I was sitting with my daughter with diabetes and chatting with a person who has known her all her life. Lauren was in town for a quick visit and I have to say it: she looked great. We were talking about life and friends and some kids we know who are going through a semi-rough time (not medical related, more personal stuff).
The visitor looked at Lauren and said this:
“You’re lucky. You’ve never had to deal with any big problems in your life.”
I jumped up, picked the person up and threw them through the window at a force so strong it not only sent them careening off our neighbor’s front door, it broke that door into pieces.
Okay, I didn’t do that. Instead, I seethed quietly. I felt my anger bubbling up into my throat. But I didn’t say a thing. When the guest left, my daughter and I laughed.
But you know what? It’s not funny. Because here is the thing (be warned. I’m not often pissy and whiny on this blog, but today I feel the need): While we do our best to work toward an amazing and fulfilled life despite diabetes; while every day of my daughter’s nearly 16 years with diabetes on board has been about “yes you can!” this road has not been an easy one for her. And while we’d not change our lives for anything, she’s not been without challenges. She’s had to deal with some big, big honking challenges. Make no doubt about it.
And while, no: I do not expect the person who knows little about T1D or does not know our family well to understand that, I DO expect those who have been around us all 15+ years of T1D to get it. I know: part of this is my fault. I raised my daughter to not complain and not whine. I taught her to deal with it and move on. Time after time after time after time. I encouraged her to NOT dwell, even on the roughest days.
So I feel like I need to make it clear and then put it aside:
Life with Type 1 Diabetes on board can totally SUCK. SUCK SUCK SUCK.
Ahh, that felt good. Let’s be sure you heard me: diabetes can suck. Suck. Suck suckity suck suck. Suckerific, suckmeisterly suck sucks.
Here’s the tightrope we walk, this life of raising a child (and then helping guide an adult, as I do now) through this life with T1D: it’s challenging, it’s scary, it’s frustrating and it’s sometimes just awful. But we have no choice other than to accept it, make the best of it and live well despite it. We cannot walk around all mopey and wearing our struggles on our sleeve. Who wants to be shrouded in “victim?” And since diabetes shows no outward “symptoms,” most folks figure: that’s cool. She checks her blood. She takes her insulin. And she’s fine. She’s regulated.
I guess sometimes that our rocking it like bosses makes people assume it’s not a big deal.
So today, a bit of education. If you’re reading this blog, you most likely already know all this. But pass it on. Share it with friends who might not get it. Post it on the wall of a family member or long-time friend and just say, “I know you know this – but read it!” (Because in my case, it seems, some don’t!) Here’s what I have to say about life with Type 1 Diabetes:
*It’s relentless: There’s not such thing as “remission” with T1D. Even on the average day. My daughter can check her blood glucose and see an “in range number.” Does that mean it’s going to be a schwinging good time all day? Nope. Not even. Because every hour of every day, stress and exercise or change in routine or a carb that is counted slightly off or an injection site that has a tiny bit of scar or, I don’t know: the stage of the moon (!!??!!) can impact her blood sugars and make them high or low. As one friend said recently “I believe that wearing orange underwear may in impact blood sugars.” That’s how random it is. We in this D-world must live in a permanent state of the heady combination of suspended animation (“We are fine. We don’t mind.”) And hyper-vigilance (“It’s never fine. We must keep tabs. Always.”) Try combining those two. Like I said: it’s relentless.
*It’s boring: Pick a task – any task. And then assign it to yourself for, oh, let’s just say eight times a day to be conservative. And then do it. Over and over and over. If you skip it once, punish your body with a smack against a railing or something. That’s what it’s like. I remember one time a friend was over and I’d left Lauren’s glucose check strip box out. The friend looked down at the box and saw the script instructions and gasped, saying “Ten times a day? Is this for real?” Yes, it is. And even if it helps, it’s lousy to have to rinse and repeat and rinse and repeat and rinse and repeat. It’s boring. And annoying. Any mere human would waver. And yet, in the world with T1D, we really should not.
*It’s scary: I’m not talking about complications like kidney and eye disease here. I really, truly believe that we’ve come so far in complications treatment (thank you to each and every one of my friends who have donated to JDRF), that those things will be rare in first world countries in the near future. But it’s still scary. Like, if my daughter goes out for a couple of beers. I worry and stress and fear that she’ll have a low that will hurt her. Or if someone’s child was low (or high) before bedtime. You tuck them in and then … you wait. And worry. Send them off for one of their many “Firsts.” A sleepover. A prom. A school trip. A drive in a car in which they are the driver. College. It’s terrifying. For us, and for most, it all works out. But it’s a level of “holy sh** that thankfully, most never experience.
*It’s expensive: Co pays. Gas to get to appointments. Parking there. Needles that are not covered because while the insulin is a must, your insurance company feels the needles are a “luxury item.” Missed work days. It goes on and on. Diabetes is one hell of an expensive way to live. And guess what? That means you, the person without diabetes too. Treatment of D accounts for one in every three medicare dollars spent in the US. Think a cure won’t help you? It will help your wallet.
*For now, it’s forever: There’s no way to mince these words. While my daughter hopes for a brighter future and works hard (as our entire family does) to move us toward better treatments and a cure, we are not at a cure yet. So that feeling of not knowing what will happen in two hours? For now, it’s forever. Until the cure, there will never be an hour my child does not have to think about diabetes, does not have to react to diabetes, and does not have to feel some or all of the above.
That said, it does not define her. We raised her to be strong and independent despite diabetes. We taught her to do whatever she wants to in life and to work hard at NOT letting diabetes rob her of her joy. And she’s doing great.
So while I get it that all this might not show, and while I remind my daughter (I know she’s reading!) to NOT be a victim, to NOT give in to the weight of it all and to NEVER slow down her amazing rate of happiness, I also say this:
Don’t ever assume her amazing ability to rock all this means it’s easy. Got that?
Good. Now I have to go clean up that mess in my neighbor’s yard.