In Which I Look at Diabetes from My Daughter's Perspective

Having a kid with diabetes is hard. There's no way to get around it. However, being a kid with diabetes does not always feel hard, at least according to Kittygirl. As a matter of fact, she sees some advantages to having diabetes. Today I'm taking a look at what diabetes looks and feels like from the perspective of an 8 year old.

Kittygirl has never expressed significant sadness over her diabetes diagnosis. She doesn't like it. She does sometimes reflect wistfully on the days when her pancreas made insulin. However, she generally just takes it in stride and looks for the positive.

From her perspective, having diabetes isn't all bad, and in fact sometimes it's pretty cool. For instance, if I have bolused her for food and she doesn't like what was served to her (she's notoriously picky), she doesn't just get told be eat it or be hungry, she has to eat something with approximately the same number of carbohydrates. At home we find something equivalent to what she didn't eat, but occasionally when we're out it might mean she gets candy instead of the snack she thought she wanted from the food truck.

Kittygirl now handles many diabetes tasks on her own, but, in first grade, she had to go down to the nurse every day before lunch. She was allowed to take one friend with her, and that made her a rock star. Our school nurse at the time was really cool, and the kids loved to hang out with her. Kittygirl literally kept a waiting list in her mind of whose turn it was to come with her before lunch.

Diabetes for Kittygirl means, among other things, getting to wear cute diabetes shirts and pump pouches with her favorite characters. It means sometimes eating Skittles or Smarties in class or getting extra time to finish her lunch at school even if she was talking when she was supposed to be eating (don't get me started on how ridiculously short the lunch break is at school).

It means attending a free local day camp one Saturday every fall for kids with diabetes. When she's ready (most likely this summer) it will mean the opportunity to attend a week long sleepaway diabetes camp, probably at a younger age than her brother was first allowed to attend a week long sleepaway camp.

Diabetes means extra treats and gifts because we celebrate Kittygirl's Diaversary (that's the anniversary of her diagnosis date for the uninitiated) in addition to her birthday. She was diagnosed the Sunday of Presidents Day weekend in 2017, and, for the past two years, we've spent the weekend in Columbus, Ohio. We make a visit to COSI, the best science museum ever, and she gets to get one of her dolls' hair styled at the American Girl store. None of this would happen if she didn't have diabetes.

Finally, Diabetes for Kittygirl means the opportunity to attend the Friends for Life conference. I shared about this amazing conference for people with T1D and their families earlier this week, so I won't rehash it. However, I want to emphasize here that it's one of her favorite things of all time and she has said that she doesn't really mind having diabetes because if she didn't she wouldn't get to go to FFL and would never have met her FFL buddy.

As a bonus, this year after FFL our family tagged on four days at Universal Orlando, which we had considered going to for years. Because we might have to leave the line to treat a high or low blood sugar, Kittygirl qualifies for the Attractions Assistance Pass, which allows us to get a return time for a ride with a long wait and enter via the express line when our return time is up.  This was the only reason our family was able to ride the new Hagrid roller coaster this summer, which typically had a 3 hour wait. From a parent's perspective, I don't recommend exchanging your child's working pancreas for a ride on it, amazing as it is, but it was pretty cool that Kittygirl's lack of a working pancreas allowed us the opportunity to ride after waiting in a line that was much, much shorter than 3 hours.

Not all kids view having T1D the way Kittygirl does. Some are very anxious about it and go through depression brought on by their condition. I think that is partly due to the fact that those kids are naturally more prone to anxiety. However, I think that sometimes it's because a parent's attitude toward the disease rubs off on the kid.

I do worry about Kittygirl's future and diabetes does cause me stress, but I don't emphasize those things with Kittygirl. What I emphasize is that diabetes will sometimes make her life more challenging, but it won't stop her from achieving her dreams. Along the way, it might also net her some extra candy and shorter lines at amusement parks. :)

In Which I Review the First Book I Recommend to People New to T1D

Disclaimer: This is an unsolicited review. I purchased this book with my own funds and am reviewing it simply to provide more information to someone who might be interested in reading it. I have received no compensation of any kind for this review and all opinions are my own.

Some other parents of type 1 diabetics have shared with me their experience of spending anywhere from three days to a week in the hospital with their child receiving very thorough diabetes education. They have said it was like drinking from a fire house. They learned about everything from the biological mechanisms behind diabetes to tips on what to feed their child and how different types of activities could affect blood sugar. This was not our experience.

