Soaping for Diabetes Research

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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LOVE IS ON 2016 Challenge

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

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.

 

 

Across Three States and a Mighty River

We participated in a lot of fundraising this year, including our first JDRF One Walk. Now, Henry is a youth ambassador for two cyclists who will complete a 100 mile ride across three states and the Mississippi River in the JDRF Ride to Cure Diabetes August 11-14. Henry is a youth ambassador for Nicole and Harrison.

 

Participating in each fundraising event is a humbling experience. Sure, it’s not easy to ask friends and family for money, but once the money is raised and I’m at the event, I’m awed by the sheer number of people there. Huge groups of people are in matching shirts, rallying for one person.

When I was in elementary and high school, I knew a couple of people who had type 1. During graduate school, one of our dear friends had been diagnosed just prior to starting school. But these were a few people, and then my son was diagnosed. My world got simultaneously smaller and bigger.

A few months ago, in our little town, I was waiting to pick up some Thai take-out we’d ordered. I heard the beep of what I was certain was an insulin pump. I looked around the five table restaurant and saw an older man bolusing for his meal. It’s happening more frequently: I’m encountering more and more people with type 1. Maybe I’m just seeing things I would have never noticed before, but with all the other families who have infants and toddlers recently diagnosed with type 1 that I meet through events or the in Diabetes Online Community (DOC), I think I’m not only noticing the invisible world of T1D, but also that the incidence of T1D is on the rise.

I recently heard a talk by the ADA president, and he said that every 20 years the incidence of type 1 diabetes is doubling. It’s no wonder that a JDRF One Walk or JDRF Ride to Cure Diabetes event should host a larger than expected number of people who have been affected by type 1. So that’s the girt of it: while a cure remains elusive, an increasing number of people will need a cure. If you’ve got an extra $5 bucks, send it to Nicole and Harrison as they fundraise for the JDRF.

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One day, when Henry’s older, I’d love to train for this ride and complete it with him. In the meantime, here’s a really great podcast, where diabetes mom, Moria McCarthy, talks about he challenges of completing a JDRF with her daughter, Lauren, who happens to have type 1. The podcast is Diabetes Connections by Stacey Simms.

Harrison and Nicole, we’re cheering you on!

 

Semisweet Turns 1

A little over a week ago, I sat in the audience of a lecture, “Prevention and Treatment: From Probiotics to Immunotherapy,” given by the current president of the American Diabetes Association (ADA), Desmond Schatz, MD at the Friends for Life conference in Orlando, FL.

The talk was a speedy assessment of what is known about type 1 diabetes today, and to anyone who follows the current research, it’s no surprise that what we know is actually how much we don’t know. A few minutes into the talk, Dr. Schatz kept repeating the phrase, “a need for urgency,” as in, “There is a need for urgency for research participation” and, “There is a need for urgency for funding models to change.” Dr. Schatz then acknowledged that everyone in the room understood the need for urgency because we either had diabetes or loved someone who had diabetes.

He then gave some statistics in the talk.

In Finland, a country with one of the highest instances of T1D, 1 in 123 people has type 1.

In the United States, about 1 in 300 people has type 1.

Worldwide, new cases of type 1 diabetes double every 20 years. That’s a new urgency: an autoimmune disease with no known trigger and no known cure doubles in occurrence in a little less than a generation.

When our son was diagnosed with type 1 diabetes, with no family history, the urgency was new to us. After a while, we looked up from our life that now included carb counting, medical devices, glucagon kits, needles, pokes, and insulin, to see that the urgency is spreading like a slow avalanche.

As Semisweet closes its first year in the DOC, and opens its second, the new urgency is why we share our stories. The numbers of T1D are only growing, but now, T1D is no longer a number for us, it’s a story, it’s part of our life. Stories are advocacy.

