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.

When She Is Away with He

EVERY summer my She’s go ON vacation WITH the entire He’s family TO a rented house ON a beautiful lake. It’s an easy, breezy, fun WEEK of boating, tubing, food, games, walks AND laughter. It’s a vacation I enjoyed FOR many years BEFORE the pain of separation entered our lives. The FIRST YEAR my She’s went without me, they were a tender 7 AND 5 years old.

When Diabetes hit the scene midway through my little She’s 11th YEAR, we knew our biggest challenge would be taking diabetes ON vacation. TO a lake. ON a boat. WITH NO WiFi. One MONTH post diagnosis the plans were SET AND the house was rented. The WEEK was written ON the calendar IN pen. We had a mere six months TO prepare.

Six months, AND I was scared shitless.

Early ON I was awarded the role of captain of the D-team, our parental tripod. It made sense. It was what I wanted TO DO, TO be.   AS luck would have it, my husband AND I were thrown INTO Diabetes Hell (capitalized FOR effect) over AND over WITH illnesses that cursed our She. We learned about emergency diabetes response quickly AND He wasn’t given the chance TO learn through that experience.  Sick kids want their mommy. So, IF they were ever sick AND it was TIME FOR a transfer TO Dad’s, they simply didn’t go. AND, certainly WITH diabetes, She just didn’t go. AND, IF they got sick AT his house, they would come back TO mine. His YEAR FOR Thanksgiving AND there’s an illness? I stay home cleaning puke buckets, oozing love through cuddling AND administering medicines IN a timely fashion. This IS NO fault of his, it’s just the way it is.

Since me AND my husband are huge proponents of the benefits of professional counsel (he has his very own head-shrinking degree), we made an appointment FOR a pediatric psychologist, who also happened TO have a certification IN diabetes education. AT the TIME I didn’t know we had hit the jackpot, that there were only two handfuls of them IN the United States. I liked her well enough AND so did the kid, so we ran WITH it. This was three months post diagnosis. Early ON we worked IN the “getting TO know you” phase AND pinpointed major areas of concern. My husband AND I were generally SET free FOR a WHILE so emphasis could be placed ON the He who wasHAVING difficulty embracing concepts of diabetes management.  It’s NOT easy WHEN one parent learns AT a faster rate THAN another parent (even IN a single house family). The light IS shone ON the one who isn’t quite catching ON, AND rightfully so. Everyone isn’t expected to be on the same page, but the expectation of safe management was a priority. Managing diabetes in two houses with people who were embracing diabetes at different rates is exhausting – for ALL parties. But, I had faith in our person to lead us down a good path, and she did.

For a full three months, work was done on preparation for this vacation. There were other things at play, such as our She being the baby of the family and not having a cousin remotely close to her age. She spent many years being thought of as a pest, while her sister wasn’t. It was an unhappy, happy time.

She didn’t want to go now that she had diabetes on board. She didn’t trust the situation and while we worked frantically to make a safe plan, I’m not too sure I did either. But she went. And I was scared shitless, but I had been on that very vacation for years, so I could sit and picture it and know what the daily routine would be. I swear if I jumped back into that vacation it would be seamless as if nothing had changed. But still, there was fear, and tears and prayer. Lots and lots of prayer and trying to trust. The six vacations apart had now become a blessing and all seemed to be going according to plan (other than the scared shitless thing on my end). Until I found out the plan we had put in place wasn’t being used in the most vulnerable of areas – Treatment For Activity. “Double the dose of treatment for activity and don’t forget to reduce the basal”.  I was here, they were there. No WiFi meant no Emergency help.  WTF?? What about those three months? Are you a complete idiot??

The answer to that is NO. It took me years to accept that answer as NO.

