I Can’t Count All the Snows

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“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.

“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”

He looked out of the window, his arm held straight, but at an odd angle by its IV splint.

“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.

My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.

But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.

Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.

This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.

I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.

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Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.

 

Hard Questions on World Diabetes Day, and Everyday

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November 14th is World Diabetes Day (WDD), a day created by the International Diabetes Federation to bring awareness to the growing concerns surrounding type 1 and type 2 diabetes. Last year, I recognized WWD with the 2015 Type 1 Diabetes Index.  This year, some of those numbers have grown.

 

My son is in his second week of participating in a sport, so I’m new to managing blood sugars during organized physical activities. During his first week of practice, I sat watching the CGM (constant glucose monitor) as it read 120 with an arrow straight down, then the next read out, five minutes later, was 90 with two arrows down. At practice this week, I disconnected his pump, hoping to avoid the rapid drop.

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As I held his makeshift pancreas in my hand, I looked up and saw grandparents taking short videos, parents cheering kids on, siblings sitting through practice, drinking from juice boxes, eating unmeasured food. In one hand was my son’s insulin pump, the other his CGM receiver, and with all my willpower, telepathically, I was willing his blood sugar not to drop any lower, but it was 98 with an arrow down. As I rushed downstairs to give him a glucose tab, it struck me, once again, how different my experience of the ordinary often is, usually because I’m thinking about some difficult diabetes question or trying to do diabetes math, which is impossible, by the way.

For World Diabetes Day 2016, I’m sharing a few of the typical questions I have throughout any given day.

If he’s eating 45 carbs for dinner, with lots of protein, but not much fat, is 1.75 units of insulin enough to cover the meal?

Should I wait 5 more minutes to see if one glucose tab is enough to bring his blood sugar up?

Will the school nurse think I’m overprotective if I call? I just dropped him off at school with 2 units of insulin on board, a glucose tab in his mouth, and he’s 79 with an arrow down. Yes, call. Are you crazy? Why would you not call and tell her this?

Did I give him enough insulin?

Did I give him too much insulin?

Should I explain to the man who just picked up his kid and moved him to the other side of the pool after seeing the medical devices on my son that my son is not dangerous or contagious? Should I tell him it’s OK to ask questions, but not to stare and ostracize?

OK, the packaged pasta says 2/3 cup of dry pasta is 44 carbs. Hmmm. How is dry pasta a useful nutrition fact? Do people actually eat dried pasta?

Why do I feel guilty and lucky at the same time because my son has access to insulin and others don’t?

When I walk in his bedroom this morning, will he be conscious?

Why does he eat the exact breakfast every morning and sometimes he’s 120 an hour after and other times he’s over 300? The.exact.same.breakfast.

What if Henry has kids and they get diabetes?

As I look at his CGM many hours after eating out, I wonder just what exactly is in restaurant food.

When I’m talking to a representative  from my insurance company after they’ve limited my son’s test strips and declared his Dexcom CGM out of network, and I ask this person how much my son’s life is worth, do I really expect an answer? Do I really want them to answer this question?

How will my son handle the burden of type 1 diabetes as a teenager?

Is his sister peeing more than normal? Am I?

After asking for the nutrition information at a national chain of ice cream parlors, do I push it and try to explain for a third time that I’m asking for carbohydrates, which are a very different thing from calories?

When Henry is anxious about a site change, he says, “I don’t want to have diabetes. Why do I have diabetes?” Is it enough to say, “I don’t want you to have diabetes either,” and “I don’t know.”

Those two pieces of pizza are 70 carbs. Right?

After learning of someone else in my local community is diagnosed with T1D, I wonder why the CDC is not tracking the incidence of type 1.

How will Henry respond when some of his classmates stop being curious and start being hurtful?

Sleeping in two and three hour intervals is enough, right?

November is diabetes awareness month. Please consider signing this petition that asks the CDC to start tracking the occurrence of T1D or making a donation to a diabetes organization.

