I hate diabetes. Have I mentioned that lately? Well I have, just not on here. I can’t even believe it’s been almost three years since I’ve blogged. But life has been crazy busy the last three years. And the whole reason I even started this blog was because *Medium had just been diagnosed and I was overwhelmed with emotions and needed an outlet for them. I took to the blog when I was scared, angry, sad, and frustrated.
*(In case you are reading my blog for the first time and you’re confused, “Medium” is the nickname I gave my middle son, the one with T1D, to keep his privacy on this blog. I have three boys so the oldest is “Large”, the middle one is “Medium” and the youngest is “Small”. Now you know).
And I’m not saying that three years ago I stopped having emotions about diabetes, because I assure you I didn’t, but maybe I wasn’t quite as overwhelmed with them. In the months after his diagnosis, we learned more about diabetes and how to take care of him, we discovered resources to guide us and I met lots of other D-moms I could lean on for support and encouragement. So my need for the blog as an outlet diminished and there were plenty of other commitments that needed my time, so the blog sort of fell to the back burner.
But I promise you these last four years since Medium was diagnosed have been the hardest of my life. (Of course they have been the hardest of his life, too and I never want to sound like a whiner as I am FULLY aware that HE is the one who has this disease, and will have this disease and HE has to live with all that comes with it, but this post is about a mama’s perspective. Believe me, I don’t have enough words for how I feel about him and how he lives with this everyday–proud/sad/amazed/helpless are just a few.)
As I was saying, these last few years have taken a huge toll on me. Diabetes has permeated its way into and weakened almost every single area of my life. My physical health, my mental health, my marriage, my mothering, my relationships with friends and family members, my performance at work, my Plexus business, my finances….all have been damaged by diabetes. This is not necessarily the case for everyone. Other people are maybe better equipped to cope than I am, or others have different personalities that allow them to absorb what diabetes throws at them without it affecting them as much. For example, my husband. He is extremely laid back. Medium’s diabetes doesn’t affect his life nearly as much as it does mine. That’s not to say he doesn’t care about Medium and his health as much as I do; his personality just allows him to go with the flow and my personality allows me to constantly try to swim against the flow. He is as laid back as I am wound tight. Neither of us can help this. It just is what it is. I feel EVERYTHING more intensely than he does, not just diabetes.
What this means is that I feel every single blood sugar number. I feel every single missed bolus. I feel every single failed sensor. I feel every A1c. I want to fix it all. Right. Now. I think about every possible scenario. We live in Kansas where you can get your driver’s permit when you are 14 and Medium turned 14 in November. He hasn’t really asked about it and I am not saying anything because him behind the wheel brings about a whole new set of challenges and worries. Are we going to let him get his driver’s license when he turns 16? Are we going to let him drive friends around when he is 17? And there is the thought of him going off to college. How is THAT going to work? Are we going to let him do that, or are we going to make him live at home where we can monitor him? And will he be able to find a wife who understands all there is to know about diabetes and is willing to take that on? Will he find someone who is willing to have children with him, knowing that their child could very likely develop diabetes also? Is he himself willing to have children knowing he could potentially “pass this on” to them? I can assure you, these are NOT things my husband thinks about. He does not lay in bed at night worrying about these things. But I do. I think about every single one of those things and a hundred more, every single night, at any given moment during the day, while I’m sitting in a meeting, while I’m driving home from work. It consumes me. And when you think about it, most moms are probably very similar. As moms, most of us can probably say that we are consumed with the health, safety and well-being of our children. But when your child has diabetes, that health, safety and well-being are being threatened every second of every day. You have a known enemy, not just vague “what ifs”.
Medium has a very good friend, we’ll call him Blondie (because his whole family is very blonde). I truly believe that Medium and Blondie meeting and becoming friends was a God-thing. Making friends in middle school is hard enough, but when you have a “strange disease” that no one understands and you wear a pager (insulin pump) on your hip, kids tend to shy away as, on the surface, that picture seems a little much to deal with. But God knew what He was doing putting Blondie in Medium’s life. As fate would have it, Blondie’s first cousin is around the same age as them and she has type 1 diabetes also. She lives in the same town as us so Blondie (and Blondie’s family) are very familiar with T1 and all that comes with it. Blondie’s mom is especially well-versed in it as it is her sister’s daughter who has it. It is so unnerving to send your child to someone else’s house who does not know much about diabetes. There are so many details and so much to consider and you feel so bad asking other people to try and learn and be responsible for all of that. And, because of my personality, I HATE, HATE, HATE feeling like I’m burdening someone or asking for help or special considerations. But Blondie’s mom doesn’t make me feel like that. She loves Medium and she “gets it”. She has even downloaded the Follow app to her phone so she can follow Medium’s blood sugar numbers when he is at her house. And that’s a good thing because when he goes over there, he is usually there for days 🙂 I cannot put into words how much I appreciate her and their whole family for accepting Medium and being willing to take on diabetes with us.
