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