You can learn. You can plan. And when you take that plan and plop it into a busy, scary, loud, vacation with a bunch of fun-loving crazy people, you can get flummoxed and lose your head, forgetting all about the plan. I know then that I didn’t handle myself well. I remember I couldn’t get through to the house line and wound up calling my lovely sister-in-law of years past and anxiously, probably angrily, asking for the phone to be passed to him. I’m not sure I called him an idiot, but if I’m being totally fair, I probably came close. Or, oh Hell, let’s just say I probably did.

Sidenote: At this time the family members really didn’t understand the ins and outs of diabetes management, MDI, the honeymoon phase, her extreme sensitivity to activity and what administering Glucagon on a boat in a remote cove on a ginormous lake would look like. I knew. I simply KNEW. I painted the picture for him and think that image hit home.

She came home from that first vacation with diabetes on board and a depression that eventually led to suicidal ideology hit her hard. It was too hard. It was all just way too damned hard for all of us. This is where our psych/CDE really started to join our family. Together we kept her out of the hospital, she made it to middle school and the light shone bright again. And, as the vacation for the next year hit the calendar, we started earlier and worked harder than ever to assure her it would be okay. As we made changes to the plan, we were sure to include the learned tips and tricks to keep depression at bay.

As I write this post, they are at the lake. This is lake vacation number three with diabetes, and nine without me. (Can that really be?) Times have changed. She is there with her #Medtronic pump and her #Dexcom CGM (Share? There? Uhm…WiFi?). She is also there with her BRAIN. She is there with so many experiences that have given her the confidence to make good decisions in self care. And He is there, knowing more. And THEY are there, knowing more. He still takes the time to go into town where there is WiFi and records all of her numbers in the MyCareConnect BlueLoop application that I see in the form of texts and also on my computer. This is our accountability that we have grown to expect on a daily basis, vacation or no. He gets the job done.

Phone calls every night no longer consist of review of events, numbers and THE PLAN.

Am I still scared shitless? Is she still on my mind? A little here and there. A lot here and there. But at least I know there is diligence in the actions that are being taken, and that makes all the difference in the world. Even though I think I could do the best job (I’m mom after all!), He is still doing a good job. And She is doing an AMAZING job as she slowly takes over for the both of us.

Rock on, little She.



This is just one experience of our trip to Florida to be with our people. I’ll be writing about other experiences from Masterlab and FFL in coming posts.

Masterlab, organized by the Diabetes Hands Foundation (DHF), is a program filled with experts who are immersed, on various levels, in a life of diabetes advocacy. The audience were those of us who feel a call to be more involved, are already involved but need a refreshing nudge, or those who are in the thick of it and getting good stuff done. It is held the two days prior to the whirlwind that is Children with Diabetes – Friends for Life (CWDFFL).

This year I was fortunate to be at FFL early and could attend the sessions.  Many people choose to not advocate for diabetes because it just isn’t their thing. It’s been in me to be a person who routinely speaks up about what I feel is important or helpful in life, which could involve the endorsement of a great product/company, bitchin’ doctor, OR superb organization I appreciate beyond compare. Road ID AND Zappos benefitFROM my pushing their product AND customer service. FOR many years, our LOCAL clay community has benefitedFROM myHAVING been born aNATURAL publicist/public speaker/ EVENT planner, NOW I’m putting those skills to good use as a high school band booster president. (Reminder to self: one year down, one to go.) Communication for me is at the very core of who I am (which drives my family completely bazonkers), so is justice, and what I refer to as the “Girl Scout” way. Be prepared. Be fair. Get involved. Stand up. DO something. Sometimes when I get too wound up I have to remind myself to stop, sit down and shut up.

Quoted at #Masterlab:

“Our lives begin to end the day we become silent about things that matter.”   

Martin Luther King

That makes perfect sense in my world.