Mr. Engineer and I were given just enough information to safely bring Kittygirl home and keep her alive. We are curious researchers by nature (Mr. Engineer especially) and we wanted to know much than the basics of what to do to avoid killing our child. An Amazon search turned up the book Think Like a Pancreas by Gary Scheiner, MS, CDE.

Gary is a type 1 diabetic himself, as well as both a certified diabetes educator and an exercise physiologist. He heads up a diabetes practice known as Integrated Diabetes Services. It is located near Philadelphia, but Gary and his employees help people from around the world remotely.

I own the edition of the book that became available in early 2012. It is the second edition, and a third edition is scheduled to be available on Amazon in May of 2020. I imagine the new edition will have updated sections on the pumps, continuous glucose monitors, and new insulin formulations that have become available in the past 8 years, but I'm sure the substance of the book will remain the same.

This book gave us the diabetes education we wished we had gotten in the hospital. The plus was that we were able to digest the information at our own pace when we weren't in a stressful environment with our child hospitalized. For that reason, even those who have received a thorough education upon their own or their child's diagnosis could benefit from this book.

Gary begins by telling the story of his own T1D diagnosis and the path that led him to become a diabetes educator and an exercise physiologist in part to take control of his own diabetes management. In the next section, entitled, "What's the Dang Diddly Point?", Gary details why taking control of your diabetes treatment and trying to keep your blood sugar under control is important.

This book starts at the beginning, detailing the different types of diabetes (spoiler alert: there are more than two) and what happens inside the body of a person with diabetes.

There are sections detailing different types of insulin regimens as well as the many factors that can affect blood sugar. There is even a resource section at the end of the book.detailing places to get support, helpful books and blogs to read, and more.

This book is a treasure trove of helpful knowledge. Gary's down to earth writing style makes it very approachable and easy to read. In contrast to some other books I've read that discuss scientific and medical issues in detail, this book is clearly written for the diabetic or caregiver of a diabetic with no special medical knowledge.

If you're new the the world of type 1 diabetes, or you've been in it for a long time but you don't feel like you truly understand why this disease acts the way it does, I highly recommend picking up a copy of this book.

In Which I Love Diabetes Technology, Except When I Hate It

Diabetes treatment has advanced a lot in recent years. Back in the day, you had a little chemistry set in  your bathroom to measure the sugar in your urine (which is delayed by a few hours) and you took one insulin injection a day, of a dose that might stay the same for years at a time. Both insulin and blood sugar monitoring progressed to allow people to measure their own blood sugar at home using a small meter that would fit in a pocket and to be able to vary their diet a bit more with more injections of faster acting insulin.

A cure is what we all really want, of course, and, though there is some good research going on, in practice it's still pretty far out of reach. We actually weren't told this, but it seems people being diagnosed with type 1 diabetes have been told at least since the 1970's that a cure is 5-10 years away.
While we wait for a cure or at least radically improved treatment that doesn't involve regular insulin injection and blood sugar monitoring, we can be grateful for the amazing technology that's available.

Kittygirl wears a Tandem Tslim X2 insulin pump and a Dexcom continuous glucose monitor (CGM). For those who are unfamiliar with the technology, I'll explain how they work.

 The pump infuses insulin into her body through a site that is changed at home every three days. In her case, we use a site that leaves a tiny needle in her skin, which is attached to a long flexible tube that is attached to the insulin-filled cartridge in the pump. The pump is programmed with a "basal rate," which is a constant delivery of insulin at a certain rate and ratios to cover carbohydrates she eats and to lower high blood sugar. This particular pump has a fairly recent feature known as Basal IQ. Using CGM data, it cuts off her basal insulin when it predicts that her blood sugar will fall below 80 soon and/or when it is dropping at a very fast rate. Many people find this invaluable and rarely have lows because of it. In Kittygirl's case it is a useful tool, but her blood sugar tends to slide down to low very slowly and cutting off the insulin doesn't do enough so Basal IQ prevents a few lows and only mitigates the rest, making them easier to treat. In the picture below, the red areas on the pump show when insulin was cut off.

Her Dexcom CGM consists in a sensor she wears on her arm that is changed every ten days. A tiny wire goes under her skin and there are chemicals on it that react to the glucose level in her interstitial fluid and transmits the data to both a phone and her pump every ten minutes. Her phone transmits the data to the cloud, where Mr. Engineer and I can receive it through an app on our phones. A pic of the sensor and her phone are below.