Soaping for Diabetes Research

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My friend, Adrianne, started making soap a few years ago. On long walks and at the gym she’d describe the difference between an essential and fragrance oil to me. I thought it was interesting, but had no plans to start making bath products. Then, she gave me this:

 

the most luxurious body butter ever, and I was hooked. We decided to call the accidental hobby charity Semisweet Soaps, and it was important to us that the products be sustainable and earth and body friendly. We don’t use sodium lauryl sulfate or parabens. We started making soap and bath products, and we hosted our first open house in December 2015 (pictured below).

 

Since then, we’ve hosted sugar scrub parties in two states and participated in local arts and crafts fairs.

 

Here’s the best part of Semisweet Soaps— we donate all the proceeds to diabetes research. Here are some of the organizations to which we’ve donated:

Beyond Type 1

Beta Bionics

Bionic Pancreas

The Faustman Lab at Mass General

JDRF

Spare a Rose, Save a Child

When it comes to diabetes research, every mission is important: a cure, prevention, better treatment, equal access to life-saving medicine and equipment, protective legislation, and advocacy. Semisweet Soaps donates time and money to all efforts that endeavor to make life with diabetes better— until there is life without diabetes.

One of our favorite events is a craft and vendor show that benefits the Eastern Iowa JDRF. If you’re local to Eastern Iowa, we’d love to see you Saturday, November 12th, 9 a.m.-2 p.m. at Trinity Bible Church, 125 Orchard Dr., Cedar Falls, IA 50613. Please come and buy a bar of soap made with love and hope that supports diabetes research.

 

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Confessing to a Cookie

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A few times a week I find myself in a conversation or action that illustrates how different my son’s childhood is from his sister’s and classmates’— my own childhood. On one hand, I attempt to manage diabetes, but with the other, I try to orchestrate a “normal” childhood for Henry. We’ve never made any food or activity off-limits for him, but instead try a little bit of most things.

The weather is still warm enough to walk to and from school, and easily my favorite part of the day is being greeted by Henry after his day at Kindergarten. He usually has some very important fact to tell me, such as, 16 is an even number.

The day the local firemen came, Henry bounded out of the classroom door yelling, “How old are our smoke detectors? Did you know you can only use a smoke detector for 8-10 years? If you take it off, there’s a date on the back. Can we go home and see the date on the back?” (For the record, I did not know this).

Today he ran out of the door, hugged me, and took my hand for the walk home. He was uncharacteristically quiet, until he said, “I didn’t eat all my lunch.”

“That’s O.K.,” I replied. “What part didn’t you eat?”

“Chocolate Nibs. I ate a cookie instead. We celebrated somebody’s birthday. That means my lunch was 56 carbs, not 31 carbs.”

Our small town is so adorable that I jokingly say we live in Stars Hallow. It was a gorgeous fall afternoon, the maple trees orange blazes against a blue sky, leaves crunching underneath our steps, but we weren’t talking about any of that. Instead, Henry seemed almost worried, checking in to make sure everything was fine.

“You know that you can eat anything you want?” I asked. “We just need to know how many carbs it has so we know how much insulin to give you.”

“Yes, I know. The insulin comes in units. We count those too.”

Of course he knows. He knows beyond knowing.

https://www.instagram.com/p/BLttX1FgFzx/?taken-by=r.e.morgan&hl=en

 

Experiments in No/Low Carb Cooking: Baked Spaghetti Squash

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It’s edible gourd season! In my house I’m the one with unapologetic love for decorative and edible gourds, so given my love for gourd season and interest in low carb cooking, I decided to work on a dish that treats spaghetti squash like baked spaghetti.

About a third of people with type 1 diabetes also have celiac, and while no one in our house has been diagnosed with celiac, not infrequently, we prepare gluten free meals. Also, when thinking about how carbs, fat, protein, and fiber are digested, I look for ways to increase the fiber and or protein content of dishes, hence the addition of ground flax seed to this recipe.

Here’s the basic recipe.

Half the spaghetti squash scoop out seeds, coat with oil, salt & pepper. Place on a lined baking sheet and bake at 400 degrees for about 45 minutes. Use a fork to scrape out the flesh, creating long strands. Wrap in a tea towel and squeeze out the excess moisture.

