Teal Pumpkins Are Hard

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

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

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

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

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

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

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

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

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

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

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

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

Cousins First, D-Cousins Second

I helped ease my sister back onto her hospital bed when the afterbirth pains had passed. I stood over her, but she was already asleep, a grimace  of pain and sadness etched her frown, even in sleep.

Less than 24 hours ago she’d had an emergency cesarean to deliver her 33 week old twins. Baby B was showing distress. The twins where delivered at 5:06pm and 5:08pm, and whisked to the NICU. Rebecca and her husband were called into the NICU at 2:00am to meet their babies, but before she could see her babies, still in the wheelchair, the doctor asked if they’d had prenatal chromosomal testing. Twins are automatically considered high risk, so they’d had every test. She was told her son had Down syndrome before she ever got to see or touch him.

She was told how the world would see her son before she ever saw her son. When any infant or child is diagnosed with a condition, syndrome,  or disease, the parents need to grieve for the life they’d expected for their child, then, without much flourish, put that life away and show up for the life that is. Rebecca showed up. Before Everett was discharged from the NICU, he had a team of therapists waiting for in-home visits.

When Rebecca and I talk about this moment she asks, “Why wasn’t I allowed to meet my son before someone told me what was wrong with him? Why did someone tell me what my son couldn’t do before I saw him? Why can’t people see what he can do?”

Two months later, the twins were healthy and home, but my husband and I were in the hospital with our son, Henry, who was just diagnosed with type 1 diabetes. A week later, we had our first follow up at our local doctor’s office, and the nurse not so much asked as  stated, “Your son, he’s the type 1 diabetic?”

“No,” I said, thinking of my sister. “He has type 1 diabetes.”

Just like his cousin, my son has a diagnosis that will define him, but much of their battle will be for a people to see them as people first. Rebecca knew this all along. Person first language.

D-Cousins

Cousins first, D-Cousins second

About a year after her son’s birth, my sister delivered this speech to a group focused on advocacy for Down syndrome (DS).

Two. This number began popping up in my life. Two blue lines on the home pregnancy test. Two embryos. Two fetal heart beats. Two tiny bodies growing inside of me. Two heads, two hearts, two souls, two babies to join our other two children at home. Everett and Vivienne were born two minutes apart. At two in the morning, only seven hours after they were born, we were asked what chromosomal prenatal testing we did.

I am a planner, so we did every check, test, and measurement throughout the entire high risk pregnancy. Apparently because they are twins, Vivienne “covered up” many of the markers all the specialist and doctors would have looked for with Everett. Before I got to even see or hold Everett, one of my two perfect babies, I was told what was “wrong” with him.

Days later we were shown his karyotype. A karyotype is a picture of a person’s chromosomes. Instead of two 21st chromosomes there were three. Everett has Down syndrome.

The next day was Christmas Eve, and I as discharged from the hospital, but I left my two premature babies in the NICU. They were born two months early, but the babies got stronger, and so did I. Daily I would visit them, but I was torn between the two isolettes.

Not having a prenatal diagnosis of DS forced me to hit the ground running. I had planned for my son to have one life, but now I was planning for him to have another. I looked for specialists, services, groups, funding, schooling, and opportunities for my son.

When Everett was two months old he started receiving services through our state’s early intervention services and as a two person team, we created plans, goals, and outcomes for Everett. When we came across an issue like feeding, sitting, or playing, we problem solved together. Two heads are always better than one.

During the peaceful moments right before bed I think of my two perfect babies and how they came into the world too early. I take their hands or caress their cheeks and I think of all of their cells and chromosomes in their bodies that make them who they are. I can imagine Vivienne’s Karyotype: the two 21st chromosomes next to one another. Then I think back to the time in the NICU when I was alone and scared, when the geneticist displayed Everett’s Karyotype to my husband and me. I remember those three 21st chromosomes lined up next to each other. Now I know that three is just as good as two. Maybe three will be my new lucky number.

