A Week To Break A Heart

This week I read about a government official who implied that only bad people get pre-existing conditions because they aren’t doing the “right thing.” Another representative indicated that people with pre-existing conditions are lazy and should do more to take care of their conditions.

Then, the house of representatives passed a bill to weaken the protections of pre-existing conditions.

This afternoon, while unpacking my son’s backpack I came across this.

“We dream of a world where people are healthy.”

Yes, we do dream of this, but in a world where three-year-old boys get type 1 diabetes, teenagers get cancer, and infants are born with heart defects, I think it’s safe to say that pre-existing is existing.

 

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Perspective

As of today, he’s been in Kindergarten for 100 days.

Sure it’s a 100 days of school, but the 100 test strips are only 10 days of type 1 diabetes care. So that means…

100 finger pokes

$140 dollars (without health insurance) of test strips

4 site changes

1 continuous glucose monitor change

0 nights of uninterrupted sleep

333 highest blood glucose

47 lowest blood glucose

In Search of Simple

A few years ago, I used a serving spoon instead of measuring cups to plate dinner. If I looked at a nutrition label, it was with passing interest. I left the house with nothing but keys, wallet, and phone.

Now, leaving the house requires a search and preparation of the d-bag, making sure it contains glucagon, meter, glucose tabs, enough test strips, lancet, CGM receiver, checking my purse for back up rescue sugar, and glancing at a blood sugar. I’m the lady blocking the grocery store aisle, squinting at nutrition labels. I weigh and portion Henry’s lunch, and include the carb counts in a note for the school nurse. Twenty minutes before eating, (you know that really calm time right before dinner when the kids are ravenous and you’re trying to cook and answer homework questions at the same time) I have to know how much and what Henry will eat, count the carbs, check his blood sugar and give insulin. When shopping, I have to pick out clothes that will accommodate the medical gear he wears. The list goes on…

Having diabetes takes away many simplicities I once took for granted, like packing a school lunch. During a particularly harried morning, I remembered the Leaf  & Love Lemonades that I won from their Instagram giveaway. I threw one in his lunchbox and a wave of simple joy washed over me. It reminded of life before diabetes, when I could just hand my son food without solving complex math equations or worrying about the effect it would have on his immediate and long term health.

This d-life is hard, but it certainly allows for celebration of the simple, like an in range blood sugar or an awesome lunch.


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Hard Questions on World Diabetes Day, and Everyday

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.

Confessing to a Cookie

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.

 

Rachel & Coco Go To Kindergarten

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

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.

Teacher, Caregiver, Nurse, Friend, and Advocate

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who will share their experiences of learning about Type 1 and managing it in a preschool classroom. “Teacher, Caregiver, Nurse, Friend, and Advocate” is by Alexis Johansen.


Diabetes. A word you rarely hear when going through college as an education major. You discuss behavior and disability interventions, teaching strategies, classroom management, and anything else that will prepare you to become a successful classroom teacher.

However, I heard “diabetes” entering my second year of teaching. My co-teacher and I were told we were going to have a child who was recently diagnosed with Type 1 Diabetes in our classroom. I cannot speak for my co-teacher, but my stomach felt very uneasy. I was worried to take on such a huge role with something I knew very little about. Many thoughts ran through my head. How do I care for a child with diabetes? Will I know what I am doing? How are we supposed to keep him safe? And most of all, how do I give him 100% of my care when I have 19 other 4 and 5 year-olds who need the same?

Unlike many public primary and secondary schools, preschools are not usually staffed with nurses, so my co-teacher and I were going to take on the nurse roll. We were in charge of keeping our little friend safe, and really when it comes down to it, alive. His parents put their trust in us to care for their child, while they themselves were still learning about caring for Type 1 Diabetes.

Not only did we have to take on this “nurse” and care giver roll, but we also had to learn to balance diabetes and the rest of the class including Henry. We were still the teachers, we were still Henry’s teachers.

