In Which All I Want for Christmas Is a Closed Loop System

We're visiting my parents for Christmas right now, which we do every year. Because of this, we always open our family Christmas presents before we travel. It just doesn't make sense to lug a bunch of presents with us only to lug them all home again. This is especially true given that we'll be staying in three additional places during this trip. However, the kids often bring their favorite gift along with them. For Kittygirl this year, this was a hoverboard. They don't actually float like the ones Back to the Future promised my generation our kids would have, but they're pretty awesome nonetheless.

Kittygirl has taken to riding the hoverboard all around the house, prompting one of my brothers to start calling her a cyborg. I commented that this was particularly fitting given that her insulin pump is akin to a robotic pancreas. The thing is, though, in its current incarnation, it's a pretty pathetic robotic pancreas.

As anyone in the diabetes community already knows, despite the impression that some people outside the community has, an insulin pump is in no way equivalent to a pancreas. It doesn't automatically give you insulin (except for the basal insulin you've programmed it to give you) and even the pumps that do more in combination with a CGM don't give the results that a fully functioning pancreas gives.

As I've shared before, having diabetes does not feel like a huge burden to Kittygirl at this point. It annoys her sometimes, because we don't always let her eat exactly what she wants exactly when she wants to eat her. Her skin is sensitive and her pump and sensor sites are nearly constantly itching, and she gets annoyed when she's about to do something and we ask her to pull out her pump. However, overall, diabetes is just a small bump in the road of her life.

However, the burden is much heavier on me as a caregiver. This is particularly true because I've done my own research and I am constantly aiming for an A1C and time in range that are closer to nondiabetic numbers than to the minimum recommended by official sources. I'm still only mediocre at that, and it's a lot of work.

I've heard stories of kids who ask Santa for new diabetes technology or even for a cure for Christmas. Kittygirl has never done anything like that. I don't believe a magical being is going to lighten the burden of being a diabetes caregiver for me, of course, but I do see technology on the horizon that has the potential to do this.

Currently Kittygirl's Tslim X2 insulin pump runs a program called Basal IQ which shuts off the basal insulin when her blood sugar starts to drop and it predicts it's going to go low. There are people who have had few or no low blood sugars since starting to use Basal IQ. That has not been the case for Kittygirl. It does prevent some lows and help mitigate others (I know this for sure because I was fed up with it not working as advertised and turned it off one day, only to realize it really was helpful).

Just over a week ago, Tandem's latest  update, Control IQ, gained FDA approval This system will feature a much more advanced version of cutting off basal when it predicts low blood sugar, including reducing basal before cutting it off. More importantly, however, it will automatically both increase basal and give extra corrective doses of insulin as blood sugar starts to rise.

I'm very excited about this update. I think it has the potential to change our diabetes experience for the better. However, unlike many people,  I'm not excited in the main because I think it will greatly improve Kittygirl's A1C or time in range. Based on the data that has been shared from trials of the system, my sugar surfing skills produce numbers that are at least as good as and sometimes better than those the system produces for the average person.

The difference is that I only achieve those numbers through constant vigilance and frequent microdoses of insulin through the pump or small doses of fast acting carbs to head off a low blood sugar. There are times (and these times are increasing as Kittygirl does more activities independently) when I'm not available to do this. There are other times when I'm wrapped up in doing something else or  engaged in an activity that makes it impossible for me to use the pump (like driving). Though I still anticipate doing some of the things I do now when I'm with Kittygirl after her pump gets Basal IQ, I will have more peace of mind when she's away from me or when something else in our lives hinders me from being so vigilant.

I'm not actually getting this for Christmas, of course, the FDA approval of Control IQ makes it likely that I'll get it in the first quarter of 2020, which is pretty exciting.

My ultimate dream is for a system that requires even less interaction and doses glucagon for low blood sugar instead of just cutting off basal insulin. There's been a system like that under development for a long time, but it isn't approved yet. They've been predicting that it will be approved in a year or two for at least five years, so I'm not holding my breath. In the meantime, I'll take the reduced burden that Control IQ is likely to give me.

Kittygirl, meanwhile, will enjoy her new cyborg status as she rolls around grandma's house on her hoverboard with her far from perfect but still fairly advanced robotic pancreas.

In Which I Believe in Magic (Sort Of)

When I was a naive, young college student and a relatively new Christian believer, I would have discussions with my Christian friends about whether or not, presuming we became parents in the future, we would introduce Santa and the Easter Bunny. Somehow the Tooth Fairy never came up. The debate was over whether, in introducing mythical gift givers and thus potentially focusing on gifts during these holidays, we would obscure the celebrations of the birth and resurrection of Jesus, respectively. We also feared that, when eventually our children discovered that Santa and the Easter Bunny were make believe they would be tempted to relegate Jesus to that realm as well.

Now, as a 40-something mother, I have not only embraced Santa Claus and the Easter Bunny (not to mention the Tooth Fairy), I have added an additional mythical gift giver to the assortment plus two holiday visitors.. Squirrelboy no longer believes in mythical gift givers, but he believed in Santa pretty firmly through Christmas of 4th grade, longer than many of his peers. Just before Christmas of his 5th grade year he told me that he believed we (Mr. Engineer and I) were Santa Claus, and probably the Easter Bunny too. I confirmed it, and recruited him to help keep the magic alive for his sister, who was 4 at the time. For the record, he never even brought up the question of whether Jesus was part of the make believe children's magic.

Christian families make different decisions about  mythical gift givers, and I don't mean to malign those who have prayerfully chosen not to introduce them. However, I have personally found that immersing children in a world of magic from an early age can be spiritually beneficial. It's pretty much impossible to explain the mystery of the Trinity to a three year old. Heck, it can be difficult for a 43 year old to understand the idea that God is simultaneously one God and three persons. However, it's not hard for a three year old to embrace the mystery of a kind man who travels around the world delivering presents on Christmas Eve.

I believe that introducing children to magic and mystery at an early age can ultimately be a really good thing for their spiritual lives. The fact is, the Gospel contains a lot of mysteries. Somehow the all-powerful creator of the universe mystically impregnated a young woman without the benefit of intercourse or reproductive technology and was born on earth as a baby who grew into a man who was 100% human and simultaneously 100% divine. Then that God-man purposely got himself executed in order to serve the punishment for sin for all of humanity, remained dead for a few days, and then rose from the dead, thus defeating death.

If you have been raised to believe that only what you can see and touch is real, frankly, that story sounds incredibly stupid and unbelievable. In the western world, however, even many Christians live as if only what we can see and touch is real. Introducing my children to a magical world conditions their hearts and minds to accept the unbelievable. As they've grown older and begun to ask their own questions about our faith, they have accepted that a lot of it is hard to understand and doesn't always make practical sense. I don't believe this would have worked as well if they had not been raised in the atmosphere in which we have raised them.

I should add that we have never focused on presents as the main reason for Christmas or Easter. We give presents to each other to celebrate the gift of Jesus. Santa also brings presents to celebrate the gift of Jesus, and all he does is fill the stocking and leave a few small gifts or one medium sized gift. The Easter Bunny brings candy and a few small gifts to celebrate Jesus' resurrection. Despite my misgivings pre-parenthood, I have never found it difficult to focus on Jesus and blend in mythical gift givers.

Because two holiday gift-givers weren't enough, we also added the Candy Fairy. She comes after Halloween and Easter and trades any candy the kids don't want for a small toy or some cash. We introduced this the first Easter after Kittygirl's diabetes diagnosis. She had gotten a lot of candy at a plethora of Easter Egg hunts, and I wasn't ready to deal with figuring out how to dole out the candy fairly and dose insulin for it. So I told her that I'd heard that, if she wanted to save just a little bit of her candy and leave the rest out, there was a Candy Fairy who would take it and leave a toy. She was all in, and to my surprise, so was her brother. The Candy Fairy came back for Halloween and has been a twice-yearly feature in our house ever since.

Finally, our family hosts both an Elf on the Shelf named and a Shepherd during Advent.

We don't focus on the elf telling Santa whether the kids have been good or bad. Santa, in our family mythology, gives gifts to celebrate the birth of Jesus, not gift dependent upon behavior. However, he observes our Advent practices and reports Christmas wishes to Santa. Our little Shepherd boy spends Advent searching for Baby Jesus and finds him (in plush version) on Christmas morning. He then stays with us for the twelves days of Christmas reminding us to keep celebrating. The shepherd also comes back a few weeks before Easter to remind us of the Easter story.

Even many people who don't embrace any spiritual belief point to the Christmas season as a magical time. There's no reason that embracing that magic has to harm your child's budding faith. On the contrary, it can help it blossom.

