In Which I Realize That Yesterday's Post Was Inconsistent

I received a little blowback about yesterday's post, in which I first stated that we shouldn't judge ourselves or others by an A1C and then proceeded to share generalities about how great my daughter's A1C is. Maybe it's because I wanted to finish the post quickly due to afternoon obligations and didn't spend much time rereading my post before publishing it, or maybe it's just because I'm a human being who makes mistakes, but it somehow did not occur to me that these two things were somewhat contradictory.

I still think the post, especially the first five paragraphs, has value, so I've left it up. However, I wanted to elaborate today on what I was really trying to say.

The A1C is a data point that gives a snapshot of your/your child's blood sugar control over the past 2-4 months. It can give you and your medical team an idea of what to do next. However, it has no bearing on your value as a person or as a parent.

Yes, there are actions you can take that increase the likelihood of a lower A1C. The dynamic management style subscribed in Sugar Surfing is one. Following a lower carb diet is another. However, no matter what methods you are using or are not using, managing diabetes is hard and there will always be a ton of factors affecting a person's blood sugar control, many of which are outside of your direct control.

If your child is starting puberty or going through a growth spurt, blood sugar can be particularly hard to control. There's no reason to beat yourself over the head if your child's A1C goes up in such a situation. It's simply a data point that shows you're still learning how to navigate within the new parameters.

Yes, it's true that many, many years of high blood sugar, indicated by high A1Cs, can lead to diabetes complications. Here's the thing, though. One high blood sugar, one high A1C, or even years of high A1Cs will not inevitably turn on the "diabetes complications" switch. There are a ton of factors, not all of which are well understood.

Both my father and my father in law have type 2 diabetes, and they've had it for similar lengths of time. My father in law is more careful about what he eats and has often had lower A1Cs. However, my father currently does not suffer from any complications and my father in law does. Diabetes doesn't play fair.

The good news is, there are treatments now available or being developed that can mitigate some of the complications of diabetes. Plus, there is data showing that good blood sugar control can halt and sometimes even reverse complications that have already started. All hope is not lost, even if years of high A1Cs and judgment for them have made you feel like a bad diabetic or a bad D-parent.

One of the reasons I left a Facebook group I used to belong to that advocated (with well-meaning intent) for tight blood sugar control, was the disregard so many members of the group had for the fact that diabetes is different for everyone and that the tight control they had on their child's blood sugar might be more difficult for someone else. I also got tired of reading statements like, "I keep such tight control because I want my daughter to keep her pretty little toes." The implication being that, if you don't consistently have tight control of your child's blood sugar, they will inevitably lose a limb in adulthood.

Here are some final thoughts on A1C and on sharing that data. In the beginning of our diabetes journey I shared a couple A1Cs on my Facebook feed. I decided later on that that was inappropriate in large part because it's not my data to share. While Kittygirl is fine at this point with me sharing about her diabetes, there's no good reason for me to create a digital cache of her private medical data.

This is different for adults with diabetes. If it's helpful to you to publicly share info about your A1C, either because you've been working hard and you want to brag, or because you've been struggling and you want to ask for help or just to get validation that you're not alone, share away. It's your own data, and it's your choice whether you want to share it.

Personally, I have chosen to only share actual data about Kittygirl's diabetes in personal conversation with a very limited number of people. If Kittygirl at some point in the future no longer gives me permission to do even that, I will stop.

I've read through this post a couple times now, and I'm pretty sure there are no contradictions, but I'd love to know what others think about this issue.

For your viewing pleasure, here's a pic of Kittygirl enjoying the snow we got yesterday - without a jacket and with her diabetes supply bag in view. She doesn't even know what her latest A1C was, and she doesn't care.

In Which My Daughter's A1C Is Not a Grade

Kittygirl had her quarterly visit at the endocrinologist office yesterday. She actually doesn't see a doctor, but rather a nurse practitioner within the practice with an endocrinology specialty. We had a personality clash with the doctor to whom we were initially assigned (purely because she was on call when Kittygirl was in the hospital), and a local friend recommended the nurse practitioner, whom we love.

