In the past few weeks, the diabetes community has suffered several tragedies in losing young people to diabetes. It is shocking and upsetting when diabetes takes the life of anyone, but somehow more so when it cuts a young life so short. Moira McCarthy Stanford is a journalist, a long-time JDRF volunteer and mom to Leigh, 22, and Lauren, 18 — who was diagnosed with type 1 at age 5. Today, Lauren is one of many teens who may look 'perfect' on the outside, but under the surface, she struggles terribly with day-to-day D-management. In light of recent events, Moira volunteered to open her heart about raising a teen with diabetes — in hopes that her words can help others.
A Guest Post by Moira McCarthy Stanford
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Walking into my kitchen to do one of the billion chores it seems I have to do every day of my life, I was stopped short by the emotion that overtook me when I noticed what was on the counter.
Used test strips. Three of them. Not in the trash; not put away. Now before you think I'm a neat freak, consider this: the surge of emotion I felt was pure, undiluted joy. Because the test strips littering my granite countertop were evidence of the most beautiful kind I could ever imagine.
They were evidence that my daughter was checking her blood sugar.
Why, you ask, would this send me so over the moon when she's had diabetes for 13 of her 18 years on this earth? When the total finger pricks she's done definitely number in the 40-thousands? Because, you see, she's that truly puzzling soul: a teen-aged girl who has had diabetes for more than a decade. And while I struggle to get my head around it, that has meant — more times than not in the past five years — periods of checking seldom if ever, ignoring blood sugars until they skyrocket to stomach-retching highs, "forgetting" to bolus for snacks (and even meals sometimes) for her and a constant state of combined worry, anger and sadness for me.
I tell you this because I think it's time that we all just stood up and admitted what is true in many homes: our teens — even the brightest, smartest, funniest and most driven of them all — have a hard time dealing with the day-to-day demands of diabetes. I know first-hand. My daughter was the "model patient" for oh-so-many years. She started giving herself shots just weeks after her kindergarten diagnosis. She understood the math of bolusing before she knew how to spell "algebra." She went on the pump as the youngest kid in the Boston area to do so at the time, and figured it out like a trooper. She was seven then, and I can honestly tell you I've never done a site change myself. She willingly strapped on a CGM when they were big and ugly (it didn't last long, sadly), and understood its function. She is her high school student council president. She was on homecoming court. She was voted Most School Spirit by her fellow students. She's a four-year varsity tennis player. She's anchor of her school news and its nominated for an Emmy this year. She's spoken before Congress twice and spoke as part of the Democratic National Convention in 2008. When he was alive, she had Senator Ted Kennedy's private cell phone on speed dial. So far she has been accepted to every college she applied to. Yeah, she's quite a gal.
So, one would think, the idea of pricking her finger to check her blood sugar six or so times a day and then counting her carbs and pushing some buttons on her pump must not be such a big deal, right? It's just something one has to do and that's that, correct?
Think again. Because diabetes is the one thing that trips my daughter up. Constantly. It started the summer before she turned 13. I'd yelled across our club pool for her to check her blood sugar and she just was not in the mood to do it. Instead, she tried something "new." She fiddled with her meter for a bit and then yelled back across the pool to me, "I'm 173!" I nodded, reminded her to correct, jotted it down in her color-coded log book and went on with my day.
She told me months later that was her turning point; the moment she tasted the "drug" she'd struggled with for years. That drug is called freedom. That day, she realized that I trusted her so much, she could pretty much do or not do whatever she wanted. The idea of not checking was so delicious, she still says today she thinks she must know what drug addicts feel like when they try to detox. She skipped testing more and more. By fall, she started skipping insulin doses too. And as she told me after she landed in the ICU and almost died, as sick as it made her feel physically, the emotional high of DENYING diabetes any power in her life (and yes, I do see the irony here) made that horrid feeling all worth the while.
So the ICU trip was my wake up call. It call came clear; she fessed up. I worked at being more in her face and actually looking at the meter and the pump. Her A1C came down. And by the next summer, I was back to being the trusting mom again. She never did land in the ICU again, but her blood sugars have suffered. She seemed to have two good weeks of doing what she should, and then she'd fall apart again. As she grew older and was not with me often, it became easier and easier for her to hide her secret. And as much as she intellectually knew what she was doing was wrong, the addiction held tight. After a particularly jarring A1C one year, she tried to explain her struggle to me.
