Do you know what the H word is?
This reminds me of a story my Mom once told me. She taught first grade and reading for over 33 years. She has LOTS of good stories. But this one has always stuck with me.
One day, a student told her that another child had said the H word. Knowing six year olds like she does, Mom asked what the H word was. You never know. To them words like "underwear" or "fart" or "darn it" are considered bad words. The child whispered, "SHIT".
But that's not the H word I'm talking about.
I'm talking a word that actually does begin with H.
It's not hard to remember waaaay back when I first started this blog. In some ways it feels like lifetimes ago and in other ways it feels like it was just yesterday. Sometimes I turn around and realize how far we've come on this journey and other times I feel like all I've done is walk in a circle and I'm right back where I started almost four years ago.
And my feeling about the H word is no different.
Shortly after Sweets was dx'd, I reached out into the abyss of the Internet and the blogosphere looking for someone, anyone who would understand what I was going through. I needed someone to help me. I needed someone who spoke my language. I needed someone who had been in my shoes. And I mean REALLY in my shoes. I was looking for a mom to a little girl who was dxd somewhere between 2 and 3 years old.
The first few months after dx were AWFUL for us. We had to hold her down for every. single. shot. She cried and screamed and begged us not to do it. I was a wreck. And I needed someone who had been there and could help me.
One of the first bloggers I found was Jill from Diabetes Sweeties. Jill is mom to Kacey - a spunky girl who happens to have Type 1. Kacey is a bit older than Sweets but I felt a connection. And so I read and read and read. I learned about their life with diabetes and the ups and downs they were experiencing.
And I'll never forget Kacey telling Jill something very profound. She told her Mom that she couldn't hate diabetes because it was a part of her and hating it would be like hating herself.
At the time, I thought that was some pretty powerful stuff coming from the heart of a little girl.
But you know what? I didn't get it.
Because I HATED diabetes.
Yeah, it was a part of my sweet one. But it was a part that I felt didn't belong there. A part that I would be glad to kick to the curb and never look or think twice about again.
I couldn't really wrap my head around the fact that anyone could actually.... NOT hate diabetes.
I wanted it gone. I wanted it obliterated. I was scared and angry and frustrated. I had seen enough blood, enough tears and enough pain.
To me, diabetes was a ugly scab on her perfect skin. I didn't feel like we had to hide it. But... truth be told, I would have been just as happy to see it disappear.
I've never forgotten those words.
And not long ago, they came back to me.
And I realized....
I get it.
Diabetes is a part of Sweets just like it's a part of Kacey. Just like it's a part of you or your child or your loved one.
It has become a part of her that is so integral to who she is that I couldn't separate the two if I tried. It's a part of her just like her sparkling blue eyes or her smattering of freckles or her super contagious giggle.
It was like an epiphany.
Diabetes isn't an ugly scab. It's actually.... dare I say it? Something beautiful.
Don't get me wrong. I'd still be happy for it to go away.
But here's the thing. It will never go away. Even if there was a cure tomorrow and we could throw all of our lancets and our strips and our insulin and pumps and our needles and on and on and on into a tremendous bon fire.
Diabetes would still be a part of her. Whether her pancreas worked or not.
Because it's more than a disease.
Because of diabetes, my child knows what it's like to endure.
Because of diabetes, my child knows what it's like to be different and why everyone should be treated with compassion and love.
Because of diabetes, my child has incredible empathy for others.
Because of diabetes, my child knows how to never give up.
Because of diabetes, my child knows her strength, her beauty, her confidence come from within.
Because of diabetes, my child sees people first and "disabilities" second.
Because of diabetes, my child truly understand equality.
Because of diabetes, my child has had extra practice with patience.
Because of diabetes, my child knows she is brave.
Because of diabetes, my child knows she is a fighter.
Because of diabetes, my child knows LOVE.
Because of diabetes, I know I'm stronger than I ever thought.
Because of diabetes, I am able to appreciate the small moments of beauty.
Because of diabetes, I am thankful for so much more than ever before.
Because of diabetes, I work extra hard to take nothing for granted.
Because of diabetes, I have more empathy.
Because of diabetes, I celebrate the triumphs.
Because of diabetes, I know perseverance.
Because of diabetes, I know LOVE.
Sure, there's a lot of other things we know. We know pain. We know fear. We know medical terms and procedures we never dreamed we would know. We know anger. We know frustration. We know worry. We know sleepless nights. We know exhaustion. We know helplessness.
If I could take this disease away from her, I would. In a second.
But it wouldn't matter. I've seen too much. She's seen too much.
It's taken almost four years, but I can stand here today and tell you that I get that statement now.
I now understand how diabetes can be such a part of you that you couldn't hate it. That hating it would be hating yourself.
Sure, it's ugly at times. Sometimes it's just plain awful.
And yes, we want that cure. We want the disease to stop wreaking havoc in her body. We want her to live a "normal" life free from testing and blood and pumps and cgms and carb counting and on and on and on.
Maybe you think I'm crazy. I don't blame you. This is so hard to put into words. I feel like I keep chasing this truth around and around and it's staying just out of my reach.
So let me try just one more time....
Do I hate that high blood sugars are like glass in her veins? That lows rob her brain of the sugar it needs to develop properly? That she feels singled out because she can't just eat out of the bag or go off with any friend's parents? That she is attached to devices 24/7? That all the needles HURT? That she is more likely to develop complications like blindness, heart disease, stroke..... than her peers? That she's had a seizure due to a low? That sometimes this disease scares her?
Yes. I do.
I hate those things.
But that's not the whole story.
Diabetes is all of those things. I would love for those things to go away.
But diabetes is more than that.
It's a part of who she is now.
It's a part of who I am.
It's like when your ice cubes melt into your coke. (And for those of you that know me... YES, I know I have a problem. I just love Coke so much. Quit laughing.) You couldn't separate the two again if you tried (and believe me, if I could figure it out I would). You can't go back.
You're left with a new drink that may be a little bit different from the original. But it's not all bad. I'd certainly never say I hated my Coke just because of a few ice cubes. Sure, I might try to fish them out. But I still love my coke.
Of course, too much is not a good thing. Too much ice messes with the flavor. Constant complaining because there is ice in my cup is just going to ruin a perfectly good coke. Just like too much emphasis on diabetes or too much negativity is going mess with your outlook on life.
It's ok to acknowledge the parts we don't like.
It's just that sooner or later, we see the bigger picture. The ice got put in our cup. For good or bad - it's there. We can't take it out. We can't go back. We might as well look for how it enhances the drink and move on!
It's taken four long years, but I can now say that I can enjoy my drink. Truly enjoy it. Dare I say that I might actually like the flavor better now?
Sure, there are parts of diabetes that I don't like. It's no bed or roses.
BUT.... for as bad as those bad parts are.... there has been so much good. I didn't even mention the friendships we have made. And that good overshadows the bad. Crazy - but it does. Most of the time.
So my daughter has Type 1 diabetes. And I can't hate it.
Because she is perfect. Diabetes and all.