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Meanwhile, sauté three cloves of chopped garlic in 1 tablespoon of olive oil. Let the garlic cool slightly, and place it in a large mixing bowl. Add 3 tablespoons of ground flax seed, 1 teaspoon salt, 1 teaspoon dried thyme, and 1 tablespoon of a mixed seasoning. I really like Fox Point from Penzey’s Spices. Stir together. Add the squash and about 4 oz. of tomato sauce. Mix and place in 9 inch baking dish. Cover with 4 more oz of tomato sauce and 1 cup of mozzarella cheese. Bake covered at 350 for 25 minutes and then uncover dish and bake at 400 for 10 minutes.

The Verdict:

Matt, known squash hater since childhood, had to go to work an hour early and didn’t get to try it.

Ava: “Does that have tomatoes?” More about Ava’s feelings for fruits and vegetables explained in this video.

Henry: “This tastes like pizza.”

Me: It’s definitely not pizza, but it’s flavorful and not watery like many baked squash dishes.

Confessions of a D-Mom

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Tomorrow it could dip into the 30s. I’ve been watching the weather for a couple of weeks, expecting the first plunge into freezing, so I switched out the kids’ clothes from summer to winter. And like usual, I discovered they outgrew most everything from last year, which is how I found myself in Target this weekend, shopping for boys’ pants by shoving my hands down the front pockets.

Hands deep in a pair of cargo pants, I became acutely aware of side-eye from a fellow parent and shopper. Along with side-eye, color and style are the least of my concerns when it comes to shopping for clothes for my six-year-old son with type 1 diabetes. Instead, I search for deep pockets that will hold his insulin pump and a flexible waistband that won’t pull a site out from his backside.

So there I was, innocently shopping for pants, when I found myself in a d-mom (mother to a person with diabetes) moment. Honestly, these d-mom moments are pretty routine, appearing like little blips on a radar; some are even funny, but others break my heart all over again.

Here are a few cumulative and recent d-mom moments.

When my son is grumpy, mean, or angry for no reason, I automatically check is blood sugar before I do anything else.

I can count the times I’ve slept through the night the last two and a half years on one hand.

I accidentally sent a text intended for my husband to the school nurse.

When my son told me this story the other night, I felt like we’re handing this diabetes thing pretty all right: “Mama, when I’m on American Ninja Warrior, my story is going to be this. At first I was little, but then I got bigger. I ate food that was good for me, and I didn’t get afraid of as many things anymore. I have diabetes, and at first I didn’t like the pokes. The sensor hurts more than the site, but it’s all O.K.”

I say my son is high in public.

I have a mental rolodex of carbs memorized. This makes me very unpopular at parties.

I’m less patient with willful ignorance than I use to be, but I’m more patient when it comes to failure.

Today my son was on the low side, and he took some pop corn out of the bag I was holding (and eating from). It occurred to me that we’ve never really shared a snack like that. Most of his food is weighed or measured, not eaten out of a package that contains multiple servings.

Every day diabetes takes up time, sometimes literal hours are sucked away battling new insurance restrictions or stubborn blood sugars and ketones, but paradoxically, it’s also forced me to exist in a tiny moment, like after I’ve treated a really low blood sugar. Henry and I lie on the couch, waiting to recheck his BG, and when he feels better, he tells me about this new movie he’s writing. It’s called “War of the Stars,” (I suspect some copyright infringement), and there’s these two characters called Citeloneum, he’s the goody guy, and Vitloneum, he’s the bad guy. Citeloneum has a site because he has diabetes.

 

 

 

 

LOVE IS ON 2016 Challenge

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I just returned from giving my son a juice box in his sleep. His blood sugar was low, 68, and about half an hour earlier it was 62. My son is 6, and he has type 1 diabetes. Right now, I’m his pancreas. I count carbs, estimate how the types of foods he eats will interact with the amount of insulin I give him. I think about his blood sugar at least once every waking hour. I even dream about blood sugar numbers.

However, this won’t always be the case. This is Henry’s diabetes, not mine. Little by little, I’ll hand over the tools and knowledge he’ll need to keep himself alive and healthy. Like a parent teaching a child to drive, we’ll circle the block, drive around town, and eventually he’ll back out of the driveway alone.