"It's like I go to bed at night and I say, 'Tomorrow morning I'm going to wake up and start new and do what I am supposed to do. I'm going to check regularly and take my insulin. I'm going to bolus every time I eat. And starting tomorrow, it will be fine.' But then I wake up and I just cannot do it, Mom. Does that make any sense?"
Ummmm. That explains the success of the Weight Watchers Program. We mere humans want to do right and start fresh. We know well what we have to do, and yet... we stumble. Of course I understood. But the thing was: it's her life she's messing with. Each time she stumbled again, my heart hurt more.
I could never admit any of this to just about anyone, either. My non-diabetes-world friends would say something like, "Well, isn't it just a matter of discipline?" Or, "Well, you need to just take control!" And even my diabetes-world friends would judge. Everyone's kids seem to have an A1Cof 6.3. None of them mind checking, and they all fully understand why they should change out their site every three days even if it still seems pretty good (or so they all say). I'm the only bad mom. My daughter is the only bad diabetic. That's what I thought.
Until I started to be honest about it. Lauren spoke before Congress about her struggles and the line of people waiting to talk to her afterwards stretched out seemingly forever. There were either kids who had done the same thing and not admitted it, parents who feared their children were doing the same, parents who wanted to figure out how to keep their kids from doing it, or kids saying "OMG. You totally told my tale." Then I started to hint to D-world friends that all was not ducky in our house. A few brave souls reached out to me and told me — privately — that they, too, were struggling with their teen. Still, I sit here today a bit shamed as I write this.
After all, I am my daughter's protector. I am her defensive linebacker. How could I let anything bad come her way? I mean, diabetes? I could not block that. But complications? That's on my watch. Good Lord.
But here is the thing: I really believe that by addressing this openly, we are going to help millions of people and even save billions of dollars. What if there was no shame attached to your teen with diabetes rebelling? What if it was no different than, say, admitting your kid skipped their homework and got a zero on something (what kid hasn't done that once?) What if instead of hiding in shame, teens — and parents of teens — had an open forum to discuss their situation and find ways to make things better? It's time for the non-compliant teen and his or her parent to come out of the closet.
I believe this will bring us closer to a cure. How? Because, first, the sad coincidence is that the adolescent years are years the body is ripe to start on the path to complications. Tight control is vital. And yet, teen hormones make it tough enough to do when you try hard, and hard to want to try at all. Talk about some mixed up stuff. So what if we could find a way to help teens stay in tighter control? That would save hundreds of millions of dollars in health care for hospitalizations now, and perhaps billions of dollars in healthcare cost for complications down the road. Of course the real "Cure" is the answer, but wouldn't a good, smart, small, easy-to-use artificial pancreas help bridge this horrid gap?
I mean, what if the first people the APP would benefit are those who studies showed did the worst on the CGM trials? Because the reason they did the worst is simple: THEY ARE TEENS. Like my daughter, their chemistry is messing with them physically and emotionally. They grasp onto this crazy idea that the terrible feeling of constant high blood sugars is a fair trade for losing the feeling of obligation to their disease. So, give the obligation to a cool little tool. Heck, take it away when they are 23 if you want. If all we do is create a world where teens and their parents can cry "uncle" and a good tool will be handed to them, won't we already have changed the diabetes world dramatically?
The sad thing is this: some mom (or dad) out there with an eight-year-old with diabetes is going to read this and cluck her (or his) tongue and say, "I'm glad I didn't raise my kid that way. I'm glad my child doesn't do that." She's going to be smug; she's not going to agree. I know this because I was that mom. I had it all figured out. And look where that smugness landed us. So if that person is you, I don't want to hear it. But should you ever need support and understanding if you face this, I'll be here for you.
My daughter is doing better this week: thus the test strips littering my countertop. Her last endo appointment was a nightmare. Her A1C came up high and her endo told her, in no uncertain terms, something that had been in the back of my head: if she does not change her ways and prove herself, she will not be heading off to the amazing college so far away that we've put a deposit on for her.
I hate that while other kids are stressing over roommates, she is figuring out how to break years of difficult diabetes struggles. I despise that she really does have to take this on the right way once and for all. But, as I smile through tears at the litter on the counter, I feel overwhelming hope. I adore my daughter. She's strong, smart, funny and good at heart. She can do it. And the best thing I can do for her is admit that it's hard, help her try, understand when she slips up, and work hard for that elusive better way of life for her down the road.
Moira, my daughter doesn't have diabetes, but she's a burgeoning teen, and I cried when I read this. Pure, unadulterated honesty is always the best policy in my book.