Because I can't post a picture of Kittygirl, I'm sharing a picture of the book she was reading during the appointment. As you may remember from previous posts, I have been frustrated by the fact that, while she reads very well, she only chooses to read if a book catches her eye and most of those books are graphic novels. She picked up this little book at a Little Free Library box near her school (these are great, google them if you don't have them in your town) and literally refused to put it down from that point on. We had to pull it out of her hands so she could be weighed and talk to the nurses.

Anyway, based on my completely unscientific research consisting in the reading of blogs and Facebook posts, it seems as if a lot of adult T1Ds and parents of young T1Ds dread every endocrinologist visit. Many people feel judged by their endocrinologist if their blood sugar results aren't meeting the goals that their doctor has set.

This is a tragedy. Of course, it's best for a type 1 diabetic's A1C to be as low as possible without significant incidence of low blood sugar, and it's important for those using CGMs to continue to increase their time in range. However, it's never right for a medical practitioner to make patients or the parents of juvenile patients feel bad if they're not meeting these goals. The A1C and time and range are data points. If they're not where they should be, that's a call for the doctor and patient to work together to figure out how to change dosing, eating, activity, or whatever is necessary to move close to the goal.

The one case in which it might be permissible for the doctor to react negatively is the case of a patient who has stopped taking insulin regularly and is seriously putting their life at risk. In this case it could be permissible to attempt to "scare the patient straight." Even in this case, however, the subject should be approached with compassion and not with anger.

Despite consistently achieving an A1C that impresses our practitioner, I refuse to look at the A1C as a grade that says we're good diabetes students. The fact is, we started with a lot of advantages. We're able to afford the latest technology. We're intelligent and well-read and did a lot of our own research that has helped us manage Kittygirl's diabetes. We're not afraid to step out and make our own decisions about diabetes (with the blessing of our practitioner). Not everyone has had our experience.

Some people are struggling just to afford the basic insulin and blood sugar meter. They may  not even have a prescription that allows them to test their (or their child's) blood sugar often enough to understand blood sugar patterns and make adjustments. Or perhaps their doctor's protocol doesn't take into account the most recent research but it's the only doctor in their town and it's not within their resources to look elsewhere.

With the exception of people who are burnt out and truly not caring for themselves well, every adult with diabetes and every parent of a child with diabetes is doing their best with the resources they have. In this context, I believe that comparing A1Cs is counterproductive. Whether you're sharing your/your child's amazing low A1C to celebrate it or sharing your/your child's high A1C to commiserate, it doesn't actually do anyone any good.

Diabetes involves a lot of data. That data, including the A1C, is a useful tool to help us figure out our next steps. That might mean continue to do what you're doing, or it might mean you need to make some changes. Either way, sharing your/your child's A1C on Facebook isn't going to help you with that.

In Which the Diabetes Community Is Amazing, Except When It Isn't

People often look back on the day of their own diabetes diagnosis or that of their child as the worst day of their lives. However, if you dig down just a little, you can discover an amazing silver lining around the cloud of diagnosis: the diabetes community. The diabetes community is known as "the best club you never wanted to join."

We discovered that quickly when an old friend whose husband and two children all have type 1 drove over to our house the night Kittygirl was released from the hospital to give us a copy of her daughter's 504 plan so we would have something to work with when Kittygirl returned to school.

I quickly got on Facebook and found a local group for type 1 diabetics and parents of type 1 diabetics, as well as a slew of T1D parents groups with members from around the country and the world. These groups were invaluable at first as I had a lot of questions that either weren't answered well by our doctor and CDE or weren't true medical questions that needed an answer from a doctor or CDE.

