This is how the conversation went when he got home from school that day.

Me: Hey Buddy.

Him: Hi Mama.

Me: Hey Buddy. Sorry about today and all. All that nonsense with your numbers.

Him: It’s okay Mama.

And. That’s. It.

IT’S OKAY MAMA!

He had to prick his own finger, make himself bleed 5 times over the course of 3 hours and all he wants to say is, “It’s okay, Mama.”

He had to endure the shaky feeling he gets when his blood glucose dips, and apparently he had to endure it for quite some time because his number was not coming up on subsequent checks. He had to then feel the awful sensations that come along with his blood glucose shooting to high, the confusion, the thirst, the extra trips to the bathroom. And what does he say about it all, “That’s okay, Mama.”

No screaming. No crying. No anger. No resentment. No bottled up feelings. No nothing.

My son teaches me a lesson everyday when it comes to how he handles his diabetes. He is my hero. He is my heart and soul and the person I admire most in this world.

And he’s right, you know, it is okay, mama. It is okay.

Two years ago I had an idea for a week when diabetes bloggers could unite and give our views on a set topic each day.  I wasn’t sure if anyone would be interested in joining Diabetes Blog Week but the response was overwhelming and the whole week turned out more awesome than I ever could have imagined!!  Many asked if this would become an annual thing, so last year we did it all again.  Even more bloggers participated the second time around and it was another great week.

This is my first time participating in Diabetes Blog Week. I am not usually a joiner, meaning I don’t jump in and join new things right away. I usually sit back, take it all in, and then decide with what, if anything, I am going to do about the new information.

The first topic is Find a Friend. The idea is to write a blog about other blogs that we read about diabetes.

As I hang my head in shame, I am embarrassed to tell you, I do not read many other blogs on a regular basis. I have my diabetes home, which is www.type1parents.org, and that is where I live, but that is not a blog. I reside in this website and gain insight into this annoying disease through the experiences of others in my family over there. I know it seems odd to write about a website using the words home, reside and live, but that is how I feel over there.

It is a safe place for me to fall when diabetes breaks my heart. It is a funny place for me to share when diabetes is the butt of a joke. It is the cheering section of my life when we get one-up on diabetes. It is the warmest place for me to spend my cold nights when I am up checking sugars until the sun rises. It is the place where I know people have my back when diabetes tries to be a big stupid bully. It is my home.

Through the wonders of facebook though, I have been lucky enough to learn about one mom’s blog, http://www.d-mom.com/ D-mom Blog The Sweet Life with a Diabetic Child. While the author may not know me or my blog, I have reached out to her in the past via her blog and email regarding some diabetes questions. Like I said before I am not a joiner, I have my few people that I trust regarding diabetes, and that is usually it. But when I felt like I needed a bit more then my group, I sought out some help. I received that help from this blogger, and for that I will be forever grateful.

The second blogger that I thankfully encountered through facebook is http://thisiscaleb.wordpress.com/. Not only do I read this blog, but I find the author to be well versed on many diabetes topics, who presents herself in a well thought out, well articulated manner, that I truly appreciate and listen to the words she chooses to use.

While I know there are many fantastic blog out there about diabetes, these are the two that I gravitate towards. I look forward to being part of Find a Friend in the Diabetes Blog Week 2012 because I know many more wonderful blogs will be highlighted and along with my readers, I will learn about them as well.

Tomorrow’s topic is One Great Thing…where I get to talk about One Great Thing my son does when it comes to his diabetes. The hardest part is going to be thinking of just one. My son rocks. Stay tuned…

A baby.

He is now in the 3rd grade, turning 9 in June. July 25, 2012 will be 5 years for us. This is a pivotal year for us. As of July 25, 2012 he will have diabetes longer then he has been on this Earth…(I see another post coming out of this)…

School just called and asked if my son has another diagnosis date for his Type 1 diabetes because the one they have for his 504 plan has expired. I politely explained to the ‘power that be’ that with Type 1 diabetes there is only one diagnosis date and unfortunately there is no cure so there is no way our diagnosis can expire.  The one date remains the only date of diagnosis.

‘Power that be’ proceeds to tell me that in order for the 504 plan to be carried through to next year, we have to provide a new diagnosis date every two years.

I will not provide a second diagnosis date.

It has taken me five years to come to terms with the fact that my son’s life drastically and forever changed on July 25, 2007. My son has endured over 18,000 finger pokes over the course of those five years. Each one of them a tiny badge of honor that he is a true hero in fighting this disease day in and day out. Not to mention the thousands upon thousands of carbs we have counted, the thousands of units of insulin we have used, the thousands of shots to give that insulin and the hundreds of site changes to change his pump site, no I will not change our diagnosis date to fill in paperwork.