In the future, when Henry is his own pancreas, I won’t know about every low, how much insulin he gave himself, nor what he ate. He’ll figure out this diabetes management thing from us (from all the years of talk and practice) but also from other places, like the diabetes online community (DOC). When he’s older, he won’t share all the challenges he has to endure. He’ll rightly look to other people with T1D, and thankfully, the DOC offers amazing resources: personal blogs, research, nonprofits, and communities, like Beyond Type 1.

Beyond Type 1 is an exciting organization that aims “to be provocative, inclusive and disruptive: putting a face on this disease, clearing up misunderstandings about who is affected by T1D and eradicating the stigma that comes from living with a chronic disease. [Beyond Type 1 recognizes] there is a different narrative to be told: that of a strong empowered community living a powerful life beyond the diagnosis” (from www.beyondtype1.org). Unlike some places on the internet, Beyond Type 1 focuses on being empowered and living beyond a T1D diagnosis.

I am beyond thankful that Nick Jonas and celebrity chef, Sam Talbot, spoke up and out about their T1D, and helped found Beyond Type 1. I’m glad there are a bunch of amazing people working at Beyond Type 1 to create a positive community with many resources for education, access, and empowerment.

Right now, Beyond Type 1 is in a fund raising challenge, the Revlon LOVE IS ON 2016 challenge. For the organization that raises the most money, Revlon will donate another $1 million dollars. Please consider making a donation in any amount. We just did.

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@beyondtype1 shared Henry's story today. #t1d #diabetes

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Rachel & Coco Go To Kindergarten

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I was middle school dance nervous the night before visiting my son’s Kindergarten classroom. The plan was for me to read Go, Team Coco!, a book that helps educate young children about type 1 diabetes, to Henry’s class.

I wasn’t nervous about being in a room full of Kindergartners, but I was nervous that after reading a book about diabetes, that some kid would tell Henry what he could or couldn’t eat, would point at his medical devices, that later, in fourth grade, kids might make fun of him, not want to pick him for sports, not invite him to their houses or birthday parties, and hopefully much, much later, not want to date him, or marry him, or hire him, or…

On our walk to school, Henry was excited and asked if I could stay all day. His big sister wanted to know if I could read to her class about diabetes. Truthfully, I didn’t want to read about diabetes at all. I didn’t want to put any fuel on fears for the future, but I sat down at story time and told the class, “One day when Henry was three-years-old he got very sick, but then he got better. He wears a pump and CGM to help us keep him healthy,” and a strange movement caught my eye from the center of the rug, where the kids were seated.

I saw Henry reach into his pocket to get out his pump and show the class. His teacher suggested that he come and sit next to me. With a smile, he joined me in the front of the room. He showed them his pump, (and it’s a really cool pump, by the way, sometimes it turns into a pump laser or a really, really bad disco laser, so Henry says). I read some of the story, and Henry explained what it was like to feel low, when Coco was low. We finished the book and unprompted, the kids all chanted, “Go Team Coco” with me.

And then the hands shot up. I learned which kids have asthma, another kid described how his grandma checks her blood sugar, another kid’s sibling has type 1, another grandparent has diabetes, and another. For a strange moment, diabetes unified a room of Kindergartners, who talked so eagerly, wanting to be part of something by sharing their experience.

 

As Henry lives with diabetes, I know all his peers won’t accept him as easily as this room full of Kindergartners, but many will.

I tucked the book back in my bag for the short walk home, and it occurred to me that since diabetes takes so much from us there’s no need for me to build straw houses of fear that I’m afraid will burn at some future time. Sometimes, it’s me, and not diabetes that’s the gasoline. In this present moment, none of my fears mattered. My son was a few blocks away, in a room full of curious friends, wearing an awesome pump laser.

 

 

Back to School Night with Type 1 Diabetes

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My son with type 1 diabetes starts Kindergarten day after tomorrow. He’s excited, and we’re excited. We anticipate a safe environment in which he’ll learn, grow, and be healthy. We’ve met and planned with the school, but just hours ago, on the walk home from back to school night, tiny cyclones of fear, worry, and jealously snaked inside me.