Before someone is tempted to sue me, I should note that one of these groups give actual medical advice. They share things that have helped them or their children achieve more stable blood sugar, deal with the diagnosis, handle anxiety, etc. They can very helpful in particular for parents who are lost amid all the medical information that was thrown at them at the time of their child's diagnosis.

Initially, I found a lifeline in these Facebook groups. I found a lot of great advice on them and a lot of support and camaraderie. Sure, there was conflicting advice from time to time, but I pushed that aside. Over time, however, many of the groups started to annoy me and even cause me stress.

One group was staunchly against low carb diets for children and the admins were sure that anyone who did such a thing would stunt their child's growth. The same group promoted the idea that wild blood sugar swings are just a part of living with T1D and staunched anyone who wanted to talk about another way to manage the disease.

Another group, focused on a particular style of dynamic diabetes management that I won't name right now because I'll soon be writing a review of the book that informs it, seemed at first to be extremely helpful and right up my alley. However, the admins didn't accept the idea that the advice they gave wouldn't work for all kids at all times. For instance, when I tried to argue that, in my daughter's case, rice does not act like a fast acting carb that just needs a good prebolus but rather causes hours of high blood sugars that are hard to get down, I was shot down and told that there must be another factor I wasn't considering. The fact that I had experimented with plain white rice and had the same results was not considered. And don't even get my started on the bagel blood sugar debate. Suffice it to say that, if you didn't accept the word of the admins as the last word, there was little point in asking for advice.

A third group was my favorite for a long time, but I eventually got tired of all the extremely reactionary parents posting things like, "My child's blood sugar was 74 last night and I saved his life with a juice box!" 74, in case you don't know, is officially an in range blood sugar, though it is below the target of 80 given by some endos for children. Or people, years into diabetes, would post about how it had ruined their lives, they never let their children go anywhere, and they were terrified to even let their child out of their sight for fear they might have a catastrophic low blood sugar resulting in immediate death (severe hypoglycemia really can kill, but that's exceptionally rare). There were voices of reason trying to convince these parents that life could go on, but they were the exception.

I began to regularly complain to my husband about all three groups. The second group, in particular, caused me no end of stress because, though I faithfully applied all of their suggestions, I could not consistently achieve the smooth blood sugar graphs that they were posting. Mr. Engineer gave me an ultimatum: if I couldn't stop complaining about the groups I needed to leave them. I reflected on that and realized that my life would be a lot less stressful if I just made a clean break with all the groups causing me stress. I left every diabetes Facebook group (and I belonged to several I haven't mentioned) except my local one and one for the Friends for Life Conference, which is a benefit of the diabetes community for which I have not found a drawback.

The Friends for Life conference is sponsored by an organization called Children with Diabetes, but, despite the name, it is a conference aimed at people of all ages with diabetes along with their families, as well as being open to healthcare professionals who focus on diabetes.

The flagship conference, and the only one we have attended, is held in July at the Coronado Spring resort at Walt Disney World. Now, I'm a huge Disney fan, but the fact that the conference takes place on Disney property is only a tiny part of the amazingness of this event. I learned about FFL, as it is nicknamed, during the spring after Kittygirl's diagnosis and immediately wanted to go. Mr. Engineer talked me down and suggested we look into it for 2018. He took some convincing because the conference is expensive (scholarships are available), but we finally decided that just Kittygirl and I would attend in 2018 because the dates conflicted with Boy Scout camp.

I came in thinking FFL would be a good experience, but I didn't expect it to be as amazing as it was. The educational sessions were amazing and I learned a lot. Kittygirl had fund in the sessions just for kids her age and learned a bit. However, the very best thing was just the overwhelming feeling that we weren't alone in our journey with T1D. Everyone at the conference lives with T1D in some way, either as a T1D themselves, as the family member of one, as a healthcare professional specializing in T1D, or sometimes two or three of these. I've never been embarrassed about checking Kittygirl's blood sugar in public or giving insulin, even when she was on injections, but it does feel lonely sometimes being the only one who has to do that. At FFL, there are always several people at the table checking blood sugar, giving insulin, treating a low blood sugar, etc.

