Those nine months a mom carries her baby are filled with joy, anticipation, and a dose of uncertainty. What the new parents hope for is their bundle of joy to be healthy. Sadly, that is not always the case.
Jennie Wilklow, from Highland, New York, couldn’t wait to meet her daughter. She and her husband were over the moon to hold her in their arms. All the ultrasounds and doctor’s appointment suggested the baby was healthy, so they were eased and never thought sweet Anna would be born with a condition that would change all of their lives forever.
Jennie delivered Anna via C-section at 34 weeks. Doctors told her she looked beautiful and that was all Jennie needed to hear at that point.
Shortly after, the proud mom heard her daughter cry, and that was just another sign that everything was right with her little jewel.
When her husband visited Jennie, he was strangely silent and looked worried and puzzled.
“My husband’s silence scared me; he just sat in shock as the doctor left, and I prodded for more info,” Jennie shared with Cafe Mom.
“He just kept saying, ‘It’s bad.’ What does that even mean? I thought in my head. He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’”
Anna was diagnosed with harlequin ichthyosis, a rare condition that causes thick diamond-shaped plates that are separated by deep cracks. “As they tried frantically to help her, her skin hardened within seconds (of birth). After hardening, it began to split, causing open wounds all over her body,” Jennie told Cafe Mom.
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Although doctors weren’t sure she would survive, Anna beat the odds and is thriving. “She was beauty in the purest form,” her mom said.
There isn’t cure, and the treatment is quite demanding as it requires constant baths and keeping the skin as much moisturized as possible. “Every couple of hours I covered her with Vaseline and bathed her for many hours of the day. I had dreamed for years about the things my baby would wear, and though it seemed so trivial, it was what I struggled with most,” Jennie said.
In an attempt to raise awareness about this condition, Jennie posts photos of Anna on her Instagram page harlequindiva. She opens up about the everyday struggles and what it is like to have a child with harlequin ichthyosis.
“Anna captured everyone’s hearts because she is the purest form of perfection. Doing the work every day is simple when I’m doing it for her, and with every new accomplishment, the world celebrates with me,” Jennie told Cafe Mom.
She adds, “I now understand that I was given her because of the love I already carried in my heart for my daughter. Anna was meant for me, and I for her, and together we will show the world what true beauty is.”
He was a real American. Famous country singer found dead this morning at his home in Texas.
Kinky Friedman, known for his satirical and often provocative style, has passed away at 79. A post on his social media announced, “Kinky Friedman stepped on a rainbow at his beloved Echo Hill surrounded by family & friends.
Kinkster endured tremendous pain & unthinkable loss in recent years but he never lost his fighting spirit and quick wit.
Kinky will live on as his books are read and his songs are sung.”
Richard Samet “Kinky” Friedman earned a cult following for his unique take on country and Western music.
He released numerous albums, starting with “Sold American” in 1973, a record that laid the foundation for his career.
Known as the “governor of the heart of Texas,” he even toured with Bob Dylan during the “Rolling Thunder Revue” and made history as the “first full-blooded Jew” to perform at the Grand Ole Opry.
Apart from his musical endeavors, Friedman was a prolific writer. He wrote detective novels and contributed as a columnist for Texas Monthly.
He also ventured into politics, running for Governor of Texas in 2006 with the campaign slogan “My Governor is a Jewish Cowboy,” securing 12.6 percent of the votes among six candidates.
Born in Chicago and raised in Texas, Friedman studied psychology at the University of Texas at Austin.
His passion for music led him to form King Arthur & the Carrots and later Kinky Friedman and the Texas Jewboys. He described the latter as a “country band with a social conscience, a demented love child of Lenny Bruce and Bob Wills.”
Reflecting on his life, Friedman once wrote, “Somewhere in heaven, I’m sure there’s a quiet corner with a big easy chair, a bright floor lamp, a big stack of biographical books, and a few old dogs wagging their tails to the faint smell of cigar smoke.”
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