A newer d friend of mine – actually 2013 JDRF Children’s Congress Chair Angie Platt – had just posted about her morning. Her son with diabetes had awoken – as everyone with T1D does at times – with high blood sugar that would just leave most of us wanting to crawl under the covers and blow off the day.
But that’s not what her son did. Instead, he got up, corrected, powered through the lousy feeling and made it to school on time. In a world where kids stay home for, oh, a stubbed toe, her son really showed her just what he is made of (and she would have been fine with him staying home. But he insisted).
It got me thinking about just how strong people with T1D are. They walk around, often feeling high or low or shaky or sick or a combination of all that and more, and they do it with a smile on their face. They run meetings at work or take midterm exams or take care of their baby or whatever else life throws at them, saying little of how bad they feel and just getting on with it. Why? And how? I think with my daughter, part of it has always been her desire to kind of give T1D the finger. Like: Hey, you, T1D: you will not ruin my day. So take THAT.
This reminded me of a day we had a few years back – well, it would be six years ago now. It was supposed to be one of those “best days ever.” In fact, Lauren had been preparing for it, thinking about it and getting excited about it for weeks. But as it started, for a while, it looked like T1D was going to completely blow it out of the water. I’m talking Affleck on an asteroid blow out. In the end, which I’ll let you learn as the story unravels; I learned that people with diabetes aren’t just brave. They are an amazing combination of brave, gutsy, determined, stubborn, resilient and just plain awesome. So here goes. And if anyone has the story as I wrote it that day and sent out to tons of folks, send it along to me. I’m doing my best to remember it all as it went down. Here goes – read on. And then share your story. How have you seen someone battle T1D and show it who is boss? Have you done it yourself? I want to hear.
Jan. 19, 2007 was going to be a big, big day in Lauren’s life. Like – remember it forever and ever kind of day. Because while she had testified before Congress once before (so funny – how many parents can say that?), this was really big. She’d been chosen by the Health, Education, Labor and Pension (HELP) Committee of the Senate and its chair (and our dear friend) Sen. Ted Kennedy, to not only testify at a huge joint Senate hearing on stem cell research, but to be the only patient to testify. This meant that, at 15 years old, she would be giving the honor and responsibility of representing every kind of person in our nation – make that world – who was in need of a cure of some kind.
And she took it quite seriously. Her testimony was crafted over weeks; with the HELP staffers helping her tweak it and work on it. At home, she was practicing and preparing. Of course there was the much needed shopping for the right outfit and plans for just how to wear her hair (she was a teenager after all!).
She flew down the day before with her dad. I had to do an ungodly travel day and fly out to LA for an important JDRF board meeting, then catch the semi-red eye right back to Washington DC, where I’d meet up with them in the middle of the night, grab a couple of hours of sleep and then set out for Lauren’s big day.
So yeah, maybe if I was a better mom; perhaps if I wasn’t so very wiped out from flying across the country and back within 24 hours, I might have actually suggest she check her blood sugar when I heard her getting up to use the bathroom in the hotel room a few times. But I didn’t. She was wearing her CGM (very new at that time. They’d only been out for months). So I felt secure.
The wake up call rang and I said I’d get in the shower first, and Lauren could follow after me. While I was in there, she ran into the bathroom and vomited. And vomited more. We looked at the CGM. Sensor fail. We grabbed the meter. HI. I could tell it wasn’t just HI, it was, as we say in Boston: wicked, wicked HI.
“Oh, Mom,” she said in between taking a huge correction shot and getting sick again and again. “What am I going to do?”
I told Lauren the only thing I could: We had two and a half hours before we had to be at the Capitol. Let’s just see what happens. She was too sick, too drained, to miserable to even take a shower, much less do her hair the way she’d planned. An hour went by and she was still feeling horrid. I suggested we walk to where we were going to meet up with a friend and advocacy wiz, Ronnie Tepp, who was going to attend the hearing with us. I told Lauren that she absolutely did not have to testify; that if she was not up for it I’d explain to the committee. Senator Kennedy, of all people, would understand.
We got to Ronnie’s office and I told her what was going on. Lauren was white as a ghost. You could tell she was feeling so very sick. Ronnie suggested to Lauren that we call over to the HELP office and tell them she could not make it.