Since day one of my Pip’s diagnosis, I’ve not been silent. In the hospital, I started a care page to inform family and friends and bring awareness. I signed my kid up for diabetes camp, participated in walks, helped organize fundraisers at school, and joined a support group for families, But, I can do more and I want to do more. Over the last year I started this little blog (Free therapy!) and became more present in the diabetes online community (DOC) in reading and commenting on other people’s blogs, tweets and Facebook posts. I also make my way around organization’s websites and purchase t-shirts that speak for Me and She and many other dPeeps as I walk around the planet. This increase in connectedness has made me a better mom to my She. There are so many voices in the DOC that I had to search for and then settle on about a dozen or so that speak my language and turn my brain on. Or challenge me. I really love those.

One of the things I’ve noticed lacking in this community is a voice for those people who are trying to manage diabetes in two houses, and the massive amount of frustration that comes with the necessity of dealing with a person with which you found it impossible to live.  And, there’s certainly no voice for people who are doing it WELL.  My idea to be that voice in the DOC has been percolating for a while. It was at these sessions where I said it out loud and the observation of what’s lacking became the question, “Do I want to be that voice?” Others told me I was being called to action. Am I really? Are you sure about that? That sounds so “sticky”.

I’m still mulling it over. And with mulling it over, comes a myriad of questions. How? Divorces and breakups are messy; filled with anger, resentment and fear. Diabetes is messy and mostly filled with the same emotion. We loathe diabetes just as we can loathe an ex. We want to forget diabetes exist just as we’d like to forget an ex exists. I think about how difficult it is for me to now be in the presence of a person in pain from a breakup, because I naturally absorb some of that emotion and take it home with me. Do I really want to bring that kind of negativity into my happy life?

On the other hand, we can appreciate diabetes just as we can appreciate an ex. Maybe I’ll just start slow, with this blog, and spend more time concentrating on sharing what has worked well for us in future blogposts.

I wrote this note to myself sometime during a MasterLab presentation:

The first step in becoming an active advocate is believing enough in yourself to do it, and believing others will help you along the way.

Let’s get this thing rolling.




remember WHEN?

This IS easily one of my favorite questions asked WHILE IN the company of lifelong friends, because most “remember whens” crack us up so much it makes us look LIKE we are the most fun people ON the planet. EVERY few months OR so, aGROUP of my friendsFROM high school get together FOR lunch. Today, we met up AT our central- TO-most-of-us Don Pablo’s restaurant. It’s been an easy go- TO placeWHERE everyone can find something TO eat, AND who cares anyway, WHEN it’s the catching up that’s most important? The only thing that made us skip a beat was a toddler practicing her Freddy Krueger death-scene scream. One of my two kids did the same thing, so I joined several AT the TABLE IN giving a hearty thumbs up TO the mom AFTER we saw her hand raise TO cover her sweet angel’s mouth. Saying it was impressive doesn’t DO it justice.

I’ve known four of these knuckleheads since 2nd grade. We meet for lunch and talk about the stuff of life.
Two of these gents are here with me in this beautiful 2nd grade class photo.

We graduated in 1984. Lunches began right after one of the dudes pictured here had a massive tumor invading his frontal lobe. It was so invasive we were afraid to believe he could beat it. At the time of his surgery, we all chipped in for a comfy Lazy Boy recliner and as soon as he was cleared for the outside world, gathered together for lunch and memories. Those early years were scheduled around his brain scans. He was our glue. I never forget that part of the dastardly beast still resides inside his zippered noggin, and celebrate whenever we get news of yet another clean scan. Those beginning lunches made us realize that any one of us could fall, and getting together periodically to celebrate our lives was important. Over time, our lunches became about the other people at the table who were dealing with their own seemingly insurmountable issues such as; death of parents or friend, cancer, divorce, or in my case, a diabetes diagnosis.

On 12/16/11, lunch was on the calendar. Pip had been taken in for a nurse weigh early that morning (10 lbs lost!) and our appointment with the doctor was at 4pm. For normalcy, I left her at school and went home to pack a bag for the hospital. I didn’t need a definitive diagnosis. All that time on my hands was too much, so I turned to this group and showed up for lunch. Upon sharing my news (because I KNEW), one of the girls (not pictured above) blew it off, belittling the reality of what a life with diabetes was like. I thought about that today and it made me feel good to know I would have reacted in a much different way than I had back then…back then I said, ” NO, you don’t get it”, wanted TO smack her AND tried NOT TO cry. Luckily, one friend was a nurse (NOT pictured above) AND a SIMPLE sympathetic nodFROM her showed me she understood what we’d be facing.