These are both amazing tools and I'm incredibly grateful for them. Being able to see Kittygirl's blood sugar at any time even when we're away from her has allowed us to do two things with confidence. First of all, it has allowed us to understand in a way you simply can't even with hourly blood sugar measurements with a meter the way food, activity, and insulin affect her body. This has allowed us to make adjustments to her food an insulin doses with confidence, which has allowed us to keep her blood sugar in range much more often than average (though still not as often as we want to), allowing for an A1C that consistently impresses her doctor and gives her the best chance at good long term healthy.

Secondly, it has allowed us to send Kittygirl to birthday parties, on playdates, and to other places where the adults in charge have little, if any, training in diabetes care. If there is food involved, I simply ask the adult to text me a  picture so that I can give a carb count. When Kittygirl was younger, I gave a quick tutorial in using the pump, but now Kittygirl does that herself with an adult looking on. I can also see on my phone if Kittygirl's blood sugar is running low and text the adult in charge to give her some food before it gets too low.

So why do I sometimes hate this awesome technology? The first reason is because I feel kind of bad for her because she has to wear it all the time. Diabetes is an invisible disability, but diabetes technology can be very visible, and sometimes that bothers Kittygirl. In the summer kids at the park or the pool and constantly asking her what's on her arm, and she really doesn't feel like telling them. If I get the pump out to give her insulin for  a snack in front of strangers, they always want to know what I'm doing. It gets tiresome. 

In the interest of full disclosure, I should note that Kittygirl could technically wear the sensors on a less visible part of her body. In fact, the only FDA approved areas are the stomach and the lower back. However, Kittygirl is so lean that the sensors have a hard time accessing enough interstitial fluid to get good readings. 

Also, I feel kind of bad when Kittygirl points out that she's almost never truly naked because she always has a pump site and a sensor. This doesn't truly bother her. She just points it out as an interesting fact. However, it makes me a little sad that she needs to wear these devices to live the most normal life possible.

These concerns are outweighed by the benefits that the technology gives both to her and to me and Mr. Engineer as her parents, but I wish we could live life without thinking about blood sugar and insulin doses.

The other reason I sometimes hate diabetes technology is all about me. I have a tendency to let it take over my life. This is particularly true for the Dexcom. I have a bad habit of obsessively checking the Dexcom follow app on my phone, even when a huge change is unlikely. For years, I had the alarms on my phone set such that they went off as soon as Kittygirl's blood sugar was out of range. This was unnecessary when she was with me because her alarm would go off and we'd get alarms in stereo. When she wasn't with me, for instance when she was at school, the alarms were useless because I wasn't the one in charge of dealing with them.

This all led me to be seriously stressed out over Kittygirl's blood sugar. In fact, I even damaged a phone in my frustration over her blood sugar. Squirrlboy and I were in the living room doing homeschool work (it was history, in case you care) and Kittygirl's low alarm kept going off. I knew that she was taking a test that morning, and it frustrated me to no end to think that she and her teachers had to keep getting interrupted and that she probably wasn't performing at her best level. Then Squirrelboy made some kind of wisecrack and it pushed me over the edge. I threw my phone across the room. Though it was in a case and landed on carpet, I still managed to shatter the screen.

After that I determined to be less crazy about Kittygirl's blood sugar and I even sometimes turned off the alarms when Mr. Engineer was fully in charge because they were on an outing together or I was away for the evening. I still kept them on most of the time until about six weeks ago, however.

At that point Mr. Engineer (who, you might have noticed, gives pretty good advice) told me he was really tired of me freaking out over Kittygirl's blood sugar all the time and also tired of hearing alarms in stereo and I had to do something to solve the problem. I experimented with lengthening the amount of time Kittygirl's blood sugar had to be low or high before my alarm went off. It was surprisingly freeing. I lengthened it even more. I still get alarms when Kittygirl's blood sugar is out of range for more than an hour on the low side or two hours on the high side, but I'm not obsessing over it anymore and it's amazing. Sometimes I actually go a whole school day without checking my Dexcom app.

Diabetes technology offers a lot of benefits. I wish it were available to everyone. It can offer a child with diabetes freedom that's harder to come by when their blood sugar has to be checked with a meter regularly and they need to receive injections of insulin many times a day. However, caregivers of type 1 diabetics need to check themselves to make sure they're not letting the technology take over their lives.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Which I Kick Off Diabetes Awareness Month by Sharing Our Diagnosis Story

It's November 1st, and, even though it's still sort of like the day before Halloween here with the trick or treat schedule move, it's the first day of diabetes awareness month. In every post this month, I'll be sharing about type 1 diabetes and how it shapes our lives. I'll start today by sharing our diagnosis story. I've chosen to call it "our" diagnosis story as opposed to "Kittygirl's" diagnosis story because, while diabetes obviously has an effect on Kittygirl that it doesn't have on anyone else in our family since her body is the one dealing with it, a T1D diagnosis really affects the whole family when a child is diagnosed. The parents are normally the ones managing the condition and we can almost feel like we have diabetes ourselves. It affects siblings too in different ways, and I'll get into that later this month.

