185 days. 185 days of living with a disease that doesn’t take a break. Six months since we left the ICU in Nashville with an entirely new life. One that has brought sleepless nights, endless advocating, and exhausting research. November is National Diabetes Month and with it also being six months since Blair’s diagnosis, I thought I would share what Type 1 Diabetes has taught me.

To preface, I must say that what I share is the approach our family has chosen and that is best for us. For each person, their experiences will shape their approach when it comes to their health and management of any disease. And also, if some of this feels a little on the spicy side please know that it is simply because these days my Mama Bear mode lies just below the surface. At all times.

Moving on with what Type 1 Diabetes has taught me…

The body is a miraculous machine

It was about 3 weeks following Blair’s stay in the ICU. Her blood work had come back with elevated lipids once again. It had decreased from where it was at in the hospital, but still elevated. Her medical team wanted to send in a referrel for us to see a pediatric lipid specialist. Immediately, everything in me screamed no. It was too soon. Her body had just undergone so much trauma and for longer than we even knew based on her A1C. She needed time.

I made my wishes known and told them that we would be holding off. We waited another month before doing blood work again. During that time her body was being fueled with nutritious food. We were enjoying walks and spending time outside. We had her taking vitamins and supplements to fill the gaps of the mineral deficiencies in her body. A month later and her blood work came back with a normal lipid count. 

When one has too much education in their head, they tend to forget the basics. Our bodies, when fueled properly, are incredible and miraculous machines. Patience and nourishment through food, nature, and rest.

Kids are smarter than given credit for

It’s funny what you are told at diagnosis, especially when you are in the role of parent and you are watching your child go through it. There is a lot of talk on “kid first and disease second”. As well as “don’t hold them back, let them eat what they want and dose for it”. Or my favorite, “If you restrict certain foods for your child they will end up resenting you for it and developing eating disorders later on in life”. Since when did having a “good” childhood require the consumption of loaded carbs and processed sugar?

I will never forget when Blair turned to us in the hospital following a meeting with the “nutrionist”. She had just gotten done telling Blair that she can have anything she wants and that her meals each day should include 30-60 carbs at each sitting (we didn’t eat that way before Blair’s diagnosis). And while I held back my desire to tell her everything she didn’t know, Blair turned to her dad and I and asked, “Don’t carbs turn into sugar?”. We quietly nodded to her. Puzzled, she followed up with, “But I thought sugar isn’t good for people with diabetes”.

Sidebar:

“Child first and disease second”. Is that what we are telling these children when they have grown into adults with complications of neuropathy, kidney damage, heart disease, or blindness? I would assume that they would have preferred making adjustments in childhood to live out better days in adulthood had they been told the actual facts and been given proper and helpful medical care. Absolutely criminal… but then again repeat customers makes for a lucrative business.

See? I warned you about the spiciness…

…I digress.

The three of us left that hospital a few days later having promised we would throw it all out the window. That we would always keep the bigger picture in mind. I have watched my eight year old daughter grasp the importance of properly managing her disease. I have watched her read food labels, say no to things she feels are not healthy for her body, and be 100% in the driver’s seat along with her dad and I when it comes to managing her disease. She has shown self control where most adults would struggle. She has shown maturity where most would crumble. And she has shown me what it means to handle trials in life with grace and faith. 

Medicine does not equal healthy and is not a one size fits all

I will forever be grateful for modern medicine and the role it plays when needed. I know a lot of people who benefit greatly from having it as a tool when it comes to managing their health. We benefit greatly from modern medicine in our home and are so grateful something like insulin exists. It literally keeps our daughter alive right now.

However, medicine does not equal healthy and I think that has been forgotten somewhere along the way. In a society that doesn’t want to be bothered by lifestyle changes and putting in the effort to better one’s health, medicine is being used as a fix when in reality, it is a Band-Aid. There is always a root cause that deserves attention and time.

Along with Type 1 diabetes, Blair was also diagnosed with hypothyroidism. Because it is connected to her Type 1 and influences her glucose levels, her medical team wanted to put her on medication to help control things which we did.  After a few weeks she was showing some symptoms – minor, but still not normal. And I also noticed changes in her demeanor and emotional state. Expressing my concerns, I told her medical team we needed to address this because the current protocol wasn’t working. We ran blood work to see where her levels were at. Elevated slightly, one of her doctors came back and told me that they sent in a prescription for a higher dosage amount – double what she was currently taking. Just like that. No concern for the issues I was seeing at home. They simply looked at numbers on a paper to decide the course of treatment. 

Needless to say, we have been hunting for an all-new medical team for Blair. One that accounts for the individual and we are looking forward to finally having that in place as we move forward.

Medicine is not always a fix. What works for one does not always work for another. And having letters after your name does not impress me or qualify you to give proper care anymore. That has been obvious to anyone with eyes to see. And my standards, especially for my kid, are so much higher.

A mother is a powerful animal

I have spoken about this before – the importance of trusting our gut as mothers – and this experience has once again solidified my belief. We are gifted with such an incredible and powerful instinct of knowing what our children need. It cannot be explained and it cannot be rivaled.

Sometimes, especially in crisis mode, it can be easy to question or doubt your gut. However, we were created to do what we do. And while we may not have the answer every time, we know when something is not right. And we must always act on that – doubt be damned.

When you don’t think you have anything left, you do

Type 1 diabetes and the way that we decided to approach it for Blair has been a full-time job. 24 hours a day, 7 days a week, we do not let up. And while we make sure her only focus is on being a kid and enjoying childhood, the Bearded Gent and I are at war. Even with Type 1, Blair deserves not only the best childhood but the future as well. And that is our focus right now. We won’t let up.

A documentary was released today and one that includes families I have had the opportunity to speak with and learn from. I am so extremely grateful for all of those who have helped us navigate this new life with hope and with confidence. If you are new to Type 1 diabetes or know someone who is facing it, this documentary is extremely eye-opening.

And this book has been a saving grace. 

—

Six months down, many more to go.

A big heartfelt thank you to those of you who have walked this chapter with us, who have prayed for our girl, and for us. It has meant everything to our family.

K, xo