Mom, 26, Dies Days After Choosing to Enter Hospice Following 13 Years of Living with Kidney Failure (Exclusive)
Though she left behind a 4-year-old daughter, Sara Long told PEOPLE her feelings about death were "more certain" than they'd ever been when she started end-of-life care
Sara Long/Facebook
Sara Long with her daughter, Riley Jean.“I think a lot of people spend a lot of time thinking about what it means to have a good life. And don't get me wrong, I did that too,” Sara Long, 26, told PEOPLE over the phone just shy of a week before she died at the hospice facility into which she had just recently moved.
Her decision to begin end-of-life care was the result of an unrelenting fight against the kidney failure that claimed Long's life since she was only 13 years old. After what felt like nonstop hospitalizations, operations and dialysis sessions for over a decade, she decided to transition to hospice care in Richmond Hill, Ga. because “having a good death is really important,” she explained before her death on Dec. 12.
Long said she’s spent “the last two or three years” deliberating about her idea of a “good death.” She decided that it wasn’t just about how she would experience these last expected few weeks of her life in hospice. What Long really wanted was to be surrounded by her most precious loved ones — including her husband Justin, 32, and their 4-year-old daughter Riley Jean — but she didn't want them to watch her die while intubated and attached to hospital equipment as she was half of her life.
“I just feel like if I pushed it any harder, then I was going to get to a place where it was going to be outside of my control,” said the mom of one. “I was going to wind up dying in a hospital alone, afraid, full of tubes, scared. My daughter wouldn't be able to be part of the process, and it would just be really lonely, and that's really not the goal.”
Detached from the familiar yet foreign medical equipment, Long told PEOPLE she was freed from fear knowing she would only survive another couple of weeks in hospice. (She died with a week less than anticipated.) Though the end of her life was more certain there, it was easier to process that fate than anticipate the type of “really intense” clinical intervention doctors described as the only way to help Long survive.
“It was really just not something that I was interested in living like or pursuing … [I would be] just reduced to a shell,” Long said, reflecting on the course of treatment lined up had she not left the hospital. “I didn't want to do that, and so that's kind of how I made that decision ultimately.”
She continued, “And it's time, you know? And I've come to peace with that. So here I am.”
Her tranquil outlook on death was the result of 13 years of dealing with kidney failure, but Long’s illness ebbed and flowed throughout her life. “It's like the water,” she reflected to PEOPLE. “It comes and goes, whatever, but it's always been present.”
Though organ failure claimed so much of her life, Long was also a successful businesswoman, as Justin noted in the GoFundMe page he opened to “help cover Celebration of Life costs, cremation, trust fund account for our daughter” and other opportunities for donation. Long said that her husband’s assessment is accurate; the duo owned a detailing business together, and prior to that endeavor, she ran a postpartum doula service called Riley's Helpers.
“We'd come in when women had babies or sometimes afterwards, because I think everybody needs a hand once in a while, and we'd help people get their houses in order or get organized,” Long recalled of her work aiding fellow moms. “We'd help them clean or cook or take care of the kids, kind of all those things that are hard to do when you're a mom and you don't have a village.”
More magic happened during periods when Long’s illness was at bay, like her meeting Justin. She was only 19 at the time, recovering from her first bout of sepsis that left her intubated in the hospital for seven days, plus she had recently broken up with an ex-boyfriend. Long’s little brother came to visit with a promising idea for turning her low point in a new direction: he made her an account on Tinder.
Sara Long/Facebook
Sara Long with her daughter, Riley Jean.“He was like, ‘Well, now that it looks like you're going to survive this, you know what we should do? We should find you a boyfriend,’” Long remembered her brother saying. “I was like, ‘All right, I guess let's do it.’ And so we went and found me a boyfriend.”
She was still sick from the sepsis’ lasting effects on her first date with Justin after they both swiped right on the dating app. She was still in the harder stages of recovery and couldn’t walk or speak very well.
“He showed up and he had two get-well cards, because he wasn't sure if he should be funny or sweet,” Long said of her first meeting with Justin. “He brought flowers and he was just so kind and so genuine. And it was just kind of an instant connection, so to speak.”
They then sat in Long’s new apartment and talked until 3 a.m. As they said their goodbyes, Justin surprised her by posing an unusual request for a first date: he asked to recognize her books, claiming it was something that was “really bothering me and they seem really important to you,” Long recalled him saying.
“We sat there and we spoke for another three or four hours about all of my books in my collection and what they meant to me and who my favorite characters were,” added Long, who has been married to Justin for seven years.
Long admitted her husband “really struggled at first” after she made the decision to seek out hospice care, but he quickly adjusted to being “amazingly supportive and so kind.”
“He's just trying to make sure he really spends a lot of time with me and just really make sure that he loves on me,” she told PEOPLE. “And I think that's really sweet and really important. He's doing amazingly well given everything.”
Despite her young age, their daughter Riley Jean handled her mother's last days with strength as well, said Long. “I've been sick for such a long time that it's a very normal part of our lives at this point,” she added. “She'll know if mommy's having a sick day, then maybe we play on the floor instead of being up and chasing each other around or doing something like that.”
Riley was “very flexible and very understanding and very kind” during that time, Long noted. As have her other family members, many of whom were “doing their best” to be there with Long, whether they were flying and driving or driving from far away. Those who couldn't get to Long “right away” were “calling every day” to show their love.
It was indeed the time to show it, and as heartbreaking as that sentiment is, Long welcomed their affection as a complement to the peace she found in her new, final chapter. In the face of dying, she said she was “calm” and “confident.”
“I've had a lot of uncertainty at various points in my life, and this isn't like that. This is more concrete. This is more certain … It's not as hard to deal with,” Long shared with PEOPLE. “I know in my heart that I'm making the right choice with what I'm choosing to do, and so that's very easy as well.”
As she prepared to leave behind her family, the doting parent looked to Riley Jean to maintain the memory of their mother-daughter bond.
“I hope she remembers that I loved her more than anything, that I thought she was the absolute bee's knees and the best kid in the world,” Long said. “And that I did everything I could to make sure that she had a solid foundation and that she got to grow up to be a really good person and get to be the person that she wanted to be more than anything else.”
Read the original article on People
