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terminal illness

Love Stories

After wife's terminal diagnosis, man builds laundry soap device so she can remain independent

A village from around the world showed up online to help him get it perfect.

Man builds device to help after wife's terminal diagnosis.

When a loved one is diagnosed with a terminal illness, it changes everything, including things you may not have yet thought about. As their disease progresses, they're able to do less and less for themselves, sometimes resulting in a spouse being the caregiver for their once healthy partner. But for the ill person, maintaining as much independence as possible for as long as possible can be rewarding.

Artur Zamber recently shared a heartfelt story about his attempt to keep his wife feeling as independent as possible after she was diagnosed with terminal bone cancer. The activity she needed assistance with is something that many take for granted: pouring laundry detergent into the cap in order to wash clothes.

laundry; bone cancer; love story; man builds device; kindness A washing machine. Photo by Annie Spratt on Unsplash

"It was the detergent bottle. She couldn’t press the button with both hands anymore. Bone cancer made sure of that. And when I reached over to help her, she flinched. Not because of pain. Because of pride," Zamber writes in his post. "We’ve always been equals, me and her. Forty years of marriage and we’ve never once said 'that’s not my job.' She grew the tomatoes. I built the trellis. She crocheted the blankets. I chopped the wood. We met each other in the middle every single time. But disease…It doesn’t meet you halfway."

It was this realization that caused Zamber to figure out a way to make the laundry soap easier for his wife to dispense on her own. He got some wood and spent hours trying to design a contraption that would allow the soap to be dispensed with one hand As he worked, he quickly realized he may need some assistance. Zamber posted his sketch and explained what he was trying to accomplish in the Tedooo app, an app for hobbyists and crafters to share ideas or sell things. Soon after the desperate husband's initial post, a village of crafters from around the world appeared.

laundry; bone cancer; love story; man builds device; kindness Hobby Lobby Community - Coupons, Finds and Crafters on the Tedooo app | I didn’t build this because I’m handy | Facebookwww.facebook.com

"I posted a rough sketch. Said I was trying to make something for my wife. Didn’t expect much. But my inbox lit up like Christmas. Makers from everywhere Oregon, Croatia, Argentina sent me diagrams, photos, even voice notes walking me through it like we were neighbors," he says.

After working through the design with others, Zamber created a box that holds the laundry soap and tilts forward so his wife can pour it with one hand. The man is adamant he was not trying to "help" his wife or make something "for her," but was instead making something with her in mind so she didn't feel like she needed him to do everything for her.

laundry; bone cancer; love story; man builds device; kindness Man kissing woman on check beside body of water. Photo by Esther Ann on Unsplash

"We don’t always get to fix what’s broken. But sometimes, we get to honor it. And that’s enough," Zamber shares.

People were moved by the post on social media with one person writing in part, "This is so beautiful. The detergent holder and everything it represents. Your story is resonating with me today in a very unique way."

"Oh my goodness, what sweet, respectful, strong Beautiful Love. Praying for your wife, and for you, seems she is in very loving hands, what a thoughtful way to honor her independence, and help at the same time. What sweet love," another said.

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laundry

Heroes

He plays music to roaring crowds, but his best shows are for a much different audience.

Freddie Fuller is a country and folk music singer-songwriter who has entertained audiences at venues in and around Austin, Texas. He has recorded two albums, created a one-man show on the history of the Texas cowboy, and even performed for troops overseas. But some of the most profound performances of his life have also been some of the smallest, quietest shows.

Freddie performs personalized, acoustic concerts for people who are dying.

For the last four years, Freddie has worked with a small nonprofit called Swan Songs to bring the gift of music to people facing terminal diagnoses. Freddie and other Swan Songs musicians have played over 500 intimate concerts as a celebration of life for people nearing death, as well as their loved ones.

Why music? The answer is simple for Freddie: "Music is one of the few things that we as humans will allow to touch us in the deepest spots in our hearts."

In the United States, death is usually something that stays out of sight, out of mind.

Our conversations about the end of life are steeped in euphemism, and the actual process of dying seems to happen behind a veil — usually in a hospital or nursing home facility, rarely at home.

