A Harsh Reminder

This week I was harshly reminded of how terrible Type 1 diabetes is. I was reminded by a little girl named Eilish. Eilish passed away in the middle of the night because of a disease that she and my son shared.

Most days I'm able to push diabetes to the back of my mind. I count carbs. I help with boluses. I adjust basals. I monitor sugars at half time of soccer games. I ponder what to do about that 2 AM sugar that is a little on the high side. But, somehow, I keep the "bad things" at bay. All the "what ifs".

The first thing I do when I wake up every morning is tiptoe into Riley's room and listen for his breathing or watch for his chest to rise. I've been doing it for 5 years now. It's become somewhat of a habit. I think I had convinced myself that he'll be OK. He's been OK for 5 years now.

But, the story of this little girl, this girl with so much life left to live, has brought all of the "what ifs" flooding back in. I haven't slept well in 5 years. I get up at least a couple of times a night to check Riley's sugars. But, now, my sleep is tempered with something else. My brain seems to be on alert all the time. I can't quite rest. I've had several fitful nightmares where Riley was in a coffin.

It's horrible. I hate this disease. I hate it with a passion. I hate that it can rear it's ugly head and anytime steal away what little bit of peace I had made with it. I hate what it makes Riley have to do on a daily basis. I hate the little black dots it leaves on his fingertips. I hate how it alters his moods. I hate what it did to Eilish, what her parents must be going through. And, I hate that I cannot be sure that it will not happen to Riley.

Yes, it's a harsh reminder that no matter how much you convince yourself that everything will be fine, it's just smoke and mirrors. It's just a way to get yourself through each day. A way to cope with a disease that you are helpless to make go away.

My heart is broken right now. I haven't felt this way about diabetes in a while. I had stupidly convinced myself that everything will be fine. And, this story reminds me that it may not. This story reminds me how fragile life is and how we really don't have the control that we think we do.

The only thing I can do is hope and pray for a cure . All of my fundraising efforts go toward Dr. Faustman's research.

I will do what I can. I will pray for this family. I will pray for a cure. And, I will hope and pray that Type 1 diabetes spares my son from the same fate.

A Five Year Battle

Five years ago today my son was diagnosed with Type 1 diabetes. I don’t have the energy, either physical or emotional to write an actual blog post about it.

Right now I am exhausted. I was up late doing a site change and then up every two hours all night checking sugars. So, yeah, I’m tired. Not just because of last night, but because of the last five years. I’m just tired of it all.

But, I felt like I had to come here and acknowledge this day in some way. I know this blog post isn’t the most uplifting, and I’m sorry about that. I can barely keep my eyes open, let alone put together a coherent post summing up the last 5 years of life.

All I can say is that we’re still here. We’re still fighting. Five years later we’re still determined to fight a battle that seems will never end. Actually, Riley is fighting the battle, I’m just the one on the sidelines trying to make the strategic maneuvers that will hopefully keep him safe for one more day. Today I feel like waving the white flag, but I know I can’t. A little boy who means everything in the world to me looks to me to lead him in this battle that he didn’t chose. The enemy just snuck up on him and we’ve been on the defensive ever since.

He’s been fighting this battle for 1,825 days now. There have been no cease fires called, not for birthdays, holidays, or even the middle of the night.

He needs a cure. It’s as simple as that. He needs a cure.