I wrote this post on the airplane while traveling to an Advocate Forum given by Novo Nordisk. On Monday I will post my thoughts about our meeting. Until then, I'll just leave my emotions here. With prompting from a friend, I left it raw and unedited.
For the past 18 years my life has been submersed in the familial relationship of Mom and Type 1.
My tolerance for the disease ebbs and flows like everything else in life.
Some days I can think about it all day long and my psyche isn’t affected.
Other days, I rebel against it. Pretending it isn’t important. Refusing to give it the power it demands while it sits on the throne of my boys’ well being.
Lately I have been suppressing an uproarious anger. I push it down, not allowing the feelings to make it to the surface. It seeps into my cells and becomes a natural part of my spirit, and as a result, I find myself on edge more than I should be.
There is an article circling around social media about a teenage boy who passed away while driving, allegedly because of his diabetes.
There is another article that generally finds its way right below about a young, recently diagnosed child who passed away.
I flip through the stories, numb. I let the anger sit with me, but don’t allow manifestation.
It exists nonetheless.
My anger exists and I’m so so tired.
I’m tired of watching my children jog on the hamster wheel that is Our Diabetic Life.
I’m tired of watching them give in from the exhaustion and then watching them in horror as they allow the wheel to toss and turn in violent circles until they are forced to find their footing again.
I’m tired of nothing new. Of mice being cured, but humans not. Of organizations leading on that they are hopeful for a cure, but behind closed doors not expecting one. We are like perpetual Hansels and Gretels, finding candy houses and preparing to feast on their greatness; because we hunger so badly we ache…but then finding nothing but fight after fight inside each one.
I wonder if pharma knows how hard it is? I wonder when they announce their profits if they think of us and the constant injecting of their products and the toll it takes on bodies and minds.
Type 1 Diabetes times three lives in this house. There is always someone bolusing. There is always someone eating. There is always someone changing a set, someone overwhelmed, someone who just wants to forget.
Every minute of every day. We are not allowed the luxury of not thinking about it. Yes I am grateful for insulin to keep my children alive. I praise the Lord for it. But I. AM. TIRED.
And I don’t even HAVE diabetes.
I’ve had all three boys on CGM’s before. What results is a wave of information that is so overwhelming I can’t think straight. What results is every minute turning into every second. It results in no sleep for me, and no sleep for them. Beeping. Beeping. Beeping. Three boys in puberty means someone is always beeping. The guilt sits on my shoulder like an especially large elephant. I want them to be on CGM’s, but I cannot. Looking at the graphs my brain swells with the outpouring of numbers. I watch those with one child with diabetes and I know that if I had but one, they would wear the CGM. My child would be safer, healthier. And even though their A1C’s show that all is well, I’m not doing what all of you are doing.
And I hate myself for it.
But the hate is suppressed. I won’t let it consume me, even though it has. Even though it is part of who I am.
Don’t get me wrong, I don’t’ feel sorry for myself for having three amazing boys with Type 1. I only know that with three, I can only do so much. And the story I’m telling myself is: it isn’t as much as you.
I’m doing my best.
Yes, they thrive.
Yes, they live good lives.
But yes, they are tired too.
I’ve sat for the past 15 years reading article after article about breakthroughs.
And yet. Same. 15 years of same. Since the introduction of Humalog and Novolog, there has been nothing that has changed our lives. Throw us a bone universe. Give us something that will make life more predictable for my boys.
I’m not sure how much longer I can harbor this anger. Pretending it doesn’t exist has worked for so long…I’m not sure I can continue this forever.
Give us some change. Concrete change that I can pick up from the pharmacy or order from DME. Something that I won’t have to take out a second mortgage for.