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Why My Children Have Been Diabetes’ Greatest Gift

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Nine years ago, I sat on a bed in the emergency room. I was cold and breathless, waiting for someone to give me an answer. For a year and a half, I floated from doctor to doctor, begging for an answer to my symptoms: weight loss, chronic thirst, extreme hunger, fatigue, depression, tingling in my feet, weakness, blurry vision and bed-wetting. Some suggested I had celiac disease, anorexia or maybe a mental illness.

They were all wrong. 

The ER doctor burst into my room, looking wide-eyed at the documents cradled in his arm. He looked at me and said, “Your blood sugar is 700. You have diabetes.” I was whisked away to the ICU, hooked up to monitors and an insulin drip and placed in a bed where I’d spend the next several days.

Nurses would come into my room sounding cheerful, but they couldn’t mask the grave concern in their eyes. Some were more frank. More than one told me, “You were so close to death.” I learned that upon arriving in the ER, I was in a condition called diabetic ketoacidosis. Essentially, my body was toxic, and my A1C (an average of three months’ worth of blood sugar levels) wasn’t even on any medical charts because it was sky high.

What I learned was, I really shouldn’t have lived. I was dangerously ill for months.

I graduated from the ICU and was placed on another floor of the hospital. I had to learn how to inject insulin, count carbohydrates and test my blood sugar levels. I learned there was no cure for my disease, only the opportunity to manage it. I would be insulin-dependent for the rest of my life, and I would administer insulin through injections or an insulin pump.   

As a Type A person, I quickly organized this information into color-coded folders. I quickly learned what I needed to do. Surprisingly, the worst news of my life was also the best news: I finally had an answer, an answer I had sought for a year and a half of my life.

When my first certified diabetes nurse educator (CNDE) visited me, she asked my husband and me about having children. Were we planning to have children? We said yes simultaneously. And as she proceeded to talk to us about high-risk pregnancies, my mind honed in on a single word, an idea, a promise: adoption. 

Fast forward to today. We have three kids by adoption. They’re all considered healthy. No special needs or diseases. I’m the sick one, the one who requires multiple doctor’s visits. I’m the one who has the mounting medical bills and fights with the insurance company and the pharmacy.   

Controlling type 1 diabetes is as easy as controlling a preschooler in a candy shop. My days are spent testing my blood sugar, counting carbohydrates, pushing buttons on my insulin pump and checking my glucose readings on my continuous glucose monitor (CGM). I make medical appointments, create healthy food menus and listen to my body, always, constantly. All of this is done to hopefully avoid the slew of potential diabetes complications: blindness, heart issues, kidney failure, certain cancers, amputation of lower limbs, depression and many more.

There is a constant fight for balance, self-bestowed grace and hope. There’s a constant fight to be as normal as possible.

A few months ago, my 6-year-old approached me after I had an episode with a low blood sugar. She had presented me with an orange perched on a cloth napkin. She knows enough about my disease to know low blood sugar renders me weak, shaky and disoriented. And she knew an orange, which contains sugar, might help.

My 4-year-old daughter is also somewhat versed in my chronic disease. She sighed one night as I tucked her into her bed and said, “Mama, I wish you didn’t have die-da-betes anymore.”

My 2-year-old son knows not to touch my insulin pump, my glucose tablets or any of my testing supplies. They are mama’s things.

My children have been diabetes’ greatest gift. They are funny, smart, beautiful and gifted beings who give me the motivation to keep trying, to keep making healthy choices, to get back up no matter how bad the previous day or hour was. They are empathetic, witnessing the ups and downs of my disease on a daily basis. They are kinder because of it, more patient, more forgiving and more intuitive.   

They are mine. I am theirs. And together, we seek serenity amongst sickness.

Rachel Garlinghouse the mighty

Follow this journey on White Sugar, Brown Sugar.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 7, 2015
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