From Michele: While I shared the short version of my story on the about page, I couldn’t help but share more as there’s much else to be said that I believe can help another. So today, I’m taking it right back to the start of my very long story… what it was like growing up with a Type 1 Diabetic and how truly scary it was. Because even though it was not my diagnosis, it still affected all of us. So here it goes.
You know how they say that one thing always impacts another. Well, it was definitely the case for myself and my family when my brother was diagnosed with Type 1 Diabetes. At the time of his diagnosis I was just five years old. But, there I am getting ahead of myself. Let me start from the way beginning and share how this one diagnosis impacted our family.
Before His Diagnosis of Type 1 Diabetes
So before his diagnosis, we were a normal family living in New Jersey. My two older brothers and I would go on vacations every summer up at Lake George and Montauk. And we’d go to school during the year without a problem. But out of nowhere, this life of spontaneity changed.
My brother got sick.
It lasted for about two weeks or so. At the time, my mom didn’t quite know what was wrong. He was losing weight, he was tired all the time, and sorry if this is TMI, but he was also peeing ALL of the time. My mom kept wishing that he would get better, but two weeks went by without any diagnosis of any sort. So she called the doctor out of worry and he was admitted into the hospital.
Type 1 Diabetes… That was his diagnosis.
Three words. One diagnosis. That’s all it took to change our family.
Going out to meet him in the hospital was terrifying. At the time, I was only five years old. Looking at him from the entrance of the doorway, I didn’t quite know what to think. He was attached to so many different wires… he didn’t look like the same brother to me.
My mom picked me up and plopped me on his bed. At the time, I was so terrified to move and not quite sure what to think. Little did I know, at the time, things would get harder from that point in time.
Life After the Diagnosis of Type 1 Diabetes
After he was diagnosed, you would expect things to go back to normal for the family. Yet, it wasn’t that way.
After his diagnosis so much was changed. From our foods to our schedules, it was imperative that we do everything we could for him.
Grilled chicken, diet soda, and sugar-free items became frequent items on our grocery lists. While candy and other items that we used to enjoy in moderation, were nixed off the list.
Besides the foods changing, a lot changed about dinner times. Rather than having dinners whenever and eating what we liked, we had set times where we would eat together and it would be the new items that my mom would buy. And every single night, I’d see her measuring out everything on the food scale that she had bought. She monitored the food for my brother and even though he was hungry, she had to tell him no. (**At the time, she didn’t understand that he could increase his insulin and eat more.)
As a five year old, this was so confusing. I didn’t get the whole concept. I started to learn that “sugar-free” foods were healthy. Over time, this became a lifestyle for me. If he was going to be healthy, so was I. Yet, I didn’t realize what was healthy for him wasn’t healthy for me.
But that in itself is another story in itself, as this was one of the triggers that led me to my ten year struggle with anorexia (that you may have seen on Instagram or my blog!)
But Anyways… Back to Type 1 Diabetes
So many things changed from the foods to our schedule. You know what else changed? Our vacations that were supposed to not be stressful.
During our vacations, we couldn’t do as we had done before. We couldn’t just go to the beach all day and run around without no care in the world. And we couldn’t just go eat out at late hours because we were at the beach all day long.
Instead we had to schedule. We had to measure. And we had to do the best that we could.
Oftentimes others didn’t quite get the struggle of what it meant to be a Type 1 Diabetic and/or how scary it was to live with one.
There were countless of vacations where his numbers ran extremely low. When my mom went to the line to ask for a slice of pizza just for him, they would say no. Sometimes this resorted to us finding a bottle of orange juice or something (anything) we could find to raise his numbers until he could eat.
It was scary, frustrating, and stressful that many didn’t quite get the immediacy of him needing food on our vacations. He could have died because of the lines and the misunderstanding of the staff at those restaurants that we depended on.
Besides Vacations…
There was always something to worry about. In all honesty, there were many scary experiences where my brother went back into the hospital and almost died because of complications.
And that’s just it. This is part of my why behind Not a Standard… to share these stories, to learn from them, and to inspire someone else to keep going. There were so many scary times being the sister of a type 1 diabetic (and I can imagine for my brother as well), where it would have helped to have some kind of awareness or knowledge of the disease.
And it’s the way with many diagnosis and struggles, which is why I started this page. So while I’ll continue sharing my epic of a story (in-between your stories), I’d love to open this up and have you share here!
With Love Always,
Michele
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