Thank You, Stranger: ‘Every single second I have with them is a gift’
Elizabeth Naylor with her son, G, along with his siblings Lukas and Isadora in front of their van.
Courtesy of Elizabeth Naylor
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In our series Thank You, Stranger, we hear about small acts of kindness that have a big impact.
After a difficult diagnosis, a mother is facing a heartbreaking loss and making the best of her remaining time with her son. MPR News producer Ellen Finn talks with New Brighton’s Elizabeth Naylor about a last trip with her son, who is nicknamed “G.”
Use the audio player above to listen to the full conversation.
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Audio transcript
NINA MOINI: Time for another episode in our series called "Thank You, Stranger", where we get to hear about small acts of kindness that have a big impact.
After a difficult diagnosis, a mother is facing a heartbreaking loss and making the best of her remaining time with her son. MPR producer Ellen Finn talked to New Brighton's Elizabeth Naylor from the road on one last trip with her son, who is nicknamed, G.
[MUSIC PLAYING]
ELLEN FINN: 14 years ago, when Elizabeth's oldest son, G, was six years old, he started to get sick. His illness was a mystery for years, until doctors confirmed that G had a rare degenerative genetic condition called myotonic dystrophy. It causes organ dysfunction. And people born with the condition have short life expectancies. Elizabeth's younger children have also tested positive for the disease.
ELIZABETH NAYLOR: People, when you have kids, are like, oh, I just want my kids to be happy and healthy. And then when you realize kind of early on, like, the healthy piece is like, well, I want you to be as healthy as possible, knowing that you have an ongoing condition that is going to likely shorten your life. And then you, like, focus on the happiness piece.
ELLEN FINN: Elizabeth's daughter Gianna is G's younger sister by two years. She died when she was 16 from the same disease after months in and out of the hospital. It has been really hard for Elizabeth and her three other kids. When some of G's organs started to shut down earlier this year, his health care provider suggested he come spend time at the hospital. It was looking like his life was winding down.
ELIZABETH NAYLOR: After seeing how much pain she was in, and how uncomfortable she was, and just she was so limited. She was just stuck. He decided when the doctors presented him with this idea like, OK, it's time for you to get the IV nutrition, he said, no. And he said, I don't want to die in the hospital. I'm not going to do that. We had kind of a deal back then. I said, if you get to the point where you're sick of being sick and you don't want to be poked, and prodded, and tested, and sit in a hospital anymore, I'll support whatever your decisions are as painful as it is.
It's your body and it's your disease. And I don't know what it feels like to be them. So I've just been trying to support them to feel like they have autonomy and dignity in this disease. Just it's a horrible disease to witness, to experience. But we're just trying to find the best that we can right now. And the best is saying this disease is, it's got its grip on him. But he's saying, well, I'm going to go out having fun, and seeing what I can see, and traveling, and spending time with my family, and the people that I love.
I couldn't stand to see him suffer either. And when he made that choice, I said, OK. Then let's go. Let's pack up the van. We have our big 1995 conversion van called Fortuna. It's, like, teal with wood paneling and everything.
ELLEN FINN: Early this December, Elizabeth and her children set off for the cross-country road trip of a lifetime. They left Minnesota and hit Milwaukee, Chicago, South Bend, Philadelphia, New York City, and Charleston, South Carolina. That's where they are now. But soon, they'll take off for Miami to see G's first NFL game, then to New Orleans for Christmas, then to Texas to see the Alamo, to the Grand Canyon, all the way to southern California to loop back up to Minnesota.
ELIZABETH NAYLOR: We just had, like, tons of laughs, and listened to music, which is what we do.
ELLEN FINN: All of that travel and round-the-clock nurse care that she needs on the road is an enormous undertaking. Elizabeth recognizes that it's a little over the top, but it's what G wants. They've been calling the trip, G's last stand. Elizabeth's co-worker made a GoFundMe to support their road trip. Hundreds of donors, dozens of them who remain anonymous, have funded the trip.
ELIZABETH NAYLOR: I could have never imagined so many people coming together, people that we, of course, I've never met and will never meet. I feel like we have this sort of misfit family going that legit, we have a village of people that it's-- this world is so-- it's so ugly and so divisive right now. That's been one of the coolest things to see is that the people supporting him, like, nobody cares about politics and religion or all of the, like, ugliness in the world right now. All everybody cares about is helping this guy to have a really awesome end of his life.
I mean, the kids have been, like, looking at the GoFundMe. And they're, like, who are these people? I'm like, I have no idea. And how cool is it that strangers are supporting us is just wild to me. So much of it is understanding that there's a different way to live your life. There's a different way to die, that we don't do so great with death in this culture. And let's go experience life while we have it. None of us are getting out of here alive. But people seem to live their lives like they think that they're invincible.
