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solitary vigil, a story of unending love

Noelia Ferreira, like hundreds of Massachusetts parents, cares for her medically fragile daughter, Abi, at home. But MassHealth has let reimbursements languish, making it nearly impossible to find a skilled nurse to help her. Abi needs nearly round the clock medical care that Noelia is forced to do herself. “It puts Abi at risk and it’s killing me.” Noelia says. Photos by Suzanne Kreiter/Globe staff.

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solitary vigil, a story of unending love

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  1. A solitary vigil, a song of love

  2. It’s been more than 150 days since Noelia has had skilled nursing help. She carries her 78-pound daughter up the stairs to begin the evening’s bedtime rituals. (Suzanne Kreiter/Globe Staff)

  3. Noelia Ferreira kisses her daughter’s hand after a session of stretching her limbs to help her muscle tone. <BR class=br>(Suzanne Kreiter/Globe staff)

  4. At 6:30 in the morning, Noelia wakes up her daughter, changes her diaper, and gives her a sponge bath.<BR class=br>(Suzanne Kreiter/Globe staff)

  5. Finding a nurse to help even a few nights a week is nearly impossible. The rate Abi’s insurance can pay them is low. The last nurse left them months ago.<BR class=br>(Suzanne Kreiter/Globe staff)

  6. After carrying Abi down the stairs to the kitchen, Noelia brushes Abi’s teeth, fixes her hair, and delivers medications into her feeding tube. (Suzanne Kreiter/Globe staff)

  7. For Noelia, the cycle feels endless. Even when she can hire a nurse, they never last long.They leave the house in the morning to get on the wheelchair-accessible van that takes Abi to school.<BR class=br>(Suzanne Kreiter/Globe staff)

  8. With a Jack Johnson song playing in the background, Noelia takes a break from stretching and massaging Abi’s muscles to talk to Abi about the upcoming concert.<BR class=br>(Suzanne Kreiter/Globe staff)

  9. The night before the Jack Johnson concert, Noelia and her 17-year-old daughter Katelyn try to help Abi make a sign for the concert, but Abi is suffering stomach pain and discomfort (Suzanne Kreiter/Globe staff)

  10. When Abi’s stomach pain and a second seizure within two hours prove too much for the task, Noelia promises to finish the sign for the concert for her daughter.<BR class=br>(Suzanne Kreiter/Globe staff)

  11. Noelia and the family’s dog Coconut comfort Abi after a difficult evening.<BR class=br>(Suzanne Kreiter/Globe staff)

  12. After helping her daughter through her stomach pain and seizures, Noelia conducts the night’s most stressful task --- the monthly replacement of Abi’s feeding tube. (Suzanne Kreiter/Globe staff)

  13. Noelia has never considered sending Abi away to an institution. She believes state officials haven’t done more to change reimbursement rates because parents like her will keep caring for their children even without a nurse.<BR class=br>Noelia kisses Abi goodnight.<BR class=br>(Suzanne Kreiter/Globe staff)

  14. Before Noelia can go to sleep, she carries up Abi’s last meal of the day to attach to her feeding tube.<BR class=br>(Suzanne Kreiter/Globe staff)

  15. The house is quiet and dark when Abi gets her last meal through her feeding tube at 8:30 p.m.<BR class=br>(Suzanne Kreiter/Globe staff)

  16. After a hard night of seizures, belly pain,, and the unsettling sight of blood during the changing of Abi’s feeding tube, Noelia collects herself before finishing her daughter’s sign. (Suzanne Kreiter/Globe staff)

  17. The next day, Abi and her extended family make it to her first-ever concert. Noelia and Abi pose for photos as they enter the Xfinity Center to see her favorite singer perform.<BR class=br>(Suzanne Kreiter/Globe staff)

  18. As Noelia and Abi cross through the gate of her first concert, Abi breaks into a wide and unmistakable smile. When Noelia sees her daughter’s joy, she starts to laugh.<BR class=br>(Suzanne Kreiter/Globe staff)

  19. In the coming weeks, Noelia would try again to find a nurse for Abi, but this night they were together and happy. This was all they needed.<BR class=br>(Suzanne Kreiter/Globe staff)

  20. A couple of weeks after the concert, Noelia has a home visit from a new nursing agency. They arrive as Noelia and Abi return from school.<BR class=br>(Suzanne Kreiter/Globe staff)

  21. During the intake interview with a new nursing agency in her living room, anxiety and hope swirl within Noelia. She’s nervous that she’ll forget details of Abi’s medical conditions, and hopeful that they’ll find her a qualified nurse who accepts the rate of pay. (Suzanne Kreiter/Globe staff)

  22. At the end of the interview with the agency, Noelia pulls Abi onto her lap. She dreams of one day having a nurse who will stay long- term. (Suzanne Kreiter/Globe staff)

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