Back to school night with type 1 diabetes means a pile of glucose tabs, glucagon kits, test strips, extra insets, a ketone serum meter, airheads for the really low lows, spreadsheets of instructions, snacks with carbs, snacks without carbs, lancets, a back-up meter, and extra adhesive have been queued in your dinning room for a week.

Back to school night with type 1 diabetes means you walk your son to all the bathrooms closest to his classroom. You point out the water fountains along the way.

Back to school night with type 1 diabetes is taking four times as long to drop off materials as other families because you have so many more items. In fact, when you’re dropping off supplies and signing form after form in the nurse’s office, the courteous mother behind you tells the staff that she’ll be back tomorrow, meaning when they’re less busy. It’s realizing, in that moment, despite your two big bags of supplies, that you forgot the snacks with carbs, so you’ll be back tomorrow as well.

Back to school night with type 1 diabetes is walking the route between the nurse’s office and his classroom several times, just to make sure he doesn’t get lost. You realize it’s a trip he’ll make several times a day, and he’ll know it like the back of his hand in a week.

Back to school night with type 1 diabetes is rushing from work to the pharmacy so you can get the glucagon kits for school, and as you walk past the cashier to the pharmacy counter, you see a mother wave a purple glittery pencil box before she pays for it. You overhear her say to the cashier, “It’s back to school night tonight, and this is the last thing we need. We almost forgot about it.” A needle of jealousy pierces you, and you wish back to school night was just about pencil boxes and markers, a blithe almost forgetting of things. But then you remember to be kind, because everyone is fighting great invisible battles. Surely living with type 1 has taught you that.

Back to school night with type 1 diabetes means looking at all the other boys and girls that your son will most likely go to school with for the next thirteen years and hoping that they will be compassionate and understanding. But you’ve been a kid on a playground and in a lunchroom. You know kids aren’t empathetic and kind all the time.

Back to school night with type 1 diabetes is hoping your non-T1D kid doesn’t feel minimalized as she waits for you to finish something diabetes related for the fourth or fifth time that day. She’d like to see her classroom too, and asks if there’s still time to visit her teacher.

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Back to school night with diabetes is forcing yourself to breathe as you walk behind this guy who is, and will, shoulder so much. You tell yourself you’re just sending your kid off to Kindergarten, that lucky parents whose kids were born after the discovery of insulin 95 years ago, and kids whose T1D is caught in enough time, get to do that— send their kids off to Kindergarten.

Experiments in No/Low Carb Cooking: Zucchini Garlic Bread

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When scrolling through social media, I sometimes pause on those sped up cooking videos that require a few ingredients. Usually, I’m appalled, and think that the simple recipe made from processed food is all that’s wrong with America (I’m thinking of you, S’mores Dip and Donald Trump). However, other times I decide to try the recipe, which is the case for Cheesy Zucchini Sticks, featured on Buzzfeedtasy’s Instagram.

Of course, people with type 1 can eat anything they want. However, it can be easier to manage blood sugars if fewer carbs are consumed. There’s a controversial method of type 1 management called the Bernstein method, of eating few to no carbs, which would require less insulin. Dr. Bernstein was diagnosed with type 1 at the age of 12 in 1946, when outcomes and control were not good. He’s now in his 80’s, living proof that his method has worked for him.

While we don’t use the Bernstein method, I do cook some meals with the objective of decreasing the carbs we consume. Last week, I decided to make a summer vegetable soup and Cheesy Zucchini Sticks.

I knew Henry would love them, but his bread, pasta, couscous loving sister would not. Please take 57 seconds and appreciate the aforementioned sister as a toddler who could not eat an entire Bing Cherry purchased roadside from the farm where it grew, still warm from the California sun that nourished it.

So some clever rebranding was in order. I called it “Garden Bread.” The rebranding worked at first.

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Garden Bread

The Verdict:

Matt, known zucchini hater since childhood, ate three pieces.

Ava, cannot eat a cherry (or any other fruit or vegetable) to save her life, gobbled down one piece, but slowed and then stopped when she spotted “something green” on her second piece.

Henry and I ate the rest. It was neither bread nor zucchini, but it was a flavorful low-carb accompaniment to our meal.  Next time, I’m peeling the zucchini first, to take care of the “something green,” but it’s back to the drawing board for names.