In Which My Christmas Tree Becomes a Metaphor for My Life

First of all, happy St. Lucia Day! If you don't happen to  have ever lived in Sweden or be of Swedish origin, you've probably never heard of this day. St. Lucia was a young woman from Sicily in (I think) the 4th century. She was ultimately martyred for her refusal to marry a powerful Roman who was a pagan. She has become the patron saint of the blind (because her eyes were reportedly poked out before she was killed) and of Sweden. She's probably patron of a few other things I as a protestant don't know about.

Sweden adopted Lucia, I think, in large part because her names means light. St. Lucia Day takes place on what (before the calendar was changed) used to be the Winter Solstice, the darkest day of the year. Her arrival (in the form of girls and young women dressed in white and wearing a evergreen crown with candles) heralds the return of the light and the fact that the days will gradually begin to get lighter and Spring will eventually come. Given that in parts of Sweden it is dark all day long at this point, that's an important reminder.

Facebook posts from my Swedish friends indicate that the commercialized Christmas season has crept further back in the year there just as it has here, but, when I was an exchange student in Sweden in the mid 1990's, the arrival of Lucia heralded the beginning of the Christmas season. Advent had already begun of course, but Christmas decorating, baking, etc., began in earnest after the 13th.

Years ago, before Squirrelboy was born, I was taking my writing more seriously and I had a story published in Spider magazine about a little Swedish girl celebrating St. Lucia Day after her family moved to Peru. When it was first published I didn't have kids', but I offered to come read the story to the classes of my friends who were teachers. Once Squirrelboy started preschool I read it to his class. That continued until 3rd grade. I've now read the story to Kittygirl's class every year since kindergarten, and today was the day. Since I most often come in to read about diabetes, I really enjoy reading something entirely different.

The story was always well liked by Squirrelboy's classmates, but it polls especially well at Kittygirl's Spanish Immersion school. There are both teachers and students at the school who were themselves born in Peru or whose parents immigrated from Peru. It's also particularly gratifying when I read the author's name and the students realized that I, Kittygirl's mother, wrote a story that appeared in a real magazine. I think writers are these far-off mythical people in their minds. Inevitably someone asks if I want to write a book. I was happy this year to report that I've written a book and am researching the best route to get it published.

I've been immensely gratified by the way my kids have reacted to my intention to start taking my writing more seriously, even if it means that there may come a time when I have less time to devote to them. Kittygirl, in fact, social butterfly that she is, would be over the moon if I a) spent enough time writing and b) made enough money to send her to the afterschool program. However, I'm not counting on that since she only has 2 1/2 years left of elementary school. The kids are super excited that I'm working on a book, and both of them have asked to read it when I'm done. Kittygirl even told her gymnastics teacher that her mom is writing a book.

This season has reminded me that my life is a work in progress. I think that's really true of all of our lives, even if special needs of any kind don't figure into them. It feels especially true if you're in the season of actively parenting small (or even taller than you but under 18) humans, but I don't think it ends when your kids leave the house, and I think it applies even if you  never had kids to begin with.

Our Christmas tree this year served as a metaphor for this. Mr. Engineer and Kittygirl left to get a tree at about 2pm Sunday. The idea was that they'd be back no later than 3:30, the tree would be up a little before 4, and all the decorating would be accomplished by the time the kids went to bed.

That's not what happened, however. It was almost 4 by the time the tree-procurers returned, but that wasn't the main obstacle. They had chosen the biggest tree we've ever had. Somehow it didn't occur to Mr. Engineer that our small tree stand might not support a larger tree.

It took him a long time to get the tree balanced in the tree stand. By the time it happened, in fact, we were sitting down to dinner. Five minutes into dinner there was a crash from the living room we all rushed in to see the tree tipped over onto an end table. Thankfully, there were no highly breakable decorations in the path of the tree.

Mr. Engineer made a detour to Meijer after dropping off Squirrelboy at youth group.  He came home with the most expensive tree stand, reasoning that a heavy metal stand would be more likely to help the tree balance. After a lot of work, we realized that stand was also a failure. Mr. Engineer made a trip back to Meijer for a third stand. This time he get one intended for a tree measuring up to 10 feet even though our tree is only 8 feet high. The good news is the new stand was plastic and only half the cost of the metal one he returned. The even better news is that it finally worked.

By the time this was all done, it was time for the kids to get ready for bed. I convinced Mr. Engineer to work together to string lights on the tree. This is an activity that's impossible (or nearly so) for one person to do alone in the position in which we put our tree (up against the picture window in the living room).

It wasn't until Wednesday that I actually finished the tree. Given that I'd expressed late last week that I was going to start taking my writing more seriously I had to actually spend some time editing my long-neglected novel. I also had to grocery shop on Monday and do a handful of other errands. In the end, though, the tree really was the most beautiful one we've ever had and I think it was worth the trouble.

We didn't realize when we set out to get a Christmas tree on Sunday afternoon that it would turn into a multi-day ordeal involving three tree stands, two trips to the store, and a tree crashing down in the living room. If we had known what this tree would bring, Kittygirl and Mr. Engineer might have chosen a smaller tree. I'm sure this hypothetical smaller tree would have been nice, but it wouldn't be the thing of incredibly beauty that our current tree is.

I think life works like that more often than not. We often set out with a particular plan for the way our lives are going to go. More often than not, that beautifully crafted plan crashes around us just as our tree crashed down in the living room.. We could have conceded defeat, tossed the Christmas tree in the backyard, and bought a smaller, easy to decorate artificial tree. It would have looked fine, and I imagine there are families out there for whom this could have been the best choice because of a variety of other stressors operating on their lives.

Most of the time, though, it makes the most sense to persevere and figure out how to reconstruct our plan in a way that fits our current circumstances. That might look like accepting our child's or own diagnosis and figuring out how to fit it into our lives. It might look like realizing our original dream (having healthy kids, or kids who are brilliant in school, etc.) isn't going to happen but learning to find the hidden blessings in what we do have.

As I discussed more in depth in a post back in September, my theology doesn't teach me that "everything happens for a reason" or that God purposely orchestrates every single aspect of every single person's life. What I do believe wholeheartedly, however, is that, at the end of time, everything will be redeemed and that, while we live in time, God can use our circumstances (as horrible or simply annoying as they may be) to teach us and to bless us even though He did not directly cause them and He grieves over the tragic things in our lives as much as we do.

God desires to shape our lives into something beautiful. However, this takes time. In fact, I think we may actually be reshaped into different beautiful things at different stages of our lives. Right now, though, some of us are caught in the messy middle. Maybe we realize we are being shaped. Maybe we even firmly trust that God is shaping our lives into something breathtaking. However, right at this moment, we feel like an undecorated Christmas tree tipped over in the living room. We're afraid we might just be tossed away to make way for something simpler and easier to put up.

In the end, though, God will lift us up, balance us, and decorate us appropriately if we allow Him to do so.

In Which I Put On My Own Oxygen Mask

Parenting is a lot of work. I don't know a parent who wouldn't agree with that. If you're parenting a child with any type of special need, be it social, educational, intellectual, behavioral, health, or some other category I haven't thought of, it's exponentially harder than normal parenting (which, as I already mentioned, is no easy jaunt through Candyland to begin with).  Because of this, it's easy to lose sight of who you are outside of being a parent. I think this is especially true for stay at home parents.

For nearly 15 years now, my primary identity has been as a mom, first as Squirrelboy's mom and later as Kittygirl and Squirrelboy's mom. I had to deal with a little bit of extra stuff fairly early on when Squirrelboy failed to start talking on time and I had to get him evaluated and eventually get speech therapy. As Squirrelboy's dyslexia and then his ADHD became apparent as he went through school my plate got even fuller. With Kittygirl's type 1 diabetes diagnosis, my plate was so full it no longer really resembled a plate but rather a huge pile of stuff that might possibly be hiding a plate underneath it.

My mom identity morphed when Kittygirl was no longer a preschooler and it was a little bit less acceptable to be "just a stay at home mom", but I saved myself a lot of judgment by homeschooling Squirrelboy for the next three years. Now that both kids are in school for 7 hours a day I've been getting a lot of questions about what I'm going to do next. Granted, if I had a penny for every time someone had asked me that I'd only have about 20 cents, but that's still a lot of questions.

There are a lot of things I might enjoy doing. Raising a kid with diabetes has gotten me interested in the medical field and I've toyed with the idea of going back to school to become a nurse, particularly with an interest in being a school nurse. I've also started subbing very part time as a helper at Kittygirl's former preschool and I've been reminded of just how much I love preschoolers. In that same vein, I really enjoyed teaching at Squirrelboy's homeschool coop and I've toyed with the idea of getting certified to teach.

