Celebrating National Diabetes Day

Sunday is National Diabetes Day, so in its honor, I am giving the spotlight to the disease that has transformed my life by way of the young, brave boy I proudly call my son.

Mark has taught me what it means to be strong and brave, what it means to live daily with a chronic disease when all you really wanna do is just be like everyone else. He has taught me what strength and bravery really are. He has taught me that life isn't fair, and while it's okay to whine about that occasionally, it's not really a place you want to spend a lot of time in. He has shown me that living with a chronic disease still means living, celebrating, rising above, even when diabetes tries to beat him down. He has taught me to be an advocate, to fight not only against diabetes, but for him, and for other kids who also live with this monster every day. And I'm glad, too, to take on that fight, because I know one day, when I'm tired of fighting it and think I can't go on, there will be a cure. That thought alone keeps up my strength, and my resilience.

Five years ago, I didn't know anything about diabetes. I was completely ignorant about it, and thought it was a disease you got from being unhealthy, or that old people got. I thought a diagnosis automatically meant losing a limb, because mention the word "diabetes" and everyone will share a story about their grandma/grandpa/great uncle/elderly neighbor getting their foot or leg or finger amputated.

I thought diabetes meant you got an occasional shot, some orange juice if you got shaky, and a lecture from your doctor for making yourself diabetic in the first place. I thought it was some weird disease that made you shake and eventually killed you just because you wanted one thing (a baby) more than anything else in life, even living. (Yes, Steel Magnolias was my favorite movie.)

I thought a lot of things. And I was wrong about most of them.

I learned that diabetes doesn't just affect your blood sugar, it also changes the way you see the world. It looks like an angry little kid who misses out on school parties because no one can give him a shot for that cookie. It looks like a pale, shaky little kid whose blood sugar is so low, you can barely think through the fear long enough to shove a juice box into him. It looks like a bad habit, falling asleep on the couch every night, instead of in my bed, so I wake up to test Mark's blood sugar.

Diabetes feels like a lot of things, too. It feels like fear, worry, anger (which is always really just a subset of fear), my heart breaking--why did it have to be my kid? Or ANY kid? Or anybody?

But those are the dark moments. I try to focus on the good things it feels like, such as gratitude, gratefulness, a lump in your throat you can't name when people bend over backwards to accommodate this goofy little kid on something as mundane as a field trip.

It feels like a giant hug from random people, strangers really, people you wouldn't ever have met except for this one crazy coincidence--they too, have a little kid with a chronic disease. They, too, have bad sleeping habits and worry incessantly over Halloween and Easter baskets. They, too, know how you feel.

It feels like pride, when that kid learns to poke his own finger, read his own numbers, count his own carbs, bolus his own insulin. It feels like an angry hive of bees buzzing around your head when he ignores all those steps, and it feels like all-consuming guilt when you realize he's just a little kid who shouldn't have to remember all that in the first place.

But mostly, on both my best and worst days, it feels like hope. Hope that my kid will learn to co-exist peacefully with his disease. Hope that maybe they really will find a cure in his lifetime--heck, they created continuous glucose monitors and insulin pumps in the last 20 years alone! Hope that this little kid brought to the rest of my family, who have been diagnosed with their own flavor of diabetes in the past few years. Hope that while diabetes may not be beaten, it also won't beat us down, either. Hope that because of this damned disease, I have learned a lot, so much, and that I can pass that knowledge to other parents, walk them through their own scary initial journeys into this dark tunnel. Hope that I can gift them, to say it really is just a tunnel, and that every tunnel has an end. And at the end of each tunnel is your kid, or your loved one, that one person you would slay dragons to keep safe.

So take that, diabetes. You may get your own day, but even that day celebrates hope. Hope that education, that a cure, that your disappearance, will prevail. It's not a day to celebrate your existence, but rather to celebrate our rallying against you.

A day I can't wait to embrace, when my son finally rips off his pump, tosses away his meter, and eats his fill of jelly beans because he wants to, not because he has to.

A day when I hear the last story of amputation someone tells in front of my kid...except for the amputation of you, diabetes, from our lives.

That one I can't wait to hear.