Life with Isabelle
by
CAROLYN J. R. BAILEY
w
hen Isabelle June Bailey
was
born 17 years ago the doctor
said, "It's a girl." The nurse
said, "Oh, she's beautiful."
"Is everything alright, honey?" I asked my husband, Bram.
"Everything's fine."
But I knew everything wasn't fine. I had taken the
"what to expect" tour of the hospital, and I knew there
were too many people in the room.
Within 15 minutes of Isabelle's arrival, the
doctor was standing by the bed saying, "She
may be a beautiful little girl, but she has
Down syndrome."
The nurse watched the doctor leave the room
and then came over and said, "She has Down
syndrome, but she's a beautiful little girl."
The nurse, who had worked with children
with Down syndrome in high school, gave me
her home phone number in case I had questions
or just needed to cry.
I said, "I don't think it was a coincidence
that we got you." She looked both ways to be
sure nobody else could hear her. "Neither do I."
God knew we needed her.
These were my first three lessons in challenging this particular challenge:
First, when people aren't sure what to say, they can say hurtful things.
Second, your perspective makes all the difference. Third, God was already
with us on this unexpected journey.
We knew what people with Down syndrome tended to look like, and
we knew it meant cognitive disability, but we didn't know anything else.
I flipped through the packet of "helpful" information to uncover pictures of
newborns with feeding tubes and a chart that predicted a life expectancy
chart of only 55 years old. I read that Down syndrome, or Trisomy 21 (three
#21 chromosomes instead of two), is the most common genetic abnormal-
ity. One in every 750 children has Down syndrome. I read about poor muscle
11
The War Cry | APRIL 2013
Photos
Courtesy Carolyn J. R. Bailey
tone, loose joints,
weak reflexes, a
depressed im-
mune system,
heart issues, leu-
kemia, epilepsy,
vision, hearing,
thyroid and skin
problems and early onset Alzheim-
er's. It was too much information.
I just wanted to hold my baby.
That first night I wondered what
the future would be like. Somehow
I slept, and I had the most normal
dream I have ever had. In it Isabelle
grew up. There were birthday par-
ties, Christmases, summers at the
beach and fall days running through
leaves in the park. She grew up
surrounded by family and friends.
When I woke up the next morning,
.
.
ns
"
to
w
d
m
h
k
v
t
problems and early
' It
t
h
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3/14/13 2:37 PM