Type 1 diabetes, in case you're unaware, is an autoimmune disease in which the immune system attacks the insulin producing beta cells of the pancreas. Once about 80% of these cells have been killed (or maybe just made dormant, the jury is still out on that one) the symptoms of type 1 diabetes begin to manifest. Possible symptoms are below. If you or a loved one are experiencing or ever experience these symptoms, please see a doctor right away and ask to be tested for diabetes. It can happen at any age, from infancy all the way to your golden years.

Given the fact that type 1 diabetes develops over a period of months and possibly even up to a year or more, it's probable that Kittygirls immune system began attacking her pancreas sometime when she was five, possibly near the beginning of her kindergarten year in the fall of 2016. We had no idea it was happening at first, and were even pretty clueless when symptoms began to show up in early 2017.

The first obvious symptom for Kittygirl was frequent urination. In her case, it first showed up as frequent urination at night. This was a kid who never peed at night. Even when she was an infant, she kept her diaper dry at night. Nighttime potty training was no feat at all. She just did it. Quite suddenly, shortly after Christmas, she started getting up to use the bathroom at least once after going to bed. We made her stay on the toilet extra time at bedtime. We reduced liquids at dinner. It just kept getting worse.

At this point I actually mentioned to Mr. Engineer that frequent urination was a symptom of diabetes and I was a bit concerned. He assured me (in vain, as it turned out) that there was no way Kittygirl had diabetes and I was just being a worry wart, which is pretty common for me. I start googling the symptoms of a brain tumor when I have headache. I put it out of my mind for a time.

Somehow we never noticed it, but Kittygirl was also slowly losing weight. All told she lost 4 pounds, which, when you only started out weighing 45, is a big deal. We might have gone much longer blowing off her symptoms if my mom hadn't come to visit for Presidents Day weekend in February. She asked us if Kittygirl had lost weight and commented on how thin she looked compared to when she last saw her at Christmas.

She watched her use the bathroom a lot and drink copious amounts of soda when we went out to dinner, and Saturday evening she told us she really thought we should have take her to the doctor soon. She had a well check coming up in a couple of weeks and I had intended to bring up our concerns then, but my mom pressed me to make an appointment sooner rather than later. I resolved to call the doctor on Monday. Then over night between Saturday and Sunday Kittygirl got up to use the bathroom five times. We could no longer deny it. There was obviously something wrong.

I decided to take Kittygirl into the walk in clinic at our doctor's office first thing Sunday morning. My mom came with us. Mr. Engineer and Squirrelboy went on the church, and we were still hoping we'd find something other than diabetes was to blame (maybe a UTI, or chronic constipation, which actually caused frequent urination for Squirrelboy at the same age) and be able to join them in time for the 11am service.

I was in such denial that, when we checked in, I gave a suspected UTI as the reason for the visit even though I already knew in my  heart that the most likely cause of Kittygirl's symptoms was type 1 diabetes. While we were waiting to be seen by the physician's assistant on duty Kittygirl munched on goldfish. Before we went back, we were asked to get a urine sample, which the PA looked at before seeing us.

When she entered the room, I could tell by the look on her face that the urine sample did not show evidence of a simple UTI. She told me Kittygirl's urine was full of sugar and that she had to test her blood sugar. Kittygirl received the first of countless finger pokes to test blood sugar. The meter just read HI, which meant her blood sugar was over 600. The PA told us she couldn't give an official diagnosis based on blood sugar alone, but that Kittygirl almost certainly had type 1 diabetes and we should head for Kentucky Children's Hospital (thankfully only 20 minutes away) as soon as possible and not let Kittygirl eat anything else or drink anything other than water. For reasons I don't fully understand, the office was unable to let the hospital know we were coming or transfer any files, but they did give us a copy of her file including the results from the urine and blood sugar tests.

We called Mr. Engineer to let him know what was happening and left for the hospital. When I gave the reason for our visit upon arriving we were ushered to a room within 10 minutes. The nurse came in to insert an IV for fluids and take more blood for testing. She said they would probable set up an insulin drip soon to begin getting Kittygirl's blood sugar under control.

