SPRINGFIELD, Ill. — Lori Downing brought her own copy of a newly published book Sept. 21 to HSHS St. John’s Children’s Hospital to be signed by its author and her family, whom Downing sees as an inspiration.
The book is “A Different Beautiful: Discovering and Celebrating Beauty in Places You Never Expected” (Barbour Publishing Inc.), which chronicles Courtney Westlake’s journey in seeing beauty beyond her 4-year-old daughter Brenna’s severe genetic skin condition.
Downing’s copy was signed by Westlake, 32; her son, Connor, 7; and Brenna, who signed with the letter “B.” Her husband, Evan, 31, was also there.
“I’ve already read it. It’s very inspiring,” said Downing, who lives outside Mechanicsburg. “Courtney is a very good writer, and I follow her blog ‘Blessed by Brenna.’ It’s very inspiring to read about their family. I know it’s probably hard to share their family, but I think they’re making a difference making people aware of the differences, and that Brenna is just a normal little child like everyone else.”
Brenna, who has the rare skin condition called harlequin ichthyosis, spent six weeks in St. John’s Children’s Hospital’s Neonatal Intensive Care Unit after her birth Dec. 19, 2011, and has been hospitalized and had surgery several more times since. She is the 2016-17 Illinois Champion Ambassador for Children’s Miracle Network Hospitals.
Brenna’s condition causes her peeling skin to look red, giving the “appearance of a terrible sunburn over her entire body.”
“I want to explain so many things to strangers — that Brenna almost died when she was born, how much work it is every day to keep her skin comfortable, and most importantly, how she is just another child,” Westlake writes in “A Different Beautiful.”
“But as time goes on, I see what is much more important than public education about difference: educating Brenna about life, helping her to understand how God sees her and how He created her, and teaching her that her worth and her purpose are found only in God. I want the light of both of my children’s differences to shine brightly.”
Downing’s children and Evan Westlake went to school together at Tri-City.
“I just think they have a lot of support from both sides of their family, and I think Brenna was put in the right family,” Downing said.
In “A Different Beautiful,” Westlake weaves stories about her early years and her experiences as a mother to show how God changed her thoughts and approach to life. She now puts her trust in God’s strength and guidance.
Westlake’s previous visions of what having a daughter would mean to her have changed, she wrote. She once pictured a daughter wearing cute little swimsuits, pink twirly dresses, having crushes on her brother’s friends and teenage fights about too-tight clothing. She wondered if her daughter would be smart, athletic or popular.
“I became a different person on December 19, 2011. It didn’t happen all at once, but that was the day that God firmly took hold of my heart and began to slowly mold and change me,” Westlake writes. “That was the day that God gave me a choice about whether to embrace the gifts in this world, to embrace the perfect and unique differences that He placed into my life — or whether to run toward resentment and bitterness.
“And it was not simply a matter of accepting my daughter as she was born and as God created her. No, He moved much deeper than a mother’s unconditional love for her child. I felt Him challenge me, day after day, to tear down the preconceptions and the misconceptions of life as I knew it.”
Having also written “That’s How You Know,” Westlake said her latest book has been doing well in sales since its release date Aug. 1. It’s sold over 6,000 copies, she said.
The book signing in the lobby of the children’s hospital was a way to celebrate the exciting things going on in the Westlake family, said Brandy Grove, major gift officer with HSHS St. John’s Foundation.
“Today is just about celebrating Brenna and her family,” Grove said. “We’re so thankful for our Neonatal Intensive Care Unit to have saved Brenna’s life and our amazing caregivers… We’re just really happy to support the Westlake family and Brenna in all their journeys and endeavors.”
Westlake said that maintaining Brenna’s health is a daily challenge.
“I feel like every day is putting trust in God’s plan for her,” she said, “and it’s been amazing to see over the years how he’s taken the struggles that we’ve had and used them for other good.”
Source: The (Springfield) State Journal-Register, http://bit.ly/2cKCWTi
Information from: The State Journal-Register, http://www.sj-r.com
This is an AP-Illinois Exchange story offered by The (Springfield) State Journal-Register.