But treating death as taboo isn’t a recipe for having a "good death." Informed, nuanced conversations about the end of life can be helpful for both demystifying death and helping families navigate their grief. And a growing chorus led by health care professionals and social workers is calling for change in how we deal with death.

Swan Songs and its musicians are quite literally part of that chorus.

Since 2005, the nonprofit has fielded requests from the loved ones and caretakers of people with terminal illnesses and cultivated a community of local musicians who can help fulfill the recipient’s musical wishes.

When Freddie joined Swan Songs, he had already had the unique experience of playing music for his mother, who had cancer, as she approached the end of her life.

"I remember getting in bed with her in her hospital bed with a guitar, and I started singing to her," Freddie said. Years later, before his father passed away, he did the same thing — this time, with his five children in the room to share the experience.

The sense of hearing, Freddie noted, is usually the last sense to deteriorate at the end of life. So even if the recipient of his performance seems unable to respond or connect, they may still be hearing the music.

A recent Swan Songs experience reaffirmed Freddie’s believe that music has connecting power.

Another Swan Songs musician, Pam, had asked Freddie to perform a particularly special concert — one for her own dying father. When Freddie arrived at the hospital, about an hour outside of Austin, he found that Pam’s father was comatose and close to death. He gathered at his bedside with Pam and her sister and began to play.

"I played for 45 minutes or so," he says. "I played the last song, sang the last note, and hit the last guitar chord, and he took his last breath. We sat there very reverently and drank up the power of that moment."

That moment spoke to the essence of Swan Songs, Freddie says. Surrounded by music and love, his recipient passed on.

Freddie put his guitar back in his case and stepped into another role: that of a comforter and a friend. It was a short, soothing moment in time during a life landmark that is often cloaked in fear and despair.

That’s what Swan Songs is all about: bringing joy, connection, and peace to death, one of the most human experiences of all.

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Italy explodes in song as the entire country lives under coronavius quarantine - Upworthy ›

Richard Pringle, a dad from England, thought he'd have more time with his son, Hughie.

Hughie had a serious brain condition his doctors considered manageable. He was supposed to be fine.

Tragically, the odds struck for the worst and Hughie, 3 years old at the time, suffered a brain hemorrhage last year that he did not survive.

It's a heartbreaking story, but Hughie's memory lives on. Pringle says he's "realised more than ever how precious life is."

He wanted to help other parents appreciate the fleeting and fragile nature of life. So Pringle came up with 10 things he's learned since his son passed.

"I was actually putting my little girl to bed one night and lying with her. It was then I wrote it," he says. "All things I've been thinking about and it just flowed."

The list reads as fond memories of a short life lived to the fullest. Yet it also serves as a powerful wake up call for any of us who might be missing out on the little moments that matter most.

"You can never ever kiss and love too much," Pringle writes. "You always have time. Stop what you're doing and play, even if it's just for a minute. Nothing's that important that it can't wait."

"Make boring things fun," he adds. "Be silly, tell jokes, laugh, smile, and enjoy yourselves. They're only chores if you treat them like that. Life is too short not to have fun."

You can read the full list in his original post:

❤️❤️The 10 Most Important Things I've Learnt Since Losing My Son 🙏1. You can never ever kiss and love too much. 2....
Posted by Richard Pringle on Wednesday, August 23, 2017

The post went viral and struck a nerve with parents everywhere who saw themselves in Pringle's words.

We're all tired from work, stressed from thinking about bills, and constantly scanning the house for what needs to be cleaned or fixed up. It becomes so easy to miss what's right in front of us — moments with our kids that can never be recreated. All the other stuff? It can wait.

It's not just for parents. Everyone could stand to stop and smell the roses, so to speak, a little more often.

"There's beauty in the simple things," Pringle says. "Things that often within our busy destructed lives go unnoticed. There's real beauty in simplicity and I feel we all need to realize this."

Popular

The incredible story of baby Eva Grace: the superhero who never lived.

My wife Keri and I went in for the standard 19-week anatomy scan of our second child. As a parent, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more.