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Friends for Life Banquet 2016

Insulin Pump Meets Atlantic Ocean

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

  1. Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
  2.  The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.
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Opening secured with gaff tape (upper middle)

 

 

 

 

 

 

 

 

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)

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rocking the SPIbelt

4. Hang the d-bag from the sun shelter and enjoy a preserved site and pump.

This Guy & His Sign

Hell hath no fury like a sleep-deprived, insurance battling, carb-guesstimating parent of a T1D kid. So when this guy posts this sign in his aptly named restaurant, Mike’s Pig Pen, parents get even and educate.

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After the Facebook page for Mike’s Pig Pen was taken down, another popped up.

Local news outlets were contacted about covering the story.

Lots of one star reviews on Yelp! appeared.

The phone number for Mike’s Pig Pen appeared online, with the suggestion that the “squeal like a pig” scene from Deliverance be played when someone answered.

Mike’s expired domain name, http://www.mikespigpen.com, was purchased and now it reroutes to the American Diabetes Association.

The DOC (Diabetes Online Community) reacted and responded.

Locals defended him. People within the Type 1 community suggested that the outrage was too extreme.

Mike apologized.

Dust-ups like this happen when diabetes (type 1 and type 2) enters the picture. Only the players change: it can involve Cross-Fit, American Girl Dolls, and the list will continue.

I’m not sure that someone who openly practices discrimination (and thinks that diabetes is spread through blood contact) ever gets educated, whether it’s Mike, the customer who complained, the local newspaper editor who says that attacking Mike over the sign “is equivalent to bombing Main Street,” or the 100’s of people on social media who express outrage over having their meal ruined because they have to see a needle.

What I do know is that the sign, and all those who agree with its sentiments, that think people with a disability should be removed from public view, are a reminder that the fight is real. There’s a reason for advocacy and education.

 

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 Wish People Knew That Diabetes…

Kelly Kunik, who blogs at Diabetesaliciousness, created the hashtag  #IWishPeopleKnewThatDiabetes, and the idea is that on April 20th of every year people share what they’d like others to know about living with diabetes so that no one feels alone on the T1D journey and that others are educated about a life with type 1.

It’s very similar to the project #IWishMyTeacherKnew, and last year over 17 millionTwitter impressions were created with #IWishPeopleKnewThatDiabetes. Sharing fears, hopes, and struggles as they relate to a life with type 1 is certainly raw, but also cathartic. It’s been two years since type one entered our home, and the longer it’s around, I realize that T1D will touch almost every aspect of our lives, but the real challenge is to learn that it will touch every aspect of our lives, and to move on despite it.

When our son was diagnosed with type 1 diabetes I knew that we didn’t do anything to cause it, that he would need to use insulin for the rest of his life, and lows and highs were dangerous. Now, I know more about diabetes, and in the spirit of advocacy, I’m sharing, in no particular order, ten things I wish people knew that diabetes…

  1. I wish people knew that diabetes makes me sad/upset/frustrated/exasperated when I’m at the grocery store.
  2.  I wish people knew that diabetes is often why I’m looking at my phone. I’m checking my son’s blood sugar remotely so that I can check back in on the task at hand.
  3. I wish people knew that diabetes occupies about an hour and half of my time per day, about $200 a month, and we’re lucky to have time and good insurance.
  4. I wish people knew that diabetes means I fear that one day my son will attempt to take his own life by purposefully administering too much insluin.
  5. I wish people knew that diabetes makes me monitor my other child’s water intake, weight, bathroom habits, and moods because I’m afraid that she too will develop type one diabetes.
  6. I wish people knew that diabetes forces me to sometimes trust people I don’t know very well with my son’s literal life, then after he learns to care for his own diabetes, I will have to trust a teenager to make mostly good and responsible life and death decisions multiple times a day, more or less consistently.
  7. I wish people knew that diabetes makes me afraid I might outlive my son.
  8. I wish people knew that diabetes is why I haven’t had a good night’s sleep in more than two years.
  9. I wish people knew that diabetes means almost every week I read about someone who died because they had the same disease as my son.
  10. I wish people knew that diabetes means I have to choose to believe that living with a chronic disease makes people stronger and not weaker, because that’s the way forward.

Please consider sharing your thoughts using the hashtag  #IWishPeopleKnewThatDiabetes on social media on April 20th.