In Which I Am Not Raising My Kids to be Colorblind

Where I grew up, being White and upper middle class was the norm. I went to school with a handful of kids whose families weren't as well off and an even smaller handful of kids who were Black, Asian, or Hispanic, but I don't remember having any real friends whose skin or whose lives looked significantly different from my own. I guess the one exception would be a friend who is multiethnic, but, with her pale skin, she looks more White than anything else and didn't stand out in our community.

I read a lot, and I was aware of slavery and segregation, but, if I thought about it at all, I imagine I figured that was mostly a thing of the past. I don't remember precisely when I first heard the term "colorblind" in the context of the color of people's skin, but it initially made sense to me. We're all one human race, right? The color of a person's skin shouldn't matter. 

My view began to change when I participated in a spring break urban mission experience during my freshman year of college. I was still pretty new to having claimed the Christian faith for myself, and working on figuring out what being a follower of Jesus meant for different areas of my life. I remember that one of the speakers called us White and Asian kids out for promoting the idea of colorblindness. He said that the color a person's skin is part of their identity, and, if we ignore it, we ignore a part of who that person is.

That trip ignited in me a desire to get to know and understand people of other races, particularly Black people, but I only did so when it suited me. I joined a gospel choir, which kind of served as a defacto Christian fellowship group for some of the Black Christians on campus, who didn't feel entirely welcome in our majority White group (though we didn't try to exclude them). I learned to clap in rhythm and learned a little bit about the Black church. I didn't think or ask anything about the experiences of my fellow choir mates, however.

As I've grown, I've learned more about the systemic racism that Black people, Indigenous people, and (to a lesser extent but still occurring) other people of color experience in American society. I've realized the extent that my immigrant forebears, while still poor initially, benefited from their whiteness in ways that allowed both of my parents to earn PhDs and give me and my brothers an upper middle class upbringing.

So on to my kids,  Mr. Engineer and I have purposely attempted to raise them in a way that will allow them to be exposed to people of different races and economic groups. We live in a neighborhood that's racially and socioeconomically diverse. We sent Squirrelboy to the local elementary school, which was still about 60% White, but still exceptionally diverse compared to my upbringing and Mr. Engineer's (who grew up in a mostly working class but still mostly White city in Wisconsin). Kittygirl, as you may remember, attends a Spanish Immersion magnet school, but her school is also quite diverse. Squirrelboy's high school, which is also a magnet school, is even more diverse, and I'm not even sure it's majority White.

I've talked to my kids on and off (to Squirrelboy more than to Kittygirl) about the White Privilege and encouraged them, as they see opportunity in their lives, to use their White Privilege to help others when the opportunity presents itself. We've raised them to be aware of color and other parts of people's identities, but not to use color as a reason not to like someone. We're working on all of the things in this graphic that I came across on social media recently in the wake of the protests spurred by the deaths of George Floyd and Breonna Taylor, two people in a long line of Black people killed by police.

When I taught a class about empires through history at Squirrelboy's coop last year, I did some research and included African empires, which had conspicuously been left out of the curriculum with the exception of Egypt.  

I have tried to expose my kids to a variety of books and movies featuring Black people and other people of color (I've done a pathetic job with Indigenous people I must admit), both those that directly teach about injustice and those that simply feature people of other races living their lives. One of my favorite picture books that fits this category is the book JUST ASK by Supreme Court Justice Sonia Sotmayor.

The book features children of a range of ethnicities as well as a range of dis/abilities growing a garden together. Sotomayor, who is Hispanic and who has lived with type 1 diabetes since childhood, did an amazing job (along with the book's illustrator) of exposing kids to the idea that our differences are something to be celebrated, not something to be hidden. 

I've also talked to my children about the recent protests, some of which have happened in our city, and  the injustices that preceeded them. The years, centuries really, of injustices, not just the most recent deaths. Squirrelboy wants to be a filmmaker and he says that he wants to make films that make a difference. It's hard to tell when your teenager is listening and taking your seriously, but still I encourage him to consider using his privilege as a White, heterosexual, cisgender Christian male to make movies that might help change the world for the better for those suffering from systemic racism and other prejudices ingrained in our society.

All this might make you think I'm presenting myself as a hero and a role model for all White upper middle class parents to follow. I'm not. I'm sure I'm doing better than some, but I'm also not doing as well as others. If some of the things I've done serve as a model for you, awesome. If you have suggestions of how I can do better, even more awesome. 

We all have a lot of work to do. I hope and pray that my children are part of a generation that makes more progress than we ever have before, and I hope that what I'm doing now will help make that happen.

In Which I Finally Get My Christmas Wish and It's Not Quite What I Expected

It's been a long time since I posted here. So long there's been an update to blogger.com I didn't know about :). I'd been on a monthly posting trend, but now it's been nearly  two months. The handful of you who regularly check this blog had probably begun to wonder if I'd abandoned it altogether. The fact is, the original purpose of this blog was to get me back into a regular rhythm of writing, and it has accomplished its purpose. I spent most of the last two months working on a manuscript for a new middle grade novel that I've now started submitting to agents.

That said, I find I still have things to say about parenting and invisible disabilities, so I'm not giving this space up altogether. In fact, I have some thoughts that have been simmering for awhile now, so, if the kids let me, I may even go back to posting every day for a week or two while I wait to hear back from agents. 

Do you remember at Christmas when I  posted about wanting a closed loop insulin pump system for Kittygirl? Remember in February when I posted about our frustration that Kittygirls' endo was not giving out prescriptions for Control IQ and not giving a timeline for when that might happen? After that post they actually sent out a letter stating that they were not giving any prescriptions for Control IQ for patients under the age of 14 because it was not yet FDA approved. We figured we might have to wait until the system was FDA approved for younger kids, which, of course, was slowed down thanks to the pandemic.