Rebecca and Everette

Rebecca and Everette

Amy’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing “Amy’s Diagnosis Story” in her own words.

Amy, diagnosed at age 29, February 2004

It was in Manhattan in the fall of 2003 when I had dinner with my good friend Sam who was diabetic as a result of a bout of pancreatitis a few years before. It was in jest that we decided to check my blood sugar. We’d had steak and potatoes and bread and several glasses of red wine, followed by a rich chocolate cake with sugary espresso. We were laughing at how even a “normal” pancreas would probably be overloaded by a meal that rich, but neither of us expected anything out of the ordinary. My blood sugar came back at 195. We chalked it up to the rich meal we had just eaten and laughed it off, and I tried to forget about it.

Amy a couple months prior to diagnosis

Amy (center) a couple months prior to diagnosis

In the next few months my life underwent a major transition when, after years of struggling to get control, I finally gave up drinking altogether. I had my first sober Christmas and New Years and was taking it day by day in a whole new reality. By February I had lost 20 pounds, which I was thrilled about and assumed was a result of a whole lot of beer weight melting off. Sometime in the middle of the month I started noticing fatigue and a persistent thirst and I very quickly lost another 10 pounds. Then one day on the way to work I literally had to stop on the subway stairs because I was too tired to make it up to the street. I knew in my gut that something was really wrong, and I flashed back to the night with Sam and the peculiar blood sugar. I was terrified to find out what might be going on. I had no health insurance, no money, and my entire family was 2,500 miles away, but the next morning I walked to the urgent care clinic on Atlantic Avenue and signed in to see the doctor.

I was shown to an examination room and was joined by a nurse who asked me what was happening. When I told her my symptoms and about the sugar of 195, she got the doctor to come in. The doctor assured me that I shouldn’t worry, that a diagnosis of type 1 diabetes in someone my age of 29 was very unusual and that the 195 had probably been a meter error. But just to get peace of mind we started by checking my sugar with their meter. When the meter read 305, my heart stopped. The doctor wrote me a note on her prescription pad and told me to go across the street to Long Island College Hospital emergency room and give them her note, with instructions to put me at the top of the list and get me admitted right away. Within an hour I was in the intensive care unit.

A week later I was sent home 25 pounds heavier armed with needles, insulin, a glucometer, and no idea how to adjust to life as a diabetic. My mom flew in and stayed with me for a few weeks as we learned to count carbs, calculate insulin doses, and wake up to check 3 am sugars. Leaving my apartment felt like a major undertaking (with a cooler for my insulin in tow) and I will never forget the first low blood sugar with the sweating, disorientation, and loss of brain power leaving me helpless. I was unsure that I would ever again feel care free, independent, young, or healthy.

Although being newly sober when I was diagnosed was overwhelming, I now see it as a blessing. Getting sober requires surrender to a new way of living and complete willingness to accept what comes as a result. The spiritual strength that I was finding in recovery was key in transitioning to life with diabetes. Now, 12 years after diagnosis and 12 years sober I see the two as one connected event that taught me to cherish my health, to be grateful for each day, and to strive to live a purposeful and joyful life. Managing diabetes can feel like a full time job, yet I have been able to manage it through graduate school, a career, and two pregnancies and healthy babies.

amy marriage

8 years after diagnosis

Wanda’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing the diagnosis story of someone who’s lived with T1D for 53 years. Here’s Wanda’s Diagnosis Story in her own words.

Wanda, diagnosed at age 12, December 19, 1962

About two weeks before Christmas in 1962 I developed a tremendous thirst and along with it, numerous trips to the toilet to pee. This was not immediately noticeable to my mom, but after a week of this, I required a parental note so that I could be excused from my class to go the bathroom, which was an embarrassment for a twelve year old.