In our case, our daughter was diagnosed with a rare birth defect called anencephaly — some 3 in 10,000 pregnancies rare. The phrase our doctor used in explaining it was "incompatible with life," which looks as terrible in words as it sounds. The child fails to develop the frontal lobe of the brain or the top of their skull. The chance of survival is 0%. We sat in a doctor’s office, five months before our daughter was to be born, knowing she would die.

The options weren’t great. There was (a) inducing early, which in effect was terminating the pregnancy or (b) continuing the pregnancy to full term.

Within a minute or so of finding out, Keri asked if we could donate the baby’s organs if we went to full term. It was on her heart and mind, but we left the doctor and still spent the next 48 hours deciding what we were going to do. It was excruciating. We considered terminating. We had to. Were we capable of taking on the weight of the 20 weeks ahead? In our minds, we were intentionally taking on the loss of a child, rather than the loss of a pregnancy. And, yes, there is a difference.

We decided to continue, and we chose the name Eva for our girl, which means "giver of life."

The mission was simple: get Eva to full term, welcome her into this world to die, and let her give the gift of life to some other hurting family.

It was a practical approach, with an objective for an already settled ending point. We met with an organ procurement organization called LifeShare of Oklahoma and found out we’d be the eighth family in the state to donate the organs of an infant.

There wasn’t much of a precedent or process in place because, until only recently, most parents of anencephalic babies didn’t know it was an option. There’s this weird gray area involved because, even without a brain, these babies can’t be declared brain dead. Her heart would need to stop beating, leaving a finite window of, let’s call it, "opportunity," to recover her kidneys, liver, and maybe pancreas and heart valves. We asked about other things, like her eyes or corneas, but LifeShare told us they’d never done that before, even with an adult.

All photos by Mitzi Aylor/Alyor Photography. Used with the permission of Royce Young.

Part of the difficulty of the decision to carry on was the physical pregnancy and the mental burden of carrying a baby for 20 more weeks knowing she would die. The kicks and punches to Keri’s bladder served as a constant reminder of what was inside. (Yes, Eva kicked like any other baby; her brainstem was complete, which is what controls basic motor functions. I know, we had a hard time wrapping our minds around it too.) She feared people asking what she was having or the due date or if the nursery was ready.

What we unexpectedly found, though, was joy in the pregnancy. We happily talked about our sweet Eva, and day by day, our love for her grew. We got excited to be her parents.

I think a big part of that was connected to the decision we made to continue on, which was empowering. She had a name, an identity, and a purpose. The idea of choice in pregnancy is a complicated one, and one I kind of want to avoid here. Wherever you fall, just know, we were empowered by our decision, our responsibility to be Eva’s mom and dad for as long as we could. We went from seeing the pregnancy as a vehicle to help others to looking forward to holding her, kissing her, telling her about her brother, and being her parents.

The time we’d have was completely unknown, with it ranging anywhere from five seconds to five minutes to five hours to, in some more optimistic estimates, five days.

We decided to have a planned C-section. We wanted to maximize our chances of seeing Eva alive and be able to control as many variables as possible.

There wouldn’t be any surprise labor in the middle of the night. We could have our first child Harrison there to meet his sister and grandparents ready to hold their granddaughter even if she was only alive for an hour or so. We wanted to do what was best for our girl. That’s what parents do.

As the date neared, the meetings and appointments cranked up. We had what everyone called the "Big Meeting," a gathering at Baptist Hospital of about 30 people that included multiple people from LifeShare, NICU nurses and doctors, neonatologists, and other "Very Important Hospital People." We were the first infant organ donor ever at Baptist, and they were developing a protocol on the fly. There were plans and contingency plans and contingency plans for the contingency plans.

The process was going to be delicate, and to be frank, it seemed increasingly unlikely that it would work. There were a lot of things that were going to need to go just right, even with the intricate plans that were being put in place. It was made clear to us over and over and over again how if Eva’s kidneys or liver didn’t go directly for transplant, they would go to research, and infant organ research is incredibly valuable.

But I wanted a tangible outcome. I wanted to be able to meet and hug and shake the hand of the person my daughter saved.

I couldn’t dream about what my daughter would grow up to be, so I fantasized about the difference she could make.