Perhaps the paperwork should be changed for my son. Perhaps instead of a diagnosis date there should be a ‘living with’ date. This child -insert name- has been kicking the crap out of Type 1 diabetes since he was diagnosed -insert date- and will continue to do so until there is a cure…this seems like a perfect sentence to put in a 504.

Agree?

So I told the ‘power that be’ just that. No, I will not change my son’s diagnosis date for the benefit of some bureaucratic paperwork. I told her maybe the paper work should be changed to acknowledge that there is indeed only one diagnosis date with Type 1 diabetes, it never goes away, no matter how many stars we wish upon. She was stumped. I’m sure it wasn’t the first time.

I agreed to send a letter stating that my son does indeed still have Type 1 diabetes but by no means will I change his diagnosis date.

You can’t change the date of Pearl Harbor. The day that shook the US Military.

You can’t change the date of Sept. 11, 2001. The day that crushed America.

You can’t change the date of my son’s diagnosis. The day that broke my heart.

Let me break it down for those of you that have no experience with being a caregiver for a child with Type 1 diabetes.

Every night I check my son two hours after his snack, which usually ends up around 9:30 pm. That number requires a decision: treat with insulin, give sugar, or leave alone. Treat with insulin and leave alone have me checking again at 10:30 pm. Give sugar has me checking again at 9:45 pm, 10:00pm and then again at 10:30 pm.

The 10:30 pm check also requires a decision of some sort: treat with insulin, give sugar or leave alone. You would think that the previous numbers would have some impact on what the 10:30 pm would be, but that would be too easy. If I am lucky enough to see two ‘do nothing’ numbers in a row I can go to bed. If I see either a ‘treat with insulin’ or a ‘give sugar’ number at this point then I follow the same sequence as above both scenarios ending with a testing time of 11:30 pm.

My goal is two ‘do nothing’ numbers in a row at the hour test.

This goes on and on and on.

And on.

If I see two ‘do nothing’ numbers as my only numbers of the night I am usually good to sleep until about 5:00 am when my own internal alarm clock wakes me up wondering if my son is ok.

If I see any other number, ‘treat with insulin’ or ‘give sugar’ I must set my alarm about 2 to 3 hours after the last check to make sure that we didn’t see another dip or rise in glucose. Sometimes highs and lows are stubborn and even though they may be gone for a bit, they do appear again.

Highs that go unnoticed while sleeping can cause DKA. Lows that go unnoticed while sleeping can cause seizures or death.

Picture this in your own life. You had the greatest day at the beach with your two little ones. Everyone was happy. Everyone was safe. Tan. The smell of salt water still on their skin. You all shower. Snuggle into watch a movie knowing that everyone will drift off to a well deserved full night’s sleep. Except one of your little ones has diabetes and his blood sugar happens to be 39 ( a low low as we call it). You can scratch that well deserved sleep goodbye. Come hell or high water you cannot fall asleep. It could mean life or death for your little one.

The phrase, “Not on my watch,” takes on a whole new meaning when it’s a piece of your heart, your reason for living for whom you are keeping watch.

Tired, yes. Looking for sympathy, no. It is what it is, but now you know why I may seem more tired than other moms you know.

(Writer’s note: It took two days to complete this post as I was too tired the first day.)

In the beginning, almost 4 1/2 years ago, I knew nothing, but didn’t realize how little I really knew.  I knew I’d have to learn about diabetes. I knew all the stuff that came along with a new diagnosis was going to be a huge learning curve, but, as they say ignorance is bliss, and because even in the midst of all this ‘newness’ I still felt like I had a grasp on things.

I felt that testing 4-6 times a day was adequate and that skipping the over night testing was okay to do. I felt that there was really nothing I could do about the post meal spike and as long as he was in range for the next meal than I was doing okay. I figured I could count his carbs by reading labels and giving him single serving packs of everything he ate. Yes, I was broken hearted by this diagnosis. Yes, I stayed up all night after getting home from the hospital reading anything I could on how to keep my son alive. But I still felt like I knew enough that I could do this and we would be fine. This lasted about 1 month.

In hindsight this belief of ‘we are going to be okay’ must be some cosmic way of handing this disease to us in small doses. If I had known then what I know now I would have certainly crawled up into a ball and never reemerged into society. From the get go we are given just enough information to keep our child alive when leaving the hospital. There’s no talk of what highs do to the body, what lows can do to the brain, dead in the bed syndrome…none of this. It’s all about making sure your kid can eat and stay alive. Very basic, yet very necessary, information.

It’s not until you delve a little deeper into this disgusting disease that you realize the amount of knowledge you can have is never ending. Never ending. Never. I am still learning everyday even after 4 1/2 years (get that 1/2 in).