Today, as I sat across from the beloved George Clooney of the group, (he’ll never read this), I reminded him that 3 ½ years ago I was sitting with all of them for lunch in that very restaurant on my Pip’s diagnosis day. GC was all, “Wow. I remember that day”, and I was all, “Yeah, uh-huh, wanna see something really cool?”

That’s when I pulled out my phone and opened my Dexcom Share app. This got the attention of the entire table. Showing them just how far the diabetes technology had come felt really great, and before everyone could go to the “Big Brother” aspect of Share, I interrupted with the happy part of how it lets us sleep at night with much less worry than we had for those years without it. And, for a parent of a TWD (teen with diabetes), that’s our biggest reason for using it.

He and I continued talking and I shared my excitement over the Children With Diabetes Friends For Life conferences that was days away. He asked a few questions about it, then marveled that one disease could bring about a convention of that magnitude.

GC (not even close to his real name) is an artist and designs toys for a living. With him being one of those 2nd grade friends we bonded at a young age over art, having been tossed together to work on art projects along the way. Our moms were friends and I have always been extremely fond of his siblings who we’d often give rides WHEN we saw them schlepping up the hill TO school. We have a CONNECTION that I’ll always cherish.

He recalled a high school teacher who used to badger the string bean of our group to tuck his shirt in. It reminded him of how string bean used to look when he showed up at his house ready to play. GC said, “Wait! Wait!” Then drew this…

This IS how string bean had TO wear his trousers.
This is how string bean had to wear his trousers.

I am sooooooo looking forward to flying to Friends For Life on Monday, to learn more about the world of diabetes and to reconnect with new friends I’ve stayed in touch with in the DOC (diabetes online community). I have one year of “remember when’s” with this group and look forward to loading up on more memories. I’ll take more LIKE these, please.


American Ninja Warrior Kyle Cochran and his "Angels"
American Ninja Warrior Kyle Cochran AND his “Angels”
Hi KK!
Green =  you have diabetes Orange = you love a person with diabetes
Green = you have diabetes Orange = you love a person WITH diabetes
Diet Coke's GREATEST spokesperson, Scott Johnson
Diet Coke’s GREATEST spokesperson, Scott Johnson
These people really know how to throw a party.
These people really know how TO throw a party.

Children WITH Diabetes Friend’s For Life? I’m gonna hold you TO that.








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.



Big Mother

Dexcom Share – Week One

This past year I’ve been interested enough to read about the #wearenotwaiting crowds’ experience with their CGMs and special rigs, the initial Dexcom cradle set up, and now the official Dexcom Share. As a mom of a teen with diabetes (why hasn’t anyone started the TWD acronym?), I had mixed feelings about seeing my teen’s data all the time, and know I’m not alone in this as there are other stories about watchfulness, like this Bigfoot experience.

It’s why we got the Dexcom in the first place. That, and the results at the time placed Dexcom in the top position on accuracy.

When Diabetes Specialty called to tell me that we were eligible for Dexcom Share, I was thrilled. I also took a moment to privately acknowledge this as one of the few times in my life as a type 1 mom where I was successful at practicing patience. The rough part of using the Dexcom Share is my kid “wanting” to wear it. Luckily for us, it came at the beginning of summer and was a condition of her being able to go to an amusement park without parental back-up camping out in the water park. It’s hard to let a kid go. It’s even harder to let a kid with diabetes go. I’m learning.


Enter info into the receiver as normal

Download the “Share2” app on the TWD iPhone

Download “Follow” app on the parental unit iPhone(s).


