One Mama’s Perspective on Life with a Tiny Type 1

Amanda sitting next to her son Lukas, who has type 1 diabetes

It's 3am and the high alarm beeps again. Dexcom reads 227. Another bolus, another beep and it's back to sleep for me... for now.

Lukas currently has a cold, so diabetes takes a front seat. I like to say that I keep diabetes in the trunk. It is always there, you can hear it rolling around back there, but it isn't the main focus of our days anymore. But some days, it takes a front seat, and some days it even drives.

I like to say that I keep diabetes in the trunk. But some days, it takes a front seat, and some days it even drives.

Where Our Story with Type 1 Diabetes Started

Let me take a moment to rewind to where our story with type 1 started. It was October 2019 and our boy was 13 months old. Like so many other parents, we didn't see the signs. He was peeing through his nighttime diapers, drinking and nursing more often than usual, and losing weight rather than gaining it. We noticed all of these things individually, but didn’t connect them together. Once we heard, “your son has type one diabetes,” our world was flipped upside down. We had no first-hand knowledge of type one, and we were blindsided by this diagnosis. 

We, as parents of a disabled child, always hear, “I don’t know how you do it.” But… we just do, and you would too if it were your baby. You would learn and adapt to keep them alive and healthy. 

How We’re Handling It

In true Virgo fashion, I jumped right in. I took the reins, being the primary at-home parent. I quit my job and submerged myself into the T1 world, so I could soak up any and all info I could get my hands on. Fast-forward 3 and a half years and here we are. Lukas is a happy, healthy 4 and a half year old, and we are in our “we got this” era of diabetes. Burnout (that wall you hit when you feel like you just can’t diabetes anymore) still happens, but we have worked hard on strategies to get us out of burnout as quickly as possible. 

We have the unique experience of starting our diabetes journey particularly early, with a toddler barely exiting infant hood. As a first time mom, you picture what your baby’s childhood will look like. Their first steps, their first words, first haircut, first day of school. No parent ever pictures that they would be in a hospital with their child getting a lifelong diagnosis before they have ever had their first steps. Before he could walk, before he could talk, before his first haircut and his first day of school, he was diabetic. It is all he has ever known, and basically the only version of parenthood that we have experienced. 

No parent ever pictures that they would be in a hospital with their child getting a lifelong diagnosis before they have ever had their first steps. Before he could walk, before he could talk, before his first haircut and his first day of school, he was diabetic.

Lukas is our first and only kiddo (for now) and I hope to share my perspective of life with this being the only motherhood that I know. Our cars, bags, and purses are all equipped with the diabetes supplies we need to “casually” save our son's life, while living his every day toddler life. At first glance you would not know Lukas was diabetic just as you would not know that we have smarties in our pockets, emergency glucagon in our backpack, insulin in our butter compartment, and test strips in the strangest of places. This is our normal.  

If I could leave families of newly diagnosed kiddos with just one piece of information, it would be this:

Just like any other learned skill, you will get better at it over time. Be patient and find your people.

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My name is Amanda. I am an advocate. A wife. A sister. A friend. A reader. A business owner. An insurance calling expert. A carb counter. A nurse. A late night finger poker. A full time pancreas. I am Lukas’ mommy. And I am grateful to be here. 

Stay tuned for more about our life and experiences with a tiny type 1 child. We plan to share everything from a day in the life, how autism affects our life with T1D, how the journey impacts motherhood, grieving the life you thought you would have, teaching your toddler about diabetes, and so much more.