Fast forward two years later, as I near the end of my time with my sweet little Henry, and all the care is now routine. But that wasn’t always the case. I think back to the first couple weeks of school, when we were learning and reading about Type 1 Diabetes. For instance, a typical day for all involved includes the following (keep in mind there is no such thing as a typical day in the diabetes world🙂

  • Between 5-10 finger pricks a day
  • Delivering insulin every day and multiple times a day
  • Counting carbs for lunch, snack, or a special cooking activity
  • Doing a pre-bolus (insuin given before a meal) for lunch along with a combo bolus (insulin given over a duration for high carb and fat foods like pizza)
  • Giving rescue carbs (glucose tabs or juice box for a low at any given point)
  • Correcting a high with an EZBG (more insulin) multiple times during the day
  • Communication with parents via group text, emails, phone calls when needed
  • Countless checks on his monitor, our personal cell phones, or his iPod

I’d say after two years, we have this balancing act figured out pretty well. There are still times where I find myself explaining to another 5 year old what a glucose tab tastes like (a gigantic smartie) or why Henry gets to have a juice box or cheese stick at random times during the day. This is all part of the balancing act. As a class we all come together to accept diabetes as part of OUR norm. This is just part of our day. The kids see us do blood checks, give rescue carbs, and give more attention to Henry at some parts of the day. But do you know what? They don’t think twice about it. They may ask a question or two, but curiosity is what makes our children learn and grow.

As I sit here typing this post, constantly checking my phone to see what his numbers are during rest time, ready to text my staff at any point, it makes realize that I have come to many conclusions and have my own thoughts about diabetes.

First of all, I love FREE FOODS (a no carb food)! The best food there is when you don’t have count carbs, knowing Henry loves them as well. To this day, my heart will always skip a little beat when I see double arrows down on his CGM (continuos glucose monitor). Pizza day is a bittersweet because I know there will always be a high and then there will most likely be a low. Exit signs, pointing with their arrows, will always remind me of Henry and his CGM (a devise used to read his blood glucose with arrows showing which direction his blood sugar is headed). Lastly, I thought Type 1 Diabetes was going to diminish my ability to teach the class, but really it made me the best teacher, caregiver, nurse, friend, and advocate that I could possibly be.

I will not look back and remember the scary lows or the difficult math (not my strong point) when it comes to figuring out carbs in a given meal or treat. I will not look back on the extra time it took to try and fully understand Type 1 Diabetes. I WILL look back and remember that little boy who took every finger prick like a champ, who made lows not so scary, who gave me the giggles when I was stressed out, who was so excited to see his blood glucose numbers (when sometimes I was dreading it), who, in all reality, gave me a whole new outlook on life. No, I will not remember Henry as the child we had with Type 1 Diabetes. I will simply just remember him as my sweet little Henry. A strong little boy who didn’t let diabetes define who he is.

exit signAlexis Johansen teaches in the 4 and 5 year old room at the University of Northern Iowa Child Development Center with her Bachelors in Early Childhood Education. She recently just finished up her third year teaching. Alexis lives in Cedar Falls, Iowa with her newly married husband and her adorable dog that loves to cuddle! When she isn’t at school with her kiddos, she enjoys reading, running, and being crafty at home.

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Lexie and Henry 

When Type 1 Knocks on Preschool’s Door

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.


It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

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Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

“I Can Spell to 100”

I didn’t have time to be nostalgic about my youngest kid participating in Kindergarten Round Up, (a preview of elementary school for preschoolers entering Kindergarten next fall). Instead, there was a flurry of emails to the school administration, nurse, and staff. There were meetings, apps were downloaded, and then the morning of Kindergarten Round Up rolled around.

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It’s hard to bolus for emotions.

Just a quick glance at Henry’s face shows how excited he was, and a quick look at his blood glucose on his Dexcom CGM (continuos glucose monitor) shows how anxious he was to attend the same school as his big sister.

Adrenaline is a hormone that’s secreted during stress, and it raises the blood sugar. We’re learning that many things raise or lower blood glucose: a growth spurt, illness, puberty, exercise, emotions, a unicorn jumping over a blue moon after a black cat crosses its path, and just because.

Days before we walked through the school doors, I knew it would be another vacillating moment of living with diabetes: a challenge to preserve the typical experience, while ensuring safety and health. And it was. Henry’s first introduction to school was meeting with administration and the nurse, listening to us talk about his blood sugar. But he’s heard us talk about his blood sugar so much that it’s old news, no news. But Kindergarten, that’s new news. He was bouncing, happily telling everyone, “I can spell to 100.”

And he can spell (and count) to 100. If a blood glucose of 300 is any indication, this kid is excited to go to Kindergarten.