A Glimpse Inside the Life of a T1D Mom

Oh my gosh!! You know that family member whose child was recently diagnosed with diabetes? They’re ALWAYS talking about it, like it’s a big deal or something. I mean seriously, it’s only diabetes, they’re clearly over-reacting and just want attention. It can’t be that hard. Or what about that co-worker who is always checking their phone (while they’re supposed to be working!!) because they say their child is constantly in danger. They act like their child will die if they don’t check their phone. It’s getting ridiculous! 

Most parents of children with T1D run into someone who thinks this way. People hear “diabetes” and think that it’s not a big deal. Just take a pill, exercise, and eat better. How hard could it be?

Most people don’t know the first thing about what it’s actually like to have a child with this lifelong, life-threatening, autoimmune disease. So, some parents are stepping out and speaking up. Sharing their stories with people so that everyone can get a glimpse into the life of a T1D Mom. Like this one, by a Mom of 2 T1D teens.

“A Glimpse Inside the Life of a T1D Mom”

To begin I would like to offer some insight into type 1 diabetes.

I realize that before both of my boys were diagnosed (the same week almost three years ago), I was completely ignorant of this disease. Many people with T1D have a family history of the disease and it is inherited. This is not true for my children and it was diagnosed as environmentally induced (this is another topic altogether).

Type 1 diabetes did not choose my children because of the food that they eat or because of the way I chose to feed them, nor did this disease ravage their bodies due to lack of exercise or any other life choice.

Losing weight or changing their diet will not cure them of this disease. Type 1 diabetes is due to a pancreas that no longer is capable of producing insulin. It is a 24/7, lifelong disease that potentially will never have a cure.

My children can eat like any other child. The only difference is that they need externally administered insulin because their bodies cannot produce the insulin on its own.

As a mom of two type 1 diabetic children, I am always armed for battle.

There is an intricate balance of glucose needs in the body. The magic number for us is between 80 and 150.

Without enough insulin, glucose will rise. High glucose creates ketones. Ketones lead to DKA. DKA leads to a coma from acidic blood which can quickly lead to death.

With too much insulin, blood glucose drops drastically and quickly. If glucose is too low, my child will lose consciousness and potentially die.

Both ends of this spectrum can happen quickly and both ends are potentially fatal. I am armed 24/7 for battle with a bottle of insulin in one hand and a glucagon pen in the other.

We have good days and bad days.

Although, I know I am not supposed to label them as “good” or “bad”. I have balanced days where I am able to relax into my life. Some days, I have one child at 400 glucose fighting ketones while the other is crashing with a glucose of 35.

Consider a day like this one and add in the fact that I am sitting at my desk at work, trying to finish a large, time-sensitive project, and my kids are at school.

I panic about which school nurse to communicate with first. Which crisis is most urgent and which child am I leaving in danger while I care for the other.

Consider the above scenario again, and imagine it is happening at 2 AM. A blasting alarm from a glucose monitor warns me of the potential danger. I bolt out of bed, bleary-eyed and disoriented. And yet, I am still armed with my battle armor even deep in sleep.

I take care of the immediate danger to my beautiful children, and remain awake and vigilant for however long it takes for them to get back to that magical safe bubble of 80 to 150.

One of the above scenarios is our reality multiple times a month.

If you knew me well…

You would know that I strive to walk through life with grace in all things. Truth be told, T1D has been my biggest struggle in my walk of grace. Under the surface, there is a constant quiet fear that today will be the day that I am forced to say goodbye to one of my children.

I am not a stranger to the loss of a child. In 2000 I held my three day old daughter as she took her last breath. That memory is a ghost of remembrance that my children can be gone in the moment it takes to exhale a final breath. I try to quiet that distant voice but it is present within me always.

In July it will be three years since the devastating diagnosis for both my children.

In that time we have learned so very much. Now, we have an intimate knowledge of their endocrine system. We know how their bodies will react to different foods and how to tweak insulin dosing appropriately. We have taken advantage of electronic tools that help to stay on top of this disease.

Continuous glucose monitors (CGM) update their glucose via Bluetooth to my phone app every 5 minutes. This Bluetooth wave is attached to a monitor that is inserted by cannula to their bodies. My children are also on insulin pumps which alleviates the need for multiple injections of insulin a day. These devices are priceless to me as a mother.

And yet, they also bring another layer of responsibility. CGMs are changed every 7 days. In a perfect world, the boys would change on the same day, but due to CGM failures, this rarely happens. The pump site is changed every 3 days. As with the CGM, we rarely stay on the same schedule day for both children. This means that on almost every day of the week, I am changing out a device that goes under the skin on one of my children. Our activities outside the home have to take into consideration these device changes.

If there is one benefit to this disease within our family…

It is the beautiful miracle of the bond I have with my boys. At 13 and 15 years old, we are deep into the teen years. These years can be a struggle for many parents. My boys are fully aware of the connection we share as a team to keep them healthy.

In their eyes, I see a reflection of gratitude, love, trust, and appreciation for the role I play in their lives. At an age when many children are seeking independence through potential disrespect toward their parents, I live in a world were my boys tell me daily that I am the best mom in the world.

Many in my life have labeled me a hero through this battle. I am not a hero…..I am a Mom who would walk to the ends of the earth through coals of fire to protect my children and to bear witness to their success on the path of life.

The next time you find yourself with someone who thinks T1D isn’t a big deal and that you’re making mountains out of molehills, remember that there was a time that you didn’t know much about T1D either. Try to take a moment (or several) to tell them about your journey with T1. Give them a glimpse into life with T1D.

Before your or your child’s diagnosis, did you have misconceptions about T1D? Leave a comment and tell us about it. Don’t forget to head over to the Carb Counting Mama Facebook page and “like” it!!