We even made a handful of "friends for life" at our first conference - people we're still in touch with regularly and eagerly looked forward to seeing in person again at the next conference. Kittygirl made two good friends - another girl with T1D and a girl who is the sister of a T1D. The former girl just happens to live in the same town as my cousin, and we were able to see her and her family right after Christmas of 2018.

Because of the expense, I had initially promised Mr. Engineer that I would not ask him to attend the conference more than every other year. I immediately went back on that promise upon returning from my first FFL. After much debate, and a stretch of caregiver burnout for me in the spring of 2019 (more on that another day), we decided just over a month out that the whole family would attend FFL Orlando 2019, which was the 20th anniversary of the original conference.

I was a little nervous that Squirrelboy would feel out of place as the sibling of a T1 and not a T1 himself, and the Mr. Engineer wouldn't love FFL as much as I did and think I had overhyped it. However, I had no reason for worry on either count. Both of them loved it. In fact, Mr. Engineer said he loved it a little too much because he didn't want to pay or take the vacation time to go every year, but he really wanted to go back as soon as possible. Squirrelboy had an amazing time in the teen track and one speaker in particular was a big part of the reason he elected to join the journalism club at school this year, which has been an amazing experience for him. In fact, Squirrelboy loved FFL so much he keeps asking when we can go back and is pressing us to attend the conference this spring in Indianapolis because the next Orlando conference conflicts with scout camp again.

Of course, the diabetes community doesn't only exist online and at conferences. We've also gotten to know a handful of local families with T1D kids. Some we've met at JDRF sponsored events. One I met through one of the groups I later left. Another we randomly met at the Y. My daughter noticed the other girl's Omnipod insulin pump and insisted that I had to meet her mom and set up a playdate. In addition, I've enjoyed reconnecting with my old friend (the one who dropped off the 504 plan late at night), who has given me lots of valuable advice from her vantage point a couple years ahead of me on the diabetes parent path.

If  you're a T1D or a parent of one and you haven't found your tribe within the diabetes community, in person, online, or both, I encourage you to reach out. Despite the fact that they caused me stress, none of the Facebook groups are bad in and of themselves. If you find a group you love and it doesn't stress you out, embrace that. If you meet another T1 family "in the wild," ask to exchange contact info, even if it feels stalkerish to you. The worst thing they can do is say no. Having type 1 diabetes or having a child with type 1 diabetes is hard and can be very stressful. The diabetes community makes it suck significantly less.

In Which I Attempt to Explain What I've Done to NOT Screw Up My Kids So Far

When wasting time on Facebook instead of doing something useful like dusting my house (don't ask me when I last did that), I often run across articles detailing how hard it is to raise good, honest kids these days. Society has gone downhill, they say. There are so many temptations and opportunities for kids to grow up way before their time. There are 8 year olds running around with smartphones and accidentally happening upon porn. It seems that often the conclusion is that you either need to homeschool your kids, never give them phones, and keep them away from those things for as long as possible or you need to give in to the inevitable and try to minimize the damage. We've managed to find a middle way with our kids (at least so far), and an incident that happened regarding Squirrelboy last night and into this morning has compelled me to write about that. Even in this fairly anonymous space I don't want to share the details of this incident. The basic outline is that it was communicated to Squirrelboy's principal that he was the instigator of an event of which he was actually the reporter. The incident took place outside another high school, to which Squirrelboy takes a bus in the afternoon to transfer to a bus to our neighborhood. Thanks to a lot of phone calls made by both me and Mr. Engineer last night and by Squirrelboy's principal this morning, the truth was sorted out by 8am when his principal had scheduled a meeting with all of us. Squirrelboy received a fervent apology and the principal is committed to finding out how the message was transmitted so badly and what needs to happen districtwide so that another good kid doesn't end up getting blamed for something he or she bravely reports. What really struck me during the meeting, however, was that both the principal and the vice principal told us that, when they heard the allegation, they knew Isaac was not the kind of kid who would do that. This is his first year at this school and school has been in session for just over a month, so I think the fact that the administrators of his school already know he's a person of good character says a lot about him. I know he's a good kid, of course, but I'm his mom. I'm biased. We're not done raising him yet, but I think the fact that we've gotten him all the way to 14 and both people who know him well and people who are just getting to know him comment on his good character is an accomplishment worth noting.