My mom’s initial thinking was that I had a bladder infection, so thankfully she set up an appointment with our family doctor for the following week. By the time of the appointment, I was drinking (and peeing) over 1 gallon of water, plus other fluids, each day. I had a huge appetite, but was listless and quickly losing weight, almost 20 pounds in 2 weeks. Our doctor did a quick urine test in his office and diagnosed me with type 1 diabetes, which was called Sugar Diabetes at the time. I was twelve years old and in Grade 7 when I was diagnosed with type 1 diabetes.

I was admitted into the children’s ward of the local hospital and spent one month in the hospital. I remember being worried I would miss Christmas, but the doctor said I could go home for Christmas day if I returned in the evening, which is what we did. I was in hospital for about 4 weeks as I learned the complexities of diabetes care. They also figured out how much insulin I would require to manage each day. Glucose testing was mainly done with Eli Lilly urine testing strips, which certainly weren’t as accurate, but gave you idea if you were in trouble. There was no sliding scale, and pumps weren’t yet invented. I measured food in “exchanges” and ate the same amount every day, so 1 ounce of meat was 1 meat exchange a slice of bread was a bread exchange, etc.

Wanda 1 year after diagnosis

Wanda 1 year after diagnosis

The diabetic care back then was a bit of a nightmare, initially. I had a stainless steel needle that my mom sharpened on a matchbox (the gritty strike edge), and she then sterilized by boiling it in a strainer along with a glass syringe. She did this every night so I was ready for my single shot in the morning. I took snacks to school for mid-morning and mid-afternoon, as well as my carefully measured lunch. I was on the school track team and also played field hockey, so if I needed extra sugar, I drank some juice.

By the time I was 19 we had disposable syringes and needles available at the pharmacy, but with the appearance of recreational drugs on the scene, I would get a hard time when I purchased them, so I had to show them my medical card stating I was diabetic. I got my first home glucose-testing machine when I was in my thirties, and it was about the size of a paper back book, but still fit in my purse. It cost about $250 and was not covered by our medical plan at the time. Thankfully, managing diabetes has gotten easier.

There was NO history of type 1 diabetes in my family, so no one was on the lookout for it. The signs are great thirst and consumption of liquids, resulting in increased urination. Fast weight loss and lethargy come quickly afterwards. I lost weight two weeks after the symptoms appeared. A simple blood glucose test can diagnose diabetes.

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Here I am­— 53 years (and still counting!) after diagnosis. I really have 2 jobs in life: one is regular life, school, employment and the other is managing my diabetes. It makes for a busy schedule, but I am still here, enjoying the results of good management and great medical care. I have travelled the world: Australia, England, much of Europe, Hawaii, the Bahamas and many of the U.S. States, without a single incident. May every newly diagnosed child take heart; there is a great life ahead. You just have to believe it and go for it. Diabetes doesn’t have to run you; YOU manage IT!

Have Diabetes, Will Travel: A Summer in Review

5,249 miles

34 days

18 states

1 oil change

16 site changes

4 Dexcom changes

2 vials of insulin

2 Dexcom Receivers

When Henry was first diagnosed with type 1 diabetes, I was afraid to put him in the carseat and drive to the grocery store. What if he was unconscious from a low blood sugar, but I thought he was just asleep?  What if he needed rescue carbs and I couldn’t get them quickly enough?  How was I supposed to drive and watch for symptoms in the rear view mirror? In hindsight, those fears seem silly, but those fears are valid concerns. Slowly, we got back on the road and increased our travels.

Our families live over 850 miles away, so the first winter vacation after diagnosis, we faced the acid test of really traveling with diabetes. We learned a 10% increase in basal would not even touch a high blood sugar caused by sitting in the car for hours on end. We watched the effects of fast food on the Dexcom receiver, as it read HIGH for many hours while we threw insulin at a stubborn blood glucose of 400. We’ve created innovative rest stops, and the less said about this, the better. 