All of those ideas have some pretty big flaws, however. In nursing, the only thing that's really interesting to me is helping kids with diabetes, and the fact is there's no guarantee that any school that hired me would even have students with diabetes and that wouldn't be my main job even if they did. In order to teach in any realm long term I would need to go back to school. Ditto with nursing. At 44, I'm just not keen on fitting school back into my life, let alone paying for it. Mind you, I haven't totally discarded those ideas. I still may go in one of those directions eventually.

However, what really gives me joy is writing. I've always considered myself a writer, even when I wasn't actively actually writing. I had a few magazine pieces published before Squirrelboy was born, and I finished a middle grade novel that was summarily rejected by a slew of publishers when he was a toddler. At that point, I shelved both the novel and my writing dreams and concentrated on being a mom.

I'm beginning to realize, however, that who I am as a person and not just as a wife and mother has gotten buried over the years. Don't get me wrong. I've loved all the time I've been able to spend with my kids and I don't regret it. What I do regret is not carving out even a little bit of time for my own pursuits, including writing. A large part of the reason I started this blog was to force myself to write regularly.

The blog has done its job. I have recently begun learning what it takes to submit your work to an agent, which is the route that might have been best 14 years ago, but is definitely the best choice now if I'm serious about getting my fiction published. I've dusted off my novel, joined a critique group, and realized that the manuscript I thought was ready for submission 14 years ago needs some serious work.

To that end, I've realized that I'm going to do that I can't dedicate quite as much time to my blog. Don't worry, you handful of faithful readers. I'm not giving up the blog entirely. I'm just no longer planning to write every weekday. I still plan to check in at least once a week, sometimes probably even two or three times.

Keep reading, and, if you too have allowed parenthood to bury your identity, find your own way to begin digging your way out. It will probably look entirely different from my way, but that's okay. Oh, and about the title.... Remember how in the emergency instructions on a flight you're told to put on your own oxygen mask before assisting someone else? As you've probably heard, that image has been used as a metaphor by more than one writer to encourage people to care for themselves before pouring themselves into caring for others. I'm nearly 15 years late, but I'm finally putting on my own oxygen mask.

In Which the Dexcom Outage Did Not Actually Put My Daughter's Life In Danger

In case you're not part of the diabetes community, or you are but you've been living under a rock for the past week, there was a huge outcry recently over the fact that the share app for the Dexcom continuous glucose monitor went down the week of Thanksgiving. This meant that parents and caregivers of children with T1D as well as friends and loved ones of adults who choose to share their info could not see their loved one's CGM graph on their phone. The system was still working and still transmitting a signal to the phone or receiver of the person wearing the device, but no one else could see the info without looking at the device directly or retrieving the data through an alternate not officially approved method. The news actually became so big that the New York Times published an article about it.

As far as I understand, the outage only affected the U.S. and it occurred late at night or very early in the morning depending upon your time zone. This was especially disturbing to many because even those who can feel their blood sugar dropping to potentially dangerous levels during the day do not always wake up to low blood sugar overnight. Many parents got up multiple times a night to check their children's blood sugar before Dexcom. These people slept peacefully through the night the outage occurred, unaware of the fact that their phones were not alarming because they were not receiving a signal, not necessarily because their child's blood sugar was in range all night.

I completely understand the outrage people felt. Yes, this technology is relatively new. Yes, people got along without it for decades and we tend to take it for granted. However, the fact is that there are many people who have come to depend upon it and it's irresponsible that Dexcom allowed the situation to happen in the first place and, in the second place, did not immediately do everything in their power to notify users of the situation. The first notification was not sent out via social media until morning after the outage. A couple days into the outage the Dexcom share app on Kittygirl's phone began notifying us that share services were not working properly. Thanks, Dexcom. Did you think I missed that?

All that said, I still find it sad that there was so much panic reported in the diabetes community due to outage. I understand people being frustrated by the situation and angry that Dexcom took a long time both to notify users of the problem and to fix it. However, I don't understand the panic I heard about, including parents who were terrified that their children were going to die because they (the parents) couldn't see the children's blood sugar graphs.

For small children who are not at all able to treat lows themselves, I especially understand the frustration. The fact is, not everyone with whom we might leave our children is well trained in diabetes care. However, we can feel relatively safe leaving young children with minimally trained adults if we can follow their Dexcom and quickly communicate with the adult if action needs to be taken or hurry back to take action ourselves.

There is a difference, however, between serious inconvenience and serious danger. I fear sometimes that those of us raising T1 children in today's world suffer from a wealth of knowledge. We forget that children with diabetes managed to survive through the night and grow up to be healthy adults long before Dexcom came on the scene. Does death from severe low blood sugar happen? Yes, sadly it does. However, it is statistically very rare. There may have been a case of a child whose life was truly in danger due to the Dexcom share outage. However, the majority of the parents expressing this panic were simply buying into a prevailing mindset that does not consider all the facts.

I know this post has the potential to be controversial, but I still feel the need to share it. We have had Dexcom since very shortly after my daughter's diagnosis. It's an incredible tool and I would not be able to manage Kittygirl's diabetes anywhere near as well without it. Since she has very subtle reactions to low and high blood sugar that she can easily miss when wrapped up in something else, I would not feel safe leaving her as many places as I do if I did not have Dexcom as a backup to notify us of a potential problem.

However, I still did not, at any point, believe that Kittygirl's life was in danger during the Dexcom share outage and I assert that this was true of almost everyone (I'm leaving open the possibility of a very rare case that might have included true danger, though I don't personally know of any). The technology we have available to us today is amazing. I wish everyone had access to it and I think everyone who does have access should take advantage of it. However, we need to learn to keep it in its proper place and not buy into the abject panic if (really, when, because it will happen again) it fails. We should have backup plans in place and know how to function without the technology if that becomes necessary.

In Which Kittygirl Misses Dance Class Because Her Brother Has ADHD

As I've mentioned before, to my great surprise, Squirrelboy has been thriving in his first year back at public school. I pick him up most days (he can ride a bus, but it involves a transfer and a long wait and his school isn't far from Kittygirl's). Most days he bounds into the van with a smile and a story about something interesting that happened that day.

Today was the kind of day I feared might happen regularly during Squirrelboy's transition to public school. He was practically in tears as he slouched into the van and he declared angrily, "I have a ton of work to do and it's all due tomorrow!"

A ton of work translated as rewriting an essay he thought he had finished (he showed it to his teacher, who said it was week and recommended serious revision), finishing a presentation about Disney music that in theory should have been done in class (his partner didn't do any of the work), making some corrections to the digital poster for his science project, studying for a Civics test, and figuring out what to do about a group project for which one group member kept refusing to do his part and which was due, you guessed it, tomorrow. 

Squirrelboy spent the entire car ride home turning himself into a ball of stress over all the work he had to do. I assured him that, yes, it sounded like a lot of work, but that he had proven himself capable over the semester and that, after a short break to calm himself down, I was sure he could tackle the work. 

We arrived home about 3:15. I had to put dinner together so it could be put in the oven at 6pm and then Kittygirl and I were supposed to leave for her ballet class no later than 4pm. Squirrelboy took his afternoon ADHD meds and then decided he should set right to work (normally he takes a break of 20-30 minutes to let the medication take its full effect).

I sent Kittygirl to her room to do the 20 minutes of reading still needed to finish her reading log for the week, and set about to make cream cheese chicken pinwheels in the kitchen. Squirrelboy kept asking me if I could look at his work and I kept telling him that he'd have to bring the computer into the kitchen (at his school almost all work is done on a school-provided Chromebook). 

I was still working on the pinwheels when Kittygirl finished her reading. She came in to help me in the kitchen and Squirrelboy was struggling to even make a start on the project he was supposed to have finished in class. He practically begged me to come out and help him, but, by the time I finished putting dinner together, it was 3:50 and I wanted to leave for ballet in about 5 minutes.

This is when Kittygirl showed herself to be a good sister (either that or to be tired of having a commitment four afternoons a week). She offered to give up going to ballet class so that I could stay home and help Squirrelboy. I felt kind of bad, but she wasn't grudging about the offer and I knew that Squirrelboy might never finish his work if I weren't sitting by his side. I did consider bringing him to ballet, but the travel time would have cost him an hour of work time.

So I gave Kittygirl permission to watch a video in my room with the door closed and sat down next to Squirrelboy at the makeshift work station he has set up in the living room. It includes a larger monitor and a real keyboard he can attach to his Chromebook.