Keep receiver within 20’ of kid (I find it a little less)

Keep Share app running in the background on kid’s iPhone


Keep iPhones charged

Keep Dexcom charged

Keep brain charged


Looking normal. When out, chuck receiver in diabetes bag and hold iPhone to body with imaginary Velcro. Open Share2 app. Look at number. Look normal. Quick Snapchat friend, because teen.

Notify me
Notify me


Follow app has alarms you can set for highs and lows. Having the phone with all other notifications off other than Dexcom Follow, makes for a peaceful night’s sleep unless Share alarms. So far, this week all we are getting are low alarms. Because summer.

After a full day of play at the amusement park, she woke up to vomiting, moderate ketones, low BG’s and a low-grade fever. I’m convinced our normal Dex has saved her life several times in the overnight. No doubt Share will do the same, but also allows us to still see her numbers on our phones and get alarms on our phones as we’re packing a bag for a potential hospital trip, or scrambling in the green cupboard for the Zofran.


This is more of a worry than a hate. She’s all Wemberly about us getting on her back about her numbers. I assured her that ANYONE young like her, or a little older than young, is also worried about people getting on their case about numbers, but having someone you trust have your back wins every time. In growing my teens I often refer to Big Brother, as in George Orwell’s dystopian classic 1984, not the tv show. I read 1984 soon before I graduated high school in 1984. This novel stuck with me as I identified with it at a time when what I wanted most was privacy. I know as I grow my teens what they crave most is independence and privacy.

Trouble is, Dexcom Share gives her independence, yet takes away privacy.

I get this need in her and have been very good so far about not calling her out on numbers. I did offer one suggestion for her to try to navigate the coasters in the high 100s, not the high 200s. Soon after, I saw numbers come down. I was Big Mother in that proud moment, and my timing was perfect. I know some other time I’ll lose my shit and not be perfect. I’m sure there will be much more to read here about Share as time goes on.

This is the larger one we have and love love. Her’s is smaller but can be plugged in anywhere and will give her a full charge. I suggest she cover with Washi tape to make it her own.

Carrying a small brick like this to re-charge, instead of a cute thing.









She needs it in the first place.

Bye <— as to not end on a word count of 666. *shudder*

Wished-For Qualities in the Normie Friend

Watchful for signs and symptoms

Understanding when others are not

Adaptable when diabetes interrupts life’s moments

Appreciative of the gifts she brings into your life

Protective when you feel she needs it

Forgiving when she’s cranky from a low

Trusting that she knows what she’s doing

Listening when she needs to get things off her chest

Uplifting when you see she is down

Serious when the situation warrants

Supportive of her personal goals

Affectionate when she needs a hug

Quiet when words won’t help

Interested in learning about diabetes

Spontaneous at just the right moment

Comforting when diabetes is taking its toll

Active in diabetes advocacy

Aware that by being her friend, you are part of her team

Accepting of her strong connections with her diabetes friends

Knowing that diabetes is not about who she is, but rather what she has

Honest when you see her headed in the wrong direction

Fun when she could use a break from serious

Mindful of her daily diabetes routine

Level-headed when things go wrong

Distracting when she’s too far into her head

Present during the toughest of times

Celebratory when she’s reached a milestone

Thoughtful in your words and actions

Strong when her diabetes makes you sad

Hopeful that a cure will be found

Do I really want to know?

Yes. I do.


Growing up in a family full of issues made me who I am today – a person who does want to know.

Because of this need to know, I’ll never be laid back. AND I want TO know only so I can live longer AND healthier THAN my parents. Being around TO kiss grandbabies AND have the ability TO be present IN my daughters’ lives IS priority. IN this CASE, being a mom trumps love of husband. Since He has been IN my life FOR most of my life, I have a serene sense that I have accomplished so much WITH him, yet what I’ve accomplished WITH my kids IS still IN the infancy stage.

