When it’s right to cross a line that shouldn’t exist

I’ve been told lately that I might think too much about diabetes sugar surfing AND trends AND what have you. WHEN She IS WITH dad I sometimes manage TO take a breakFROM opening the blueloop TEXT notificatons OR Dexcom Follow app TO peek AT trends. LAST night wasn’t one of those nights and I thought it’s a good example TO SHARE, because this a REAL problem IN the life of managing divorced diabetes.

If you are reading this AND are a parent of a child WITH diabetes living IN the same house AS the other parent of your child WITH diabetes, COUNT yourself lucky. Even IF you have different parenting styles, OR a difference IN the knowledge of diabetes, OR IN the drive TO CONTINUE TO grow IN that knowledge, you are still lucky. Communication IS fast, AND nudging a sleeping spouse TO say you’re scared about a DELAYED low wouldn’t be taboo AS what I did LAST night. IF you are reading this AND are a divorced parent of a child WITH diabetes, I feel your pain.

While I’m NO expert I DO have a certain grasp over my kid AND my diabetes “ IF this THEN DO that” care LIST IS long.   LAST night I didn’t take a breakFROM looking AT numbers because she had just finished an evening of a rigorous marching band rehearsal, was fighting illness AND overly exhausted. It’s the perfect storm for a low.

Her phone died right at the end of practice, which meant Dexcom Share was down.

Charge the phone please
Charge the phone please

A BlueLoop notification from Dad showed a healthy bedtime BG if no activity, and basal reduction that was too slight, and too short. It was 11:20pm. This wasn’t enough. My brain screeched to a halt on all other thought and starting ticking on the “ifs and thens”. I got scared fast. I tried to text the sister. My thought was to reach the kid and chat with the kid because I knew dad was likely asleep. It didn’t work.

So I did the most uncomfortable thing ever and called to wake him up.

Calling an ex to discuss the here and now of your child’s diabetes management is as weird as calling the parent of a friend of your kid who lives in your house so much that you love her just the same as if she were yours.

Icky sticky.

Me: I’m so sorry to do this to you but I’m considering her numbers and activity and Dexcom Share only vibrates (need replacement) and I’m scared what you did isn’t going to cover the low that’s sure to come.

Okay, so here is what I think worked. “I’m sorry. I’m scared.” I kept repeating that I was sorry and I was just scared. Calling him and waking him up is something I’ve seldom done IN our 3 years, 8 months AND 3 days since diagnosis.

Dad: Well, I’ll hear the vibration.

Me IN my head: You want TO risk NOT catching a low ON a vibration?

Me OUT loud: IF I remember correctly, (chuckle, chuckle), you SLEEP LIKE the dead. DO you really wake up? I’m so sorry, that scares me a little.

Me IN my head: NO effing way I’m going TO hang up AND trust you waking TO Zzzzt Zzzzt Zzzzt!!!!

Me: Could you please wake her up AND give her SOME chocolate milk, OR DO a greater basal reduction, OR maybe BOTH?

Him: Sigh. She said she didn’t want anything BEFORE bed.

Me: Oh, well that wasn’t very wise of her, considering the DAY AND all.

Me IN my head: What the frick does she know!? She’s a dumb teenager who just wants TO forget about diabetes AND tumble INTO bed!

Him: Okay, I’ll DO it.

Me: I really DO appreciate it. I’ll be able TO SLEEP NOW AND again, I’m really sorry I got you OUT of bed. I usually don’t DO this. < — does he realize I don’t ever do this? Or do I ramble around like a nag in his head that it feels like I always do this?

A few minutes later, a BlueLoop notification comes through and it’s only 15 carbs of chocolate milk. It’s not great, but it’s something. This is when I go to bed because I trust chocolate milk and I sleep like a baby without diabetes. Every day when I wake up the first thing I do is check my texts to see what’s going on in my world. This morning, I notice there were multiple BlueLoop entries and Dexcom Share still isn’t working. Often, I skip opening these texts in the morning but today I’m curious because of that phone call.

There were lows. The first low hit this morning, a full 12 hours after hard activity. Another 2 hour little basal reduction. One hour later is a greater low, and finally action is taken. At this moment she’s still sleeping. And I think, “Is he learning from this?”