He was still a ball of stress, and I started by saying a prayer for him to have peace and to be able to look at his work in perspective and do his best. This isn't something I do regularly in my parenting, but I probably should. I then looked at his work with him and typed (which I do much faster than he does) while he worked his way through the assignment. He bounced ideas off of me, but ultimately the work was his.

The "in class" assignment took about an hour. Then Squirrelboy tackled the essay revision, which, in his words, was "easier than I thought it would be." Yet again, he bounced ideas off me and I typed, but the final product was his thoughts and words. That took him about half an hour. He corrected the few minor mistakes in his physics poster in about 15 minutes. He then had me look over an assignment for health which he had forgotten about in the initial stress induced panic (it's not actually due until the end of the day tomorrow). I pointed out some minor grammar and spelling errors, and he fixed them and submitted the assignment early. Finally, Squirrelboy looked at the group project that has been stressing him out. The teacher had extended the deadline out another five days, which means Squirrelboy can talk to him in class tomorrow about the dilemma that he has done his portion and the student who is supposed to do the final edit (the project is a podcast) has not even started and seems to be okay with getting a zero on the assignment.

Squirrelboy then took a break while dinner cooked and studied for Civics after dinner, which only took him about 20 minutes. He's been studying throughout the week for this test and just needed a final perusal of the unit concepts.

I'm really not sure whether I did the right thing by staying home to help Squirrelboy today. In the moment, it certainly seemed like the right thing. Squirrelboy absolutely has the ability to have done all the work by himself without me by his side. The typing would have taken him longer, but I think the work would have been of just as good quality.

What Squirrelboy cannot usually do at this point, however, is talk himself down when his emotions have escalated to the point they had reached today. Though in a very different context, his anger and stress was quite similar to what happened on fall break at the beginning of October (read the post from October 3rd if you haven't and you're curious). 

In terms of teaching my kids independence, as I talked about yesterday, I still haven't figured out the best way to walk the line of helping just enough versus too much when it comes to Squirrelboy and his stress induced near-breakdowns. At some point he needs to learn how to regulate his emotions, deescalate himself (or, better yet, not escalate in the first place), and sit down to accomplish whatever it is he needs to accomplish. 

I see that, but I'm not sure at this point how it is we're going to get there. In the meantime, I now know a lot more about what sets Disney songs apart from pop songs (Disney songs, for instance, normally have many more words and no repeating chorus), so at least I learned something interesting from today's experience :).

In Which I Don't Assign My Kids Chores Because I Do Them Better

Kittygirl has wanted her own cat practically since she started talking. Heck, she probably wanted one before that. She just couldn't tell us. When she was a baby we had four cats. One of mine even let Kittygirl pull her around by the tail. I think the poor thing was so attention starved at that point she was willing to put up with it so someone would pet her. Two of the cats had died by the time she was two (they were both 15 and one had cancer, she didn't love them to death or anything :)). Another died when she was three and a half. Our last cat lived until Kittygirl was six. Ever since then she has wanted her own cat even more. We intend to get her one someday, but we needed to get new carpet first because said last cat had a bad habit of peeing on the carpet and we didn't want a new kitty to follow in her footsteps.

When about six months had gone by since that cat's death and we were nowhere near getting new carpet (it's finally happening early next year) I advocated for getting some small caged pets. I found out that a friend from the homeschool coop we were a part of was looking to rehome some guinea pigs and we adopted Tesla and Sugar, pictured below.

In case you're curious, Tesla belongs to Squirrelboy and Sugar to Kittygirl. Tesla is named for the car company and Sugar for her large white patch. I find it amusing that a kid with diabetes chose to name her pet Sugar. When we got the guinea pigs, the idea was that they were the kids' pets and therefore the kids were going to help care for them. This was supposed to include cleaning out their cage, which, it turns out, is one of the most annoying chores of all time. 

We've had our little piggies for just over a year and a half now. I think Squirrelboy has cleaned the cage twice. Kittygirl helped me once. They do occasionally hold their pets while I clean out the cage. Why have I let his happen? For the simple reason that, if I'm the one who cleans the cage, it gets done both more quickly and much better. Mr. Engineer keeps pressing me to give them more responsibility for their pets, but I really don't want to. Cleaning the cage myself is annoying enough. Supervising a kid while it gets cleaned would be at least 10 times more annoying, and it wouldn't get done as well.

While I don't feel too bad about being the primary guinea pig cage cleaner, I do regret applying this philosophy to a lot of things in parenting. I'm way too quick to do something for one of my kids or to help them so much I might as well be doing it. 

I know this is partly because of their disabilities. I still sometimes type assignments for Squirrelboy because it's easier for him to speak his thoughts than to write them. When I was homeschooling him, I gave him a lot of leeway to do assignments differently or push them off if his ADHD was making it hard for him to manage the assignment at the time. I still talk through with Squirrelboy what work he has to do every afternoon to make sure he hasn't forgotten anything. At some point I need to help him transition to doing these things himself, but he's only a high school freshman so I don't yet feel the pressure to make him be fully responsible for such things.

Kittygirl has never had any problem with schoolwork. In fact, compared to her brother she'd almost be way too easy if her ridiculous pancreas hadn't stopped doing one of its jobs. Where I need to be careful with Kittygirl is in not taking on so much of her diabetes care that she never learns to be self sufficient. This is a fine line to walk, because I also don't want to give her so much responsibility at a young age that she burns out and decides she's done taking care of herself at 15 or 20. Thankfully, the day camp I've mentioned before has helped to push me in the right direction. Two summers ago, it was the first place she tested her own blood sugar. Last summer it was the first place she entered things into her pump.

The camp is held at a private school that grew out of the amazing cooperative preschool that Kittygirl attended. I've recently started working occasionally as a substitute aid at the preschool to a) make some extra cash and b) hang out with some fun kids. Seriously, it's so much fun I can't believe they pay me. Anyway, I was working in the art room today and I noticed this sign.

I loved this sign when Kittygirl was in preschool, and that's the kind of philosophy I want to embody in my parenting and often fail to do. Yes, there are times when you need to do things for your kids. There are other times when you need to give them significant help and guidance on the way to eventual independence. However, if you never let them try anything on their own, they'll never acquire the skills they need to be successful adults. They'll just expect you to step in for them all the time and accomplish all the big (and even many of the little) things in their lives for them. I think this is a concept that's important for all parents to keep in mind, but especially those whose kids have extra challenges and may need extra help. They may take a different, slower path to independence. In some case they may never be fully independent at all. However, it's still our job to help them get to whatever point they're capable of reaching. Letting them care for their pets, even if they don't do it as well as you do, might be a great place to start.

In Which Our Schedule Is Way Too Busy and It's All My Fault

If there were ten days in a week and 40 hours in a day, Kittygirl would easily fill them all up with activities. She has been doing ballet since she was three. This fall she picked up gymnastics and has excelled. This fall she also joined a newly formed cross country team at her school. Through the Girls on the Run program she ran her first 5k a couple weeks ago. She belongs to both a Brownie troop and a Cub Scout Pack. She has in the past played both soccer and basketball quite well and would love to get back to them. The picture below represents all of her activities. Though she's not currently playing soccer, I threw in the ball to symbolize her desire to go back to that.

Kittygirl was in kindergarten when she was diagnosed with diabetes. She was already a pretty active kid, but her only scheduled activities at the time were ballet (which was only once a week) and Girl Scouts (two afternoons a month after school). We promised ourselves when she was diagnosed that we would not let diabetes hold her back. It didn't have to work that way, but that promise to myself has made it really difficult for me to say no when Kittygirl wants to try something new, even if the schedule addition is impractical.

When Kittygirl was in first grade a dad from her school offered to start a YMCA soccer team for first graders from the school. Kittygirl was eager to join. Ballet was still only once a week at that point, and it didn't seem like a big deal to add one more activity. It worked out fine. Kittygirl loved soccer and the coach declared that she was the best girl he had ever coached.

The team reformed in the spring and Kittygirl continued to play. However, in the fall of second grade ballet class was moving up to two days a week and I told Kittygirl that she would have to stop doing ballet if she wanted to go back to soccer. She chose ballet. That spring it had been announced that Cub Scouts would begin accepting girls as members in the fall. At first we told Kittygirl that she had to leave Girl Scouts if she wanted to join Cub Scouts. However, she really didn't want to leave Girl Scouts and really wanted to try Cub Scouts. We compromised on a trial year with both.

