Zhou Lin's life in the hospital has been a constant roller coaster
ride of dependence and independence. The pattern is for her to have
a surgery, spend a couple of rough days coming off the anasthesia,
slowly build strength to do things on her own, and then be thrust
into another surgery again. Tomorrow, she will be having the first
operation on her hands to start to restore some degree of function to
what is left of her fingers. The decision has been made to just
proceed with her left hand for now, since the right hand is already
so functional (able to write, paint, use chopsticks, and do most
everything else she needs to do), yet pulling down the severely
contracted fingers on her left hand will give her much better ability
to grab things as she begins to bear weight on her feet and walk on
prosthetics.
As Zhou Lin resigns herself to a seemingly interminable stay in the
hospital, her dulcimer has become her respite. Her music therapists
have created an adaptive way for her to play the instrument on her
own, and have also helped her to start writing her own songs. Her
first song is about her hometown, and is amazingly beautiful: "Wo de
jiaxiang zai Sichuan. Nar you shan, you shui..." ("My hometown is
in Sichuan. There are mountains and waters there...") Zhou Lin
loves the instrument so much that her music therapists have offered
to play for her to help her relax before surgery, since the needles
and IVs are the scariest part of hospital life for her. As Zhou Lin
went through an especially tough pre-op wait last week, her music
therapist played the dulcimer to her for over two hours as she
waited, which was very soothing to everyone involved. As Zhou Lin
lay there, peacefully medicated and wrapped up in warmed blankets, I
couldn't help but wonder, "How many hospitals in the world play live
music for their patients before surgery?"
Because Shriners Hospitals have not only the luxury of top-notch
staff but also a full host of volunteers through the Shriners
organization, frequently the kids will get a treat, like pet visits
from specially-trained dogs and cats, field trips, pizza parties in
the playroom, and plenty of games and prizes. Zhou Lin is
increasingly excited to spend time in the hospital playroom making
arts and crafts, playing games with staff or other kids, or just
hanging out and watching.
Zhou Lin has also been developing the skills and confidence to start
reaching out to her nurses and other hospital compatriots more in
English. Her roommate now is from Jamaica, and Zhou Lin was excited
to ask her roommate's mother if she could braid her hair in the same
way. She said that she's always wanted to try tiny braids, but her
mother was always too busy. Indeed, the process did take a long
time, and her roommate's patient mother spent almost two hours
braiding Zhou Lin's hair one evening. Although she only got to keep
the braids for a few days, she had lots of fun being told by hospital
staff that she looked just like a Tibetan princess.
Since it is now September, Zhou Lin's tutoring lessons have started
in earnest -- Chinese, English, math, science, social studies, and
art. Her tutors have to be very well-prepared and very flexible,
since Zhou Lin's condition can change so remarkably from day to
day. Sometimes she may be confined to her bed, sometimes she is
unable to write, sometimes her exposure to a topic is rudimentary
(i.e. she had no idea what 9/11 was), and other times she moves so
quickly that it is hard to keep up. Although we have put together a
schedule to try to help Zhou Lin retain some sense of structure and
control within the necessarily out-of-control hospital environment,
every day is a new adventure of trying to fit everything in. Chinese
software has been installed on her donated laptop so that she can
look up characters and try to keep up in her Chinese reading, but the
tutors are trying not to give her too much homework to keep her from
getting overwhelmed.
Zhou Lin and I spend quiet time every evening before bed having a
final snack, chatting, reading a story, brushing teeth, and getting
tucked in. Because of all the healing going on with her legs, she
has to sleep propped up with various pillows under a big dome tent to
keep the blankets from getting tangled up with the vacuum dressing on
her left foot or any of the bandages on her graft or donor sites. A
few nights ago, her music teacher introduced Zhou Lin to Mozart, and
although she had never remembered hearing classical music before, as
I tucked her in she asked me to let her listen to her Mozart CD with
earphones as she drifted off to sleep. (Perhaps she was taken with
Mozart, or perhaps it was just her attempt to block out her
roommate's loud fascination with watching loud hip-hop music videos
into the night.) At any rate, the feeling as I tuck Zhou Lin in and
give her a tiny kiss on her head is very special and even holy. Even
though having such an unstable life right now is tough for both of
us, we both agree that we are glad we're together here in Boston.
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