“The best kind of writing is the kind you really don’t want to write. The kind that scares you. I mean down to the bone scares you.” That’s what one of my professors used to say.
Well, Professor Darden: this one scares me. Because it’s raw. Because it’s real. Because it’s opening me – and my parenting skills (or past lack thereof) — to ridicule, judgment, and more. Because it puts down in print something that’s been haunting me for nearly a decade.
But with some recent events (including a few parents reaching out to me privately for help, as well as some chatter on-line about DKA and how it happens and what it means) have brought this all back to me.
In fact, about a week ago, this story (one I thought I’d pushed far enough back into the recesses of my mind that it was stored away for good) kept me up all night. Shaking.
And the more I think about it, the more I think despite all that risk, I need to share this. Because really: If sharing this leads just one parent to recognize something in the story and tweak the care of their child with diabetes in a way that helps them avoid this happening to them, it will be worth it. Please note: this is my personal experience, no one else’s. I have no way of knowing how other kids’ DKA’s come about, but I do know how ours did. I am hoping by sharing it, you’ll never have this experience.
So here goes. I’m terrified. But I’m sharing.
On an October night in 2004, when she was just 13 years old, my daughter with diabetes nearly died from DKA. I remember her coming to me, her best friend egging her on, and holding up her meter and saying, “Mom … I’m in trouble.” I remember calling the endo and then rushing her to the hospital. I remember the ICU, and everyone – even the hospital staff! – saying, “Wow – if this can happen to our model patient; this can happen to anyone.” DKA. As if by some kind of evil magic. As if out of nowhere.
Those were the older days of labs and lab results, and so it took a couple of days for all of us to see the clues that proved what had actually happened. (A seriously elevated a1c that shocked each and every one of us). That lab made it clear: It was not sudden thing, and it was no fluke. And here’s the biggest thing of all; the thing that kept me up nights for a long time and that I pushed way, way back in my mind, but that popped back up recently:
It was completely, absolutely, 100-percent my fault. Mine. Her mother’s. Her DKA could have easily been avoided. By me.
Don’t stop here and tell me it’s not true. Because it absolutely is. I know it, I understand it, and I have to live with it. Thank anything and everything that has any kind of benevolent power that she survived because the guilt of this as it is, is horrid enough. Had she not, I don’t know how I’d survive.
Here’s how it was my fault. My daughter was indeed the “model patient,” and from the moment of diagnosis, we were pretty much the “model family.” I read all I could on daily care, research, new technology, everything. She, from the start, braved it out and did her own finger pricks and shots (at six – with a grown up supervising of course!). She was one of the first young kids to go on a pump in our state. She was a rock-star diabetes camp kid. We had a huge walk to cure team and volunteered our time for camp as well. By the time she was 11, she was so solidly in the loop I trusted her every move. And that is where the trouble began.
That part of the story is not new. I wrote about it HERE as a guest blogger (and that blog still gets read quite often). And my daughter even spoke about it the first time she testified before Congress (you can see part of what she said HERE, forward to 2:56 if you don’t want to watch the entire thing). I outlined it in my most recent book (and shared what I learned from it).
But what I’ve never shared is how it was my fault we got to that point. Because you know what? All I had to do to keep that DKA from happening was simply see her – I mean really see her — check her blood sugar and administer insulin one time a day. Just once. That’s all it would have taken.
Right about now, parents of little kids are shaking their heads and thinking, “What kind of horrible mother does not see her child do that once a day?” This kind. And here is how it happens:
You trust them. You encourage them to be independent. You flipping praise them for it. And then, one day, they kind of don’t really want to check their blood sugar when you call out for them to do it from the other room (or in our case, my daughter tells me, the first time I called out from across the pool at our beach club). They wait a little while; maybe they fiddle with their meter. And then they yell back a number. “117!” (Or to really convince you: “283! But I under-bolused for the hot dog roll! I’ll correct now!”)
And you, the trusting, proud parent, believe it all. You even go home, click onto your color-coded excel spread sheet of blood glucose values and enter it. The made up number. And the made up comments. All carefully documented and studied for trends. And life keeps chugging along.
That what I did. And my daughter tells me now, that first time she made up a number and I believe it opened her up to a temptation that was, for her, nearly impossible to deny. She made things up more and more, eventually even skipping boluses. All the while I was praising her hard work and independence, and keeping track with my excel sheet. The last thing she wanted to do was let me down. How could she ever be honest about her dishonesty when I was so proud of her “independence?”I went on with life, thinking we were doing great.