As hard as it is to live this life knowing that my kids, they were most likely not going to outlive me, and some people would find that, like, it's so tragic. But there's this element of being able to really appreciate life. Literally, every single second that I have with them is a gift just like it is for all of us. Don't take anything for granted. Don't take relationships for granted. They're just, it's so short and so precious. Live it with intention and gratitude, because this is it.
[MUSIC PLAYING]
NINA MOINI: That was NPR producer Ellen Finn talking to Elizabeth Naylor from New Brighton.
After a difficult diagnosis, a mother is facing a heartbreaking loss and making the best of her remaining time with her son. MPR producer Ellen Finn talked to New Brighton's Elizabeth Naylor from the road on one last trip with her son, who is nicknamed, G.
[MUSIC PLAYING]
ELLEN FINN: 14 years ago, when Elizabeth's oldest son, G, was six years old, he started to get sick. His illness was a mystery for years, until doctors confirmed that G had a rare degenerative genetic condition called myotonic dystrophy. It causes organ dysfunction. And people born with the condition have short life expectancies. Elizabeth's younger children have also tested positive for the disease.
ELIZABETH NAYLOR: People, when you have kids, are like, oh, I just want my kids to be happy and healthy. And then when you realize kind of early on, like, the healthy piece is like, well, I want you to be as healthy as possible, knowing that you have an ongoing condition that is going to likely shorten your life. And then you, like, focus on the happiness piece.
ELLEN FINN: Elizabeth's daughter Gianna is G's younger sister by two years. She died when she was 16 from the same disease after months in and out of the hospital. It has been really hard for Elizabeth and her three other kids. When some of G's organs started to shut down earlier this year, his health care provider suggested he come spend time at the hospital. It was looking like his life was winding down.
ELIZABETH NAYLOR: After seeing how much pain she was in, and how uncomfortable she was, and just she was so limited. She was just stuck. He decided when the doctors presented him with this idea like, OK, it's time for you to get the IV nutrition, he said, no. And he said, I don't want to die in the hospital. I'm not going to do that. We had kind of a deal back then. I said, if you get to the point where you're sick of being sick and you don't want to be poked, and prodded, and tested, and sit in a hospital anymore, I'll support whatever your decisions are as painful as it is.
It's your body and it's your disease. And I don't know what it feels like to be them. So I've just been trying to support them to feel like they have autonomy and dignity in this disease. Just it's a horrible disease to witness, to experience. But we're just trying to find the best that we can right now. And the best is saying this disease is, it's got its grip on him. But he's saying, well, I'm going to go out having fun, and seeing what I can see, and traveling, and spending time with my family, and the people that I love.
I couldn't stand to see him suffer either. And when he made that choice, I said, OK. Then let's go. Let's pack up the van. We have our big 1995 conversion van called Fortuna. It's, like, teal with wood paneling and everything.
ELLEN FINN: Early this December, Elizabeth and her children set off for the cross-country road trip of a lifetime. They left Minnesota and hit Milwaukee, Chicago, South Bend, Philadelphia, New York City, and Charleston, South Carolina. That's where they are now. But soon, they'll take off for Miami to see G's first NFL game, then to New Orleans for Christmas, then to Texas to see the Alamo, to the Grand Canyon, all the way to southern California to loop back up to Minnesota.
ELIZABETH NAYLOR: We just had, like, tons of laughs, and listened to music, which is what we do.
ELLEN FINN: All of that travel and round-the-clock nurse care that she needs on the road is an enormous undertaking. Elizabeth recognizes that it's a little over the top, but it's what G wants. They've been calling the trip, G's last stand. Elizabeth's co-worker made a GoFundMe to support their road trip. Hundreds of donors, dozens of them who remain anonymous, have funded the trip.
ELIZABETH NAYLOR: I could have never imagined so many people coming together, people that we, of course, I've never met and will never meet. I feel like we have this sort of misfit family going that legit, we have a village of people that it's-- this world is so-- it's so ugly and so divisive right now. That's been one of the coolest things to see is that the people supporting him, like, nobody cares about politics and religion or all of the, like, ugliness in the world right now. All everybody cares about is helping this guy to have a really awesome end of his life.
I mean, the kids have been, like, looking at the GoFundMe. And they're, like, who are these people? I'm like, I have no idea. And how cool is it that strangers are supporting us is just wild to me. So much of it is understanding that there's a different way to live your life. There's a different way to die, that we don't do so great with death in this culture. And let's go experience life while we have it. None of us are getting out of here alive. But people seem to live their lives like they think that they're invincible.
As hard as it is to live this life knowing that my kids, they were most likely not going to outlive me, and some people would find that, like, it's so tragic. But there's this element of being able to really appreciate life. Literally, every single second that I have with them is a gift just like it is for all of us. Don't take anything for granted. Don't take relationships for granted. They're just, it's so short and so precious. Live it with intention and gratitude, because this is it.
[MUSIC PLAYING]
NINA MOINI: That was NPR producer Ellen Finn talking to Elizabeth Naylor from New Brighton.
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