An hour later, she came back to report that, while Kittygirl's blood ketones were high, her blood was not acidic and she was not in DKA. Instead of an insulin drip, she received a shot of Lantus, a long acting "basal" insulin that all T1Ds take once a day unless they are wearing a pump that gives them fast acting insulin continuously at a "basal rate." Kittygirl was a champ through all of this.

The pediatrician on call then came in to discuss the results of her blood tests. He said that all the data pointed to type 1 diabetes, but he couldn't officially say it was type 1 or some other rare type until the tests for T1D antibodies came back (spoiler alert, it was positive for all the antibodies they tested for). Either way, she would need to start taking insulin.

That pediatrician was the shining star in our diagnosis story, and I wish I had remembered his name so I could thank him publicly. He assured us that Kittygirl could go on to live a normal life, just with extra steps added in. He said that sports, sleepovers, pizza, cake at birthday parties, etc, would all still be possible. He told us that his teenage daughter's boyfriend was a type 1 diabetic and a cross country runner and living a normal teenage life.

We were checked into the emergency room around 12pm, and weren't moved to a room in the children's hospital until almost 8pm. Kittygirl was starving. She hadn't been allowed to eat anything since around 11am. The nurse on duty came in and told us Kittygirl could have dinner, but first we needed to learn how to count carbs so that we could figure our her insulin dose for the meal.

The nurse gave us a book of carb counts for common foods and the nurse helped us look up the foods that were in Kittygirl's dinner: chicken fingers and french fries. They told us that at this point she should get the insulin shortly after eating and had us count the number of fries she ate as part of calculating how much insulin she needed. The nurse also tested her blood sugar before she started eating. It was still high, but going down.

Using a standard formula for a child her age, the nurse had us calculate Kittygirl's insulin dosed based on her pre-meal blood sugar and the number of carbohydrates she ate. The nurse gave the shot that time, but told us we would have to start giving them the next day.

I spent the night at the hospital with Kittygirl, and I was in charge (with the nurse's supervision) of calculating Kittygirl's breakfast insulin and giving her a shot of insulin. By midmorning it was determined that Kittygirl was no longer dehydrated. Her IV was disconnected and she was allowed to move around the hospital. She really enjoyed the playroom.

That day was filled with a visit from the on call endocrinologist and sessions with a diabetes educator. We were given a huge binder including carb counts and information about type 1 diabetes. At the end of the afternoon we were given a written test. Spoiler alert: we passed with flying colors. We'd both calculated carbs and given at least one insulin shot and we were told Kittygirl could stay longer if we felt uncomfortable, but that medically there was nothing she needed that we couldn't do at home and they were happy to release her.

We chose to go home. It took a few hours to get Kittygirl's prescriptions sent up and all the paperwork filled out. Kittygirl ended up eating dinner at the hospital and we weren't released until just after 8pm. We gave her her first shot of basal insulin from the insulin pen prescribed to us.

We then went home to begin our new life.

In Which My Kids Are Not Super Special Snowflakes

Today is Halloween. Until yesterday afternoon I was planning to take Kittygirl out trick or treating this evening. Then our city made the decision around 3pm yesterday to move trick or treating to Saturday November 2nd from 3-5pm. Why? Because it MIGHT rain tonight and the mayor wants "to err on the side of caution for the safety of the children".

This is a travesty for two reasons. First, while I do acknowledge there are rare times when trick or treating should be moved due to true severe weather, possible rain is not a good reason to move trick or treating. Secondly, who trick or treats from 3-5pm?!?1? To be fair, I should acknowledge that the area of Wisconsin in which Mr. Engineer grew up has done trick or treating from 3-5pm the Sunday closest to Halloween at least since his childhood in the 1980's. However, our city has ALWAYS done trick or treating from 6-8pm. Even on the few occasions when the date has been moved, the time has never changed.

Aside from my love of Halloween and my personal indignation at this change, I feel like it speaks to a  larger problem in our society of treating children as super special snowflakes who must be protected not only from every possible harm but from every possible inconvenience. As the mother of two children who have actual, certified special needs I feel the need to speak out against this trend.