Traveling with children is never easy, and traveling with a child who has diabetes is even not easier. To begin with, there’s the sheer mountainous amount of additional luggage that holds supplies and back up diabetes supplies. You have to calculate for site changes or multiple daily injections (MDI’s) and plan for back-ups if those fail. Insulin should be kept cool, plan for meals on the road (not fast food), and then there’s the absurdly high blood sugars caused by sitting in the car for long periods of time.

Henry can’t do three things because he was diagnosed with diabetes: serve in the military, become a commercial pilot, or a commercial truck driver. I’m OK with this list, but he can do everything else. He can do everything else; it just requires extra planning. Taking grand, long summer vacations is a rehearsal for the other challenges he’ll face while living with diabetes.

We crank his basal up 60% and hit the road, because the effort and payoff is pretty sweet.

meeting Mickey and Minnie at Friends for Life 2015

meeting Mickey and Minnie at Friends for Life 2015

time on the family farm

time on the family farm in the southeast

walking in the Atlantic in Maine

walking in the Atlantic at Maine

Caregiver Cheat Sheet

Last summer I sat on the floor outside the room while Henry was in art camp. He’d been diagnosed with T1D five months prior, and he’d been on the pump for the last two months. The camp was only one week long, so surly I could just sit on the floor and meet him for snack time and watch the Dexcom (this was pre Share), right? I sat on the floor and Henry loved art camp. However, I had ample time to contemplate the fact that until Henry is old enough for self-management, we can no longer drop Henry off at school, camp, a friend’s house, a birthday party, or even leave him with a family member, without talking about diabetes care.

When you tell someone about diabetes care, I’ve noticed three general reactions.

  1. A glazed over look appears in the eyes, then mouth, and invades the general posture of the listener. Do not leave your child with this person.
  2. The listener sort of gets it, and starts asking questions like, “You have to do that every two hours?” “You mean he can have sugar?” “So the pump doesn’t automatically know how much insulin to give him?” Leave your child with this person only after feedback loop systems are the standard of care or after you’ve had several more conversations about diabetes.
  3. Shaky hands accept the medical devices and instructions. Usually this person says something like, “I will call and text you.” Two minutes after you’re in the car, there’s a call, but you know this person can handle it.

Obviously it’s never a good idea to leave a child with diabetes with a caregiver who does not understand the basics of diabetes or is unwilling or too nervous to administer care. However, it is possible to train willing family and friends. To help our willing family members, babysitters, and preschool staff, we created a caregiver cheat sheet. The sheet covers: blood glucose range, hypo & hyper treatments, carbs for meals, Animas pump information, and Dexcom CGM information.

caregiver cheat sheet

Here’s the link to the document you can download and edit to specific person with diabetes and product information.

Link to Caregiver Cheat Sheet

Connor’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing Connor’s Diagnosis Story in his own words.

Connor, diagnosed at age 15, October 30, 2009

I walked up to my math teacher’s desk, and asked for a hall pass. He looked at me with furrowed brows, “Connor, we’re only ten minutes into class. You should have gone before the bell rang.”

Something was going on with me. In my family I’d always been known as the one with the iron bladder, the champion of long car rides and movie viewings. But recently, I had to go to the restroom every half hour. Liquids rushed through me, and no matter how much I drank I was still thirsty.

When I returned to the classroom and gave the pass back to my math teacher, he studied my face and then the rest of my body. “Are you feeling alright?” he asked me, his tone more accusatory than concerned.

Later that day, I met my dad in the school lobby to sign out for a doctor appointment my mom had scheduled to address these strange symptoms.

“Are you okay?” my dad asked, as he pulled me into the corner of the lobby.

Over the past two weeks, teachers, students, and family members asked me that question over and over again. A couple of weeks ago, I’d had the flu and dropped a considerable amount of weight. My performance in cross-country meets had also descended into a valley of disappointing rates and unfinished races, but I figured I was still recovering.