As much as many of you reading this might consider that I’m feeling complete satisfaction and steeping in harsh judgement of him because she experienced a low. I’m not. I don’t look at myself as being an “told you so” person, but if I’m being perfectly honest I’m feeling a little bit like, See? See what happened there? Did you learn from that? Is this the same as “I told you so?” Maybe it is, but I don’t want it to be.

Plus I feel icky. The discomfort in calling him carried into morning and I don’t think I’ll be shaking it any time soon. Was I right to interfere? Of course! She’s my child! And, I hope the manner in which I conducted myself hit the spot as helpful, and not any possible negative thing. I mean, who really knows what he’s thinking anyway? Maybe I don’t want to know.

I hope he learned, but not at the expense of his esteem. He’s a good dad. Have I told him this enough? Probably not, and I’m not even sure it would help because he probably wouldn’t believe me. I wonder. While I’m sitting here with zero satisfaction of the See? See what happened there? Is he sitting there feeling as if I’m at my house shouting “I TOLD YOU SO!”

This is one of those things I’ve grown to know I cannot change, so I lower my expectations and just carry on trying to be a helpful and smart human being who is cautious when it comes to his feelings.

I also wish he remembered that wherever She is at the moment, I exist as her parent and have a right to share him my fears when it comes to anything that’s going on in her life. Too many parents want the other to disappear when it’s “their time” with their kid. The hard truth is we never disappear, and there are lines you can cross, and for every living person divorced or not, that line is in a different place. I equate divorced communications to walking a tightrope. Risk. Tension. Fear.

Maybe I need to make another phone call, and this time it’ll be a genuine Thank You.

the great divorce dilemma vent

One of the reasons for starting this blog was to give a voice to managing diabetes in a non-traditional family situation. I’ve FOUND nothing productive OR kind ON the internet about people who are going through this life IN satisfactory mode. AND, this IS a little BIT of venting. CALL it what it IS, it’s still my truth. Someday there will be another post of when times are amazingly good.

Let me start by saying that as far as divorced lives go, ours is quite civil. We share expenses 50/50, save seats for each other at any of the girls’ EVENTS, volunteer side- BY-side AT school band FUNCTIONS, attend parent teacher conferences together (a shocker TO most teachers!), AND he will always SHOW up WHEN I, OR my husband, send OUT an S.O.S.. We SHARE, AND display, a mutual respect FOR EACH other, AND whenever I get pissy over something, my golden-boy husband reminds me just how good we’ve got it. Because we do.

Now that that’s said…

Divorced diabetes IS a chronic illness IN itself. It calls FOR it’s own care and daily maintenance, and accountability. There’s always going TO be one parent who IS smarter THAN the other IN dealing WITH diabetes, communication, management of the stuff of life. IN our CASE, that parent IS me. I make it my job TO get TO the bottom of the twists AND turns of diabetes care, WHILE the other operates ON a different level. Think of a tripod whose legs aren’t set at the same length and trying to take all of your photos with it. It’s a frustration beyond ANY other frustration. WHEN I have these moments, golden-boy always brings me back WITH his gentle reminder. But still. I have these days, AND ON this particular weekend I’m justifiably frustrated. I know I’m a different person, LIKE I was born FOR this job, AND maybe I’ve missed my calling and should have gone into some sort of medicine. The closest I got was working in sales and marketing for a company that created rapid testing for infectious disease where I read MMR for fun while I was supposed to be organizing marketing materials in the sales closet. How the human body works is a hard concept for the ex to understand. He’s a black AND white, engineering-minded kind of guy who doesn’t believe in things he can’t see, AS IN microbiology OR the workings of our innards. Germs? What germs? I see NO germs. Infant botulism? Microscopic bits of botulisum spores IN the air ingested so they land IN the stopped-up gut, creating a toxin that binds over the nerve synapse, resulting IN paralysisFROM the cranial nerve TO the feet…Wah?  AND, just what happens TO make that glucose burn up so fast IN her little body? <— this was a question asked 6 months ago. Awknerd.

