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Globe Santa: Childhood illness steals a family’s normalcy
Globe Santa wants to give a bit of it back.
A family’s world shifts on its axis when a child gets sick. Afternoons that would bespent playing with siblings become long drives to the doctor and hours of treatment. Kids can no longer just be kids.
The parents writing to Globe Santa want to give their children a normal, joy-filled holiday, where toys and games replace thoughts of scary diagnoses, if only for a brief time. But the financial toll of caring for a sick child can make that dream feel impossible.
“I have hit a new low in life right now, financially,” one mother writes. “I have had to take many hours off of work due to the fact that my daughter has leukemia.”
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She is by her 8-year-old daughter’s side through each treatment and hospital stay, all while juggling caring for her four other children as a single mother. A visit from Globe Santa, she writes, would lift some of her stress.
“Anything would help,” she writes. “Clothes, shoes, socks, books. Anything.”
Medical appointments for children who are sickcan be all-consuming. One mother of four has two boys with lifetime medical diagnoses that require constant trips to Boston Children’s Hospital, Massachusetts General Hospital, and pediatricians’ offices. Shehas had to cut back her hours at work so that she can be with her sons each time they enter an exam room.
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“With rent, bills, and daycare payments on top of necessities for my sports-playing boys, I can barely make ends meet,” she writes.
Another mom, with two sons and a toddler daughter, spends much of her time driving the boys from Boston to Newburyport to Peabody and beyond for multiple medical appointments. Her 8-year-old son has autism and ADHD, and her 4-year-old son has cerebral palsy, autism, and severe hearing loss. She’s unable to work because of all their appointments.
Toys are critical in her household but break often and need to be replaced because the older boy is still learning how to handle them. The boy with cerebral palsy cannot walk or talk, and play is developmentally important for his self-expression and entertainment.
“He gets frustrated. He needs toys to keep him busy so he is not bored,” she writes.
These families are not alone in experiencing a financial burden from caring for their sick children. One study of families with a child with advanced cancer found that 94 percent had some sort of work disruption. In 42 percent of families surveyed, at least one parent quit their job because of the illness.
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Siblings of chronically-ill children also shoulder their family’s stress. They adjust to schedules that revolve around getting their brother or sister healthy. They absorb their parents’ concerns.
Another study found that healthy siblings can experience emotions like guilt, withdrawal, and confusion. Families turn their attention to the child who is sick, leaving some siblings to feel forgotten or isolated. These children, however, tend to become more patient, empathetic, and open to communication as they support their sick siblings.
A single mom of three writes that she was by her youngest son’s sideas he recovered from surgery after surgery and rounds of chemotherapy after he was diagnosed with a brain tumor. Still, her mind turns to her other children at home, whom she cares for as a single parent.
“I humbly ask for assistance to be able to give my kids something more than I typically can do for them,” she writes.
Globe Santa’s team is working around the clock to give each child a glimmer of hope and happiness this holiday season, but we need your help. If you are able, please consider giving by phone, mail, or online at globesanta.org. Every donation is greatly appreciated.
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For 69 years Globe Santa, a program of the Boston Globe Foundation, has provided gifts to children in need at holiday time. Please consider giving by phone, mail, or online at globesanta.org.
Marin Wolf is a freelance writer. She can be reached at [email protected]
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