Christmas List

Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.

As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.

Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.

For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.

A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.

Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?

Me: Yeah, I guess so. Is that something you really want?

Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?

Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.

(long silence, Henry regards the back of the book)

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Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?

Me: Well, some people say yes, and some people say no.

Henry: So, is diabetes a disease?

Me: I think you’re the person who gets to decide that. So, what do you think?

Henry: I think diabetes is just diabetes.

 

2nd Diaversary: 731 Days of Living with T1D

I like my birthday less than I used to. Of course it still happily marks another year of life to celebrate with friends and family, but March 5th also marks the last day my son would ever not have type 1 diabetes. On March 6, 2016, my son has been living with (diagnosed) T1D for 731 days (there’s a leap year in there), roughly 37% of his life.

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Semisweet Soap (0 carbs)

We haven’t figured out how to mark or celebrate his diaversary, a neologism for the anniversary of a diabetes diagnosis. I think we’ll wait for Henry to take the lead on this. However, I’ve been reflecting on this upcoming date for a few weeks now. Moments like this are mile-markers because they disrupt the routine of counting carbs, insulin delivery, and correcting highs and lows. If I think about the preponderance of diabetes care all at once, it’s overwhelming, so the task-to-task perspective allows me to get up each day, put my boots on, and do it all again. Yet, around these mile-marker moments, I usually peek out the window at the vast appalling and inspiring mountain range that is T1D management.

On March 1st, I recorded all my actions related to T1D care. Here’s one day of T1D care. It’s only one day. Some days are better. Some days are worse. We’ll do it all again tomorrow.


KEY

basal= background insulin being delivered by pump

bolus= a larger amount of insluin delivered at meal and snack to cover carbs

BG= blood glucose

CGM= continuous glucose monitor, provides an estimate of Henry’s blood glucose every 5 minutes

Dexcom Share allows us to see blood glucose values on our phones

ezBG= pump function calculates how much insulin to deliver to correct a high BG

IOB= insulin on board, the amount of insulin that has been administered and is still circulating


12:03 a.m.- check BG by blood, 74 with an arrow down to the side, half a juice box

2:00 a.m. – wake up to alarm, check BG on CGM, 147 with an arrow straight across go back to sleep

5:00 a.m.- wake up to alarm, check BG on CGM, 220 with an arrow straight across, so check BG by blood, it’s really 309, give 1.25 units of insulin, go back to sleep

7:00 a.m.- wake up to alarm, check BG on CGM, 137 with an arrow down to the side, so I get ready for work

7:30 a.m.- check BG by blood, 130, while Henry is still asleep, prebolus 1.5 units of insulin for a breakfast of 25 carbs

7:35 a.m.- help Henry get dressed so that the pump and CGM sites stay secure

7:55 a.m.- Henry eats breakfast, a low carb, sugar free muffin and a scrambled egg with cheese

8:35 a.m.- check BG on CGM 107 down to the side, get d-bag ready for school

9:05 a.m.- drop Henry off at preschool, get CGM on Wi-Fi, check BG by blood, 210, give .15 units of insulin to correct high

9:15 a.m.- listen to a diabetes podcast during morning email and class preparation

10:08 a.m.- text from Henry’s preschool teacher/s: Did another ezBG, I look at BG remotely, 320

10:59 a.m.- right before teaching, look at BG remotely, still 320

11:17 a.m.-text from Henry’s preschool teacher/s: We did another ezBG at 10:30 and it gave another .3. He had 1.07 IOB at the time. 

11:45 a.m.- Husband calls during class, saying he went to check on Henry, who has large ketones. Pump said to give 6.6, but this would be way beyond the most insulin Henry’s ever had at once, and it made my husband nervous, so he gave Henry 5.6 units of insulin to correct for large ketones and cover his lunch of grilled cheese and tomato soup. 5.6 is the second highest amount of insulin Henry’s ever had on board.

12:01 p.m.-look at BG remotely, 329 with an arrow up at the side

12:15 p.m.- listen to voicemail from drugstore about prescription problem with test strips

12:45 p.m.- while on a way to a meeting, read text from husband: I called the school and told them to go ahead and give the additional unit I was worried about, look at BG remotely, 363 with an arrow up at the side

1:15 p.m.- during meeting, unsuccessfully try not to think of Henry’s ketones and blood sugar

1:53 p.m.- text from Henry’s preschool teacher/s: We gave another unit and are continuing to push water. Will have cheese stick and beef stick for snack, husband texts back and asks that Henry be given 1 additional unit of insulin to help clear ketones.