So what did we do? I'm actually going to start with what we didn't do. We didn't let him watch whatever movies and TV shows he wanted to watch, even if it seemed like all of his peers were watching them. We have always carefully curated the media both he and his sister are exposed to. And by that I don't mean we decided upon a particular rating level we wouldn't let him watch. When he asked about watching something, we would read about it and, if we were still unsure, we would watch the first episode with him. For example, he started watching Downtown Abbey, which is rated TV-14, at 11 because he was very interested in this historical aspect and we decided the positives of what he could learn through the show outweighed the negatives of the occasional mature content. However, the rule was that either I had to have watched the episode previously or we had to watch it together. That enabled me to talk through the mature content with him either as we were watching an episode or before he watched it. He's watched a carefully curated selection of R rated movies with a parent (sometimes with a scene or two skipped over) because we believe those movies held an important lesson for him. However, there are some popular PG movies that he hasn't seen and will have to wait until he's an adult to see and can make his own media choices because we don't think he needs that garbage in his brain. Another thing we didn't do was let him play a lot of video games. He went through a brief obsession with Minecraft, but even then we tightly controlled how much time he could spend on Minecraft and made sure it didn't supersede his other interests. He is now completely baffled by the fact that so many of his peers are obsessed with video games. We also didn't get him a phone until he was in 8th grade. Even then, we didn't give him internet access on the phone until he could make a good case for needing it for a practical reason. We still only let him use preapproved apps and don't let him watch YouTube or other videos on his phone. We haven't let him get any social media accounts, even though most of his friends have had them for years, well before the official internet age of consent of 13. Keeping him off social media takes away one potential bullying space as well as one potential space for being exposed to content we believe is inappropriate for his still developing brain.

Our parenting hasn't been all about negatives, however. One important thing HAVE done is spend a lot of time with him. That's easy for me since I've been a stay at home mom his whole life, but Mr. Engineer always makes spending time and making memories with the kids a priority (often to the detriment of projects around the house getting completed). We've instituted a family culture in which honesty and integrity are valued. We read to him (even now that he's a high schooler) and we talk about what we read. Sometimes characters in books have a lot to teach us, either because they made the right decisions or because they made all the wrong decisions. We also talk to him about why we aren't letting him watch or listen to or play some things his friends have told him are totally awesome. We talk to him about the kind of man we hope and pray he grows up to be and how we hope the way we're parenting will help him become that kind of man. We also take him to church and Sunday School, but we don't leave his religious education to the church alone. We read scripture with him and pray with and for him. We talk about how our faith plays a role in the decisions we make. His good character isn't only due to what we've done, however. Another important aspect is what he has learned through his involvement with the Boy Scouts of America. Mr. Engineer is an Eagle Scout, and the values he learned through scouting stay with him today. He wanted the same for Squirrelboy, and Squirrelboy joined a Cub Scout pack (with Mr. Engineer as his adult partner) in first grade, the first year he was eligible. The BSA motto includes a promise to keep oneself "physically fit, mentally awake, and morally straight." The BSA law states that, among other things, a scout is trustworthy and loyal. Unfortunately, there are people who go all the way through BSA and even sometimes people who serve as leaders who don't truly live these principles. However, Squirrelboy has had an amazing experience with adults who really want the boys to understand and live the motto and the law. I think with our family dynamic Squirrelboy could have turned out just as honest and trustworthy as he is without scouting, but his scouting experience is a wonderful complement to what we're doing and has helped him learn to live out principles we believe in even when he's not around us.