About 1 month into my son’s diagnosis I found www.type1parents.org. My intention of seeking out an internet support group was because I felt so utterly alone that I was getting scared. Scared for my well being. I was not yet scared for my son. Yet. I had no one to talk to at 2:00am when a question popped up. I needed answers about being a parent to a child with Type 1 diabetes. Little did I know I would learn the answers to so many questions that I had no idea that I should be asking.

I learned about I:C ratio. That’s when you given insulin based on the amount of food you eat. This is different than the sliding scale that gives insulin and then you eat a set amount of carbs, the method that we were on at the time.

I learned that Lantus (the basal shot) does indeed peak, and does not work for all people for the full 24 hours. Made me start researching a pump.

I learned carb factor. How to weigh all foods without worrying about serving size.

I learned that 100 before breakfast is good, 100 3 hours later is good, BUT I still needed to see what was going on between that time. 4-6 tests a day was not going to cut it.

I learned so much it would take me days to write.

After 4 1/2 years I am appreciative of the way my knowledge has grown. Slow and steady. Bits and pieces. One chunk would have been overwhelming, scary, nauseating, and very defeating. I am grateful for how little I knew then, how much I know now, and look forward to what I will know tomorrow. The more I know the more I can do for my son, and doing for my son is what it’s all about.

Type 1 diabetes can make you have low blood sugar when you are not feeling well. If my son is about to get a stomach bug, once the bug finally hits, I can usually look back at his glucose numbers and see a bunch of lows before he actually came down with the illness.

Type 1 diabetes can make you have high blood sugar when you are not feeling well. If my son is about to get a fever and sore throat bug, once the bug finally hits, I can usually look back at his glucose numbers and see a bunch of highs before he actually came down with the illness.

Type 1 diabetes can make you have low blood sugar when you are active in sports. When my son swims all summer at the pool and beach his sugar will drop. Drop. We have to give lots of carb snacks throughout the day to keep him nice and even so he can swim the day away.

Type 1 diabetes can make you have high blood sugar when you are active in sports. When my son used to play soccer, for that very brief moment in time, his sugar used to run really high, like in the 400s, for a few hours after he actually played. Corrections would drop him like a brick because it was all adrenaline.

Stress can drop my son’s sugars really low. If he is worried about spending time away from me for too long we have to cut his basal a bit so his sugar doesn’t drop too low.

Stress can push my son’s sugars really high. If he is worried about taking a standardized test in school his sugar will skyrocket. 400s are not uncommon when a test is on the horizon. We have to tread lightly with these types of highs because as soon as the test is done, the number seems to drop.

Type 1 diabetes makes my son’s sugar drop when the weather is too warm. We have to lower basals a bit when we are about to hit a big warm spell, and make sure we have lots of glucose drinks for the longs summer days.

Type 1 diabetes makes my son’s sugar rise when the weather is cold. We have to raise the basals and give corrections throughout the day to keep his sugar in range. Unless of course he is playing in the snow. See swimming above.

Type 1 diabetes makes my son’s sugar rise when the school year starts. I have many sleepless nights whenever we go back to school because many adjustments have to be made to pump settings to keep his sugar as close to range as possible.

Type 1 diabetes makes my son’s sugar drop when we are on school breaks. I have many sleepless nights whenever we go on break because many adjustments have to be made to pump settings to keep his sugar as close to range as possible.

Yeah. See where I’m going with this? Diabetes…the great overachiever.

It does it all. No illness, sport, stressful event, standardized test, season, school year, or school break can be free of Type 1 diabetes. It is always there, showing off. Puffing out it’s chest making sure we know he is the ultimate eager beaver.

I was never a fan of the overachiever, so diabetes isn’t impressing anyone.

I check his sugar 10 times a day including while he sleeps.

I review his numbers on a daily basis to make sure the settings in his pump are right.

I maintain all his supplies to make sure he always has enough.

I check his equipment (pump, meter) to make sure they work and have full batteries.

I weigh his food to keep his number as close to range as possible.

I treat every low with respect and treat immediately.

But what if that’s not enough?

And I’m sure the people that die from Type 1 diabetes thought they were doing enough. I’m sure their families trusted that when they were going to bed at night, that all was well, and they would indeed wake up the next day. Instead they die.

See, death from Type 1 diabetes is not a one shot deal. You don’t die from Type 1 diabetes. You die from a low blood sugar. Or lots of high blood sugars. Or DKA. You die from pumps not working. Or settings being completely off. You die from too much insulin being given. Or not enough insulin.