A few months ago I agreed TO the pharmacogenetic test my Endo suggested LAST year. What seemed indulgent THEN felt completely necessary this YEAR, especially AFTERHAVING spent nearly $1,800 ON big bad testing only TO find OUT I had a beautiful brain, boring eyes, AND poor hearing (butRIGHT ON cue FOR a person of my age). ALL because of a drug response.

I think the insurance company paid about $2,600 of the bill, AND I LESS THAN $300. It was through Genelex OUT of Seattle.

Look AT ALL that blue.

The findings? Gene mutation of the cytochrome CYP450. The CYP450 enzyme CYP3A4 IS responsible FOR metabolizing half of the drugs ON today’s market. I tested an intermediate metabolizer. Which IS woo! Great because I can still take whatever substrate IS listed, but Boo! Because EVERY doctor AND pharmacist has TO make sure I’m taking theRIGHT dose FOR me, AND we have TO look AT a LIST of inhibitors AND inducers. Every. Single. Time. AND will it really be theRIGHT dose? Are the findings that rigid OR IS it LIKE IN Diabetes – YDMV (your diabetes will vary)? Will I have TO guinea pig drug doses FOR the rest of my life FOR EACH substrate a doctor wants TO prescribe? AND, BY the BY, I DO try TOLIMIT those Rxs TO a manageable one OR two. I have TO carry a card next TO my insurance card AND pull it OUT AS proof TO ANY one of the aforementioned professionals.

The card’s front shows all of the CYP Cytochromes and that I have a high sensitivity to Warfarin and Cumidin. Thankfully there are other drugs out there that can help me in my older years if that pesky vascular genetic hiccup decides to come a knockin’. A cheek swab told all. I recommend it.
I’m elated TO know costs associated WITH unnecessary tests, AND an Rx that I eventually give up ON, will lesson greatly. AND I haven’t yet talked about less symptoms, which is Woo!  This information makes me feel renewed as if I’ve just spent the day at the spa, knowledge being power and all. So, it’s NOT great. But NOW I know, AND later it WILL. BE. GREAT.

And this! He took OFF a diagnosisFROM my chart. Elated! NO more diagnosis of mild Congenital Adrenal Hyperplasia. This test reveals that I don’t even process my own steroids! So, Spironolactone, to prohibit the overproduction of steroids. Because Adrenal Fatigue. Well, that’s NOT great, but AT LEAST I know that my body IS ON the S–L–O–W setting for life. More knowledge. More power.

This brilliant doctor also tested me for MTHFR and I do have mutation. Goody. This only means the L-methylfolate I’ve been taking since February will be a necessity for an undetermined amount of time. And just goes to show I should be concerned for my vascular health – which was already hanging on my family tree, which I’ve been aware of because watching all your family members die from vascular illnesses kind of sticks with you (remember the vascular surgery on both legs in Sept 2013?). Minor detail in life. But there, and I’m ON IT.


For years, She has been complaining of all over body pain. From Cross Country in middle school to lying in bed, to all day long marching band rehearsals, to walking through the mall. Everything hurts, and her ongoing, albeit subtle, complaints seemed never-ending. “Mom doesn’t this ankle look a teensy swollen?” But. She’s a card carrying member of the Lazy Teen Club. What to believe? I find I have to believe her as I have lived a lifetime of what I call having weak rubber bands. I live with dumb stuff like pulling a shirt over my head can tweak a shoulder so bad I’m in pain for a week. And where yoga every day = chiropractor twice a week.

But She doesn’t have fatigue. Lazy? Yes. For so long I thought all that teenaged immobility was the root cause of the ache. And after finally digging my brain out of the take-care-of-the-T1D corner, I press the pediatrician to take notice.

We land in Rheumatology at Children’s, lucky enough to get the kindest, most endearing doc who in fact is the clinical director, and has two daughters he just saw through the dreaded (but incredibly fun!) teen years.