I usually brushed off this repeated question, but when I met my father’s gaze, I knew there was something else. Sighing heavily, my father ran a hand through his hair. “Connor, I’m just concerned. Your math teacher contacted me earlier today and told me he’s concerned that you’re bulimic.”

“Excuse me?” I demanded in a whisper, my voice raspy from a dry throat. “Dad, you see how I eat. There’s no freakin’ way I’m bulimic. How could you believe something like that?”

“Connor, I’m not saying I agree with him, but you have been going to the restroom a lot after meals and you’ve lost so much weight that… well, it comes to mind.”

My family doctor was known for being a jokester amongst my siblings and myself. Generally, visits to the clinic involved thirty minutes of minimal tests being done while he rambled on about the crazy experiences of his own kids, or dropped as many bad puns as humanely possible. So when he stepped into the room, white lab coat swaying as silent as his wordless mouth, I knew there was something deeply wrong.

“Connor, we need to get you to the University of Iowa Children’s Hospital immediately,” he said sternly as he flipped through his clipboard until he found the form that he was searching for. He explained to me that my blood sugar was close to 500 over the normal level, sitting dangerously at 610. This also meant that my body had entered a state called ketoacidosis, a condition where my body was trying to urinate out toxins, which explained my constant thirst.

I stopped hearing anything that he said after the words “near coma” were uttered, and even my mother’s tight grip on my hand as she rushed us down the highway towards Iowa City couldn’t stop them from circling in my head.

With my mother beside me in the emergency room, a nurse explained that I’d lost so much weight because my body could no longer break down carbohydrates. Due to my inability to digest food properly, my body was now attacking the little amount of fat I carried. Before the appointment, I’d merely seen myself as a scrawny fifteen year old who’d lost a couple pounds, not 25 pounds in 2 weeks.

The medical staff told me that with the right training and equipment, I could battle Type 1 Diabetes, that with time I would get used to lancets and needles and blood drops and damaged nerves in my fingertips. There was one crucial piece of knowledge that was implied: T1D cannot be defeated, only subdued.

On my second night in the Pediatric Unit, I was jolted awake as a sharp object stabbed into my pinky finger. I looked over to see a nurse in blue gloves testing my blood sugar. “Sorry, I didn’t mean to wake you,” she said.

“It’s fine,” I replied groggily, and motioned towards the tester in her hand. She brought the meter over so I could see it. The screen flashed: 248.

I gave her my best smile, but I averted my gaze, not wanting her to see my fear. With all the talk of comas, needles, diets, and other health complications like loss of sensation in limbs, and (very rarely) blindness, my morale was still low.

“You play Kingdom Hearts?” she asked me, holding the Nintendo DS case that’d been sitting on my nightstand: the newest game in the series, Kingdom Hearts 358/2 Days. I’d played it five hours that day, sitting in my bed while my parents conversed with doctors about insurance and insulin.

She laughed, “I love these games. You know what? You’re kind of like a video game character now.”

I sat up and pulled my legs to my chest, resting my chin on my knees. “How?”

“Well, you have to regulate your blood sugar, right? And what you eat and drink, and how much you exercise, and when to take shots. Stuff like that.” She held up the blood glucose meter, pointing towards the digital numbers. “This is your life bar. And if your health gets too low, you need to drink a potion to get yourself back at the top of your game. But when it’s too high, you’ve got a status ailment, so you need to take your insulin, which is an antidote. And your lancet is your weapon against not knowing what your levels are.” She winked at me. “You’re going to be fine. You should get back to sleep, you’ve got your four hour class on diets and insulin dosages tomorrow.”

I realized then that many health professionals were here trying to make their patients’ lives easier or, at least, bearable. She didn’t need to make that analogy for me, or even talk to me when I’d woken up. But she did, and that made all the difference.

Connor today as a college student

Connor today as a college student

Melia’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of Type 1 Diabetes. For the person diagnosed with Type 1 Diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing Melia’s Diagnosis Story in her own words.