As a mom of a son with Type 1 the ‘hows’ and ‘whys’ are important. If the person died from a pump failure, dead pump, then I know to be more vigilant in checking my son’s pump. If the person died from a low in their sleep than that just makes me all the more positive that checking in the middle of the night is the right thing to do. If a person died from high blood sugar from not checking his sugar, then I need to remember that when my heart aches because I am poking my son’s finger again that it IS the right the to do. It might just be so right that it’s the thing that keeps him alive and with me one more day.

I think of my son dying every single day. In fact, it’s the very first thought that pops into my head when I wake up in the morning. Except of course, the mornings where he crawled into bed with me and I can feel him breathing. Those are good mornings. But if he’s not in my bed, my first thought is…well, you get what my first thought is. Even though I think it, I can’t seem to write it.

So, it is with no disrespect that I inquire of the ‘hows’ and ‘whys’ of the death of someone with Type 1. No disrespect at all. It is just the curiosity of a mom who works everyday to keep her son alive for just one more day.

2. I wish you knew that things can turn on a dime when dealing with Type 1 diabetes. We can be trucking along with blood glucose numbers in the low 100s (good range) and then Wham! Blammo! out of know where a site pops out somewhere between the last BG check at 1:00pm and the next one at 4:00pm and we can have a blood glucose reading of 495 with 1.1 blood ketones. We go from enjoying our day to emergency triage. Got to get that glucose number DOWN. NOW. Got to get rid of those ketones. NOW. We go from enjoying our day to checking blood glucose and ketones every 15 minutes. Pushing water and insulin like they are one in the same. Ketones are dangerous and deadly and come hell or high water you have to get rid of them. Turn on a dime, life or death, a day in the life…

3. I wish you knew that dealing with Type 1 diabetes is both proactive and reactive. Yes, I am proactive that all my son’s pump settings are in a good place right now, all his other ratios seem to be working and helping to keep his number  in range. We eat right. We rest. We exercise. We live our lives to the fullest. Then there is the reactive. I have to decide on a moments notice what to do with a blood glucose reading of 46, or 446. I have to know exactly what to do when his POD starts whistling and giving an error message that there is NO delivery of insulin. I have to react as quickly as if my son’s life depended on it. Oh wait, it does.

4. I wish you knew that when my son is not under my care, the variables are multiplied as to what can negatively affect his blood glucose. An adult or teacher that doesn’t quite “get” his diabetes will cause my son stress and will make it harder for me to pinpoint how to keep his number in range. A cafeteria menu that keeps changing without notice makes me tell my son the wrong carb count for lunch which will either cause his glucose to go sky high or drop like a brick. A cafeteria worker who won’t tell us the alternate lunch until she looks in the freezer each morning which leaves my son scrambling moments before lunch to find out what his carb count is before he sits down to eat so he can at least finish his meal in the 20 minutes the school gives them to eat.

5. I wish you knew that I live in the moment because I absolutely have to. We have high blood glucose reading and low blood glucose readings every single day. See above. A number is just that to me, a number. I have to see it, evaluate it, and move on. We check my son’s sugar over 10 times a day. Could you imagine if I got stuck on every too high or too low blood glucose reading. I’d be stuck somewhere in August of 2007. So when you ask me, “How is your son? His number was high yesterday.” I am not looking at you in a deer in headlights because you are wrong for asking, but because I honestly do not remember or even know about which number you could be talking about. If I chose to dwell on every number of every day I’d be in big trouble. It’s nice to be asked, but in most cases I won’t have an answer other than, “He is fine.” Until there is a cure, “He is fine,” is the way it has to be or we have no where else to go.

Since our diagnosis with Type 1 Diabetes over 4 years ago when my little guy was just a teeny baby in my eyes I have tried my absolute best, and with pretty good success I think, at letting him live as normal as life as possible. After my initial breakdown of hysterical crying and dropping to my knees in the Sugar Free aisle in our Shop Rite I realized that for my son to have a happy, healthy, normal life even living with a chronic illness 24/7 for the rest of his life, I would have to make diabetes fit into our life and not the other way around.

Many families try to make this their mantra as well, yet many have a hard time succeeding at it. And I find holidays like Halloween, Thanksgiving and Christmas really test our mettle as to whether we are true to this mantra or not.

The way our house works with regards to making a food decision I ask a few questions: Is it healthy? Is it a good food choice? Is it the right time for something such as a treat? Would I let my daughter without diabetes eat it? It’s the last one that really has kept me grounded. If I can answer yes to the previous questions and then a final yes to the last question, then I do say yes to my son, the child with Type 1 diabetes. If my daughter’s allowed candy, then my son is allowed candy.

This time of year, with Halloween fast approaching, I see many places like dentists, orthodontists and schools that have candy buy backs. They buy back the candy that the children received on Halloween in exchange for a small gift or a dollar amount. The purpose of these buy backs is to keep America’s children’s teeth healthy, their weight in check and as a measure of good will as some of the candy is donated to troops. I have not seen one dedicated to buying back candy from kids specifically with diabetes, yet many parents’ of children with diabetes seem to gravitate towards them.

