By Jackie
O’Neal
I recently watched
a segment on The Discovery Channel that chronicled the daily life of Shiloh
Pepin and her Maine-based family.
Shiloh Pepin is
one of three survivors of sirenomelia or Mermaid syndrome, a rare medical
condition whereby a fetus fails to develop normally below the waist, resulting
in a fusion of the lower limbs.
The disorder is
rare and occurs in 1 out of 70,000-100,000 pregnancies. Strikingly, the majority
of infants born full term, die within a few short hours of birth.
Shiloh’s mother
questioned her decision not to have an abortion after she learned about the
fetus abnormalities, and it was medically ascertained that her child would be
born with sirenomelia.
Later as she
observed Shiloh’s daily struggles, she continued to despair. The condition is
accompanied by devastating symptoms and abnormalities such as kidney, colon, and
genital deformities.
Naturally, her
parents did not want their child to suffer physically and mentally, or feel that
her life lacked purpose and was simply a prison of tormenting symptoms.
Their loving care
of Shiloh reminded me that when we are conscious of God’s presence in our lives
even as we undergo difficult trials, our awareness of God walking beside us
makes any trial, however challenging, more manageable to endure.
Confronting a
child’s disability can be one of life’s gravest problems, and parents experience
a sense of powerlessness, but in Shiloh’s case, I could not help but remember
the words of King David’s psalm that insist that each of us is “fearfully and
wonderfully made.”
I realized that we
can all draw comfort from those words, and that “disability does not mean
inability.” Shiloh has an active life, attends school, and works with a swimming
coach. Born in 1999, she is a “miracle child.”
How much easier it
would have been for Shiloh’s parents to become pessimistic, but instead they
forged ahead to be loving caregivers, and never tired of finding creative ways
to make Shiloh’s life as “normal” as possible.
It appeared to me
they were expressing praise for the whole creation of God via their bright
optimism, and tireless devotion in giving Shiloh a happy life despite her
disability.
Since we are now
moving past the Christmas season into Epiphany, I recalled the words of Fr.
Frank Pavone, who said Christmas relates to the Gospel of Life.
He stated,
“Christmas illumines the meaning and value of every human person. In the light
of the manger, we see every human person as one who is called to sit with Christ
on His throne.”
And so, even
though Shiloh’s parent’s decision to carry the pregnancy to full term was
devastatingly hard, I know the Lord’s hand was upon them.
© Assist News