Melia, diagnosed at Age 9, February 15, 2003

Usually when I am asked how I was diagnosed with type 1 diabetes, I tell the short and sweet version, “My brother had the flu then I got the flu. He got better and I didn’t.” This is followed by the onslaught of how I got diabetes. “Did you have a bad diet? Were you overweight? Is that the good or bad kind? Does your family have a history of diabetes?”

No, no, there is no good kind, and still no. In fact, when I was diagnosed T1D was not really considered genetic yet. Today, research suggests otherwise. The best way to describe it is to say that there is something in my genes that was waiting to be triggered. I just happened to get the right bug at the right time, which made my immune system turn on itself and attack my pancreas. If I hadn’t gotten sick those genes may have never been triggered, or it could have just been prolonged. So, to make the short, sweet story not so sweet here is the long version:

Melia one week before diagnosis

Melia one week before diagnosis

On Valentine’s Day I lay my head on my desk as my classmates dug into their candy bags and Valentine’s cards. After school my parents packed my brother and me in the car and we left for my grandfather’s birthday celebration in Chicago. The drive took an extra 2 hours, because I had to use the restroom so often. We sat in a fancy restaurant for a late dinner. I made my first trip to the restroom before the drinks arrived. We ordered our food, I drank all my water as fast as I could and left for my second trip to the restroom. A few minutes later I went back for the third time. This time I felt nauseous. My parents wondered what was happening to me, but I insisted I was fine. We had only just begun eating when I was sick at the table. The next part I remember is my mother putting me in the bathtub at my grandparent’s house where she noticed I’d lost an unbelievable amount of weight. Immediately, I was taken to the E.R. One look at me and the doctors knew what was wrong; they didn’t hesitate to admit me. I was diagnosed with Type 1 Diabetes on February 15, 2003. My A1c was 15 and my blood sugar was 1024. The doctors were shocked that I was coherent because, as I would find out later, I should have been comatose. I was in 4th grade.

The next 5 days were spent in the Intensive Care Unit, working toward lowering my A1c. From there I was transferred to the hospital where I began learning how to check my blood sugar, take insulin, and count carbs. I gave myself my first injection. I started on NPH and learned the “clear to cloudy” rule of mixed insulin injections. I would start Humalog and Lantus when I went home. As I began learning the routine that would become my lifeline, everything from the previous few weeks also began making sense. I showed all the symptoms of Type 1 Diabetes: increased thirst and hunger, frequent urination, weight loss, lethargy. Even though my mom had taken me on several doctors’ visits my parents had continually been told it was merely a virus, a cold, the flu. My brother had gotten over his flu symptoms, but the antibiotics made no difference for me.

By the end of my week in the hospital, everyone could tell that I was feeling like myself again when I intentionally triggered the floor lock down with my hospital I.D. bracelet.

After that week I was released from the hospital and 3 days after that went home to Iowa. The first trip I made to the grocery store took all day. Tasked with finding low carb snacks, my parents and I read every last nutrition label in the store. Sugar free Jell-O, string cheese, gold fish, and celery. This would become the usual for me throughout all of school. I’ve eaten enough celery in my life to never want to look at a stalk again. Slowly, things returned to some kind of normalcy. I went back to school and I was getting healthy one day at a time. Every day is still a learning experience.

Of T1D, I will say this: There is an immense list of things I’ve been told I can’t do. I disagree with that list. I survived college. I know how to carry 6 months of insulin supplies on a plane. I’d like to get my scuba certification. My mother taught me that I was a kid first. So I have never let my diabetes stop me. I refuse to let it. I am not a diabetic. I have diabetes. It is my disease. I have diabetes, it does not have me.

Newly Diagnosed Reading List

Speaking to an audience of First Timers at Friends for Life 2015 Diabetes Dad, Tom Karlya, said “Diabetes is an unfair and tough disease, but knowledge is the equalizer in diabetes.” Knowledge is the equalizer in diabetes. Between blood glucose checks every two hours, being a parent, and teaching, it took me a few months to get through these books, but the history, research, and practical advice helped me cope with our son’s diagnosis and more importantly, find good avenues of care for him.