Then the first week of May Kittygirl had an endo appointment via telehealth. Mr. Engineer thought the idea of a telehealth endo appointment in our case was incredibly stupid. The fact is, we make all of the diabetes decisions involving insulin rates and ratios ourselves, so we don't get any input on that at endo appointments. The only practical things the endo does for us is to measure Kittygirl's A1C and check her pump and CGM sites for scarring. Those two things can't be done in a virtual appointment.

However, we have to have a quarterly appointment to keep getting prescriptions for insulin and other diabetes supplies, so of course we proceeded with the appointment we thought would be total waste of time. It turns out it wasn't for one reason alone. Mr. Engineer mentioned that we'd really love to be able to get the Control IQ prescription soon so that we could get used to it over the summer  and make any needed adjustments so that it was running smoothly by the time school starts back up in August (presuming in person school starts in August, but that's a whole other post). The endo said that she'd check with the diabetes educators about the status of prescriptions for  kids and get back to us. She never got back to us personally. The next day, Mr. Engineer received an email from Tandem that the prescription for Control IQ had been received. It makes me wonder when we would have gotten it if we hadn't directly asked, since we were never contacted and the CDEs should have been well aware that we wanted it ASAP, but that doesn't really matter at this point.

You know the phrase garbage in garbage out? Well, it turns out that applies really well to hybrid closed loop systems. If you don't have your settings exactly right, a hybrid closed loop system is no better than a regular insulin pump. In fact, in some ways it's actually worse because the "smart" actions it tries to take can work against the things you've taught yourself to do to try to keep your/your child's blood sugar in range.

We had many of Kittygirl's settings optimized for Basal IQ, the prescursor to Control IQ, which shut off insulin delivery when blood sugar began to drop. We even changed the duration of insulin action time to 5 hours months ago to get used to it, since that's the unchangable insulin action time for Control IQ. However, we had done nothing to change Kittygirl's correction factor, even though we gave more insulin than the pump wanted us to give every.single.time we gave a correction and she rarely went low when we did so.

I had been telling Kittygirl for nearly a year that, once we got Control IQ, we could start experimenting with some new foods or new amounts of foods that I previously hadn't allowed her to have. So the very first morning Kittygirl asked if she could have three pieces of toast. I agreed, and it was a disaster of epic proportions. I think her blood sugar went up to 300, which, thankfully, is not common these days.

I was pretty frustrated and angry that Control IQ seemed to do absolutely nothing, and Mr. Engineer was pretty frustrated that I allowed the food change in the first place AND that I was frustrated with the system, because we had done nothing yet to change the settings to try to make the system work the best it could for us. 

It's slowly improving. I still don't think we have Kittygirl's correction ratio quite where it should be, and Control IQ still lets her blood sugar get higher than it would if it worked precisely as advertised, but it has definitely helped. When she eats rice or pasta for dinner, it used to be a huge fight to keep Kittygirl's blood sugar from coasting at 250 for hours. It's still hard to get her blood sugar back down at the level we want after a dinner of rice or pasta (particularly if dinner is eaten later than 6pm), but, thanks to Control IQ, it's more likely to coast closer to 180 or 200 than at 250, so that's a step in the right direction.

However, I do now let her have three pieces of toast on occasion, and I seem to have figured out a way to make it work. What I need to do is prebolus the carbs for two pieces, and then deliver the insulin for the third piece in a 50/50 split over two hours. It still doesn't work every time. Toast is a tricky food for Kittygirl, and I still sometimes find myself fighting a delayed spike from it 4-5 hours later (if you know the science behind this please comment, maybe it's the fat in the butter?), but so far today it has worked out well.

One of the best things about Control IQ is that the sleep mode keeps Kittygirl's blood sugar in range without me needing to do adjustments of any kind most nights. This is a huge. We'd gotten Basal IQ settings to the point that his happened probably 4 nights out of every 7, but with Control IQ it happens almost every night. It's great to not be regularly be awakened by alarms.

Speaking of alarms, however, the Control IQ alarms that can't be turned off really annoy me. There's one that sounds when it predicts that Kittygirl's blood sugar will drop below 80 in the next 15 minutes. First of all, we've learned over the past few weeks that, more than half the time, even if Kittygirl's blood sugar drops into the 60's, the suspension of basal insulin alone is sufficient for her blood sugar to rise back into the 80's or higher, so in those cases there is absolutely nothing we have to do. In the cases when she does need to eat something, the Dexcom alarm will notify us that her blood sugar is low. And, finally, about half the time by the time this alarm goes off Kittygirl's blood sugar is already below 80 and I'm looking at the pump like, "You're calling this a prediction?"

The alarm that goes off when Kittygirl's blood sugar goes over 200, telling us that this has happened despite and increase in insulin and we should check that there is no problem with the site or the tubing is also really annoying. Now, it may happen someday that Kittygirl's blood sugar is high because of a site or tubing issue, but so far it has always been directly traceable back to food, and I'm already well aware that the blood sugar is high and frustrated by it, so I don't really need an annoying alarm system to remind me.

Some people equate going from a regular pump to a hybrid closed loop system as like going from a manual shift car to an automatic, but I prefer the analogy of another diabetes blogger that Mr. Engineer read (I'd link to the post, but he doesn't remember where it was from). She likened it to going from a horse and buggy to a manual shift car. It's a big improvement, but it's still quite a bit of work. In contrast, having a working pancreas in this analogy might be like having a self driving car. It just does everything without any work on your part.

I'm glad I finally got my Christmas wish, but it hasn't been totally smooth sailing. That's the thing with diabetes. Unless and until scientists develop a treatment that allows the body to produce the necessary insulin to control blood sugar, it's always going to be a 24/7 job.