Prior to my son’s diagnosis he had 3 Halloweens under his belt. Not once did I consider going to a buy back. Yes, he was just a baby, and yes, I’m sure we ‘helped’ him finish his candy, but a buy back was not ever something I considered. If I was a buy back participant than maybe I would consider it for my children now, but I wasn’t so I don’t.

We trick or treat. We are candy people. I steal the candy from my kids as we trick or treat. We eat the candy for a few days. I bolus accordingly. We are pumping so bolusing between meals is a bit easier than when we were on shots, but even on shots we did it. I would add a few pieces of candy to his meal bolus so that he could enjoy the candy with the same shot that was given for dinner. Yes, giving the candy when he ate might not have been exactly the way we did it before diabetes, but you have to work with what you have. A shot regimen doesn’t allow for easy snacking between meals, but we always made best of it. Candy was eaten and enjoyed just like every other kid.

Now I am not knocking the candy buy backs. They are great if that’s what a family wants to do. But our involvement or lack thereof in a buy back has nothing to do with diabetes and everything to do with our love of candy and our goal of living a normal as life as possible for us.

Back when my son was first diagnosed with Type 1 diabetes, while I never left his side because I was his only main caregiver, I don’t think I had a limit. I fondly recall going to another state about an hour away overnight early on in diagnosis. Yes, I was worried. Yes, I slept with my cellphone. Yes, I did not have the best time of my life, but I did it. We did it.

Then came the night of the dinner party. A big-person, adult-only dinner party. Now as the mom of two children 22 months apart, big-person, adult-only are not very common themes, but nonetheless, my husband and I were indeed acting like big people having dinner and a few drinks. Then came the phone call.

The phone call that ended my night of big-person, adult-only fun. It was my mom on the phone. She was watching my son. I could end this blog post right here, as most of you can formulate your own story of what can happen to a child with Type 1 diabetes that would require a phone call from the sitter to the mom, but I will continue.

My son’s sugar was dropping and even though the proper treatment of glucose was given it was still dropping and dropping fast. I remember the night like it was yesterday even though it was well over 2 years ago.

I left the party and began to drive home the 25 minute ride with my Bluetooth in my ear. The conversation went something like this:

Me: What’s going on?

Them: He was just 55. We are giving him candy but he won’t chew.

Me: Give him something that he can drink.

Them: We are trying to give him soda but he is saying he just can’t drink anymore.

Background from them: I think he’s tired and he wants to go to sleep.

Me. (Screaming) NO! NO! Do not let him go to sleep! Give him anything!!

Them: (Nervous) Ok, we have syrup and we’re putting it in a syringe (to shove in his mouth).

Background: Noise. Whispering.

Me: (Screaming) Is he awake?!?! Is he ok?!?! What is he doing?!?!

Them: (Loudly) Yes, he’s awake still. He’s taking the syrup. Ok. He’s good. Ok. Ok.

Me: (Screaming) Is he still ok?!?!

Meanwhile I am driving through city streets at top speed, slowing down just enough at red lights so they will turn green while I am still moving and revving it through yellow lights so they don’t turn red on me. I am screaming into the phone because they have the phone on speaker so I can barely make out what anyone is saying. Or if they are talking to me, or each other or my son.

Me: Is he still awake?!?!

Them: (Calmer) Yes, he’s awake. He’s drinking now.

We hang up the phone.

I cry. And cry. And cry.

On so many levels that night was so unfair. To absolutely everyone involved. A child should never feel like sleeping (passing out) because his blood sugar has dropped too low and won’t come back up. Grandparents should never feel fear of watching their grandchild pass out because they can’t get his sugar up. A mother should not race through city streets trying to get to her son for fear that this low may be the low that he never wakes up from.

So yes, I have my limits now. And they will remain until, well, I don’t really know how long they will remain, but surely long enough for both of us to feel safe.

We have been living with Type 1 diabetes for over 4 years. I have explained this disease to numerous teachers, classroom aides, Principals, Vice Principals, class mothers, and friends’ mothers. Really, almost too many people to count as I always feel I am on a crusade of educating everyone about Type 1 diabetes. But until very recently I never added the, “because my kid could die,” statement to my conversations.

But that is very much the truth.

I don’t want my son’s sugar to plummet while he is sleeping, “because my kid could die.”

I don’t want my son’s sugar to go unchecked and go to high, “because my kid could die.”

I don’t want my son’s sugar to drop so low when he is high up on the jungle gym as he could fall, hit his head, “because my kid could die.”

I am not sure why this statement hadn’t really passed my lips in the four years since diagnosis. Until recently.