2:30 p.m.- look at BG remotely, 263 with an arrow straight across

2:33 p.m.- look at BG remotely, 260 with an arrow straight across

2:38 p.m.- look at BG remotely, 260 with an arrow straight across, realize I have to stop obsessing and get some work done

3:08 p.m.- look at BG remotely, 141 with double arrows down, which means Henry’s BG is falling faster than 3mg/dL per minute, text to his teacher/s: Now he’s falling fast! What’s his real BG and how much IOB? 

3:16 p.m.- look at BG remotely, 111 with double arrows down, call classroom and talk with student worker who tells me that IOB is 1.16, I tell her to give Henry 2 glucose tabs, text husband this information

3:25 p.m.-look at BG remotely, 95 with double arrows down, I tell myself I am a logical person, that the sugar will do its job and the CGM is lagging, so he’s probably leveling off, not spiraling down

3:29 p.m.- text from Henry’s preschool teacher/s: 97 and .92 IOB, gave two tabs 15 min. ago, CGM says 84 with double arrows down

3:58 p.m.- look at BG remotely, NO DATA

4:16 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across

4:31 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across, then Henry walks through the door with his papa, who said his BG by blood was 112

4:46 p.m-. my phone buzzes with a Dexcom alert, I don’t check, knowing it’s still catching up form the fast drop

5:40 p.m.- check BG by blood, 95 and prebolus 1.4 units of insulin for a dinner of 40 carbs

6:10 p.m.- during dinner my phone buzzes with a Dexcom alert, CGM says BG is 74 straight across

7:00 p.m.- check BG on CGM, 121, an arrow straight across

7:28 p.m. – help Henry change out of his clothes and into his pajamas to preserve pump and CGM sites

7:32 p.m.- check BG by blood, 111, give .55 units for a high protein bedtime snack of 11 carbs

7:40 p.m.- add some new basal times and programs to avoid nighttime highs, which have been more or less constant for the past few days

7:56 p.m.- check BG on CGM, 160, an arrow straight up

8:56 p.m.- check BG on CGM, 157, an arrow straight across

9:32 p.m.- check BG on CGM, 134, an arrow straight across

9:46 p.m.- silence reminder alarm from pump to check BG 2 hours after insulin delivery

10:10 p.m.- check BG on CGM, 181, an arrow straight across

10:39 p.m.- check BG on CGM, 177, an arrow straight across, decide to check BG by blood, 209, give .7 units of insulin

11:32 p.m.- check BG on CGM, 168, an arrow straight across

11:42 p.m.- check BG on CGM, 158, an arrow straight across, set alarm for 12:40 a.m., 3:00 a.m., and 6:00 a.m.

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today 

 

 

Diabetes & New Year’s Resolutions

I really enjoy the first week of the new year. The glut of the holidays is packed away, and while there’s reflection on the past, there’s more focus on the upcoming year. I work in academics, so the semester has yet to start, and our small town is usually covered in about a foot of snow. It’s quant, so this seems like the perfect time to reflect and plan. However, I’m not someone who makes New Year’s resolutions. In general, I believe that if there’s something I want to change or start, any random Thursday is just as good as New Year’s.

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a new year walk in the snow

Yet, type 1 diabetes has made me reconsider many assumptions and mores. The possible wisdom in establishing some resolutions at the start of the new year is just one of them. On her blog, Inspired by Isabella, T1D mom (and mother of triplets!) Kristina Dooley, wrote a post called “Losing Sight” that bravely discusses some of the biological stressors of being a T1D caretaker to a young child. Almost two years into the life of a d-mom and I can feel the effects of chronic sleep deprivation: foggy thinking, an increasing obsession with coffee, and higher stress levels.

Diabetes (both 1 and 2) is insidious for hundreds of reasons, but at the start of the new year, it seems that T1D is particularly cruel because there’s never a chance to regroup. Once that medical professional says “your child has type 1 diabetes” there’s no off-ramp. Instead, the person living with T1D, and to a smaller extent, his or her family, is running a marathon. For life.

We’ll look for the shady spots, like a three hour window with in-range steady blood sugars.

Maybe the start of 2016 is another good moment to rest. We don’t have much time before we’re back in the slog, so I think a few resolutions might help reframe our 2016 leg of T1D marathon: more protein, more sleep, and less worry about what’s beyond our control. On second thought, these are pretty lofty goals. I’ll settle for more sleep.

