Written by Daphne Liu
Translated by H.B. Qin
Edited by Ida Eva Zielinska
“It’s been a long time since I was outdoors and enjoying the warmth of the sun,” shared Roxana Nancia with a sigh. Then, as she glanced lovingly at her six-year-old son, Gilbert, who has leukemia, and saw that he was smiling for the first time in nearly three years since his illness, a wave of peace soothed her heart. The single mother’s worries about her only child were relieved for a moment on this sunny afternoon.
Fulfilling a Child's Wish
On the morning of September 2, about ten Tzu Chi USA Northeast Region volunteers in Long Island, New York, drove to a park to prepare for an outdoor picnic, Gilbert’s biggest wish since the start of the COVID-19 pandemic.
Upon arriving at the park, the volunteers set up tables and chairs and brought out prepared pizza and pasta, both Gilbert’s favorites. He had been looking forward to the day trip since the night before, so he was in a happy mood and had a good appetite. He kept on saying “delicious” and “thank you for everything” to everyone. When the curious child saw the volunteers eating with chopsticks, he wanted to try. Volunteer Debbie Shen got a pair of children’s chopsticks for Gilbert so he could practice and learn.
“I told him that as long as the weather is good and his health permits, I would prepare his favorite food and take him out,” Tzu Chi volunteer Lillian Kuo explained. Lillian has been caring for the family since the beginning of 2020 when volunteer Jui Chin Huang referred the mother and child as a long-term charity care case. She has been providing them with a cash card and fruit and vegetables regularly each month from then on.
Sadly, Gilbert’s condition is not optimistic. The sweet boy has reached the terminal stage of his illness, so the Tzu Chi care team had been hoping to fulfill his wishes as much as possible in the limited time he has left.
As they sat under the Autumn sun that day, Max Shen, a member of Tzu Chi’s Long Island Youth Orchestra, and Ethan Chen, a junior volunteer at Long Island Branch Office’s East Williston Jing Si Books and Café, kept Gilbert company, chatting with him and walking around the park.
The two young volunteers had gotten to know the little boy during the pandemic since he occasionally accompanied his grandmother to fruit and vegetable distributions at which they were helping out. “When I found out about Gilbert’s wish for a picnic, I wanted to come to keep him company in his final days,” shared Max, who admires Gilbert’s courage in dealing with his leukemia.
Moddi Pan, a volunteer in training, arranged a story time for Gilbert during the picnic lunch and patiently read Jing Si Aphorisms for Kids picture books with him page by page. Gilbert happily declared that he loved it as he followed along.
Because of his illness, Gilbert hasn’t been able to attend school. But he got to know about Jing Si aphorisms due to coming to food distributions at the Long Island Branch Office. The volunteers hoped the stories of compassion would touch the child’s heart and leave a lasting impression, warming the rest of his short life with the glow and message of unconditional love.
“We were planning to take him out to play in mid-August, but the mother and son were diagnosed with COVID-19,” Lillian recounted, elaborating that the child had gone to his father’s for a weekend, and his dad was then diagnosed with COVID-19. Unfortunately, the boy was also infected and, in turn, passed the virus to his mother when he returned home.
The volunteers were deeply concerned about the additional hardship the mother now faced while already caring for a terminally sick child. They were also worried about Gilbert’s poor resistance and weakened condition. And so, while the infection took its course, they made sure to bring the two herbal drinks and high protein powder, hoping to make them strong and speed up their recovery.
Once Roxana and Gilbert had cleared the virus from their systems, the volunteers rushed to organize this long-awaited picnic, knowing the boy’s health was not improving.
Although the picnic was only a few hours long, Roxana could feel her son’s joy and happiness, and Gilbert volunteered to take pictures with each of the Tzu Chi volunteers who had made it all possible and came to share the day.
Yet, financial support, food, even a picnic to fulfill a wish are not the only forms of care Gilbert and his mom have received: He also got a much-needed means of transportation.
Gilbert’s condition was deteriorating, his legs were getting weaker and weaker, and he often had to rely on his mother to carry him around. Moreover, since he had been taking steroids for a long time as part of his leukemia treatment, his weight increased. At age six, he reached 94 pounds, making it even harder for his mother to care for him. Thankfully, these challenges were soon relieved through the donation of a wheelchair.
A New Wheelchair
Roxana marveled at the sight of the new wheelchair for her son that she’d just received, thanking the volunteers who brought it profusely. Sympathizing with the mother’s hardship in caring for Gilbert, the volunteers had also taken some time to identify the best type of wheelchair to fit all of the little boy’s needs.
The family’s care team in Long Island had been anxious about where to find the type of wheelchair Gilbert required until Hsiu Chun Wong, a Tzu Chi volunteer in Manhattan, gave them the good news that she knew where to get it. Not only was the new wheelchair provided at no cost, but it arrived just in time to brighten Gilbert’s life.
The new wheelchair alleviated Gilbert’s mobility problems at home, which not only reduced his mother’s struggles but also brought him a sense of freedom and independence. “I can move around freely at home, instead of being in a chair or lying in bed all the time,” Gilbert said as he pushed the wheelchair around, increasingly familiar with its operation.
From the end of 2019, Tzu Chi volunteers Lillian Kuo, Chun Mei Hu, and Siou Jian Fang have been accompanying Roxana and Gilbert. Due to the demands of caring for an ailing child, the mother can’t work regularly and fully support the household. The monthly cash cards from Tzu Chi are helping to relieve Roxana’s financial shortfall and burden.
But even more than financial aid, the moral support and encouragement from the volunteers on Tzu Chi’s Long Island care team have helped Roxana cope with the painful situation. Although Gilbert’s condition is unlikely to improve, both mother and son are not alone on their heartbreaking journey, and they can create positive memories to cherish in whatever time they have left together.
Your support of Tzu Chi USA’s missions can help families like Roxana and Gilbert. Together, let’s show them they’re not alone.