What if the person who got her kidneys became president? What if her liver went to a little boy and he goes on to win the Heisman Trophy? I was writing the "30 for 30" script in my mind every night as I went to sleep. It was something to hold onto; it was the kind of hope I wrapped up with both arms. Research was nothing more than a fail-safe to me, a Plan B that I didn’t want any part of.

There were some concerns from the hospital's ethics team about Eva and our plans. As I explained to them — and to anyone else out there who has this idea that we grew a daughter just for her organs — Eva was a terminal child. And as her parents, we elected to make her an organ donor. That’s it. She would be born, live an indefinite amount of time, and then we were choosing to donate her organs.

Then suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world and preparing to say goodbye to her.

I planned on sitting down that day to write Eva a letter, like I did before Harrison was born to give him on his 18th birthday. She’d never read it, but I was going to read it to her. Keri didn’t feel Eva move much that morning, but we both brushed it off and went to lunch. We came home, put Harrison down for a nap, and Keri sat down in her favorite spot and prodded Eva to move. She wouldn’t.

We started to worry. Keri got up, walked around, drank cold water, ate some sugary stuff. She sat back down and waited. Maybe that was something? We decided to go to the hospital. We held on to hope that we were just being overly anxious and didn’t take any bags.

We arrived, and a nurse looked for a heartbeat on the doppler: nothing. Not unusual; it was sometimes hard to find because of the extra fluid. They brought in a bedside ultrasound machine and looked. It seemed that maybe there was a flicker of cardiac activity. They told us to get ready to rush in for a C-section.

I just remember repeating, "I’m not ready I’m not ready I’m not ready I’m not ready." I was supposed to have two more weeks. What about the plan? What about Harrison? What about Eva’s aunts and uncles and grandparents? What if they couldn’t make it in time? What about her letter?

They brought in a better ultrasound machine. Keri and I had seen enough ultrasounds to immediately know: There was no heartbeat. Eva was gone before we ever got to meet her. The brain controls steady heart functions, and Eva’s finally gave out.

Keri rolled onto her side and put both hands over her face and let out one of those raw, visceral sobbing bursts. I stood silently shaking my head.

We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for research, our fail-safe. We felt cheated.

The word I still have circling in my head is disappointment. That doesn’t really do it justice because it’s profound disappointment. The kind of disappointment that will sneak up on me at different times, like when I’m mowing the yard or rocking Harrison or driving to a game.

Since there was no reason to control variables anymore, the doctors induced Keri into labor. The rest of Sunday and into Monday morning were the darkest, most painful hours of our lives. We had previously come to terms with the outcome and had almost found a joy in the purpose of our daughter’s life. We had looked forward to meeting her and loving her. We knew we’d hurt from her loss, but there was hope in the difference she was making. We had heard from recipients of organ donation that were so encouraging and uplifting.

But the deal got altered. It felt like we were letting everyone down. (I know how ridiculous that sounds.) I felt embarrassed because all that positivity about saving lives wasn’t happening now. (I know how ridiculous that sounds.)

On top of it all, the ultimate kick in the gut: We wouldn’t even see her alive. I struggled with the idea of Eva’s existence and her humanity all along, about whether a terminal diagnosis made her dead already. I clung to knowing her humanity would be validated to me when I saw her as a living, breathing human being. I wanted to watch her die because that would mean I got to watch her live. I longed for just five minutes with her — heck, five seconds with her. All of that practical stuff about organ donation was irrelevant to me now. I just wanted to hold my baby girl and see her chest move up and down. I just wanted to be her daddy, if only for a few seconds.

Eva came surprisingly quick on Monday. Keri forced me to go get some lunch — a sad, lonely lunch featuring me taking bites of chicken fingers in between sobs — and I got back to the hospital around noon. Keri sat up and felt some pain. Then she felt another shot of pain ring through her body. Our photographer had just arrived and was setting up. Keri started to panic and asked for nurses to come in. They checked her, and it was time to have a baby. I still wasn’t ready.

At 12:20 we called our family and told them to hurry.

At 12:30, our doctor, Dr. Pinard, arrived.

At 12:33 and 12:35, Laurie from LifeShare tried calling Keri.

At 12:37, Eva Grace Young was born. I cut her umbilical cord at 12:38.