Maybe I am taking some lead from the mom’s of kids with allergies, knowing that the world listens a little better when you add in that a mistake may make a child die. Maybe I am tired of living with this disease 24 hours a day 7 days a week and people still aren’t getting how serious this hidden disease really is. Maybe I want people to understand that the reason I wake up at night, sometimes several times a night, over the course of four years is because I do not want my child to die.

Maybe I am just coming to terms with the fact that my child, my heart and soul, my absolute reason for living, could indeed die from this disgusting disease at any given moment.

I make a flippant remark the other day to a friend when we were talking about ‘my’ life. ”You know it’s a good day in our house when everyone wakes up alive.” It came out faster than I could stop it. As my mom used to say, what’s on my lung comes off my tongue, and this was the case. Although what I said was not insulting anyone it did set ME back a few steps.

In my world, yes, there are fights about school and even with the school. Arguments about cleaning up or lack thereof. Dissent when it comes to bed time. But all in all, it’s a good day in our house when everyone wakes up alive.

I fear the obvious.

That some adult will drop the ball on helping my son care for his diabetes and his number will go too low and have a seizure. Or that he will go low on the way to the bathroom and he will pass out and it will be a while before someone even notices that he is not where he is supposed to be. Or that he will go low on the bus to or from school and no one will notice that he is passed out until they get to their destination.

That’s not all.

I fear that he will have an uncovered snack or pump failure that no one notices and his number will go sky high and he will get ketones and start on his way to DKA (google it). Or that his number will be marginally high and he will not be able to think clearly during a test or quiz.

Even more.

I fear that the kids that used to ignore my son’s diabetes will now decide that having diabetes is reason enough to be picked on, ostracized, and bullied. Or that my son will start to think that he is indeed different and begins a pattern of resentment and hatred for something that he cannot get rid of. I fear that my son will get tired of checking his sugar before meals and snacks at school and will rebel against the necessary means to keep him alive.

And.

I fear that every time the phone rings with the special ring from school that it is the school nurse calling telling me that my son’s number has dropped so low that he passed out and broke his nose from the fall. Or that he had a seizure in gym class. Or that he just tested himself and his sugar was 50 and he is crying that he wants to come home.

Or.

I fear that he gets a teacher that knows someone with Type 2 diabetes and goes into a short lesson on how if my son would just eat right and exercise he could get rid of his diabetes like her 65 year old overweight Uncle did last year. Or that the teacher would deny my son a classroom treat even though it is clearly stated that he is allowed to have any and all snacks as long as he receives insulin for it.

I could go on. And on. And on.

You get the point.

180 days until summer vacation.

You are absolutely unwelcome, yet you stay, 24 hours a day 7 days a week. You refuse to take a break. You hijack our vacations, our day trips to the beach, our days at amusement parks and our time at the library. You have  a free ride to our community pool even though I tried not to buy you your own badge. I try to deny you, leave you in the car, throw you on the side of the road, but you remain. Relentless.

You sneak in places like the shower and the bathroom. Places where a now 8 year old boy is certainly looking for some privacy. How do you have carte blanche to areas of my son’s life that only he should know about?

You are a night owl. I know this because you seem to work overtime making sure my son’s numbers drop really low or shoot really high while he is sleeping. While he is sleeping for God’s sake. You don’t even have respect for what should be the most peaceful time of a child’s day.

You try to ruin school plays, and recess, and parties for birthdays. You try to make travelling difficult, getting babysitters  a chore, and going to the mall an interesting event. I say you try because, you, diabetes will NEVER ever win.

If I have to tend to you while my son sleeps, or goes to a party, or goes swimming, or takes a shower, for the next 20 years, I will. I will never let you win. My son will continue to live his life to the fullest no matter how hard you try. You can pull out the stops, the highs, the lows, the ketones, whatever and I will be there. You will hate me as much as I hate you, you can believe that. You picked the wrong family to invade.

My son couldn’t care less about you. Yes we manage you to shut you up, but you are just that, something we deal with because we have to. You will never be the center of our lives, you will never be the guest of honor at a party, you will never take over anything and be foremost in any situation. I won’t even ask how you are. I don’t care. You chose to come here now you will take a back seat and shut up as my son goes on to live a happy and healthy life.

So it’s been 4 years. I can honestly say I hate you more as I get to know you. I feared you in the beginning, but you are nothing to be afraid of. In fact, diabetes, you should be very afraid of me. Every trick and turn you make, I will be there. You will not win. Like I already said, you can go to hell.

You, diabetes, are relentless, but I…I am a mother.