You have all of the classic symptoms of EDS, or Ehler’s Danlos Syndrome, Benign Hypermobility. (The kid can touch her thumb to her wrist – go ahead, try it.) AND, you have autonomic dysfunction in the form of Orthostatic Instability. He says POTS, but my endo says, why not just call it what it is and forget this syndrome stuff. What follows and still follows is RELIEF. And EXCITEMENT, because of knowing the potential weight of this news for all of us.

The Big She has something.

And THIS! It sparked a thought in a friend! Hmmm. What was that doctor’s name again? My kid has all those symptoms. Which makes sharing our results worth it. Right? Helping people is sort of my schtick.

I wonder what I might be missing from someone who keeps quiet about such things?


My brain goes right back to the take-care-of-the-T1D corner and things start to click. And click. And click. And I know I’ll be bringing her back for a 2nd rheumatology opinion with this awesome doctor. At that diagnostic visit, I did ask if EDS and autonomic issues could be the reason my T1D She has certain responses regarding diabetes and he said yes. And THEN, found out a T1D friend of both big She and little She has EDS and Autonomic issues. And then I think of Me and how much I have spent on expensive tests, therapists, braces, Icy Hot, and Ibuprofen and Meloxicam, and Methocarbamol. Holy Mother of God.

I do more research on dysautonomia and see Me, Me, Me, Me, Me, She, She, She, She…which also means Her (my deceased too early mother).

My brilliant Endo has referred me to a new neurologist who was a former med school classmate, and like him, thinks outside the box. This man specializes in dementia, brain injury and will no doubt dive into the dysautonomia issues. I’d love an explanation that opens up an answer for my T1D as to why she’s whomped with fatigue and sensitive to activity like no other, and doesn’t process foods well. More genetic testing to follow. Hopefully, more answers that keep me alive longer, and give my kids answers in their teen years vs. their MY AGE years.

Do other mother’s check out at the back of the pharmacy and go into the checkout line in the front of the store with items already bagged and paid for, then hand the keys to her teenager to drive her home? I did. Just last week. Let’s just say it was during a few “bad brain” days.

Do I want to know I might have early stages of early onset Alzheimer’s Disease?

No. But yes.


The Contract

There’s no rule book for teens, just as there wasn’t a rulebook for babies or four year olds who whine incessantly. People warn you, and you just know you’ll be different, you’ll be a better, cooler mom than the person standing in front of you who rolls their eyes, offering up a long-suffering sigh when remembering their kids’ teen years. You. Will. Be. Better.

How could I think I was so special?

It hit us when Wink was in middle school. Our first She—anxious, mumbling, shy—rolled her eyes and fibbed nearly every day for years in order to go about her life without us on her back telling her what to do. I thought we were in it for the long haul, fully expecting the second kid to overlap the first with the same bullshit game. Somehow, we escaped with about a nine month gap. My oldest came back to me at 16. It was a miracle. And our trust runs deep, and we both know we’re in a good place. (Kid, I do hope you read this one.)
And in that time of turmoil, my younger She would look at me and say, “I’m so sorry Mom. I’m never going to be like that. I can’t believe she actsLIKE that.” AND sadly, I believed her. How could I have such whacked OUT expectations? I mean…REALLY? There were a few differences TO note. My oldest She does NOT have diabetes, AND the only kind of social she was IS called social anxiety.

My little She began her journey INTO typical teenage behavior sometime this year. IN retrospect, she transformed a whole YEAR later THAN I thought she would. I CALL it the diabetes delay. Just a YEAR ago her teachers oohed AND aahed over this child that I had made. “She should be SOME sort of counselor. Her perception of the world around her IS grown up. She has her finger ON the pulse of this life AND other kids walk around thinking they know, but she really does know the REAL deal. It’s so obvious TO our team” IS what I heard. AND THEN it changed IN an instant. The feeling of her pulling away was so great it knocked me off my vertical axis. Diabetes burnout has hit our family. There’s late boluses, AND possibly missed boluses (how would I know since she’s so sensitive to activity?!), no communication, no telling mom she’s spending the night at a friend’s house on Dad’s Friday OR Saturday WHEN mom IS THE go- TO person AT 4am TO answer IN a mini-crisis, diabetes-related plea. Dad doesn’t even answer the phone. And here’s a big one (HAVING had only one sister myself who FOR years did this TO me), stealing.