My phone rang at 12:40 and 12:41, and then a text came. It was Laurie from LifeShare. "Hey Royce, it’s Laurie . Will you give me a call when you get a chance? I think I have some good news for you."

Keri and I held each other and cried as the nurses cleaned Eva, and Dr. Pinard called LifeShare for us.

Then, she walked up to the foot of the bed.

"I’m on the phone with LifeShare," Dr. Pinard said, a smile cracking through on her face. "They have a recipient for Eva’s eyes."

It’s weird to say that during probably the worst experience of my life was also maybe the best moment of my life, but I think it was the best moment of my life.

The timing of it all is just something I can’t explain. It wasn’t what we planned or hoped for, but it was everything we needed in that moment. I buried my head in my arms and sobbed harder than I ever have. Keri put her hands over her face and did the same. Happy tears.

This was our reaction when Dr. Pinard told us about Eva’s eyes.

As the nurses handed her to us for the first time, much of the dread and fear was lifted from us and replaced with hope and joy again. Here comes Eva Grace Young, the superhero she was always meant to be.

None of it went as we planned. We’re trying to rest on knowing we did the best we could. We always said we wanted to limit our regret, and I think in 20 years or so, as we reflect on this, there’s not much we’d change.

We’re proud to be Eva’s parents. We’re thrilled with the impact she’s made. People from around the world have sent us messages telling us they’ve signed up to be organ donors because of Eva.

Eva’s the first ever — not baby, but person — in the state of Oklahoma to donate a whole eye, and she donated two.

Because of her, LifeShare has made connections in other states to set up eye transplants for the future. They have an infant organ donation plan they now are working with sharing with other organ procurement organizations in Colorado and Texas. They call it the Eva Protocol.

I keep thinking about looking into her eyes some day, but more than anything, I think about her eyes seeing her mom, dad, and brother.

We always wondered things about Eva, like what color her hair would be, if she’d have Harrison’s nose, if she’d have dimples like her mama, or what color her eyes would be. In the time we spent with her, one eye was just a little bit open, and I fought the temptation to peek. I can’t ever hold my daughter again. I can’t ever talk to her or hear her giggle. But I can dream about looking into her eyes for the first time one day and finding out what color they are.

This story first appeared on the author's Medium and is reprinted here with permission.

My Dad suffered from Parkinson’s, a disease that methodically and steadily destroyed his body and mind — and ultimately took his life.

During my dad's last remaining days in hospice care, my four siblings, mother, and I huddled around him and shared, amidst laughter and tears, stories about the man he was, the lessons he taught us through his own successes and failures, and the tremendous impact he had on those around him. Dad’s life was far from perfect, and he had had a rough last handful of years. Our time together helped all of us remember who Dad was when we was in his prime — when he was our hero.

Dad, while nonverbal, was alert and attuned to what was happening around him. Occasionally one of us would look over and find a trace of a smile on his face, an observation we would point out to him and the others. Dad was clearly enjoying time with his entire family for the first time in over 20 years.

Throughout his closing days, Dad heard anecdote after anecdote about the legacy he was about to leave behind.

People shared the memories he would leave us with. Here are the lessons he left behind for me and my family:

1. Dream big.

Dad grew up in a small, middle-class Irish enclave in Queens, New York. His father would periodically take him to wealthy neighborhoods to walk around and show him what was possible for him when he got older. The message from his father was that this could all be his. To Dad, it was impossible to dream too big. He wanted the world for himself and his kids — and fully expected us all to get it. Dad pushed us to imagine the unachievable and race like hell to achieve it. When I told him I was going to write a business book, he told me to prepare for the New York Times Bestseller list.

2. Live big.

Dad packed his life with rich and full experiences at every turn. If Dad wanted to have something, he got it. If he wanted to do something, he did it. The moment he had two nickels to rub together, he spent them. Dad lived big.

“You only go around once,” was something Dad frequently said to justify a risky business play or explain away a lavish purchase. It seemed to serve as a reminder to him (and us) that life could be cut unexpectedly short and that it would be wise to get big experiences in while he (we) could.