Sincerely,

The Mama

In our case, prior to my son’s diagnosis he started wetting the bed. He started about 5 days before his actual diagnosis. He wet the bed once a night for a few nights. During the night before his diagnosis he wet the bed no less than 5 times. At diagnosis the next day his sugar was over 1200 (normal being 100) so it is clear to see why his body was expelling so much urine. The amount of sugar in his blood was suffocating his cells and he was dying. His body recognized that something was wrong and tried with all it’s might to make things right.

I’m not sure if you know our diagnosis story. The abbreviated version is my son started wetting the bed and drinking a lot, I started researching diabetes, I demanded a urine test at his 4 year old check up, and the rest is history. Our story is here http://type1parents.org/type1demystified/?p=174 if you want to read it.

The title of this post, however, is not about my son, it is about my daughter. My newly minted 6 year old who does not have Type 1 diabetes. My healthy, beautiful, energetic, sassy 6 year old daughter wet the bed the other night and the only thing I could think of was…diabetes. I skipped over the fact that she took a cough medicine that could have made her extra tired, I skipped over the fact that she could have forgotten to pee before she got into bed that night, I skipped over the fact that she could have been dreaming about the ocean. I skipped all the reasons a mom without any children with diabetes would think of. I went right to it. Right to diabetes. Right to another diagnosis.

She doesn’t have diabetes…for now.

After I cleaned her up, and put her snug in her bed, I did check her sugar. It was perfect. I did breathe a sigh of relief…for that moment.

That one moment in time when my daughter does not have diabetes.

In my heart, and gut, I am waiting for the other diagnosis. I don’t know for sure of course, but along those lines, I don’t know for sure one is never coming either. I am always in a state of waiting. Waiting if she will be diagnosed, or waiting if she won’t. People are diagnosed with Type 1 diabetes well into their 50s so the waiting will never end for me.

Every time she eats too much…I hold my breath.

Every time she pees too much…I wait.

Every time she asks for 2 drinks in a row…I worry.

Diabetes permeates your heart and soul even when you work 24 hours a day pretending that it doesn’t.

Type 1 diabetes is blood glucose, yes. Type 1 diabetes is insulin, yes. Type 1 diabetes is carb counting, yes.

But…

Type 1 diabetes is also pain, yes. Type 1 diabetes is also fear, yes. Type 1 diabetes is also unrelenting, yes. Type 1 diabetes is also exhausting, yes. Yes. Yes. Yes.

As a mom of a son with Type 1 diabetes, I truly get it. I feel the pain that my son feels when he has to check his sugar over 10 times a day. I feel his little fingers as they get calloused and rough at the tender age of 7 because he has to check his sugar to stay alive. I feel my son’s pain when he winces instead of screams because he is so freaking brave when we have to change his insulin pump every 3 days. The pain is there, it does not go away. It can’t, pain and diabetes go hand in hand.

I feel the fear. I feel the fear that my son will not be alive when I check on him in the morning. That’s a fear that cannot be explained or understood unless you live it every day. No mother should wonder if her son will be alive in the morning. I feel the fear when my son is outside playing and I see him hanging upside from the slide as if he has passed out, only to scream, “WHAT ARE YOU DOING!?!?” Just to have said son answer quite simply…”Nothing”. He knows the fear too. He knows he cannot leave the house with fast acting sugar and his meter. He knows it is dangerous for him to be far from another person. He is 7!

I feel the fear of a blood glucose reading of 45. It’s as if a chainsaw murderer is chasing me to my front door and I only have seconds to get the key in the lock so I can be safe inside. When I see a 45 I feel as if I only have seconds to grab that fast acting sugar to ward off a low blood sugar seizure. Who am I to test the fate of a reading of 45?

I feel the unrelenting power of diabetes. There are no sick days, time off, vacation days, holidays, mental health days when dealing with Type 1 diabetes. You are on and working 24 hours a day 7 days week. There is a joke that you can rest when you are dead, well, that’s about right for caring for diabetes. You can stop caring for diabetes when you are dead. Or if you turn it, you can stop caring for your diabetes and you will be dead. Either way, you’re off the hook, but until then, you keep on keeping on. My son is well aware too, birthday parties, water parks, the beach, the pool, Great Adventure, diabetes is there. Uninvited. Unwelcome. Yet, always there.

Exhausting. No, not the “I worked all day on my feet” exhausted. But more like the “I haven’t slept more than 2 hours in row for 3 days because I have to check my son’s sugar every 2 hours” exhausted. That’s an exhausted that many people will never have to know. Exhausting to my son, who is the recipient of all those blood checks. Who would want someone to come into their safe space, their bedroom, and stick a needle in their finger to draw out a tiny droplet of blood? Not I. My son wakes up sometimes more tired than when he went to bed and he has no idea why. He doesn’t wake up with those checks, but I know he knows I’m there. He sticks his tiny finger out when he hears the glucose meter beep. If that doesn’t break your heart…

I get it, I do, and I love the people that get it with me…you know who you are.