The whole trial year thing turned out to be wishful thinking. Kittygirl thrived in Cub Scouts but still loved Girl Scouts, and the fact is the two organizations offer two different very good things. I was still in favor of choosing just one, but Mr. Engineer convinced me that, since one meets bimonthly right after school and one weekly in the evening there really wasn't any kind of conflict if Kittygirl continued with both.

This summer Kittygirl kept bringing up her desire to do gymnastics. She'd expressed this desire before and even took a class her last year of preschool, but I kept managing to put her off by telling her that she would have to quit ballet to take up an additional activity. Finally she told me she wanted to do gymnastics so much that she was willing to give up ballet. I found out that there was a gym other than the super competitive team gym in town that she could start at, so I reconciled myself to switching from dance mom to gym mom. Then we attended an open house at her long time ballet studio's new building the week after classes started. Kittygirl fell in love with the new studio and asked if there was any chance she could do both. Against my better judgment, I said yes because I love ballet in general and that studio in particular.

In keeping with my theme of saying yes, I also said yes to Cross Country (which this first year was a pretty limited commitment) and to Girls on the Run (which complicated our lives because we had to run straight to ballet after the meetings). Thankfully, both of those ended before ballet ramped up with Nutcracker rehearsals. The one thing I did manage to definitively say no to was to Kittygirl being in the fall ballet show, which would have made both cross country meets and Cub Scout campouts nearly impossible thanks to rehearsals every Saturday.

In contrast to Kittygirl, Squirrelboy has always been more of a one activity at a time kind of person. He danced from age 4 through the fall of his 5th grade year. In the spring of his 5th grade year, with the knowledge that we were planning to homeschool for middle school, he joined a newly formed middle school Ultimate (frisbee) team that grew out of a highly successful homeschool high school team.

He continued with the Ultimate team through middle school, even starting to play with the high schoolers during 7th grade. They would have let him continue this fall despite being back in public school, but the team was transitioning to a a new coach he wasn't excited about, so he decided to step back. The one thing he really wanted to do was be able to go mountain biking semi regularly. The one set of trails is, of course, on the other end of town from both our house and his school. Initially we settled on every Thursday he didn't have a huge load of homework. That worked for all of two weeks, until Kittygirl signed up for dance, which, of course, was on Thursdays.

I still managed to make it work occasionally, but the poor guy hasn't had nearly as much biking opportunity as he hoped for this fall. However, I've gone out of my way including leaving Girl Scouts early to allow him to be part of Journalism Club, which meets once a week after school (of course on the same day of the week as Girl Scouts) so he hasn't been left totally bereft. I've also rearranged my schedule on occasion to allow him to stay after school until 4 to learn more about the editing software the school news team uses, which helps him with his filmmaking skills (this has moved forward to become his primary passion over and above mountain biking).

So what's my advice? I'm really not sure. I don't like the fact that we have an evening commitment 4 days a week along with regular weekend commitments. However, I do like that my kids have the opportunity to pursue their passions. I guess my advice is to know your limits. Despite the craziness of our fall schedule, I have found that I have not been pushed past my limits. If we added one more thing I think I would be. Your limit might be one activity per kid.

When Squirrelboy was a preschooler I read a book on simplicity, and the author's advice was to limit your kids to one weekly art activity and one weekly sport activity. I found this to be an excellent advice and vowed to follow it. I then proceeded to massively break that vow. Plus, I learned pretty quickly that not all activities fit neatly into those two categories anyway. Had this author never heard of scouting? Is ballet a sport, an art, or some of both? If it's both, does it count in just one category of two? If advice like that is helpful to you by all means use it, but I found that it ended up not fitting my family's life at all.

In addition, my advice is to not let your child's disability determine what activity he does. A child in a wheelchair can't play traditional sports, but that doesn't mean he can't play any sports at all. For kids like mine with invisible disabilities you need to help judge whether an activity would be a good fit for them. Hint: it's not necessarily a bad fit just because it presents a challenge. On the contrary, it might be a great opportunity for growth. Don't let your child's diagnosis hold them back. That said, "not holding them back" does not need to equal an activity every single evening. Take it from me, that's doable but not really the best choice.

In Which I Celebrate the New Year

Did you know that yesterday was New Year's Day? No, I haven't gotten several weeks ahead of myself. No, I don't belong to some little known culture that follows an alternate calendar. That is, unless you consider Christianity a little known culture. Yesterday was the first Sunday of Advent, which begins the Christian liturgical year (sometimes called the church year). Weirdly, this is not super well known in the evangelical protestant world.

I was actually introduced to the church year by helping my mother teach preschoolers at her church when I was in high school. Her church is hit or miss when it comes to following the pattern of the church year in the regular worship service, but, in the realm of children's worship, they were great at teaching children about the wheel of the church year. Incidentally, that's also where I learned the Doxology, and I still do a toned down version of the motions we taught the kids every week in church :).

As an adult I settled into a United Methodist church. UMC churches are a mixed bag in a lot of ways, especially regarding how and to what extent they observe the church year. Our church consistently observes Advent, but is hit or miss on acknowledging the whole calendar.

I'm thankful the church is pretty good at observing Advent, because I really love this season. It's such a beautiful way to get your heart and life ready for Christmas. That said, I really like a lot of aspects of the secular American Christmas season as well and I'm not an Advent purist.

My observance of Advent outside of church began when Squirrelboy was a baby. We started buying Advent calendars with those little doors with a small piece of chocolate behind each door. We'd open a door each day, someone would eat the little piece of chocolate, we'd read the Bible verse behind the door and that was it.

Sometime when Squirrelboy was in preschool (I don't remember the year) a friend who knew I was looking for more liturgy in my life sent us a metal Advent wreath along with a set of candles. That wreath was what really pushed us into doing more than eating a piece of chocolate and reading a verse.

We eventually also added a reusable wooden Advent calendar, which has been filled with a variety of things from small toys to candy to pieces of a Lego set that's progressively built during Advent. This year, in case you're curious, the kids had no interest in Lego sets or little toys so each door hides some quarters and two Hershey kisses.

Here's a sidenote in case anyone whose child is newly diagnosed with type 1 diabetes finds my blog and reads this post.  Yes, it really is okay for kids with diabetes to eat regular chocolate. In fact, some newly diagnosed people can eat snacks anywhere from 5g-15g carbs without insulin (that's something you need to consult your endo about), in which case they wouldn't even require insulin for a little piece of chocolate. Kittygirl get insulin even for one Hershey Kiss, but she still eats them.

Our Advent setup includes the wreath and calendar mentioned, usually some kind of paper activity provided by our church's children's ministry (that's the paper tree and stickers you see), a regular or storybook Bible, the brochure that came with the wreath suggesting prayers for each week of Advent, and an Advent/Christmas related fiction book that we've chosen to read from every day. The past several years we've been reading through a variety of Santa Claus origin stories. This year's offering is Kringle by Tony Abbott. I fell in love with this book years ago and highly recommend it. It's a Santa Claus origin story told as an epic fantasy featuring shoe-making elves, weather-controlling goblins, Saxon pirates, and even a monk.

Yes, you correctly intuited from the above information that we're devout Christians, we observe Advent, and we tell our kids about Santa Claus. Long story short, I don't think believing in Santa during your childhood and following Jesus for the rest of your life need to be mutually exclusive. In fact, I believe that embracing the mystery of a mythical gift giver can give kids a leg up in understanding and embracing the mystery of the gospel when they're ready to understand it. That deserves its own post, so I'll just leave it there as a tease.

Also pictured is our Advent/Christmas Shepherd. His name is Isaiah John. He's basically a Christian version of The Elf on the Shelf. Instead of checking up on your behavior and reporting your Christmas wishes back to Santa, Isaiah John spends Advent searching for the Baby Jesus and reminds us to prepare to celebrate His birth. On Christmas morning he finds a little plush Baby Jesus. He sticks around for the twelve days of Christmas to remind us to keep celebrating.

Because we embrace contradictions, we also have an Elf on the Shelf. I'm not, however, one of those crazy Pinterest elf moms. If you're a crazy Pinterest elf mom and devising amazing stunts and props for your elf gives you joy, I say forge ahead. If it gives you a headache, you have my permission to stop, for what it's worth. All that Sam (our elf) does is move from place to place in the house each day and deliver letters to Santa. The kids still love him.

We have a pretty crazy schedule, and it gets a little crazier in the month of December because we've had a kid dancing the Nutcracker for the past ten years. I love that Advent gives us an excuse to settle down together every (or almost every) evening and reflect on what the holiday we're preparing the celebrate really means.