Poor Kittygirl has been basically ignored in this entry. She's only 8, and there have been fewer opportunities in her life for us to see what we're doing right. However, the thing I'm struck with about her is that she's a really good friend. We must be doing things mostly right with her as well when I hear from other parents at her school that she's kind to everyone and everyone likes her. We're raising her in about the same way as we raised to her brother, though, to his chagrin, we've loosened up a little bit on the media part, due in large part to the fact that she's not as sensitive to scary or violent elements in movies as he was at her age. It's also due, frankly, to the fact that we've wanted to see the new Star Wars movies with the whole extended family as they came out and we couldn't exactly leave her back at Grandma's house on her own :).

My kids aren't perfect, and I've made plenty of mistakes as a parent, some of which I may detail in later entries, but there's a lot of evidence stacking up that it really is possible to raise a good kid in this day and age without keeping said kid in a bubble.

In Which I Explain Why This Post Was Almost Never Written

This blog almost died right after the first entry. Why? Because my logical husband made me question if what I'm doing, in writing about challenges my kids have, is ethical. Why do I have a right to post publicly about people other than myself? I thought I was doing the right thing to protect their privacy by not sharing their names or pictures, but then the pointed out that I had shared my name and picture, and that, with that info, someone could fairly easily identify them. I understood his point, but I was also annoyed that, when I shared that I had finally taken a step to do something I'd been dreaming about for years, his first reaction was to question if I was doing the right thing. This is especially important for Squirrelboy, since he is at an age where he's very sensitive to the way his peers view him, and he's not so many years from applying to schools and/or jobs, to which he may or may not want to reveal his disabilities.

Ultimately, since I'm writing this second entry, you can probably figure out that I decided to press on. I did, however, remove my  name and picture from the blog. So I ask that, if you're reading this and know me (which is everyone who reads this at this point), please feel welcome to share this blog widely, but remember not to share our names. I feel it's acceptable to continue in part because I've also cleared it with my family. As long as I keep them anonymous, they're okay with being written about on this blog.

This does bring up an interesting point about our society. When I was growing up in the 1980's, as a general rule, only people you'd actually met in person and saw fairly often knew about your day to day activities. You might tell your best friend or neighbor about the funny  or weird experience you had in the grocery store, but you wouldn't write something about it for hundreds or thousands of people to read, some of whom you'd never met. That is, however, how many of us (myself included) use social media. I don't think this is all bad. Facebook has allowed me to maintain relationships with people I would otherwise have completely lost touch with. However, it has also created a weird category of people I know slightly (fellow church members, for instance) and would normally not have a close relationship, but whose lives I know a surprisingly large amount about. I might not ever hang out with Sally from Sunday School, but I know her sister in law came over for a barbecue last weekend, she's looking forward to a trip to Disney World in October, and she supports universal background checks for gun sales. Sally is, in case it isn't obvious, not a real person, but Facebook "relationships" like that are very real. It's weird to have a window into what people are doing and what they feel strongly about when in any other context you don't know them well and they'd be unlikely to share that information with you.

Reading a blog written by a stranger or an acquaintance is like that too. This person you don't know or hardly know is giving you a window into their thoughts and/or lives that previously only have been given by a tiny subset of people who write memoirs. I have considered writing a blog for a long time, however, because I think there's at least as much potential good as potential bad in this somewhat strange circumstance that our society has created. During various points of my life, reading blogs related to a struggle or challenge I've been going through has been immensely helpful to me. Sometimes because the blogger had things to teach me and other times because it was helpful just to know that I wasn't the only one who had ever had these experiences or felt these feelings. I'm writing this blog in large part for myself, because I'm seeking a new way to express myself. However, I also hope that my thoughts and experiences can be helpful to some of my readers, whether they give practical advice or strategies or they just give reassurance that you're not the only person who has these feelings and these experiences.