‘Tis the Cookie Season

A few weeks after starting Kindergarten, I noticed a blue ring around my non T1D daughter’s mouth. When I asked her about it, she quipped, “Brain’s birthday,” which I later found out meant that with 24 kids in class over 36 weeks of school means  a birthday celebration every two weeks. Plus holiday parties. Even before type 1 diabetes entered our family, we’d reserved sweet treats for special occasions. If a child asks for something like a grocery store cupcake, we generally respond with, “It’s probably not a good idea for anyone to eat that.” Sure, a grocery store cup cake once in a while is fine, but treats like this seem to have permeated childhood.

I think most parents aren’t thrilled about the idea of their kids eating this kind of food. Now imagine your child has type 1 diabetes.

Generally, this scenario can go two ways. The child with diabetes is told he or she can’t have the treat by a parent volunteer or teacher, so then the kid gets to eat nothing (or sugar-free Jell-O) while watching his or her classmates enjoy deli cupcakes or cookies. In the second scenario, the child gets to eat the treat, because children with type 1 can eat anything, but it’s just impossible to get synthetic insulin to match the metabolic challenge that is a partially hydrogenated, shelf-stable, steroid level sugared, red dye #3 filled deli cupcake. So the kid with type 1 eats the cupcake, and has an elevated blood sugar for several hours, which is difficult to bring down, and during this elevated blood sugar, the kid feels foggy, tired, achey, thirsty, and upset. So, what’s the right choice? There isn’t one.

As parents, we’ve fallen on both sides of the sugar divide. We’ve let our son eat cupcakes at birthday parties and battled 300-400 blood sugars into the night that don’t seem to budge no matter how much insulin we pour on it. In other instances, we’ve brought our own low carb “treat,” avoided events, or distracted him. Moments like this reveal that diabetes is often a choice between bad and worse.

As we enter another season of sweets, we’ll fall on both sides of the sugar divide, and recognize that when a parent has to choose between bad and worse, it’s a pretty lousy feeling.

This week we were at a birthday party, for which we’d planned all day.  We knew the carb counts of what would be at the party. We’d purposefully kept our son’s carb intake light in preparation for the party. We had a rockin’ prebolus and temporary increased basal. At the dessert buffet, we let Henry choose anything he wanted to eat, and he ate gold fish, clementines, a cupcake, pretzels in a pool of white chocolate, peanuts covered in chocolate, and pop corn. He selected almost everything except for this cookie, but he kept circling back to it during the party.

cookiesjpg

During his third trip to the table, I walked over to talk with him about it. He said, “Mama, look at those cookies.”

“I know,” I said. “Those cookies look really silly. I think they were made to look like a Dr. Seuss character.”

“Yeah,” he said, and he just stood there a long time. A long time. Not taking one. Not asking for one. Just looking.

“What do you think they taste like?” he asked.

Not wanting to pile more sugar on what was a high and rapidly rising blood sugar, I said, “I think they taste sour.”

As these words were coming out of my mouth, I knew they were simultaneously the easy and worse choice. We never tell Henry that he can’t eat something because he has type 1 diabetes, but in a way, I just did.

He walked away from the table and played soccer with a balloon as we helped clean up for the next hour. We headed over to our hosts’ house, where all the cookies and party treats followed. We ordered Chinese food for dinner, and learning from our previous Chinese food experience two weeks ago, we went bold with insulin and ran a combo bolus coupled with an increased basal. About 45 minutes after dinner, Henry’s blood glucose was 70 with 1.39 units of insulin on board.

“Hey Henry,” I asked, “Do you want to try one of those cookies with the silly eyes?”

“Yeeeeeesssss,” he shouted, and ran to the kitchen.

He came back with the cookie accomplished, and while dusting the crumbs from his thumbs on his shirt, he said, “Hey mama, those cookies don’t taste sour.” He said it with this kind of crazy half-smile that told me he was dubious about sour cookies from the get-go. Smart kid.

A Season of Thankful Awareness

In a recent post on A Sweet Life, “Neonatal Monogenic Diabetes: Cameron Lundfelt’s Story,” Cameron’s mom describes the overwhelming standard of care given to young children with garden variety T1D, “I was always concerned about when did he last eatWhat are his sugar levels?  When is the next time he has to have a shot?  Did I give him too much insulin at the last meal? Did I not give him enough insulin? I lay awake at night wondering how I could have done better at keeping his sugars ‘within range.'” Through Cameron’s mom’s diligence, it was later discovered that Cameron has a rare form of diabetes caused by a genetic mutation that can be controlled with oral medication, but all parents of children with diabetes know the fears and worries she describes.

November is almost over, so Diabetes Awareness Month is coming to a close, but the end of the year holidays are starting. Diabetes Awareness Month juxtaposed to the holiday season means awareness morphs back into silent difficulties for so many families living with T1D.

