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.