Today is National T1D (type 1 diabetes) Day. It's not really a day to celebrate. Let's be honest, diabetes sucks and who wants to celebrate that shit. It's more of a day in which we think about those that live with type 1 diabetes and honor those people for being courageous. We think about those that have lost their battle with T1D and unfortunately will never get to experience what it will be like when we find the cure. Today, we spent the day thinking about new beginnings....well...kind of.
Heather and I have made the decision to switch Micheala's insulin pump. After doing some research, we found an insulin pump that will better fit her needs. Her old insulin pump was fine, but we needed more. We needed something to help us better control the roller coaster that is her blood sugars. Our new insulin pump has a built in CGM (Continuous Glucose Monitor). The new feature will alarm us when her blood sugars are getting too high or getting too low. It will even warn us if her blood sugars are starting to rapidly trend up or down. This feature will help us give her insulin or back off on insulin before she either gets too high or bottoms out. Basically takes a lot of the guessing game out of the equation.
Meeting with the pump rep was like starting all over again. We had to learn about the insulin pump, just like when we started the other pump over 3 years ago. Micheala went through the same anxiety with this pump, as she did when starting her other pump. We had to bribe her to put in her new sites and she resisted and cried in fear. Eventually she was brave and allowed us to insert the new pump sites.
Even at 7 years old, I hate to see Micheala scared. I saw a fear in her eyes that I haven't seen in quite awhile. Someone who has been so brave over the past 3 years with her diabetes, was once again scared. She just didn't want to hurt. As parents, we knew that this was the best for her and had to be strong, but tears the size of beach balls coming from her eyes did not make being a Dad very easy for me.
Today marks the first day of us battling diabetes with better equipment and I am looking forward to finally have an upper hand.
This morning at work, I decided that I had enough of this damn disease. My daughter can't even trick-or-treat without her blood sugars dropping to 40. We walk a short route (to prevent getting too much candy) and didn't even make it half way before we had to stop and load Micheala up with sugar. I ended up carrying her the rest of the way. Happy Halloween Micheala. Sure is a lot of fun trick-or-treating from your dad's shoulders. Micheala was up a couple times last night because her blood sugars got down to 40 again. At one point she started "hallucinating" and though we had monkeys outside our window. She also was saying that she couldn't move her hands. She was alright, but left us scared because of how low her sugars were...on Halloween of all days.
Sleep deprived, Heather and I continue to fight through our days. We want nothing more than a full 8 hours of sleep, but know that those days are behind us and have been for the past 3 years. We work full time jobs during the day and spend our evenings working the night shifts with Micheala. I am tired of this disease.
It's days like today that I question "why"? What did my daughter do to deserve this? This is when I get stuck in my negative space and start feeling sorry for Micheala and our family. Over the years I have learned to erase the question of "why me" from my thoughts and start asking questions like "what am I going to do to change this"? However, I feel like we are entitled to a day or so in which we grumble and hate the situation that we live in.
Tonight, I am now thinking about how to change the world that Micheala currently lives in. How do I erase the nights like we had tonight and get rid of the insulin supply cabinet that serves as an eye sore in our living room. I dream of those nights in which I can lay my head on my pillow and not worry. I dream of the days when I don't have to call and talk to a family that has been newly diagnosed. I long for the days that the school nurse and us do not have to be best friends based on my daughters disease.
Some of you reading this may have big hopes and dreams for your kids like being successful business men or women, sports stars or even just finding their soul mate and starting a family. My dream is that my kid doesn't have to suffer from this disease anymore. I can't see the future, but I can look into her eyes and see that she is going to be someone special when she gets older, because at the age of 7, she already is someone special.
So for today, I'm telling diabetes to piss off! Tomorrow it's new beginnings...well..kind of...it's more like back to fighting the good fight.
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