And you know what? It was easy to do that. I was seven years into raising my child with diabetes and I was burned out. Extra-crispy burned out. So there I slid, feet up and back deep into the soft cushions of the Davenport called “denial.” It was so comfortable, I couldn’t bear to pick myself up, stretch out and face the hard work in front of me. I lounged in the glorious softness of ignorance.
My daughter began to go to great lengths to hide her deception (I share some things to watch out for in a sidebar at the end). To this day, I flinch when I see a bottle of control solution or hear that a meter has been “misplaced.”
And again I tell you: this is all my fault.
One day, when I asked her to check and she yelled a number in to me and I wrote it down, she came in, looked me in the eye and said “Mom. You shouldn’t trust me so much.”
I laughed. I laughed. My daughter was using code to ask for help and I laughed. Because – she was the model patient. And I trusted her. And it was just … easier. Yes: it turns my stomach to this day.
So once the A1c was back and the truth was clear, (and in fairness to me; even her endo and CDE were completely floored. None of us saw it coming or happening), it was time to make a change.
And change I did. Within three months her A1c was back to rock-star status, and I was watching her every move. I would never, ever let her go into DKA on my watch again (and she did not). But I knew something: while I would never, ever, ever let her slip into DKA again, I did not want to rob her of her freedom.
So what’s a mom to do? How could I keep her safe and not smother her with oversight (and perhaps drive her to burn out even more?) Because even while I obviously wanted to never make the same mistake again, I did not want to let go of my dream and goal of never letting diabetes rob her of her joy in life. Her team agreed and helped us along.
Here’s the one simple thing I could have done (and I started to do) to keep her safe:
Actually see her check her blood sugar and administer insulin at least once a day.
I’m not saying that’s all I did. I’m just saying if on a certain day that’s all you can manage (and again; I know it’s hard for parents of smaller kids to imagine this. But take an older teen. Mix in some rebellion. Dollop on a long school and after school sports/drama/student government schedule. Top it off with a social life and you’ve got a challenge. For them to truly live their lives, they cannot always be with you.
So again, if ALL you can do is SEE them do this once a day, they’re going to stay out of DKA. Twice a day is even better. Because if you actually watch it happen; it happens.
It’s funny though: I know I am way, way, way oversensitive about this (being that gosh … I almost killed my child with my lunacy), but you have no idea how many times I suggest this to parents and they are insulted.
Because they raised their kids right. (So did I.) Because their child is honest about everything else (so was mine). Because in their house, there is trust (there was in mine too). So I ask them: what’s the harm? If I could go back in time, I’d have given anything to have done that simple step and been wrong than to have let my child go through what I let her go through.
The following years were not a breeze. My daughter did not enjoy diabetes in her teen years. But she was never hospitalized again. She didn’t miss school because of diabetes and she was able to eek by. Her health might not have been perfect, but I kept her safe and still gave her freedom.
Today she’s a young adult, over that burn out (for the most part. What person with T1D doesn’t have their moments?) She’s acing college and rocking her Congressional internship. In a few months she’ll graduate and go on to her working life.
Sometimes, I forget how different it almost was. But today I’m remembering and sharing for one simple reason:
So that’s never the case for you.
And you know what? If I get beaten up for this or picked on, it will all be worth it if your child never lapses into true DKA by their own doing.
You, unlike me, will never feel the guilt of truly letting your child down like I did. She was a child, even if I acted like she was a responsible adult. She needed me to intervene and my ego and burn out got in the way. May reading this mean that will never happen at your house.
Here’s to that goal.
SIDEBAR: Tricks and things to look for
Signs your child may be faking or lying:
*Lost or forgotten meters ( a way of them avoiding you seeing them)
*A sudden increase in “bad sites” (a reason they are high if you find out they are or they admit they are)
*Sudden use of control solution (to fake a number).
*Batteries “run out” for a long time when they are not with you (a reason they did not use their pump or meter)
*Control solution checks (just keep all the solution away from the child)
*Calling up a number, sticking in a used strip and “showing it” as a current check (Just be sure to focus in on the time and date on the result as well).
*Friend’s blood. (No way of knowing it. But it does happen)
*Disconnecting pump under clothing to let bolus drip out.
*Squirting shot out next to skin instead of in it.
I remember once my daughter told me all these tricks saying to her “Goodness! If you’d used those evil powers for good we’d probably have world peace and a cure for diabetes!”
Last note: I want you to know that we are fine. It only took that once for me to learn. That my daughter and I were able to tackle this, keep her safe, allow her to thrive in all of her life’s goals and still be close is something I am quite proud of.