Here we are, at the end of November, taking a deep breath and sharing the life we live in two hour increments during each day and night of all twelve months.

Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on

As we enter the holiday season, we’re glad for:

  1. insulin
  2. Fredrick Banting and Charles Best, discoverers of insulin
  3. Dexcom, a continuous glucose monitor
  4. batteries that power insulin pumps
  5. insulin pumps
  6. the Diabetes Online Community
  7. Children with Diabetes, Friends for Life Conference
  8. Henry’s dedicated and caring preschool teachers
  9. Ed Damiano, Denise Faustman, JDRF
  10. Henry’s sense of humor

And after all the chaos, illness, and destruction, the last thing to fly out of Pandora’s box:

The last thing to fly out of Pandora's box. #handsofhope #projectbluenovember

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Trick-or-Treat Cheat Sheet

When our children were very young, we trick-or-treated in a neighborhood of Los Angeles where our good friends lived. It just so happened many scenic and sound design, as well as prop folks, who worked in the movie industry, lived here. Hollywood loves Halloween. It was not uncommon for a home owner to create a haunted house in his or her front yard, or for macabre Halloween scenes to be staged in rented trailers and placed in driveways.

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As new parents, this holiday geared toward children, celebrated in a truly fantastic way, hardwired its way into the robust and fun experiences we wanted to give our children in their childhood.

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Fast-forward about 1,800 miles and almost two years, when our son was diagnosed with type 1 diabetes; last Halloween was his first trick-or treating experience with type 1 diabetes. Halloween is just one of the many occasions that makes parents of children with type 1 diabetes more creative, vigilant, and exasperated.

I understand, there’s multiple ways for families living with type 1 diabetes to navigate Halloween: a candy buy back, or perhaps a “switch witch” leaves a desired toy in exchange for a pile of candy.

Last year, I fretted and worried. We put out a teal pumpkin, and yet I was determined that our son would experience every ounce of this holiday, just like any other kid with a fully functioning pancreas. Secretly, I was prepared for a candy buy back. I had a roll of quarters ready, as well as a really neat Lego set two swap for candy, but we didn’t need either.

What we did need, was a really cool cheat sheet that listed common candy servings and carbs. There’s lots of lists out there, but we used one from the JDRF. Here’s this year’s JDRF Candy Carb Counts. I printed several copies to keep in my back pocket and invested in a nice Surefire flashlight. I cranked Henry’s basal up a bit, and in the oncoming cold midwestern winter, this fireman raced door to door, eating chocolate along the way.

Henry's first Halloween with type 1 diabetes

Henry’s first Halloween with type 1 diabetes

You know what? He went low, a couple of times, but no problem. We had a whole bag of fast-acting carbs to deal with that.

Teal Pumpkins Are Hard

So, there’s this awesome dad, who hand delivered notes to his neighbors before Halloween, to explain that his son was on a Ketogenic Diet, and could not have any sugar because it could trigger seizures. The father attached a small toy to each letter, so that his son, like any other goblin, witch, or ghoul, could enjoy trick-or-treating.

Parenting is a paradoxical slog into empathy, sacrifice, and joy. Now complicate that journey with a condition, syndrome, or diagnosis, which means one guiding hand tries to soften the blows the world will deliver, while the other toughens the exterior to face the world. Sometimes, the right confuses the left.

After our three-year-old son was diagnosed with type 1 diabetes, we started seeking out opportunities that would simultaneously educate and prepare our son for the world and the world for our son.

There’s a teal pumpkin project, whose pledge promises “extra kindness to kids” by supplying “non-food treats at the store like glow sticks, stickers, bracelets, and more” on Halloween (www.foodallergy.org). Last year was our son’s first Halloween with type 1 diabetes, so we had a teal pumpkin and passed out stickers, play-dough, and tattoos instead of candy. He trick-or-treated in our neighborhood and collected 100% candy, which we let him eat a little bit of over time, and with a lot of extra insulin. The left and the right.

This year, we were planning the same, but teal pumpkins are hard. While searching for non-food treats at the fourth store in two weeks, I encountered this display:

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in the health food section of our local grocery chain, next to boxes and boxes or gummy treats, which have 17 carbs per pouch, and are most certainly food, violating pledge item #2: “non-food treats.”

So, instead of optimistically shopping in the adjacent town for Halloween non-food treats, I bought three bags of Smarties. I figure the left over Smarties, (6 carbs per roll), will become medicine for my son to treat hypoglycemia.