One of the things we have always struggled with since Medium was diagnosed is the CGM (continuous glucose monitor). It is a second device, separate from his pump, that, when he wears it, will give us a glucose reading every 5 minutes. It is especially helpful to see trends as it will display an arrow (or arrows) up or down if his blood sugar is moving quickly in one direction or the other. When he’s not wearing it, we have to do a finger stick and then you get a number. But you don’t know if that number is on it’s way up or down or if it’s stable. For example, if we did a finger stick at bedtime and he was 120 that is a great number. But if he had a sensor in and it showed us that he was 120 with double down arrows and that five minutes before he was 127 and five minutes before that he was 134 then we would know that his blood sugar is dropping quickly and we need to take action or at least keep an eye on it. And with the amazing technology out now, we can “follow” his numbers on our smart phones when he is wearing his Dexcom cgm. We can literally see what his blood sugar is doing from anywhere in the world as long as he is wearing the cgm and all the technology pieces are working (bluetooth, wifi, etc.) This is especially helpful when he wants to spend the night at a friend’s house because we can follow his blood sugars and set parameters on our apps that will alarm if he goes above and/or below a certain number.
And while Medium knows he has to wear his insulin pump to stay alive, he also knows he doesn’t HAVE to wear his cgm. Is it helpful? Yes. Will proper use of it lead to better outcomes and lower A1c’s? Yes. Do D-moms around the world consider them critical? Absolutely. But to a 14 year-old is it necessary? No. Therefore, Medium does not do the best job of “protecting” it and making sure it stays in and stays calibrated and stays wirelessly connected to his phone. After all, he’s busy hanging with his friends, being a 14 year-old boy. (He also breaks out in a rash when he wears it and he has ZERO fat on him and the sensor needs to be inserted into subcutaneous fat and he doesn’t have much of that. So real estate is scarce and we HAVE to make room for his pump–which also needs to be inserted into subcutaneous fat–so having a properly working sensor in him at all times is near impossible right now).
Our rule is he has to have a sensor in (and working) if he’s going to spend the night at Blondie’s house. And Blondie’s mom agrees. Frankly, Medium is lucky she is so amazing because I’m not sure I would be willing to take on the risk of having a kid with T1 spend the night at my house if the situation were reversed. I’d be too worried something bad would happen, but then again, I am quite the worrier.
Medium went to Blondie’s house after school on Friday and he wanted to spend the night. The sensor he had in wasn’t working. We tried to put it in his thigh, since we are running out of other places, and it turns out it was in the muscle, not the fat so it wouldn’t work. Ugh. And, ouch!!
So we made him come home Friday night. He was not happy. We put a new sensor in and took him back over there on Saturday morning and he stayed there all day. So when it came time, we said he could spend the night. We always text with him before we go to bed and have him do a finger stick so we can see if his sensor is close to the same number or if it needs to be calibrated. I was not feeling well so I fell asleep early. I don’t remember what his blood sugar was on the app when I checked but it was a “good” number (not too high, not too low).
I woke up to go to the bathroom at 1:45. The first thing I ALWAYS do when I wake up in the middle of the night, whether he is here or somewhere else, is check the app and see what his number is. So I checked. 62. Shit. That’s low. Not crazy, dangerous low (yet) but low. I could see that for the last couple of hours he had steadily been coming down. Now, this sort of thing happens a lot, but when he is at home I can just go down the hall, grab his glucometer and check his sugar. If it really is low, I can wake him up and feed him. As much as all of that in the middle of the night sucks, it is doable. This being a 10 minute car ride away at someone else’s house thing is not very convenient for handling middle of the night blood sugar issues. I immediately called Medium’s phone. No answer. I called again. And again. And again. And again. I laid in bed and waited 5 minutes for the next reading. 61. Hmmm. Five minutes later, 63. Yay, maybe it’s coming back up. Five minutes later, 62. Okay. Five minutes later, 60. Shit again. This went on for about 30 minutes until it hit 59. Really shit now. I called Medium again. Knowing the ringer was off, but hoping someone would eventually hear the vibration. Not a chance. Medium sleeps with a fan basically on his head so he was never going to hear anything.
Because I know that Medium is not the best at paying attention and calibrating his sensor I was mildly confident that he really was not that low. But because I fell asleep without texting him I really had no idea. And this is not the kind of thing you can just “hope will turn out okay”. But I REALLY didn’t want to call and wake up Blondie’s mom, especially because I didn’t think he was really that low. So I texted her. Yes, because that is what we do when we are trying to ignore the blaring red light that is flashing in front of us. This was literally my text to her at 2:17 in the morning:
“Any chance you happen to be awake? Medium’s blood sugar is low and I really don’t want to call and wake you up. Smiley face emoji with the teeth.”
Because, yeah, she was just going to be wide awake at 2:17 in the morning….
I continued to watch his numbers slowly tick down for the next 30 minutes. It was somewhere in the low 50s when I decided I could no longer lay there praying for it to go up. It was time to take action. So I pulled Mama Blondie’s number up on my phone and I closed my eyes and cringed while I hit the “call” button. I was trying to decide how to profusely apologize to her when I got her voicemail. Well crap. I dialed again. Again, voicemail. Hmmmm….. I waited a few minutes and dialed again. Voicemail. Shit. Now the panic is starting to set in a little. Meanwhile, his number continued to fall. I tried calling Mama Blondie again. Voicemail. Checked the app, 49. SHIIIIIITTT!!!!
