Hope Amidst the Shadows

Walking through an old compound in Shanghai, we stumbled upon an open door. Peering inside, the living room was lit by the pale light of the afternoon sun. The walls are covered by posters and artwork drawn by children. The wild and untamed paint strokes of vibrant colors spilled onto the canvas, shining ever so brilliantly in the gloomy room like hope amidst shadows. A large tapestry reading "Grateful home” hung on the wall. Signatures covered it. The fainting ink recounted the stories of the countless families that had sought refuge in this small building.

Tapestry reading: Grateful home, filled with signatures of the residents here

At first, we couldn't reach the manager here. Perhaps he shouldn't even be called the manager because he, too, is a part of this community of parents caring for children diagnosed with life-threatening tumors - the very children who are the heart of this place families call home. An auntie greeted us instead, introducing herself as a parent of one of the ill children.

"What is your profession?" “Farmer." Her answers were short and direct.

"How did you come to Shanghai?" “From Jiangxi, to treat my child." The distance from Jiangxi to Shanghai is more than 700 kilometers. The journey must have been difficult.

"Is it ok to ask how old your child is and what your child's illness is diagnosed with?” I asked cautiously, curious of the reason she traveled such a great distance. "He came to Shanghai at age 11, and now he is more than 12. He has Rhabdoma," her face read of a peaceful stillness that suggested deep composure and familiarity with this topic. Rhabdoma is a rare and aggressive type of cancer that forms in the soft tissue, specifically on muscles that attach to bones. Treatments of rhabdoma include surgery, chemotherapy, and radiation therapy… all are harsh and cruel to a child 12 years old who underwent these treatments frequently for over a year.

"How would you describe 'Grateful Home’?” “It is great, truly great”, her face brightened upon this question. “It helped a lot of families. The manager (we call him Shitou) is very responsible, he has a great temper and gets along very well with the children. He treats the children with an extraordinary level of care and gentleness. We all see this community as a big family. He helps us out a lot without anything in return.” For auntie and countless other families in the darkness, the ‘Grateful Home’ is a glimmer of hope amidst the shadows, where they support each other in the endless battle with rare diseases.

“We don’t have schedules around here; every day is free. Brother Shitou doesn’t plan routines for us, we feel at home here.” We looked curiously around at our surroundings. Noticing our curiosity, Auntie said, “This is the living room, where the children usually play, you can see all the toys and books, and a piano is in that corner. If the kids have any hobbies or areas of interest, the brother will sign them up for classes. Then, volunteers or teachers would come and teach them. Upstairs is where the families live, including us, there are three families here currently. We all have a room for ourselves.” She gestured as she spoke.

Shelves full of children’s books

“I think this ‘Grateful Home’ is very welcoming, it is the best around here,” she repeated.

When we asked her what her child loves to do in his free time, she hesitated. “My child… usually stays in his room. His condition is a bit severe; he uses a lot of medicine that wears him out. After each session of chemotherapy, his white blood cell levels remain extremely low (sometimes non-existent) for a long time. During that period, he hardly has any resistance to infectious diseases. If he feels well, he spends some time outside, but that doesn’t happen often. I disinfect and sanitize the room multiple times a day.”

“Every time after chemo, he is very tired and sleeps for a long time to recover,” she looks down for a moment, her voice softening.

“How did you come to find ‘Grateful Home'?” “A wardmate introduced me here. After coming here, I like it here. Brother Shitou is a great person who takes great care of the children,” she appreciated once again.

“What supports you on this endless path of treatment?” I couldn’t help but ask. “Seeing your child get better day by day. Seeing him happy makes me happy, seeing him suffering makes me suffer as well.” “He is in much better condition than when he came,” she added positively. “I didn’t think about this question much. I just came here to get him better treatment, to save his life. Other things… I didn’t consider that much,” she smiled with a tinge of quiet strength.

When we asked about the child’s father, she said, “now he's in Shanghai. He usually isn’t. He must work,” she smiled at our naivety, “If he doesn't work, what do we live on? Curing such an illness costs a lot. Just take chemo as an example; you must take medicines, get injections, and carry out tests; all those costs are at least ten to twenty thousand. Sometimes a single injection costs eight hundred RMB." She counted with her fingers as she recalled all the names of the medicines and tests with great familiarity.

We asked her about her child's education, and she smiled bitterly. "Before he was sick, of course, he went to school. But now… maybe he won't go to school again. Even after he is fully cured, we need to maintain his health for one to two years; by then, he would be quite old already. I just want him to live a healthy life. That's all I want for him."

Her voice croaked slightly, as she took a deep shaking breath, "I never look too far beyond. I just take it one day at a time, making the best out of each day. Most of us parents think this way."

When we asked her what message she wanted to send out to the world, she looked up at us, her eyes bright with determination. She said without hesitation, "I hope all the sick children in the hospitals can all recover. I hope all children in the world will never suffer from diseases. As a parent, that's all we will ever wish for."

Her words lingered in the air, heavy with both sorrow and determination. In the heart of 'Grateful Home,' where families huddled together in shared pain, hope flickered like a fragile flame—dancing amidst the shadows of their children's illnesses. For the parents, this place was a sanctuary, a beacon of light that offered warmth, support, and a fleeting sense of normalcy in the midst of the darkest struggles.

Yet, for this mother, hope also took on a deeper, more personal meaning. In the quiet moments, when the weight of her child's suffering threatened to consume her, she clung to the small victories—each step forward, each day that brought her son a little closer to healing. Her hope was a quiet defiance, a refusal to let the grave reality of her child's condition steal the possibility of a brighter tomorrow.

“May all children in the world never suffer from diseases.”