I can’t fault him for not being like me. And what is really different about us (to our very core) that affects how this kid is cared for is I am hungry to understand this beast. He not so much. I eat up anything I can learn from all the beautiful professionals we have at our disposal, buying their books if they’ve written one, go to conferences and summits, organize walks and fundraisers, read great blogs from adult type 1 peeps, and other Type 1 moms like me until my eyeballs threaten to dry up and blow away. I can’t really know what he tries to learn in the comfort of his own home, but I doubt it’s much. This weekend’s decisions coming to me via Share and BlueLoop are telling me this is true. Everything is a guess. And I’m not talking the guesses that most people make based on what they learn from educating themselves, I’m talking about shot in the dark, no science behind it, doopey-doo guessing. But he’s there, doing it. He shows up day and night to “be” there, doing the best that he can do. He wakes up in the night and checks her. He is diligent about our insulin and strip orders.

And he does go to necessary training classes like here from when she got the pump.

At this education class, he didn’t know it, but kept saying G-Dammit over and over and over and over (the whole thing, yal’ll).

I tell myself over and over, this is the best that he can do and she’s surviving through it just fine. I’ve learned to not jump on the phone and say, “Uhm? Can we talk about that decision you just made? In Gary Scheiner’s book, it says….” The Dexcom Share makes it super easy to SEE the trend that he’s basing his guesses on. I’m here thinking, that basal reduction is not enough, for not long enough! And then I wait for the wail of my Follow app. And it comes. And I sigh. And my hands are tied, because I’ve learned to tie them.

Early on in diagnosis, I was appointed point person for diabetes care. As much as I’m happy for it to be me in this role, I’m also perpetually frustrated for not getting the respect the position warrants. It would be a different story if he got on board with the cliff notes of the stuff that I learn on behalf of our parental tripod. I imagine him sitting there fuming “She thinks she’s so smart.” Well, you know what? I’m trying to be smart. We parents have to be smart – especially when we are training our kids for when they leave our home and begin taking care of themselves, completely on their own. Bang head on wall. She will be fine. Listen to the others. She will be fine. She will have my direction in her head. It really only takes one of us to get through to be her “person”, doesn’t it? Please tell me that’s so. We have lists, and formulas, and all other sorts of strategies on paper in order to give his mind some concrete black and white reasoning power. Diabetes isn’t black and white, and that’s hard.

I’m sure he is frustrated. He must be. Just HAS to be! I envy his cucumbery response to these divorce dilemmas. Hands up in the air, shoulders shrugging with an “I don’t know” attitude. Whatevs. Try to know. Please try to know more. Do more. Stop being 25 million steps behind me already. It’s exhausting! You know I do realize that I could be living with this person and still be in this situation. Right? Well, there’s that. My guy travels with me in this life and learns what he learns. We are lucky to have each other to talk through head-scratching situations. Unfortunately, he’s also given over some amount of control to me, but doesn’t remember stuff that is important to remember.Hi Honey, I love you. My ex, however, doesn’t date and hasn’t remarried. He’s doing this alone and chooses to be doing it alone. But he doesn’t have to. It doesn’t have to be this way.

In summer our shared parenting schedule changes. My Shes are with their dad from Thursday night until Sunday at noon. That’s a looooooong time when diabetes is being a bad, bad boy. Last night was the start. So, today I had to remind myself all day what day it was. Look at calendar. Oh yeah. All day feel like I’m missing “something”. Oh, yeah…missing kids. The Dexcom Share is showing me what is happening at every moment. I’m not sure that’s a good thing because it gives me a reason to wonder what the heck is going on over there! For two years we’ve been using the MyCare Connect’s BlueLoop app on our iPhones. I see insanely weird decisions being made on useless one-hour dual waves that don’t work (did they see later that it didn’t work?) Basal reductions during lows that aren’t long enough, or weren’t enacted fast enough to make sense (don’t they know that a basal change takes hours to have an impact?), treatments for activity that aren’t going to be enough (and can you get rid of that damn trampoline already, please?).