If you've never celebrated Advent with your kids, I highly recommend starting it.  You don't need a fancy wreath or a refillable calendar like we have, though those are nice. If all you do is buy a chocolate filled calendar from the store, read a Christmas picture book, and say a prayer, you've made a great start. You can fill in more of the things we use as the years go by, or you can learn about the various traditions and adopt the ones that work best for your family.

Here are some end notes specifically for the types of families who might be reading this. As I said above, it really is okay for a kid with diabetes to eat chocolate. However, if that stresses you out, it's also okay to forgo that aspect. You can use little toys of some kind, put a new special ornament on the tree each day, create a felt nativity scene to fill in little by little, or whatever else works best for your family. Some families like to take turns doing the reading. If this is impossible for your dyslexic or stressful, you can assign him or her a different special role: maybe lighting the candle(s) every day. Finally, if you hyperactive ADHDer can't sit still for multiple readings, just adapt it to whatever is best for them. Read just one Bible verse and a super short picture book. Or read as much as you want but encourage your kid to do something active yet not disruptive while it's happening. You don't all have to be sitting in a circle looking raptly at the reader.

Now, of course, if you belong to another religion and don't celebrate Christian or you aren't religious and you celebrate the secular version of Christmas, Advent doesn't apply to you. However, if you still want to have 24 pieces of chocolate during the month of December no one is stopping you :). If you identify as a Christian of any type and have never paid much attention to Advent, though, I highly recommend digging into what this season has to offer. Our culture wants us to jump straight into Christmas on November 1st at the absolute latest. Advent offers us a chance to slow down, step back, and reflect on what it means that the creator of the universe chose to be born as a human baby in order to bring about our salvation.

In Which I Reflect on "Person First" Language

This evening Kittygirl decided that she isn't going to walk normally for the rest of the holiday season. Instead she's going to walk everywhere using the polichinelle walk. This is a dance step from her role in the Nutcracker last year. It's sort of akin to a high skip. I don't see the polichinelle walk phase lasting long, but it reminds me of one part of her identity. She's a dancer.

Both of my kids are dancers. Squirrelboy started taking ballet when he was four years old, but even before that he was moving to music every time he heard it. Kittygirl grew up going to the ballet studio, and it was logical for her to start in the mommy and me class when she was two (actually, the first class was a couple weeks before her birthday, but they let her slide in). She has continued to progress through the levels even though Squirrelboy (though he still loves music and isn't embarrassed to move to a beat), stopped taking ballet four years ago.

Kittygirl is also a gymnast. If you don't count a short class in preschool, she has only been seriously pursuing gymnastics since August, but even before that she was climbing and swinging on playground bars, balancing on boards, and trying out somersaults and cartwheels. She has already progressed to the intermediate class, and I have a suspicion that gymnastics may eventually push out dance classes due to lack of time.

I could add lots of other descriptors of Kittygirl. She's a social butterfly. She's a loyal friend. She's an animal lover. She's a hardworking student. She's an eager helper. And, yes, on top of all of these things she's a type 1 diabetic.

There's a movement within the diabetes community and other disability communities to use "person first" language in order to avoid identifying people primarily by their disability. So, for instance, you would not use the term "type 1 diabetic" or T1D but rather "person with diabetes" or PWD.

First of all, I want to make it clear that I don't have a problem with this movement. It's never right to identify a person using just one aspect of their lives. Type 1 diabetes does not entirely define the lives of people who live with the disease. If a person dislikes the term "type 1 diabetic" because they feel that it's a label that gives too large a role for diabetes, then I fully support that person identifying as a PWD instead of a T1D.

To me, however, the term just feels and sounds awkward. I don't refer to Kittygirl as a "person who dances" or "a person who does gymnastics." I refer to her as a dancer and as a gymnast. I don't refer to her as "a person who loves animals" or "a person who loves to help". I refer to her as an animal loves and as an eager helper.

None of these terms completely define Kittygirl. It would be unfortunate if people only thought of her as a diabetic and didn't look at her life on a deeper level. It would also be unfortunate if people only looked at her a gymnast and expected her to cartwheel her way down the schools halls. It would be be awkward if people only thought of her as a dancer and expected her to actually polichinelle walk everywhere for the entire holiday season.

However, there is no movement I know of to start calling dancers "people who dance" or gymnasts "people who do gymnastics." Somehow we realize that these terms don't completely define a person while we don't always realize that a term identifying a person with a disease they live with or a disability they have only reveals a small part of that person's life.

At this point in her life, Kittygirl owns the term "type 1 diabetic" and embraces it as one aspect of her life. If, as she grows older, she chooses to instead embrace the term "person with diabetes" or some other alternate term I will support her choice and try my best to remember to use the term.

So far, I have not come across anyone in either the PWD camp or the T1D camp spilling vitriol against the other camp. I hope this continues. Whether the "pancreatically challenged" choose to call themselves type 1 diabetics or persons with diabetes, they still have a lot more to unite them than to divide them.

In Which I'm (Sort Of) Thankful for Diabetes

I'm sitting in a comfy chair at my parents' house, looking at the woods out the window and listening to the rest of my family play Ticket to Ride at the kitchen table so my brother's dog doesn't attack the gameboard (yes, we did decide to bring that bag of board games). Chicken and vegetables (prepared by Squirrelboy with a little help from Grandma) are roasting in the oven (no, we don't eat turkey on Thanksgiving, call me unAmerican if you must :)). Pies are on the counter wafting their scents temptingly toward me. "Stuffing" (which has never actually been stuffed into anything) is cooking in the electric skillet.

In short, it's a typical Thanksgiving day for our family, which finds me reflecting on what I have to be thankful for. There's a lot. I grew up in a wonderful family with two parents who are still happily married after 53 years. I'm married to an amazing man and we have two healthy children together. My physical needs have always been provided for, along with a large number of my wants. I could go on in this manner, but what I really want to reflect on today is what I'm thankful for in the realm of diabetes.

First of all, I'm thankful that insulin was discovered and refined for safe human use. Remember, type 1 diabetes was universally fatal until that time. I'm thankful that scientists continued to develop new insulin formulations and are still doing so. Because of this, diabetics no longer need to "feed their insulin" and eat on strict schedule that adult diabetics today remember from their childhoods. If they choose to, they can eat whenever and whatever they want to eat.

I'm thankful for the many tools available in our time for delivering insulin and monitoring blood sugar. If people need to or choose to use syringes, they have small one-use syringes that measure as little as half a unit. People no longer have to boil their glass syringes and sharpen their needles. Those who use injections can also use insulin pens that deliver a particular amount of insulin with just a twist of a dial. It's not necessary to carry both syringes and a vial and draw up just the right amount. Then, of course there are multiple types of insulin pumps available that deliver insulin in tiny increments at just the push of a button, or in the case of the Tandem pump Kittygirl uses, the touch of a screen. There is even an inhaled insulin on the market.

Speaking of monitoring blood sugar, I'm thankful our family doesn't have to carry around something resembling a chemistry set for measuring with limited accuracy the amount of sugar in Kittygirl's urine. There are blood glucose meters that test blood sugar with just a tiny drop within a few seconds. Even better, Kittygirl wears a sensor that shows a constant graph of her blood sugar so we can always have an eye on how it's moving. She can even decorate the transmitter with a cute dragonfly sticker and hold on the sensor with a blue cat sticker. Plus, she can wear the pump and the phone for her tech in cute custom made pouches.

We have a respected pediatric endocrinology office in our city that's just 20 minutes from our house. When we didn't get along well with the practitioner we were first assigned to, we could easily switch to another one. Our practitioner lets us manage Kittygirl's diabetes in the way we have determined works best for her and for our family and doesn't insist that we manage in exactly the way we were first shown.

Our kid doesn't hate diabetes. She just sees it as one of many factors in her life. She isn't ashamed for her friends to know she has diabetes, and her friends are still happy to invite her to birthday parties and playdates.

I've never been concerned that my child will be in danger at school because the school staff doesn't understand diabetes or doesn't care. I've never had to call an extra meeting because my child's 504 plan isn't being followed. I've never had a teacher who doesn't want my child in their class because of the extra work diabetes can bring.

Finally, I'm thankful for the many amazing people I've met in the diabetes community - locally, online, and through the Friends for Life conference. I never fully appreciated just how generous and supportive people could be until I was introduced to the diabetes community. Kittygirl has said that she doesn't mind having diabetes because otherwise she would never have met one of her friend for life.