Ironically, I’ve seen more information and displays about teal pumpkins this year than last, but less feasible ways to create a teal pumpkin trick-or-treating experience. I suppose, with most awareness campaigns, it’s two steps forward and one back. On one hand, it’s good that there’s increased awareness, but the increased awareness shines light on just how gaping and insurmountable the problem is.

Really, I’m not that concerned with how difficult it is to create a house that can host the teal pumpkin project. Rather, I’m concerned with how easy it is not to. I live in the midwest, a region famous for producing corn. Sometimes, I drive just outside of town and am bewildered at the fields, both magnificent and damning.

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What I see has implications beyond type 1 diabetes. I see a tradition of family farms lost to big agribusiness. I see feed-corn, industry, profit, hardly getting-by, and fields and fields of soft drinks (and let me be clear, in the right moment, a soft drink could save my son’s life). I see candy that’s nested in bowls and handed out at banks, offices, and parties. What I don’t see is how we greeted each other before a shelf-stable promise of sweetness.

When my sister and I were little, we trick-or-treated the length of our mile-long dead-end street, past an eerie cemetery, where westward settlers who died on the stagecoach route in the 1700 and 1800s were buried. The very last house on the street was famous, in the neighborhood, for giving out decidedly tongue-in-cheek treats. One year, each trick-or-treater got six pennies, another year a box of raisins; my two favorite years they passed out dental floss and toothbrushes. Kids were always milling around the house, exclaiming in mock-protest, outrage over their treats. But the owners’ message was clear: “You made it this far, now take care of yourselves.”

The message about teal pumpkins is out, but why is it only one day a year? Why are there bowls of candy in offices? Why do kids meals come with free soft drinks and desserts? When did we cross the message of care with sugar?

To Celebrate

To mark milestones in our family, we usually cook a nice meal and invite friends and family to celebrate with us. Of course there’s a cake, some ice cream, and  a few streamers left over from the previous event, like a baby shower we hosted seven years ago. Instead of planning an elaborately themed party, we enjoy good food and conversation to celebrate birthdays or anniversaries.

Our son, who has type 1 diabetes, turned five this September. He was diagnosed with type 1 at three-years-old, so he’ll probably never remember a life or birthday without this disease. We were planning a party per usual, and I don’t know exactly where the plot shifted, but it did. Henry’s only requests were Toad Cupcakes (à la Mario Kart) and a few Lego sets, but a little planning and a few Pinterest visits later, his 5th birthday was under the big top.

I made this. This is not a Pinterest Fail.

I made this. This is not a Pinterest fail.

We went BIG. I don’t want to say the circus celebration was diabetes related, but I have to admit, our whole family is seeing life and milestones through the lens of diabetes. Sometimes, the future I imagine for my son is grief-worn and full of woe. Other times it’s more kick-ass and victorious. The truth is probably somewhere in the middle with weekly visits to both extremes.

So, this year we erected a massive play structure that was given as birthday present by grandparents:

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We rented a bouncy house:

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We invited the neighborhood kids over to a drive-in move later that night:

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The truth of it is that this year has been hard. Every two days Henry anticipates a painful site change for his pump, which is an improvement over an injection of insulin every time he wants to eat. He waits to eat his food while his blood is checked and other people are already eating. Some nights he drinks juice in his sleep to combat lows. The truth of it is that future years will be hard too, and Henry will grow up before his time, because type 1 diabetes demands attention, focus, and discipline; characteristics not every adult posses.

I don’t believe that disease makes my child an angel or a hero. I realize this statement offends many people. I understand how this statement offends people. However, living with a chronic disease has taught me that the distinction between hero, and sick, and victim aren’t very useful. In fact, the distinctions between most things aren’t very useful. Having type 1 diabetes has made my son’s life more complicated and this makes him one tough kid, because a diagnosis of type 1 doesn’t allow for other options.

I’m cautious to say that living with a chronic disease is instructive. If I could flip  a penny into a magical fountain and wish this away, I’d trade every realization I’ve had about living with a chronic condition before that penny made one full rotation.

However, living with a chronic disease has shown me it’s worthwhile to look for what to celebrate. Sometimes it’s a birthday. Sometimes it’s a blood sugar that’s in range. Sometimes it’s the fact that I don’t cry when my son asks me a really difficult question, like why he has diabetes.

Around our house, most of the recent celebrations are pretty simple: like not being late despite everything we have to do to leave the house, guesstimating the carbs in a restaurant meal of beef tacos with a side of rice and beans, finding just the right spot to start a site, and really, really, really meaning it when we sing “Happy Birthday.”