Diabetes Rising by Dan Hurley

After I meet with another parent whose child has diabetes, one of the first pieces of advice she gave me was to order Diabetes Rising. This book is an advanced primer on the history and current research as it pertains to T1D. Divided into three main sections, the first section chronicles the history of diabetes mellitus and focuses on the alarming rate at which both type 1 and type 2 is rising. The middle section covers hypotheses about the etiology of type 1 and the last section covers various treatments and research for a cure. The author, Dan Hurley, is a reporter, and a person living with T1D. This is the book I pass along to family and friends who want to learn more about diabetes.


Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Thea Cooper and Arthur Ainsberg

The book swiftly moves through the history of diabetes and its lack of treatment before the modern era. I think this book is one part biography of William Banting and one part case study of Elizabeth Hughes, one of the first American patients to be given insulin after its discovery in 1921. The book covers the early experiments of Banting and Best and follows the story of insulin to the Lilly Corporation and then the Noble Prize.


Cheating Destiny: Living With America’s Biggest Epidemic by James S. Hirsch

Like Diabetes Rising, this book looks at the history of diabetes, hypotheses, and current (published in 2009) research. What makes this book differently is the deeply empathetic voice of the author, James S. Hirsch, who is a person living with T1D. The book opens with the author’s three-year-old son’s diagnosis of T1D.


Think Like a Pancreas by Gary Scheiner

Thankfully, the author, Gary Scheiner, a CDE and person living with T1D, acknowledges no one can really think like a pancreas. However, if it’s possible to even replicate one iota of what a pancreas does, it would be with the help of this book. This book covers how to establish and test basal programs, a wealth of information for counting carbs and covering with boluses, detailed nutrition information, and other elements that affect blood sugars. Sitting down with this book is like sitting down with a nutritionist and CDE for a very advanced lesson on artificial metabolism.

What I Did or Didn’t Do Wrong

Five weeks after our son’s diagnosis of T1D, we were back in the Pediatric Specialty Unit at our first follow up visit with the endocrinologist. She closed the appointment by saying, “You guys are doing great. We don’t know what causes Type 1 Diabetes. It just happens that the right two people with certain genes found each other and fell in love.”

Type 1 Diabetes is an autoimmune disease, and after hearing that, it felt like we’d given our kid some bum genes. Like certain cancers, one of the latest theories on the etiology of Type 1 Diabetes is related to the gene-environment interaction, which is commonly described with this analogy: genes load the gun and environment pulls the trigger. If we’d loaded the gun, I wanted to find out if it was likely that we’d also pulled the trigger.

Family Portrait by Henry

Family Portrait by Henry

I spent a lot of time reading medical articles describing the hazy understanding of the etiology of Type 1. There are certain risk factors that make the disease more likely, but besides recently moving to a cold climate, Henry had none of these risk factors. In the general population, with no history of Type 1 in the family, the chance of developing Type 1 is 0.4%. On both sides of our family, Henry is the first person to have Type 1. We have the usual history of autoimmune diseases that are common in the developed world, like rheumatoid arthritis and Hashimoto’s, but no T1D until now. 0.4%

In my research, I did discover that Type 1 is increasing about 3% annually, which in the world of disease, is a quickly climbing rate. If I’m being honest with myself, I knew I wouldn’t find any answers in all the research, not even much peace.

There’s nothing any parent of a child with T1D does or doesn’t do. There are certain populations and places where Type 1 Diabetes is more likely, but until there is a disease registry, we won’t know the true occurrence of T1D. I still find it fascinating to read case studies and medical articles, like “Pathogenesis of type 1 Diabetes” by Massimo Pietropaolo, MD (subscription required to read full article), but sometimes a good meme nails it.