Written by Amanda Harrell, DO

When my now 14-year-old daughter, Layla, was diagnosed with diabetes at the age of 8, I thought I had failed her. I, her physician mama, failed to see the many signs that were glaringly obvious now when I look back. I will never forget sitting with her in the children’s hospital with the insulin drip still running in her tiny veins. Hearing her little voice asking why this had happened to her, I would try not to tear up and tell her how brave she was.

When the attending and his many residents and fellows entered, I felt so incredibly embarrassed. Hearing them present her case, I would shrivel down into myself, wondering how I missed the signs. “An 8-year-old female presented with diabetic ketoacidosis. She had been experiencing increased hunger, thirst, and urination along with weight loss prior to presentation and fell asleep in class today”.

The drive home from the hospital was long. She would stare almost longingly and sadly outside the window. She would ask why God would allow her to be sick. I would stumble through answering her many very grown-up questions. Seeing her learn to inject insulin for the first time was hard for me. Knowing that she would have to do this for every single day for the rest of her life was even harder.

Everyone kept saying how lucky she was to have me because her doctor mom could handle it all. Man, what little I knew. What a steep learning curve. WHOA.

For the first several weeks, either my husband or I would stay up at night checking on her, finger sticking, and fumbling through what the right steps would be with each and every finger poke. We would order scales and carb-counting books, download apps, and join Facebook support groups. We would sit for what felt like an eternity before each and every meal, trying to precisely count the carbs and dose her with the ongoing fear of what would happen if we miscalculated. We would accidentally dose too much and later have to force SO MUCH food and juice. We would accidentally dose too little and stay up all night giving corrections. We would try to make life normal and arrange parent meetings with the schools, church, and dance teachers. There was an incredible amount of coordinating that had to happen.

I felt like the biggest helicopter mom ever. Trying to allow your kid with a chronic illness to feel like everyone else is HARD. I want her to play sports, I want her to go to swimming parties, I want her to go to camps, I want her to eat whatever she wants whenever she wants, and not have to pause before. I want her not to have to forget the birthday cake at that party because she has her period and her blood sugar is through the roof (yeah, that happens). I want her not to have to sit out of dance class to treat her blood sugar.

We, as physicians, see all of the many aspects of diabetes. We care for well-controlled diabetics, but we also see the many complications of not managing the disease. We see vision loss, limb loss, poor healing wounds, gastroparesis, and neuropathy. I tried so hard not to let those severe complications haunt me out of fear for what could happen to my baby girl. I tried not to think about all of the what-ifs of diabetes. What if she overdoses accidentally and no one is there? What if her pump fails? What if her Dexcom glitches and she doesn’t notice she is high all night long and goes into DKA in her sleep? The list goes on and on. The worries will eat you alive if you let them.

Having a kid with a chronic illness has taught me so much. I tell her all of the time that she makes me a better doctor. I would like to think I was empathetic to patients before, but I know I am definitely more aware of what patients with chronic illnesses have to go through. The social, mental, and physical aspects of any chronic illness can be massive. I won’t even begin to touch on the cost of medications and equipment needed for those patients.

Over the years, we have learned that we will always be learning. We will miss carb counts, pump sites will fail, her pump will fall off, insulin will accidentally be left in the sun too long, we will forget insulin when we travel states away, we will forget to dose, we will lose her PDM, and so many other things will happen. What we have learned is to accept that it is impossible to manage this disease perfectly. We will not get it right all of the time. We do have safeguards in place to keep those rarer life-threatening mistakes from occurring, but we give ourselves grace on the daily chaotic nuances that can occur with diabetes.

Instead of living fearful of what could happen, we just live.

Below is Layla’s story. She was asked to write it for the local Children’s Miracle Network. It’s the kind of story that makes this physician mama so proud.

My Story, by Layla Harrell

I was the kid who jumped out of bed for school in the mornings, ready much earlier than needed, and excelled in school. Little third-grade me was sitting in my school chair, my head pounding and my eyes drooping. I’ll never forget the day I fell asleep in class, and the school nurse checked my blood sugar on a tiny little machine, and it read HIGH.

My dad rushed me to meet Mom at Freeman Health System. Long and bright halls lead me to a small room with a well-kept bed. The white sheets had a baby blue gown that my mom helped me change into. The doctors at Freeman worked quickly to help. I felt the cold sting of the IV needle going into my arm, and I was so exhausted that I hardly flinched.