My son is starting a new pump this Sunday when the trainer stops by to get us going. The ball for the new pump started rolling on Christmas Eve when my son told me that his Christmas wish was, “…that when Santa came by to drop off presents he would also take away my diabetes.”  He continued, “Well, not really the diabetes but I wish he could take away the tubing and site changes from my pump.” Yes, that shattering sound that you hear is my heart breaking yet again as I type those awful words.

So after I picked the pieces of my heart off the floor, I decided to research a new pump for him, one without tubing.

Two days after Christmas I got on the horn (always wanted to say that). I called the new pump company and had them send a dummy pump for us to try on. Got that in the mail in about a week. Wore it. Loved it. We were READY!

Around the same time I contacted our endo’s office requesting that paperwork be filled out to start the process of switching pumps. Got that in the mail about 3 weeks (about 23 days) later. Yep. You read correctly.  It took 23 days for medical necessity letters to go 22 driving miles.

There is no blame being placed here. I understand that snail mail from the hospital takes a long time to actually get mailed, but that doesn’t make the waiting any easier. Especially when you have your child waiting right along with you. You think Christmas morning is exciting, well so is getting the paperwork for a new life saving device. Your priorities shift a bit when you’re a kid living with diabetes.

If I had known that it was going to take that long I would have driven myself to get it. Live and learn.

You think we’d be set now that our pump training is Sunday. No, we continue to wait. We are now waiting for our endo’s office to submit the CORRECT prescriptions needed to transition to this new pump. We need new meters and test strips that coordinate with the new pump. The reason I wrote correct is because they did submit some, but they were not right, so now along with WAITING on hold with insurance as I have done several times because of the wrong prescriptions being sent, I am still WAITING for the right ones to be submitted.

3 unanswered phone messages, 3 unanswered and seemingly unread emails and 5 hours on the phone with insurance and I am still WAITING. Just to keep this straight in your head, I am waiting for a response from the endo as to the progress of the new prescriptions and I am waiting for the correct order to be  placed and I am waiting to receive the order of supplies THAT HELP KEEP MY SON ALIVE. Again…THAT HELP KEEP MY SON ALIVE!!!!

Yeah, the waiting is, if not the hardest part…a pretty damn hard part at that.

Oh and add to this waiting for that CURE and I would say waiting is a pretty damn hard part indeed.

80 is a great number upon waking up. 80 is not so great 1 hour after eating with over 3 units of insulin on board. 80 is not so great for a little one sound asleep at night with a plus/minus standard deviation allowed on meters and on basal rates. Our basal rate deviation that is acceptable to our endo is plus/minus 30 points. A basal rate is set right if my son does not go over 30 points from our starting number or below 30 from our starting numbers. So an 80 in the middle of the night could possibly go to 50 and still be in good basal range but in dangerous blood glucose range. That same 80 in the middle of the night could possibly got to 110 and still be in good basal range and an even healthy blood glucose range. That’s where the maybe comes in. And that’s where the tired mama comes in too.

I get stuck in the middle of the night if I see a number like 80. Do I treat it as a low? Or go back to bed and hope for the best? I never hope for the best, the real plan of action is I will continue to test my son every 1/2 hour while he sleeps to see where that number is going. But if I did decide to treat that 80 with some carbs, and if it were going up to 110 on it’s own, then my adding extra carbs could land us in the 190 range, which is a not a good number for waking up.

Now let’s talk about that 190. Diabetes experts, the ones that get paid, unlike the mom experts that I confer with on a daily basis, say that a good number for 2 hours after eating is 50 points higher than where you started. So if my son started his meal at 140 and I check him at the 2 hour point and I got a 190 then I would be thrilled. 190 2 hours after eating with about 1.5 hours of insulin left to work should give us a nice smooth landing into our decent blood glucose range by the next check.

Ah, 190 at night. Another one that gets a maybe. 190 is a bit high UNLESS my son was very active during the day and I know he is going to have a delayed drop from the previous day. Sometimes it takes 12 hours for a low to hit after an extremely active day. And yet again, another night where I check a couple more times every 1/2 hour to determine what is going on. Sticking at 190 overnight requires a correction (insulin), but dropping means it is okay for me to head back to bed. Unless of course it’s a big drop like 190 to 100 in 1/2 hour. A drop like that is NEVER good.

300, 400, 500, HI, 50, 40, 30, 20, and LO are NEVER good numbers. It’s those numbers in between from say 80 to 190, all 110 of them that leave me wondering if it indeed is a good number.

I wish there was something more concrete to this disease that weighs like a ton of bricks on my heart.