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 paralysis from 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.
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.