You are the light

During our stay at UVM, we had to learn what type one diabetes was, how to manage it, and all the ins and outs. We had to learn how to care for our 11-month-old daughter and this life-altering diagnosis before leaving the hospital. We had to learn how to supplement an organ. Fake pancreas.

Nooo pressure.......

Looking back, now, it all feels like a blur. Days were running together. Multiple education sessions, multiple nurses and faces. Trying to catch up on sleep, not feel completely and totally lost with it all, and be a positive parent and partner. It was a total shit show to be honest. I was there alone with Maybel. Magnus and Brett weren't allowed to come be with us, all the covid policies were still in place. Just me and my girl on the diabetes struggle bus. I slept on those real crappy recliner pull-outs, and hardly got to shower, it was round-the-clock t1d. PSA: I'd like to take a second to recommend to whoever I need to recommend it to, to stop buying pull-out chairs. They are garbage and no one can actually sleep in them. Invest in fold-up cots for parents, friends, and family to actually get decent sleep while with loved ones. Thank you. It was insane. But I had to learn. Brett had to learn but he was only allowed to come for the required training during the last few days. I was a full-time mom and t1d caregiver for a while. Especially in the beginning. No fault of Brett's. It was the hospital policy and then at home, he had to return to work. Brett was a massive support for me and the kids. When I felt like I was going to lose my shit, he was there to help keep me kosher.

So what did we learn? What was so difficult? We had an endocrinology team that helped us learn and navigate practically every aspect of this auto-immune disease. We had to learn how to monitor her blood sugar, how to administer insulin, how to manage her nutrition, how to manage diabetes and exercise, and how to recognize and treat low and high blood sugar, as well as ketones. Every aspect of t1d is a learning curve. We're still learning about new foods, growth, age, activity, and more.

But you know what they don't teach you? How to live a normal freaking life. This isn't on them either. It's hard to adjust and adapt. There isn't enough time in the world to teach someone everything there is to know about living with type one. There isn't a handbook, and EVERYONE responds differently. Similarly, but different. Especially with an 11-month-old. Blueberries don't hit the same for everyone, you know?!

I'm going to break some of this down as much as I can...

Monitoring her blood sugar:

Using a blood glucose meter or continuous glucose monitor also known as a CGM, to check blood sugar levels. Maybel has a CGM that I will chat about another time. We also have to monitor blood sugar levels using a glycosylated hemoglobin, hemoglobin A1c or HbA1c test. Maybel gets this done every 3 months during her recurring endo appointments.

Administering her insulin:

We have to learn how to give insulin injections or use an insulin pump. This can be very complicated. Sounds simple, but in real life, its not. We started by giving Maybel injections using a needle/syringe. For example, if she is too high or not in range, and everyone has their own "range" but hers is 80-180. Anything below or above that range, requires attention. Healthy glucose range varies depending on many factors but usually is between 70-130. We have to do a basic math equation to determine how much insulin she needs. We would determine her blood sugar either with her CGM or by using a meter. Once we found that we would determine if it was a correction, or if it was a correction plus carb coverage. Then we do our math, and find out how much insulin she needs. This is where people get lost and sometimes I even do, still to this day lol. I will touch on this again later.

Managing her nutrition:

Understanding how to time meals, count carbohydrates, and how certain foods affect blood sugar, and in what way. I can't even deal with pasta. If you know, you know, ha!

Exercise!

Learning how to adjust insulin and food intake for physical activity. Making sure we have enough snacks and food to supply her with if there is a need (and there usually is) during physical activity.

Recognize and treatment

Learning how to recognize and treat low and high blood sugar, as well as ketones. What are ketones? Ketones are in your blood or urine indicate that your body is burning fats instead of glucose for energy. Having ketones means your body is using its backup energy source fats. If you have Type 1 diabetes, high ketones can be dangerous. Levels that are too high can put you at risk of a potentially fatal complication called diabetes-related ketoacidosis (DKA). Maybel was in DKA when she was first sent to the PICU at UVM. Ketones fuel your body in the absence of glucose - it's your body's main source of energy. Usually, your body will break down food into glucose, and insulin cells use glucose as energy to store it for later when you need it. If you're not getting enough carbs, your body will switch to ketosis. This is when your body breaks down fats for energy making or releasing ketones. Your body can go into ketosis and make more when you do things like fast, exercise, or sleep. The moral of the story, ketones for a type one diabetics make the blood too acidic and toxic and are bad, bad, bad. What about the keto diet? Right, people on the keto diet purposely cut back on carbs and eat more fatty foods so their bodies will burn more fat. However, they should also consult a healthcare provider to ensure their plan and process is safe. I'm not their mama, so I don't know how to manage that. Crazy enough, Maybel has had low blood glucose and high ketones simultaneously on many occasions during illnesses. Your blood glucose doesn't have to be high to have ketones. You can be ill or stressed and have ketones too. I'm sure there might be more reasons too, but I'm not a doctor lol.

Some things to know and remember:

T1D is an auto-immune disease. This is not type 2 diabetes. They are NOT the same. What are some symptoms?

Increased urination, especially at night, like severe bedwetting

Extreme thirst - I'm talking you drank over a gallon and are so thirsty.

Increased appetite and hunger - Maybel gets ravenous!

Unintentional weight loss and blurred vision

Fatigue, lethargic, or looking like a zombie at the dinner table.

Irritability or other mood changes - hard one with a toddler

Recurring or persistent infections - even diaper rash

DKA freaking sucks and can be wildly difficult to manage sometimes. What are some symptoms?

Blood sugar of 300 or more that doesn't go down, even with insulin

Vomiting that lasts more than two hours

Sweet or fruity breath (its crazyyyyyy that it smells like watermelon)

Fatigue, confusion, or dizziness

Nausea or abdominal pain

Excessive urine output (this is always a dead giveaway for Maybel)

Brett and I were already overwhelmed with life and having two kids under two years old. We didn’t have any family in Vermont and while we made friends it wasn't quite the village we had back home. Everything was just a lot during that phase of life. When Maybel was diagnosed it felt like doom. It was shitty. Unpleasant, sad, and tough. Like waiting for the other shoe to drop, except you got hit with 13 pairs of shoes. It was just, so much.

It has been a hard, hard journey and I struggle daily. Being a daughter, a wife, a type one mom, just a mom, all of the things... it's hard. I saw a cheese affirmation once in a journal. And since reading it, and thinking about it, it's been my go-to affirmation on days I just don't feel up to the task of life. I keep repeating to myself "You are the light." Magnus and Maybel and even my husband, we all need warmth and light. That feeling when the sun comes out after a rainstorm.. the dopamine from the sun.. It's the light. If you're reading this and feel the struggle, on a parent level, a type one family level, or another level, just know you are not alone. It's challenging and some days it feels like there is no light - but you are the light. YOU are what holds it together and keeps the positivity. You are a much-needed source of goodness during dark times, even on those days when you feel your not at your best and barely scraping by. You are the light. If you're shaking your head at me, thinking "No I'm not, I'm struggling" WE all struggle. We all have challenges, but you are still trying. You are still going. You are still there for someone. I bet you encourage your kids to see the silver lining. I bet you redirect their negative thoughts and teach them optimism. You are their warmth and their light.

Even if it's a small flicker of radiance - you are the light.