If I had been given the opportunity to choose exactly what my life would look like it would not look like this. I wouldn't have chosen diabetes. I also wouldn't have chosen to have two kids six years apart with three losses in between. However, when I sit back to reflect on my life, I'm not really sure the life I would have chosen would have been better. Despite what it can look like on Facebook, no one actually lives an ideal life free from struggles and challenges. All we can do is try to embrace what we have and move forward the best we can within the challenges.

To end, for your viewing pleasure, here's a picture from the back of Kittygirl that she asked me to post. She was riding the horse at Meijer, where we went to buy food for Thanksgiving dinner when we realized she was going to be really hungry if we only had the food we had been planning to serve. Not because of diabetes, but because she's one of the pickiest 8 year olds I've ever known :). You can even see her cute pump pouch making an appearance.

In Which Travel and Diabetes Mix Poorly

Mr. Engineer grew up in Wisconsin. I grew up in Michigan. By a strange twist of fate, we met shortly after moving to Kentucky separately, and that's where we've chosen to stay and raise our children. This is despite the fact that neither of us intended to stay in Kentucky long term.

We love our home, but we don't love the fact that we have no relatives nearby. Since we want to make sure our kids grow up knowing their extended family, and we don't want to break the bank buying plane tickets several times a year, both of our kids had to get used to long drives early in life. 

The good news is, both of our kids have turned out to be pretty good travelers. They've embraced audiobooks, coloring books, and other vehicle friendly activities. Neither child has ever gotten carsick. They did go through a long phase during which we were seriously tempted to leave one or the other by the side of the road because they fought like cats and dogs during every trip, but they've even outgrown that.

However, since February of 2017 we've had an additional travel companion: diabetes. Diabetes has a way of keeping you on your toes when you're traveling. First there's the sheer amount of stuff you have to bring with you, which I covered in yesterday's post. However, the stuff is nothing compared to the blood sugar challenges.

As your activity level changes, you insulin needs change. Normally, Kittygirl's pump settings are modeled after her activity level on a standard school day. We have two additional profiles: one for day camp or other super active days and one for summer, when she's normally more active than during the school year. Sometimes we also turn on one of these during a super active weekend or vacation day during the school year. 

In the case of the camp and summer profiles, Kittygirl needs less insulin because she is more active. In case you don't know, insulin is more effective the more physically active a person is. This is true both of the insulin your body makes and for synthetic insulin like Kittygirl and other people with diabetes use. This is why exercise can be such a powerful part of treatment for people with type 2 diabetes whose bodies are processing insulin inefficiently.

Spoiler alert: when you spend 8-10 hours in a car, it is really difficult for the insulin you take to work effectively. The first few times we took long trips after getting the Dexcom, Kittygirl's blood sugar would go up past 300 the first time she ate something and stay up there for the whole trip.

We're fairly typical Americans when it comes to car snacks. We tend to snack on pretty carb heavy things like crackers, goldfish, chips, etc. For awhile after we discovered how the combination of travel and high carb snacks affected Kittygirl's blood sugar we tried to limit her to summer sausage, berries, and popcorn on trips. However, it didn't feel right to limit Squirrelboy to those things, and it made for an unhappy girl. 

We went back to letting her eat regular car snacks within reason and went back to the drawing board regarding figuring our how to control her blood sugar better within the car. I don't know why it took us so long, but, a few months into getting her insulin pump it occurred to us that we could increase her basal rate while traveling and that might help to keep her blood sugar under control.

We started small with an increase to just 125% and it made a small difference. We slowly upped it until we were doubling her basal for every trip over 2 hours. It has made a huge difference. Mind  you, her blood sugar still isn't perfect on every trip. Today's graph was mediocre. Her blood spiked quite a bit higher than we like to see it several times. However, if I go back in the history and compare it to the Thanksgiving trip of 2018 I can see that things have improved.

Living with diabetes presents challenges in every area of life. Sometimes the challenges are easy to overcome. Sometimes they take a lot of trial and error and you still fail on occasion even when you think you've got it down. Long car trips are our nemesis right now, but I'm told that the might look laughably easy once we start dealing with puberty. We hopefully have at least a couple years before that starts. I'm crossing my fingers for an amazing closed loop system before that time, but I'm sure that even if that happens we'll need to learn how to troubleshoot through the new challenge.

P.S. I chose to focus on car travel here. We've flown once since Kittygirl's diagnosis, but it went really smoothly, so it's not really worthy of comment. Sometime in the next couple years we're hoping to fly to Sweden again (we last went when Kittygirl was 3), so that may merit its very own post.

In Which I Pack for Thanksgiving Travel

Thanksgiving is in two days, and we always travel to my parents' house in Michigan (almost 500 miles away) to celebrate the holiday. We'll leave tomorrow, and my intention was to spend the whole time the kids were in school packing and making sure I had all my ducks in a row for traveling. A small wrench was thrown in my plans when I stopped by Kittygirl's classroom this morning and asked if there was anything quick I could do for her teacher before I left. Long story short, I ended up popping and bagging popcorn for 102 kids - the entire third grade. More on that in another post when it's no longer diabetes awareness month.

I remember back before Squirrelboy was born Mr. Engineer and I could travel for four days and bring two suitcases. For just an overnight or a weekend we might get away with one suitcase. Then after we became parents it felt like we were moving anytime we went anywhere overnight, even for just one night. We'd bring a stroller, we'd bring a pack and play, we'd even bring bottles and formula despite the fact that Squirrelboy was breastfed. Add the huge bag of cloth diapers and a few baby toys and we had quite the haul.

Just as we had begun to pare down our packing when Squirrelboy was in kindergarten, Kittygirl was born and it started all over again. We'd learned a few lessons by then. Kittygirl never really liked the stroller so we stopped bringing it "just in case." It was a whole lot easier to just throw a soft carrier into the trunk. We also drew the line at bringing things like formula that we knew we would actually never use. However, we still brought an awful lot of stuff.

Yet again, we had begun to cut back a bit when what feels like our third child was born - diabetes. Having a child diagnosed with diabetes is like having a newborn in a lot of ways. You're sent home from the hospital with a minimum of instructions and expected figure out how to do all kinds of new stuff and not accidentally kill your kid. There's also a lot of new stuff that enters your world. Instead of diapers, onesies, and breast pumps you're introduced to insulin, glucagon, and test strips.

Diabetes stuff adds an additional bag to our luggage, and I (almost) always pack way more than we're likely to need. Kind of like when I was packing for a newborn, I want to be prepared for every eventuality.

Including two days for travel, we'll be way from home for 5 days. If all goes well with sites and sensors (which is almost always does) we will need to do two site changes, one cartridge change, and no sensor changes while we are gone. We will probably have to treat 2-4 minor lows a day. Because the Dexcom is usually super accurate we may never use a blood glucose meter. If we do, we'll probably use it no more than half a dozen times.

I have packed the following:

2 Dexcom sensors

6 pump sites

6 pump cartridges

10 stickers for going over pump sites/sensors

Scissors to cut said stickers into the cat shapes that Kittygirl insists on

1 bottle Unisolve

Uncounted bag full of alcohol wipes and Unisolve wipes

1 extra glucagon (in addition to the 1 in my purse)

1 extra meter

1 extra insulin pen (just in case the pump fails and the insulin pen in my purse then fails)

2 extra containers test strips

1 container ketone strips

2 large bottles glucose tabs

15 packages fruit snacks

8 juice boxes

Tomorrow just before leaving I will add 1 Basaglar pen and 2 Novolog cartridges in an insulated lunch box with an ice pack.

Yes, it may very well be overkill. Okay, it's totally overkill. Maybe there will come a time when I just throw some amount of supplies that's closer to what we'll really need into a bag. I somehow managed to forget test strips when we traveled for Christmas a couple years ago, though, so now I'm anal about checking off more than we need of everything. Thankfully, after I posted about my need on Facebook a D-mom local to my parents whom I'd never met came to the rescue with a bottle of test strips. I have never yet forgotten insulin, which is the one thing we absolutely positively can't go without. 

Even though my dad comments nearly every time we visit that his grandparents managed to move across the ocean from Europe with only one suitcase, I'd rather be overprepared than underprepared. Maybe this year we'll skip the bag of board games we never play. Then again, maybe not. You never know when a Ticket to Ride emergency might crop up :).

In Which I Review the Story of a Longtime Diabetes Warrior

Disclaimer: I paid for this book with my own funds and have not been reimbursed in any fashion for this review. All opinions are my own.

There are a lot of great books out there about diabetes management. I've reviewed several of them this month. I've also reviewed one book about diabetes parenting and have another in the "to be reviewed" pile. Today's book falls into a third category: It's a memoir of life with diabetes written by a long time diabetes warrior.