My kids have special needs. One needed years of extra help to learn to read and write and will always struggle in that area. In order to concentrate in school, the same child needs to take medication daily. He has a harder time regulating his emotions and controlling his impulses than people without ADHD. My other child has a body that does not produce a hormone necessary for life. She will need to receive insulin through either injections or an infusion pump throughout the day and regularly check her blood sugar for the rest of her life (barring a cure). However, they still live in the real world and they're going to need to learn survive in it without it constantly being rearranged for them. They are not and should not be treated as super special snowflakes

When Squirrelboy grows up, if he works for a traditional company, he will need to get used to the fact that any written work he needs to do for his job will be due when it is due and his boss is not legally required to accommodate his dyslexia or his ADHD with a 504 plan. When Kittygirl grows up, she will need to manage her diabetes completely on her own, even in stressful situations. She can't put off picking up insulin if it runs out just because she doesn't feel like going out in the rain.

The prevailing mindset among today's parents seems to be that everything needs to be arranged to suit their kids. This doesn't just involve trick or treating.  Your kid got a bad grade? Time to call a conference at which you pressure the teacher to change the grade or provide extra credit to raise your child's grade. Clearly the bad grade is the teacher's fault. Your kid broke the rules at the trampoline park and got hurt? Time to sue. Clearly it's the corporation's fault that your kid took a swan dive into the foam pit, hit the wall, and chipped his tooth.

When these kids grow up (and some are already there or getting close) they'll go out into the world thinking that everyone is going to bend over backwards to serve their needs. They'll get  a nasty surprise. Their employers (and even their college professors) are not going to treat them the way their parents did. The parents of these children are doing them a serious disservice.

We need our children to know that we love them, and we need to provide them with the things they genuinely need. Sometimes these things include a modified educational environment or other changes to meet their needs.  However, an effort to protect our children from every single negative experience is not good for them. Let's start by letting them trick or treat in the rain

In Which Little Things Make a Big Difference

When you have more than one kid, it's always difficult to balance their needs and juggle their schedules. This fall, Squirrelboy has gotten the short shrift schedule-wise, as I mentioned in an earlier post. Because of Kittygirl having an after school activity four days a week and Squirrelboy having one her one free day, it has been rare for me to have a free afternoon to bring Squirrelboy to the other side of town to go mountain biking.

This week there are no regular ballet classes because there's a show, which Kittygirl elected not to be in. I quite suddenly remembered that yesterday when the kids were at school. I didn't have to pick up Kittygirl until Girls on the Run ended at 4pm, so I calculated that I had enough time to run Squirrelboy to the trails and get back in time to get Kittygirl at 4pm if I brought his bike with me at pickup.

He threw a wrench into the works when he called and asked me if he could stay 20 minutes late to help make a video for the school news show. However, I got the reaction I was aiming for when he came out and saw his bike. His face lit up, and he eagerly agreed to go out to the trail. I needlessly stressed myself out thinking that I might be late picking up Kittygirl, but it all worked out. Despite getting a flat near the end of his ride, that chance to do his favorite activity made his week.

Taking Squirrelboy to the mountain bike trails was a little thing, but it made a big difference for him. It served as a reminder to me that little things can make a big difference in a lot of realms, especially when you and/or your kids have some kind of special need or challenge in your lives.

The other day Squirrelboy asked me, "How do some people make it to high school and still be so immature?" For a few years he lagged behind many of his peers in maturity, so it was simultaneously surprising and heartwarming to hear his question. I realized that he has reached this point as the result of a million little things Mr. Engineer and I have done as parents.

One thing we've done is to insist that he always put forth his best effort. Sometimes, because of his dyslexia and ADHD, it takes 3 times longer (or more) for him to be his best work than it would take one of his typical peers to do their best work. It would be so easy for him to throw in the towel and just not do the work at all or rush through it and put very little effort into it. We never put an emphasis on grades or praised A's over B's. We made it clear that his best effort was what mattered, whether that best effort earned an A, a B, or an even lower grade.

We also worked for many years, and are still working, on teaching him to think before he acts and to think about what effect his words and actions could have on other people. He's usually pretty good at this in public at this point. With his sister, not so much.

Finally, we taught him to respect authority. Even when he didn't like his teachers, even when we didn't like his teachers, we taught him to respect their authority and listen to them unless they were clearly doing something wrong. We taught him to respect our authority as his parents and worked to earn his respect.

All of this has added up to a kid who looks at a segment of his peers and asks, "How did they get this far in life and still be so immature?" I'm not saying that the parents of every single immature kid has done everything wrong. I can't see into these kids' brains. Maybe there's something going on that makes it more challenging for them to control their impulses. Maybe their parents worked just as hard as we did but the kids are currently in a deep rebellion.

What I do know is that Squirrelboy would not be the happy, well adjusted, polite high school freshman he is if we had not done a million little things to guide him in that direction over the past 14+ years.