Always Aware

November is Diabetes Awareness Month and organizations like Project Blue, the JDRF, and Beyond Type 1 use this month to educate and advocate, particularly through social media. The soaring cost of insulin, burnout, healthcare, misplaced jokes about sugar, and most importantly the warning signs of T1D are common topics.

In the past, I’ve used Diabetes Awareness Month to focus on caregiving and diabetes, as well as created indexes that attempt to quantify living with diabetes. Lately, I’ve been quietly thinking a lot about the psychosocial and mental health aspects of living with type 1. I’m certain it’s because as Henry becomes older, he’s becoming more aware of what it means to live with diabetes, and perhaps at seven, he already understands this better than I do. Recently, he told me that since he’s seven he’s old enough to help watch his blood sugar overnight and asked to keep the CGM on his nightstand.

Earlier this fall,  his class talked about fire safety, and through our local fire department, families were encouraged to discuss a fire safety plan: “Every second counts. Plan two ways out.” Henry has been adamant that our family plan two ways out and discuss our fire safety plan, so last night at dinner we did.

Henry asked, “Who will bring the cell phone to call for help?”

I assured him papa or I would bring our phone.

Then he asked, “Who will bring my diabetes bag?”

Taking a deep breath in—in wonder that he already thought of this well before me—I assured him that papa or I would bring his diabetes bag.

For more than half his life, I’ve been playing the role of his pancreas, and I think I’m pretty good at planning and reacting to most things diabetes, but what I didn’t know is how always aware he was and is and will be.

 

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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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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!