There’s conflict. Sometimes I call and chat with her in person, asking her if she could explain what she’s doing so I can understand it better, and oh, hey…have you considered doing it differently next time? I’ve wanted him to call, asking for help when he’s confused. He won’t. He’d rather call the hospital with a question than ever call me. It’s really a shame. She feels she can’t speak up, especially after an early suggestion of calling me during a crisis was shot down. She’s 15 now. I want her to pick up the phone on her own and call me and ask me for help herself. It won’t happen because it feels like betrayal to him, even though she knows I’ll give her sound advice. I do worry dealing with diabetes in two different house, with two different management styles only confuses her. When I let this get to me, it’s a struggle to remember I’m making a difference in her life. I’m there to lean on and this two house thing is a hardship, but it might even make her a stronger person. All the trips into the world where she’s doing it herself, reporting in via Blue Loop and text and now sharing info on Dexcom Share (Hey, Mom, you looking at my numbers right now? You see that?) will serve her well in the future––well after the routine of accountability has become as much a part of her as her bone marrow.

It sucks. Pure and simple. I didn’t get married and have children to eventually get divorced and have to share my children and deal with a chronic disease while in chronic discomfort. Any divorced parent sharing time knows how crappy this part of life is. And I could throttle the women in my life who tell me how lucky I am to get the breaks I get. Are you kidding me? You try that every weekend of the year while you grow your child and tell me how lucky I am. You’ll eventually cry and beg for your children back. I worry for the parents out there who are on this journey as single parents, even though there seems to be more support for the single parent managing diabetes care than there does for the divorced parent managing diabetes care with another parent who on their time make different decisions. I want to see more in the DOC about support for divorced diabetes management.

I’ll have to remember golden-boy’s reminder as I go through my day, knowing I get her back tomorrow and can start anew.

Enjoy this photo of our Ohio River. While I can’t do much about how she’s cared for today, I might as well enjoy some Me and He time on the water.

This is our boat Fiona.  This is our river. We're hoping for company, and no need for that camper package.
This is our boat Fiona. This is our river. We’re hoping for company, and no need for that camper package.



The things we forget

Back in the beginning of August (Angels singing), our Sweets went off to diabetes camp. I was so chill about the whole thing and said to the doctor in her cabin, ” CHANGE what you’ve got to change. You’ll learn soon enough that she’s super sensitive to activity and those basal rates and carb ratios she walked in with will be a thing of the past.”

Fast forward TO pick up AND we take a look AT SOME NOT-so-horrible lows, which are really NOT-so-great lows FOR running ALL over God’s green earth with wild abandon. There were a few late night runs to the med tent too, and much worry over being sent home. A change was made. We were told. We got this nifty paper. We were told that we should hang tight for the next day “just TO be sure.” And, we decide right then and there that a tough week of high school band camp was coming up, so we’re better off keeping those changed basal rates.

Then we forgot. Completely took the train TO forgetfulville AND decided TO stay there. UNTIL today. LAST night I was up doing temp basal increases, AND pushing units LIKE crazy. I think I went TO bed around 3:15. AND IF I hurry WITH this post, I might beat that TIME tonight!

Today,RIGHT BEFORE dad comes FOR our Friday night kiddo transfer, I say, “Hey, let’s review those basals AND make SOME changes FOR that 3am spike. So tell me what midnight is.”


“WHAT!?” Are you sure that wasn’t .9? Aren’t you supposed to be .9 at midnight?”

“OH, GOD MOM. Camp.”

So, there you have it. Crazy, stupid busy schedules lead TO crazy, stupid busy brains that forget. You’d think that any one of the four of us would have caught on to this quicker.

Week 1 post camp: High school band camp from 7:30 a.m – 11:00 p.m. + girly business going on. Highs. Mom spends 10 brain twisting hours a day working in the band hallway and fitting uniforms on 110 incredibly stinky kids.

Week 2 post camp: High school starts. And, I feel like I’m sending enough paperwork IN FOR twins OR triplets. Yeah, triplets IS more LIKE it.

Week 3 post camp: Numbers are better, but let’s not get comfy in the 200s shall we? What the heck is going on? Look at that spike! Push, push, push the insulin.

This is diabetes. A flawed system of diabetic variables, care-giving, and trying to rely on having ” WITH it” brains that just…aren’t. 

Tomorrow IS another day.