“No,” Lauren said without hesitation. “Do you have any fresh fruit? I’m going to will myself to rally.” Ronnie found some fruit. Lauren nibbled at it, glancing at the clock and knowing we all had to get a cab and get over there if we were going to make it on time. “I’ll eat it in the cab. Let’s go,” Lauren said. “When we get there if I feel like I cannot do it, I’ll tell you.”
We got to the Capitol and were escorted to a private room where not one but nine US Senators were waiting to meet Lauren before she testified. (One of them was a relatively new guy to the Senate named Obama. He left the senate soon after for another job). Lauren sucked it up and shook all their hands, chatted a bit, and then asked politely if she could sit down and just read over her testimony one more time. They assumed she was nervous. I know my girl – nothing makes her nervous. I knew she was checking to see if she could get through it.
As she sat and mouthed her testimony, I told the nine senators, all standing in a circle around me, the story of Lauren’s morning. And I said this.
“You see, the thing about diabetes is it’s a beast. You think you can tame it, but you cannot. She went to bed fine. She tried her best. And this morning, really, if I’d taken her to a hospital, they would have admitted her. That’s how very sick she was. It shows,” I said, “the delicacy of every moment with diabetes on board.” I can tell you, all nine of those Senators looked over at Lauren, mouths agape, and embraced an entirely new understanding and respect for what it means to live with Type 1.
We all went into the hearing room, which was packed past capacity with spectators, media and others (this was one of the top issues in the nation at that time). Lauren was up third in a line of four to testify.
Her hair didn’t look the way she’d planned. To me, she was so pale and frail. I knew she was bouncing back, but I knew that post high lag can feel pretty awful. She sat politely while the first two on the panel gave their testimony. Then she took a breath, looked around at the dozens of Senators who’d shown up for the hearing (quite unusual – that’s how important this was) and she began to speak. She had her notes in front of her, but she knew them cold. She spoke with honestly, passion and poise. She looked the elected officials in the eye and beseeched them to take action. Here is what she said.
The room erupted when she was done. And most of them had no idea what her morning had been like. (I kind of felt bad for the last researcher who testified right after her. He’s one of the top heart experts in the world. And I watched him deflate as Lauren testified. I think he even cracked a joke about it before he began. Never follow the kid, much less the kid who stole the room).
We look back on that day often. We had technology, education and proximity on our side, and still diabetes found a way to worm its way in and try to trip up my girl.
But she’s so strong. She’s so determined. She’s so resilient. She not only didn’t let diabetes win that day, she crushed it, taking on a challenge that most adults who were feeling perfectly fine might have trouble doing. Sure, diabetes could make her high and sick to the point of throwing up constantly and could wear her down physically. But no way was it going to take away her plans. She stood up to it, and in doing that, taught so many in that room a less.
And it did not go unnoticed. A few days later we were in the DC airport, waiting to grab a flight home. Lauren was feeling well again and we were thrilled with the response our mission had gotten from the hearing. Suddenly, a man approached Lauren.
“Excuse me,” he said. “But …. Aren’t you Lauren Stanford?” Lauren looked at me and then him and said “Yes. Do I know you?”
He extended his hand to hers, shook it and said, “Well you do now. My name is Sherrod Brown and I’m a senator from Ohio. I saw you testify yesterday and I just have to tell you, you are a role model and hero to me. I will never, ever forgot your testimony and just how you handle your life.”
Wow. And with that I say this: Those nine senators who knew the entire story of that day and the dozens more who listened to her did not just walk away understanding the delicacy of every moment in Lauren’s life with diabetes, but in the life of anyone with diabetes.
Because you’re all heroes. You might not have to sit in front of a group of powerful senate committees and convince them to vote the way you need, but you’re daily actions are just as vital.
So as you nurse your baby while you feel worn down from D, while you ride the train into the city to make it to work on time even though you fought a low all night, while you push a cart through the supermarket to feed your family even though you’d rather curl up and sleep off your high, know this:
I get it. The delicacy of every moment. And hey, diabetes: Jan. 19, 2007 was still a top day in Lauren’s life. Your attempt at changing that: DENIED.