3. Be present.

Dad spent most of our upbringing racing around the country consulting with and training business leaders. The moment he was done working, he would race back home just in time to coach a basketball game, have dinner with the family, or play a pickup game in the backyard. He wasn’t vacant or lost in his work when he was with us. When he was with us, he was fully with us.

Long after we went to bed, Dad would return to work, staying up until the wee hours of the morning to get a proposal out or prepare for the following day’s events. He threw himself into whatever he was doing and made you feel as if you were the center of his universe when you were with him. He was magnetic. Being present undoubtedly added to his magnetism.

4. Pick your moments. (But when they appear, pounce.)

Dad rarely made a move that didn’t have a purpose behind it. He had this remarkable skill of letting the insignificant things go and dealing head-on with the things that really mattered.

5. Be interested, not interesting.

In his final days, what struck us most was the overwhelming number of personal stories from old friends and extended family about the impact Dad had on their lives. Dad was fascinated by people, and he had an art for drawing out their stories. When Dad was at his best, he was comfortably and confidently Dad. And in that comfort and confidence, he could let go of his own ego and pull out the complexities of the people he was with, instead of sharing his own with others. His sincere interest in others drew them closer to him and left them convinced they were in the presence of someone endlessly interesting.

My siblings and I were with Dad when he passed. We were sad, of course.

But there was a positive feeling in the room as well — each of us left Dad that night feeling closer to him and each other than we had in a very long time. We left armed and more cognizant of the lessons he had equipped us with.

After living through what these kids have, it's refreshing to see the smiles on their faces.

True

Sometimes, kids who are medically fragile or facing hurdles like cancer would like to just get away from it all, even if just for a little slice of time.

Enter Dream Drives for Kids, a nonprofit that began in Portland, Oregon, and is expanding to other parts of the country.

What do they do?

First, go back to a time when you got to ride in a fancy car — say, a convertible, or something really sporty — for the first time.

Do you remember that feeling? It can be an amusement park ride of sorts, and it's one of those things that becomes a great memory throughout life.

That's the idea behind these folks. Giving kids with severe illnesses a chance to ride in these adult toys is what they do. The children get to tour the garage, pick a car to ride in, and then go out for a spin.

As the narrator of the video below (and one of the founders of the organization) says, “It's like the kids we work with are going through a nightmare, and we're trying to offer them a dream."

This boy has Otopalatodigital syndrome and has had multiple surgeries. Just look at the joy on his face:

GIFs from ILikeGiving.com/Vimeo.

Or this little girl, who valiantly battled leukemia:

“We've seen kids who've come through this garage who've been dying. We've met with kids who have since died. And seeing the joy in their eyes, and the joy in their parents' faces, when they're not thinking about being sick ... is an incredible feeling."

Watch the video from Dream Drives for Kids.

terminal illness

After wife's terminal diagnosis, man builds laundry soap device so she can remain independent

A village from around the world showed up online to help him get it perfect.

He plays music to roaring crowds, but his best shows are for a much different audience.

Freddie performs personalized, acoustic concerts for people who are dying.

In the United States, death is usually something that stays out of sight, out of mind.

Swan Songs and its musicians are quite literally part of that chorus.

When Freddie joined Swan Songs, he had already had the unique experience of playing music for his mother, who had cancer, as she approached the end of her life.

A recent Swan Songs experience reaffirmed Freddie’s believe that music has connecting power.

That’s what Swan Songs is all about: bringing joy, connection, and peace to death, one of the most human experiences of all.

A dad's heartbreaking list of things he learned after his son passed is a must-read.

Richard Pringle, a dad from England, thought he'd have more time with his son, Hughie.

He wanted to help other parents appreciate the fleeting and fragile nature of life. So Pringle came up with 10 things he's learned since his son passed.

The post went viral and struck a nerve with parents everywhere who saw themselves in Pringle's words.

The incredible story of baby Eva Grace: the superhero who never lived.

My wife Keri and I went in for the standard 19-week anatomy scan of our second child. As a parent, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more.

The mission was simple: get Eva to full term, welcome her into this world to die, and let her give the gift of life to some other hurting family.

What we unexpectedly found, though, was joy in the pregnancy. We happily talked about our sweet Eva, and day by day, our love for her grew. We got excited to be her parents.

