EASTON —
The iPad charged and a spare blanket at the ready, Emma Hayes had a few more things to do before joining her mom on the couch for a movie, including connecting her mother’s dialysis machine, checking her blood sugar and making sure no tubes were tangled. These have become chores that Holly Hayes never thought her fifth-grader would be responsible for, but as the 37-year-old Easton woman awaits a kidney transplant, her daughter Emma’s help has become essential.
Most nights, Emma snuggles next to her mom with the iPad. Although they are together, Emma watches alone – her mother is blind, robbed of her vision by diabetes.
The disease has taken much more. Emma relaxes on the couch barefoot, but her mom dons thick, fur-lined winter boots to protect her legs – she has lost sensation in both.
Emma has become independent, Hayes said. At 5 feet, 2 inches tall, she doesn’t look like she’s 10 years old or act like it.
When she gets home from school, she does her homework like a typical fifth-grader. But she is wise beyond her years, her mother said. Hayes describes Emma as her “10-going-on-24” daughter. Emma likes to help Holly check her blood sugar. She hangs the fluids for her mother’s dialysis, making sure they’re the correct weight.
“She is an incredibly strong little girl,” her mother said with a smile on her face, her eyes glistening with tears.
Hayes was diagnosed with diabetes when she was 14. For more than a decade, the disease was manageable but when she was pregnant with Emma, her health began a steady decline.
“She has been the biggest blessing,” Hayes said of her daughter, “but pregnancy took a toll on my body.”
Hayes’ kidneys are failing. She undergoes at-home dialysis for a half hour, four times a day. She lost her sight completely six months ago. She has neuropathy in her legs, leaving her numb from the knees down.
“I rely a lot on smell and hearing,” Hayes said while sitting on the couch patting the family cat, Gracie.
The furniture in the house is sparse. There are just two couches in the living room and the TV stand in the corner.
The complications of Hayes’ disease have made it hard to get around and she spends her days at home, when she is not at the doctor’s office.
“It’s easy for me to get around at home because I know the house,” said Hayes, describing the feeling of knowing where a light switch is without having to see it. “I just do the best I can.”
Finding a kidney is a waiting game for Holly Hayes, but Emma has a few ideas of her own to speed up the process.
“She asked if she could give me hers,” Hayes said.
Emma, a fifth-grader at F.L. Olmsted School in Easton, also had ideas to hold a walk in honor of her mother and to put a sign in the front yard of their North Main Street home looking for kidney donors.
“She’s a sweet girl,” Hayes said.
Hayes’ mother, Beth Anderson, looks at her daughter with a sad smile.
“It’s hard,” she said.
Anderson lives in Whitman now but helps her daughter as often as she can.
After Hayes graduated from Oliver Ames High School in Easton, she worked as a technician at Good Samaritan Medical Center in Brockton, where her mother has worked in the records department for many years. Before her health began to decline, Hayes planned to go to nursing school.
“Emma pretty much grew up in the hospital,” said Hayes.
For most of Emma’s life, her mother and grandmother worked in the hospital. If Anderson worked in the mornings, Hayes would work at night so one of them could be with Emma. They would meet at the hospital to hand off Emma to the other.
Doctors and nurses, who see Emma now during her mother’s visits to the hospital, can’t believe how tall she has gotten and how fast she has grown up, Anderson said.
The family jokes that when Hayes has her all-too-common trips to the hospital, Emma is the mayor of the building, saying hello to nearly everyone she sees.
“It’s always, ‘Holly’s in the building. Everyone go check on her and say hi to Emma,’” said Anderson.
For Hayes, the Good Samaritan community has become a second family.
“They have taken such incredible care of me,” she said.
It has been frustrating for Hayes, someone used to being on the other side of the hospital business, to see her health decline.
“You do everything you’re supposed to and you try to take care of yourself,” she said. “But now, I can’t drive, I can’t see. You try not to focus on the things you can’t do and think, ‘I’m going to get a kidney and things will go back to a sense of normalcy.’”
The hope, which Hayes admittedly has a lot of, is that she will be able to find a live donor. If not, she will have to wait for a kidney to be harvested from someone who has died.
If Hayes can get a kidney, then she will be able to go on a list for a new pancreas, which would cure her of her diabetes.
The family is planning a “swabbing party” for the droves of family and friends who have volunteered to offer up one of their kidneys for Hayes.
Many of the friends Hayes made in her time working at the hospital have offered, including several local firefighters who Hayes met while working in the emergency room.
Organ donation is special to the Hayes family.
Hayes’ grandmother donated skin when she died several years ago and the family discovered it went to a burn victim.
“It is the ultimate gift of life,” Anderson said.
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