I remember having fluids given and labs drawn immediately. We knew now that I had diabetes, but unfortunately, I was in DKA, a life-threatening complication of diabetes. They ended up having to get me into an ambulance to go to a Children’s Hospital in Kansas City. It was bigger inside than I had imagined. I woke up later, still in the vehicle.

When we got there, I got asked a lot of questions. Most of which my mother had to answer. I was told I couldn’t eat until my labs looked better, and I was crying because I was now starving. My labs finally got better around 2 am, and they grabbed food for me. I could only eat the meat and cheese out of Lunchables, and I kept getting told to drink more water. Eventually, a doctor came in and introduced herself.

“Now, I’m going to say a lot of things you may not understand. But when I’m done, ask all the questions you have, got it?” I nodded my head, happy to know what was happening, but also nervous; I never did like not understanding.

She told me I had something called Type One Diabetes. It was nothing I was at fault for, but it still happened. One of my organs had failed, and in doing so, it failed to produce a life-saving hormone. And for every day for the rest of my life, I would have to get shots and stick my finger.

I remember taking a shot the very first time, the way it stung. Two weeks after my first hospitalization, I started poking my own finger, sometimes 8 times a day.

Thankfully, I got a pump and a continuous glucose monitor, which means way fewer sticks. I had to learn what a carbohydrate was and what insulin was. I had to learn to count carbs with literally every piece of food or drink I put in my mouth. I had to learn to give less insulin when I was swimming or playing with friends. I learned that I couldn’t eat some things when my blood sugar was too high. I had to learn to constantly monitor myself and think about diabetes before I do anything. Swimming, biking, trampolines, dance, playing chase, all require extra attention because if my blood sugar drops too low, I could die.

You read that right. Die. I learned that I had to take care of myself because I was at risk of being very sick if I didn’t. The anxiety and stressors alone of living with diabetes can cripple anyone. A simple common cold can cause my blood sugars to skyrocket. A growth spurt can wreak havoc on my numbers, too. Having to explain to friends that they may need to give me a glucagon shot in case I pass out is terrifying.

There have been times my pump failed, or I missed the carb count on something, leaving my numbers too high. This means my blood sugar was too high for dinner or whatever meal we would eat. I would either have to eat a zero-carb meal or run laps around the backyard to bring it down so I could enjoy some Mac n cheese.

Some people think this is just a disease I got because I didn’t take care of myself. But I did, and I never asked for this, nor did I earn this. But no matter how many times people ask, yes, I can have sugar.

Diabetes is a really crummy disease.
Given the right tools though, I have been able to realize it didn’t have to hold me back.

I have continued to dance competitively despite my diagnosis. I play guitar, and love acting in my school play. I was inducted into the national Junior Honor Society last year. History is my favorite subject. I love to write short stories, to read, and to sing at the top of my lungs. None of my classmates blinks an eye now when I have to change my pump in class or my devices start to beep.

I used to be self-conscious of my disease. Now, when someone asks what the device I wear on my arm does, I happily tell them.

I have been active in JDRF through having a ONE walk team and recently being a JDRF Gala ambassador for the Missouri/Kansas chapter. I think it’s important to raise awareness and help fund future research on T1D. Don’t get me wrong, I’ve had too many sleepless nights because of this disease, as I am sure to continue to have in the future. I just don’t want to choose to let diabetes have control.

My mom tells me I can choose to be either a fountain or a drain. I think this works for this disease. I can choose to pour into others who have T1D, too! I have a little friend, about seven years old. Her name is Pearl. Sweetest little girl ever with an even sweeter smile. She got admitted to the hospital a bit over a year ago. Her little arms have marks from the CGM. And she freaks out when she goes low, almost in a panic. But she sees the brightness in it, making jokes about getting to eat candy in class. And calling me her diabetes sister. I love helping her pick new sites and learning to be even braver than she already is.

Recently being awarded an alert dog through the Children’s Miracle Network was a HUGE win for me. This dog will alert me to my highs and lows, which is huge when I sleep through my alarms or when the technology fails. I am so excited to grow with my dog, Nico. He already feels like family.

My story is ongoing, obviously. But what I do know is that while diabetes is a part of my story, it will not be the main character. It will not keep me from writing whatever story I want and achieving my dreams. ☤