I’d love TO blame ALL this ON diabetes, but I know WITH 100% certainty that she’d be acting LIKE an alien even IF diabetes wasn’t IN the picture. AND, the consequences of her trying TO go through life LIKE she’s already ON her own, living IN a tiny apartment WHILE she finishes her doctorate degree, hit herWHERE it hurts the worst – socially. How can you say “ NO” TO a social outing WITH diabetes kids WHEN it’s them who give her the strength TO carry ON IN this life? It’s them who help her be less depressed, to feel more whole, to feel less alone. “No” comes with depression. Depression fosters poor behavior. Poor behavior leads to possible sirens. And when I take the time to let myself think about the diabetes aspect of her poor behavior, I know she’s been lucky.

After taking INTO consideration what SOME dyed- IN-the-wool experts IN the DOC have said, AND what we’ve learned IN the past YEAR IN our psych visits, AND chatting WITH a friend who gets it, but can’t fully get it because she’s only got one kiddo AND isn’t dealing with the big D in two homes, I decided to send an S.O.S. to our trusty psych. <– Cred to the aforementioned friend for the suggestion! My message to our doc went something like “Gah! She’s not playing the game! It’s getting worse. We’ve been through this and this and this and I’ve tried that and that and that and my face is so tired of being blue. She’s been lucky! Her luck will run out! I’m not doing enough. What I’m doing isn’t working. And how did we even get here? I’m the cool mom! I’m the ‘Tell me the truth and you won’t get into trouble Mom.’ I know, I know. The wings are sprouting and she’s testing EVERYTHING. But still. If change doesn’t come, those sirens surely will.

Said trusty doc calls me. And after a mildly long and comfortable brainstorming conversation, she hits me with The Contract. Oh, Doc. Your ability to pull tricks out of your toolbox so quickly makes me want to see it so I can oooh and aaaah at it and your brilliant perception of our world and what we need to do to fix it, or at least make it more bearable. I am to devise a contract that lists the Me and He and He rules we want her to follow, with some possible input from her of things we are not aware of when she’s out in the world. (Will she tell us anything? I wonder.) It will contain rules and then a set of consequences for when the rules are broken. We three parental units, plus teenager-going-on-30-something are to sign it, with trusty, beautiful Doc as our review process and mediator. (Kids: this is the reason I advocate for making a relationship with a pediatric psych even when you think you don’t need one. She knows us when trouble comes and quickly points us in the right direction.) We’ll use The Contract until she shapes herself up for a few solid months, and then let her go on her own to test it out. If she falters hard enough, a few more grey hairs show up and I feel that face turning blue again, we reinstate.

Here is a link to a certain Momma of a Type 1’s site where you can check out her book which contains the implementation of a driving contract. It’s a great read. And, while I agree with many things she recommends, she also can’t have a clue about what it’s like raising a teen who lives in two homes and has three parents. While there are many pluses to a parental tripod, the accountability, communication and confusion it brings is sometimes maddening. This contract will be our general rules, and when driving comes around (in a year), we’ll fold it into the contract. I suppose dating and sex will have to be a consideration as well.

Burnout sucks for all of us. Teenagers who pull away and test their limits also sucks. It’s normal, and naturally you put your foot down, give reprimands and take things away. But when diabetes is involved and scary shit can happen? You. Make. A. Contract.

This photo is our contract in infancy stage. I’m quite fond of remembering to add a Burnout Monitor section when it’s so easy to forget about as they grow in their diabetes. I’ll let you know how it goes…and maybe with permission post the full contract in the future. Stay sane out there.