DYING
TO LISTEN
‘Change,’ and back when he was in
high school he had a senior quote
which was from the song. It was
amazing how fitting it was,” said
Leah Dick, a massage therapist
who wants to specialize in serving
cancer patients. “I sing that song
over and over and over again” to
remember him.
Synakowski thought of her son,
Byron, who was born Sturge-Weber Syndrome, a rare neurological
condition that usually affects one
side of the brain. A port-wine stain
on his forehead signaled the condition, which was caused by vascular malformations. Byron suffered
hundreds of seizures within less
than a year after his birth that resulted in 11 hospitalizations.
Doctors had to remove half his
brain when he was 10½ months
old, and he could have easily died
from bleeding during the surgery
or a stroke afterwards. It was
1997, and she now realizes it was
then that her path in death and
song really began.
“I told them they didn’t have
permission to keep him alive if he
did not want to be here,” says Synakowski. She would touch his small
hands, holding him in her lap before
and after treatments, lulling him to
sleep with what she knew could be
HUFFINGTON
05.19.13
the last words he would hear:
“This little little light of ours/
We’re going to let it shine/ ... We
won’t let anyone (blow) it out/
We’re going to let it shine.”
He survived and is now a high
school sophomore. Though weak
on one side of his body, he enjoys
playing volleyball, and is close to
becoming an Eagle Scout.
“Going through that baptism, it
enables me to say I can go in there
and be with a child who is suffering,” she says.
Recently, Synakowski has started calling pediatric hospitals, asking if they would be interested in
allowing song in their checkup
rooms. “It made me comfortable
with the idea that babies’ lives
can end. It’s not just older people.
People always say phrases like ‘his
time was cut short’ and things
like that. I think we are giving a
certain amount of time on this
earth, and that’s that. It’s
the time we have to live.”
Reporter
Jaweed
Kaleem on
whether
deathbed
choirs make
people
uneasy. Tap
here for the
full interview
on HuffPost
Live.