Richard Vaughn published Beating the Odds: 64 Years of Diabetes Health in 2009. As of this writing Richard is still alive and has been living with diabetes for 74 years. When he was diagnosed at age 6 in 1945, it was common for diabetes to drastically shorten a person's lifespan. A newly diagnosed 10 year old in 1945 might be expected to live to 45 at the oldest. As his book's title suggests, Richard has beaten the odds.

Richard begins his story with his early childhood. Several years of poor health, beginning with three different types of measles at the age of 2, culminated in his diagnoses with type 1 diabetes (then known as juvenile diabetes). Because doctors knew very little about diabetes at that time, Richard's parents took him to 4 doctors before they got a diagnosis. One doctor prescribed a "tonic" (which was most likely sugar water) to improve appetite. Even the "diabetes expert" who finally gave the diagnosis could do nothing more than prescribe insulin and tell them to avoid giving their son sugar or food that contained a lot of sugar.

Reading about Richard's early life with diabetes made me feel very grateful that my daughter was diagnosed at six in 2017 and not in 1945. There is so much more knowledge about diabetes and so many better options for diabetes management now. Kittygirl is able to do everything her non-diabetic peers do, including playing sports and playing hard at recess. No one at Richard's school was trained to treat low blood sugar, which was an even more serious risk for people with diabetes in the 1940's than it is today because of the way the insulin formulations of the time worked. Richard was not allowed to participate in gym class or to play with his classmates at recess for fear that his blood sugar would go low, resulting in a seizure.

This gem of a book takes us through Richard's life, from a young child with diabetes to an adult who went to college and graduate school and enjoyed a long, successful career as a college math and statistics instructor. Coming from rural Virginia, it would have been an accomplishment for anyone of Richard's generation to finish college, let alone someone with a challenging chronic health condition.

Richard married and has two grown sons and several grandchildren. As diabetes technology has advanced, he has kept up with it and has used the advances to improve his diabetes management. When A1C tests first became available his A1Cs were very high, but he learned all he could about managing his diabetes better and began to work to lower his average blood sugar.

In addition to having written the book, Richard has been an active member of the diabetes online community (DOC) since 2006. In fact, it was members of the DOC who encouraged him to write a book expanding on blog posts he had written about his early life with diabetes

Richard is very active in a variety of diabetes Facebook groups, and regularly share stories from his life to encourage the parents of children with diabetes. His life reminds us that, if he could live a long, happy, and relatively healthy life with diabetes despite all the odds stacked against him, the chances are even better for our children.

Whether you have diabetes, your child has diabetes, or you're simply interested in a a fascinating personal narrative about how the treatment of the disease has changed since the mid 20th century, I highly recommend this book.

In Which I Realize That I Actually CAN Let Kittygirl Out of My Sight

Kittygirl was diagnosed with T1D just a few weeks after her 6th birthday. She had quite recently reached the age at which I was beginning to regularly leave her at playdates and birthday parties, and she had even begun to ask about sleepovers. When I was told that she would need to have a shot every time she ate anything and her blood sugar would need to be checked regularly, especially when she was playing actively, I was afraid I'd never be able to leave her alone again.

I was terrified to send her back to school (which happened just three days after diagnosis) because something might go horribly wrong. Despite the fact that, at that point in time, her teachers had had almost as much diabetes education as I had, I presumed I was better because I was her mom.

She survived the her first day of school after diagnosis, of course, and her care at school has always been great. Until she got an insulin pump, however, I still attended every playdate and birthday party. I wasn't comfortable asking other parents to give Kittygirl a shot. 

After Kittygirl got her pump, a mom at soccer asked if I was comfortable having her come to their house for a playdate. I nervously agreed, and proceeded to give the mom a 15 minute mini training session when she picked up Kittygirl. Everything went fine.

That winter, Kittygirl was invited to a birthday party. I had still been staying at every party, but, in the second semester of 1st grade, I had become unusual. First graders are normally dropped off at parties, at least around here. Kittygirl begged to be dropped off. I nervously asked the mom of the the birthday girl if she was comfortable texting me a picture of the food before Kittygirl ate and entering the number of carbs I gave her into the pump. I gave her a demonstration of how to use the pump. She was happy to help, and I walked out the door.

I was nervous enough that I didn't choose to go far. I parked myself at public library branch just 10 minutes from the birthday girl's house. I looked at Kittygirl's Dexcom graph about every 10 minutes to make sure she wasn't going low, despite the fact that I had alarms set to notify me earlier than the alarm on her phone would beep. Everything worked out fine, and I realized that, with friends with parents willing to learn, it really was acceptable to leave my T1D child at a party.

As time has gone on, I've gotten more and more confident leaving Kittygirl at playdates and parties. All the parents of her friends have been incredibly helpful and willing to learn. I realized we're blessed in that way. I've heard plenty of stories of kids who are excluded from parties and playdates because of their T1D.

We've entered new territory this year. The day camp Kittygirl has attended for two summers now is held at a local private school. I was nervous approaching them about accepting a child with T1D the first year, but they were totally open to it and willing to let me and Mr. Engineer train their staff. The school encourages kids to be independent in their own care (normally this is things like putting on their coats and tying their shoes) and they encouraged us to push Kittygirl into the first steps of independence in diabetes care. That camp was the first time (the summer after first grade) that Kittygirl tested her own blood sugar. This past summer (after second grade) we agreed we'd test out the idea of Kittygirl using her pump there with adult supervision. Since that worked well, we continued the practice this school year.

Kittygirl asked for even more independence when she begged to sign up for the Girls on the Run afterschool program. It's run by college age volunteers. I met with her main coach half an hour before the first session and gave her a brief rundown on diabetes, but Kittygirl has mostly been on her own dosing insulin for snacks and treating lows. It has not always gone well. You can read the post in which I reduce Kittygirl to tears to learn more. However, overall I've seen Kittygirl take some big steps.

Yesterday was the last session of Girls on the Run before the 5k this weekend. Unbeknownst to me, they had a Christmas party, and most of the food was not labeled for carb count. Instead of asking a coach to text me, Kittygirl looked at her plate and estimated the carbs on it. She nailed it. Her blood sugar never went above 124. I was amazed and proud when I found out.

Mind you, Kittygirl, who will turn nine in 2 months and 2 days, is far from fully independent in her diabetes care. She uses her pump and treats low on her own when we're not with her, but we do everything (and I do mean everything, including taking the pump out of the pouch) when she's with us. She is not ready to help change her pump sites or CGM sensors. In fact, she currently has no interest in learning. 

She's also quite a ways away from nighttime independence. It's a rare night that her blood sugar doesn't go low or high, and I still have never let her have a sleepover away from us. I've reached the point where I might consider it with a parent I know well who was willing to keep their phone on and all night and possibly get a call or a text. In fact, there was even a sleepover planned this summer but Kittygirl backed out at the last minute. Slumber parties, on the other hand, are a bridge I'm not yet willing to cross. I'm sure I'll get there, given how far I've come from the day Kittygirl was diagnosed, but I'm nervous about putting another parent on the spot to treat overnight highs or lows while dealing with all the other chaos that a slumber party entails.

The one thing I've never been really nervous about letting Kittygirl do, with or without diabetes, is climbing up to high places. She's an excellent climber, and she's also good at knowing how high she can climb and still get down safely. She has often gone so high in trees and on playground equipment that she makes other parents nervous.

I think this is a good analogy to giving your T1D child gradual independence. Of course you're not going to leave your newly diagnosed 3 year old at a party, just like you're not going to let any 3 year old climb to the top of a tree. However, as your child gets older, it's appropriate to give them more independence as they show readiness for it. 

Just like with climbing, this will look different for different kids. Some kids are giving themselves shots with adult supervision at 6. Others are still asking for help at 14. Some kids are climbing to the top of the monkey bars at 5, while others are having a hard time just crossing them at 8. 

I'm in favor of following the child's lead for the most part when it comes to independence in diabetes care. I think it's fine (and sometimes even advisable) to suggest the child try a new task (testing blood sugar, giving a shot, using their pump, etc), but I don't think it's a good idea to push. Even if you see 50 posts today on that diabetes parent Facebook group of 4 year olds testing their own blood sugar, it's really okay if you still do it for your 8 year old. 

My one caution (based on the experiences of others, not my own) is to avoid pushing all diabetes tasks on your child from an early age, even if they seem ready. This is likely to produce diabetes burnout sometime during adolescence. So far, I really like the balance we have of a lot of independence when Kittygirl is away from us and us totally taking over when we're together. Only time will tell if the balance we've achieved now will work out well long term.