GLOOM AND DOOM
The news of Kyra’s condition hardly
came as a shock, but that didn’t
make it any more palatable. The
most difficult pill to swallow, the
couple confided, was the sense
of utter helplessness that had
enveloped them.
Sending them spiralling further into
despair was a pessimistic doctor
whom they dubbed Doctor Doom.
He was an unempathetic man of
science, and a bountiful source of
hope-crushing medical imagery.
“This is how your daughter will turn
out,” while pointing to Elephant Man
photos. “He even used Google to
find the photographs right in front of
us!” exclaims Khairyl. Disheartened,
the two eventually had enough and
sought hope elsewhere, highlighting
the importance of perspective in
dark times.
Determined to understand Kyra’s
condition the best they could,
Magdelene and Khairyl sought social
support from a Facebook group
comprising families whose children
had also been diagnosed with M-CM.
Fortunately for them, even though
Khairyl had taken half a year off
work without pay, the family was
able to tide over the dark period
with the savings that they had
accumulated since their graduation.
YOLO!
In an interview generously peppered
with the term YOLO (acronym for
‘you only live once’), Magdelene and
Khairyl have vowed to live and die on
their own terms.
Both of them admitted that they
would occasionally break down,
but never at the same time. “When
I get really depressed, I go full on
depressed, then just get out of it.
I always go by the philosophy that
this, too, shall pass,” Magdelene
says. During her extended stay
in the hospital, she folded paper
cranes and when she had to hold
an art exhibition as part of her
graduation, she decided to turn
the paper cranes into a symbol
of hope. That symbol totalled
up to 1,000 red (Kyra’s favourite
colour) paper cranes – in Japanese
culture, folding a thousand cranes
supposedly grants one’s wish for
health and recovery from illness.
The exhibition, with its emotional
touch, ended up drawing other
inspired parents who came forward
to share their own stories.
As for Khairyl, he would turn to
longboarding to vent his anger,
carving the streets with fellow
boarders in an attempt to calm down.
Despite trying times, the unwavering
duo had never even considered
giving their child up. Instead, they
turn a well-trained blind eye to
stares from the public due to Kyra’s
apparent abnormalities and practise
what their four-year-old has taught
them – to simply enjoy the present.
Reflecting on how life has changed
for them, the spirited parents feel
thankful that Kyra had brought
them even closer, and taught them
to focus on what really mattered.
“Before her, we we ɔ