We decided to have a planned C-section. We wanted to maximize our chances of seeing Eva alive and be able to control as many variables as possible.

I couldn’t dream about what my daughter would grow up to be, so I fantasized about the difference she could make.

Then suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world and preparing to say goodbye to her.

We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for research, our fail-safe. We felt cheated.

My phone rang at 12:40 and 12:41, and then a text came. It was Laurie from LifeShare. "Hey Royce, it’s Laurie . Will you give me a call when you get a chance? I think I have some good news for you."

As the nurses handed her to us for the first time, much of the dread and fear was lifted from us and replaced with hope and joy again. Here comes Eva Grace Young, the superhero she was always meant to be.

Eva’s the first ever — not baby, but person — in the state of Oklahoma to donate a whole eye, and she donated two.

5 surprising pieces of life advice my dad left me before he died.

My Dad suffered from Parkinson’s, a disease that methodically and steadily destroyed his body and mind — and ultimately took his life.

Throughout his closing days, Dad heard anecdote after anecdote about the legacy he was about to leave behind.

After living through what these kids have, it's refreshing to see the smiles on their faces.

Sometimes, kids who are medically fragile or facing hurdles like cancer would like to just get away from it all, even if just for a little slice of time.

First, go back to a time when you got to ride in a fancy car — say, a convertible, or something really sporty — for the first time.

This boy has Otopalatodigital syndrome and has had multiple surgeries. Just look at the joy on his face:

Or this little girl, who valiantly battled leukemia:

I Googled to see if Maria Von Trapp remarried after Georg died. The result was horrifying.

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terminal illness

A village from around the world showed up online to help him get it perfect.

Freddie performs personalized, acoustic concerts for people who are dying.

In the United States, death is usually something that stays out of sight, out of mind.

Swan Songs and its musicians are quite literally part of that chorus.

When Freddie joined Swan Songs, he had already had the unique experience of playing music for his mother, who had cancer, as she approached the end of her life.

A recent Swan Songs experience reaffirmed Freddie’s believe that music has connecting power.

That’s what Swan Songs is all about: bringing joy, connection, and peace to death, one of the most human experiences of all.

Richard Pringle, a dad from England, thought he'd have more time with his son, Hughie.

He wanted to help other parents appreciate the fleeting and fragile nature of life. So Pringle came up with 10 things he's learned since his son passed.

The post went viral and struck a nerve with parents everywhere who saw themselves in Pringle's words.

My wife Keri and I went in for the standard 19-week anatomy scan of our second child. As a parent, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more.

The mission was simple: get Eva to full term, welcome her into this world to die, and let her give the gift of life to some other hurting family.

What we unexpectedly found, though, was joy in the pregnancy. We happily talked about our sweet Eva, and day by day, our love for her grew. We got excited to be her parents.

We decided to have a planned C-section. We wanted to maximize our chances of seeing Eva alive and be able to control as many variables as possible.

I couldn’t dream about what my daughter would grow up to be, so I fantasized about the difference she could make.

Then suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world and preparing to say goodbye to her.

We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for research, our fail-safe. We felt cheated.

My phone rang at 12:40 and 12:41, and then a text came. It was Laurie from LifeShare. "Hey Royce, it’s Laurie . Will you give me a call when you get a chance? I think I have some good news for you."

As the nurses handed her to us for the first time, much of the dread and fear was lifted from us and replaced with hope and joy again. Here comes Eva Grace Young, the superhero she was always meant to be.

Eva’s the first ever — not baby, but person — in the state of Oklahoma to donate a whole eye, and she donated two.

My Dad suffered from Parkinson’s, a disease that methodically and steadily destroyed his body and mind — and ultimately took his life.

Throughout his closing days, Dad heard anecdote after anecdote about the legacy he was about to leave behind.

Sometimes, kids who are medically fragile or facing hurdles like cancer would like to just get away from it all, even if just for a little slice of time.

First, go back to a time when you got to ride in a fancy car — say, a convertible, or something really sporty — for the first time.

This boy has Otopalatodigital syndrome and has had multiple surgeries. Just look at the joy on his face:

Or this little girl, who valiantly battled leukemia: