Two years ago Jonathon was sick and fragile like this eleven month-old orphan boy, who had traveled with a nanny for treatment. Jonathon wrapped his chubby oversized paws around little brother's grayish wispy hand.
Little brother died the next day, after surgery. His nanny wept as she packed up their things and left the hospital alone.
Our week in the hospital was exceedingly meaningful in several respects.
1. Experiencing developing-world healthcare.
The department of pediatric neurology and neurosurgery was well over capacity. Beds lined the hallways, were pushed up against the nurse's station, and one little boy's cot was set up in the laundry room, beside bags of used bedsheets and an industrial washer.
On the beds, infants and children of all ages, nursing mothers, a mother and child sleeping together --one at the foot and one at the head, whole families looking worried, huddled around an injured child. Some children appeared well, others were on oxygen, feeding tubes, heart monitors, receiving blood transfusions. Some had bandaged, asymmetrically swollen heads, two black eyes, and cuts up the face.
A used blood transfusion bag and bloody tubes had been tossed in the right direction, but hadn't quite made it into the disposal hole. The mess sprawled out atop a stainless steel biohazard container.
A handful of doctors (most are not Ph.D.s but have attained the equivalent of a master's degree) are under intense pressure with far too many patients. They work efficiently and therefore have no time for relationships or questions. Patients wait endlessly, receive brisk care and ambiguous answers. Patients generally distrust doctor's opinions and integrity, in an internally uncoordinated medical system. I witnessed one conflict flash between a lead doctor and our roommates. The father was increasingly anxious about his seizing infant son, who was declining, and he approached the doctor aggressively. The doc yelled, "You need to wait! You must respect our work!"
During our week in the hospital, a cumulative sixty minutes accounted for all the time actually completing a procedure or conversing with a physician.
Nurses adorn side-buttoned, high-collared white or light green coats and those traditional silly hats. It's all very One Flew Over The Cuckoo's Nest -- 1960s institution style - meets - feminine Frankenstine. Nurses, like doctors, are overworked and impersonal. Nursing assistant is not a position. Family members of the sick person are responsible for comparatively much more of the patient care.
2. Personally thanking the surgeons who saved Jonathon's life.
Had we not not taken this trip, Jonathon would never have had the chance to meet the surgeons who saved his life! In 2011 a team of surgeons worked on Jonathon, including local neurosurgeons and one neurosurgeon from Hong Kong. Jonathon's surgeries were possible because of
MedArt*. These doctors were delighted to see Jonathon, and impressed by his progress. They showed me a picture of his brain opened up during a surgery.
They posed for photos together which I believe will be significant for Jonathon in the future, as he seeks to understand his past. Jon colored pictures for the doctors and I wrote thank-you notes. I also verbally expressed our gratitude in their presence, losing some tears, which I'm sure they appreciated but thought was a bit over the top.
*If you were wondering why we travelled to Suzhou rather than seeking care in Changsha, which has a children's hospital of superior reputation, it's because the MedArt surgeons have established their work in Suzhou.
3. Listening to the stories of patients.
There were two families I felt the greatest need to comfort. The first, one of our roommates, an eight month-old boy who was seizing and declining. The problem could not be identified or effectively treated. His father was anxious; his mother wept and breastmilk leaked through her shirt because she couldn't nurse the baby. They kept incessant vigil over the child, who was now semi-responsive and hooked up to several machines. I wanted to offer comfort, but what does one say without sounding trite?
The second family I longed to comfort had an almost two year-old son with aggressive, recurring brain tumors in a risky location. He had permanently lost his ability to swallow due to neurological damage, the doctors said. He never walked or played. The doctors told his mother to give up and go home.
This mother heard that I was Jon's foster mom. The first thing she said to me was, "Yeah, well, if I had money I'd help people too." It annoyed me, but probably, it's true. Besides charity, if they had money their own son could be treated at a preferred hospital, see expert doctors. If they had citizenship in developed country, they could receive superior care. They wouldn't have to worry about spending all their income and life savings on treatment. When money runs out, treatment halts. What if they expend everything and the baby dies anyway? I felt aware of my privilege.
When the grandma learned that several orphans, like Jonathon, had received their surgeries charitably and in this case from an excellent Hong Kong surgeon, she joked, "Hmph. Can we gradually send our boy to the orphanage? Get a free surgery?" Ironically, that's what actually happens. Treatment is too expensive, the future is too risky, hope is lost. The child is abandoned. Jonathon's story.
The mother and I talked long, and as we did, I stopped feeling annoyed and she opened her heart. Told me how she decided not to cry anymore, it's no good for her son. My mind was always running crazy thinking about how we could get them some help. I realized that there was a neurology ward full of families in the same situation.
For days I kept asking, what is my part here? Though part of me longed to share the hope I possess, I was certain that listening was more necessary than speaking.
She told me how before all this, she didn't have faith in anything. Since they'd been in the hospital for the past three months, her mom came to visit and told her great news about hope. She told me how it calmed and comforted her; she believed. Peace for the first time, she said. Not afraid for my son's future, she said.
Our roommates, the anxious dad and weeping-leaking mom, listened.
4. Watching Jonathon light up the ward with cheer.
Pictures speak for themselves! Jonathon was self-appointed cheer squad - team mascot - superfan - encourager of every and all babies he met. It was crowded, no privacy, everybody waiting with nothing to do, the ideal setting for Jonathon to shower joy all over the other kids. The two month-old baby girl in the photo above was our other roommate. She was an orphan, accompanied by her nanny, and had a successful surgery for spinabifida. Though judging by her post-op whimpering, she thought it was pretty painful!
Jonathon is young but already it's unmistakable that he is a gifted encourager. I was very proud of him.
4. Playing with Jonathon.
I forgot how wonderful and simple it is to give one child your full attention for a long period of time. We sort of fell in love again. Our time was slow. I reawakened to him; conscious, aware, noticing, marveling, treasuring the child entrusted into my care.
When our week was finally through, everyone in this family was ecstatic about being together again.
counting the graces
thank you Father for
early morn looking out across our neighborhood of apartment windows, all dark and still
tromping around in a garden and riding tricycles with mike & jon
reconciliation
haircuts and well-behaved boys during
pineapple in season
talking marriage with a friend I deeply respect
invitation to a wedding