My husband was sleeping with our youngest son since I had been sick so I went in and woke him up. Now, we don’t always see eye to eye during normal waking hours, so the conversation that took place at 2:50 in the morning was less than pleasant, to say the least. Plus add the fact that I was scared, mad and frustrated in and I will admit, I was not exactly kind….there were words exchanged. Some not very nice ones. I might have asked my husband what kind of an idiot he was after he said he only tried calling Papa Blondie once. Not my finest hour. Stress will do that to a person. Papa Blondie’s phone went straight to voicemail the second and third time, as well. And my husband never did answer the idiot question.
My husband had texted with Medium before he went to bed and at that point his sensor said 99 but his finger stick was 276. So clearly the sensor was way off. He told Medium to calibrate and he said he did, but obviously he did not. So I was fairly confident that he wasn’t really 49, but again, we can’t just assume here. Because his finger stick said 276, he gave himself insulin to bring his blood sugar down. What if he gave himself too much and he really was 49?
My husband says, “what do you want to do?” Boy was that a loaded question. I wanted him to somehow miraculously make this all go away and somehow take care of it all on his own, but obviously that wasn’t going to happen. So I sweetly say, (hey, I’m recounting this story I can tell it however I want to…) “what the hell else can we do, we have to go over there.” To which he says, “yeah, I guess. They’re in the basement so we can knock on the windows.” Yes. Yes, THAT’S what we’re going to do. We are going to drive over there at 3:00 in the morning, sneak around to the backyard and knock on the basement windows. Not only will we scare the shit out of the boys, but we very well might get shot in the process. Yes, that sounds like a smashing idea, honey.
So what exactly does one wear to casually stop by a friend’s house, unexpectedly in the middle of the night? No, really, I’d like to know. Because after trying on multiple outfits I settled on a cute but casual pair of black capri’s and my black Under Armour hoodie (just in case we had to employ my husband’s idea to sneak around the backyard it would be harder to shoot me in dark clothing).
We pulled out of our driveway at 3:11 and pulled into their driveway at 3:18. I asked my husband to go to the door because I was feeling too emotional. I handed him a bag of Skittles as he got out of the car, because, after all, if the reason we drove all the way over there in the middle of the night and woke their whole family up was because Medium had dangerously low blood sugar, then we should probably bring some life-saving sugar. (I guarantee you my husband did not think of this. Score two points for me.)
As soon as I heard Blondie’s dad’s voice, I burst into tears. (This is why I stayed in the car.) At that moment, I knew he would be safe. We were here, we had sugar. We could do whatever we needed to do to make sure he was safe. I cried in relief. I cried in remorse feeling so badly that we had to wake them so dramatically out of bed. I cried in shame (at some point during all of this my scared and panicked self thought it would be a good idea to text Medium and tell him he would never spend the night anywhere ever again. I texted him that we had been trying for an hour to call all of them. What kind of monster tries to make their 14 year-old feel bad about a disease they can do nothing about??) Have I mentioned that diabetes has taken a toll on all of my relationships??
Mama and Papa Blondie felt so bad that they didn’t hear their phones. Which made me cry even more because they are such awesome people and I HATE that they have to be inconvenienced at all with any of this. I was never mad at them, not even for a second. I was only ever mad at diabetes (and a little mad at my husband for not knowing what kind of idiot he was). Mama Blondie stood in her driveway, wrapped in a blanket chatting with us at 3:30 in the morning like it was the most normal thing in the world while I hoped she couldn’t see the tears streaming down my face. Now I’m going to feel even more burdening when Medium wants to spend the night over there thinking they aren’t going to get good sleep because they are going to keep their ringers on and worry about him.
Everything turned out fine. A finger stick revealed he was 108–a perfect blood sugar number. He ate the Skittles and, of course, wanted to stay. I wanted to put him in the car, bring him home and put him in bed with me where I could keep my hand on his beating chest to make sure he was alive, but I acquiesced.
I cried all the way home.
I hate diabetes.
This is how I imagine, EXACTLY, of how I would react if I had a kid with T1D-exactly!! You are the unsung hero in your son’s life. Even if he sees you as the annoying, mean Mom that you HAVE to be. I bet every other T1D Mom can relate to every word of this. You are doing a fantastic job-don’t ever let your head tell you otherwise. You are my hero!!
I know EXACTLY how you feel. I could have written this myself. Type 1 more than sucks and I hate it with every fiber of my being. It has affected every relationship in my life and especially my relationship with my Type 1 daughter. I also hate sleepovers because of diabetes. I do everything in my power to have them at my house. It makes me feel controlling and crazy but I don’t care. After a night like that you don’t want them out of your sight. I’m glad that medium has blondie and his parents who know this disease and how serious it is. You only reply get that when diabetes has come uninvited into your loved one’s home.
I hate diabetes too. We just passed the four-year mark with my 10 year old daughter, and just one year on the pump with CGM. I feel every word you have written (especially about how every single aspect of my life has been affected by this disease) right down to my very soul. Welcome back. Thank you for sharing. You’re not alone.