WAUKESHA — Diane Nienas, mother, author, inspirational speaker and certified life coach, has experienced 20 years of caretaking for her own terminally ill children. A mother of four, Nienas has now lost two children, Leo and Trent, but she never let that stop her from seeing the good in this life.
Nienas will be releasing the first of a series of children's books, “Living Life With Leo,” dedicated to the adventures her family experienced with Leo during his lifetime.
At age two, a rare, terminal illness called leukodystrophy caused the white matter surrounding Leo's brain to deteriorate, exposing the nerves. Leo went from a happy, normal toddler to a boy stripped of all his motor functions, said Nienas. Within months, he was completely still and could only blink his eyes.
Through treatments, Leo was on the road to getting better, eventually using a walker in elementary school. But the damage was far too much; Leo went from a wheelchair to being bed-bound and passed away three-and-a-half years ago.
Throughout Leo's lifetime, Nienas and her family adapted the mindset of living in the moment and decided to make each day the best it could be. They provided opportunities for Leo that any normal, adaptive child would be able to endure.
While she and her family were caring for Leo, Nienas' oldest son Trent was diagnosed with terminal brain cancer at age 26, five years ago. He died last year.
“The acceptance piece came to me early on. Initially you scramble and look for ways to fix the problem, but it was at this moment that I surrendered and my life became calm,” said Nienas.
Inspiring others
Shortly after Leo’s diagnosis, 18 years ago, he started having visions and conversations with Jesus, said Nienas. This prompted Nienas to write a memoir entitled, “I See Jesus,” which will be released in October. The memoir describes the journey she and her family experienced in relation to Leo’s visions and how he was able to take them all on a transformational journey. Nienas added that Leo was instrumental in preparing Trent for the changes his body was about to endure when he was diagnosed.
“It wasn’t long after Leo’s diagnosis that I was shown this beautiful insight from his visions,” said Nienas.
The writing of the memoir combined with Nienas’ consistent blog, updating friends and family on the adventures of Leo’s everyday life, led to the idea of writing a children’s book series. Nienas wanted visuals with her words in a form that could inspire both children and adults. She continued with her memoir while writing the book series.
The first of the four-part series will be released Sept. 22 on Amazon. Each book features real-life experiences the Nienas family had with Leo throughout his life. In the book representing autumn adventures, Leo is shown carving a pumpkin, playing football, raking leaves and going to pumpkin and apple farms through illustrations.
The next book release is planned for March of 2023, describing Leo’s springtime adventures.
Book launches
Nienas is hosting a “meet the author” book launch at Martha Merrell’s Books at 231 W. Main St., on Sept. 22 from 6:30 to 8 p.m.
The next event follows on Sept. 23 from 9 to 11 a.m. at Summit View Elementary School, 2100 Summit Ave. The location lies close to Nienas’ heart as all four of her boys attended the elementary school. Nienas and her illustrator Jayden Ellsworth will share their process of writing, illustrating and the creative adventures of making the story.
The final book launch is on Sept. 24 from 9 to 11 a.m. at Inclusion Coffee Company, 3152 Village Square Drive in Hartland. Nienas admires the company, which provides an environment for individuals with special needs.
A portion of all the books’ proceeds will be donated to various charities that were instrumental in Leo’s life.
“It’s about spreading the seed of hope, and the main message is about inclusion,” said Nienas, “demonstrating and showing kids that no inability can keep you from the ability of living a fun life.”
Nienas read the ending sentence of “Living Life With Leo, Autumn Adventures:” “Now you know a little about Leo, he’s just like you and me. If we treat everyone special, then special is all we’ll see.”
