By Karen Haave
A book published by a Grant Park mother of four is a heartrending story of loss, adoption, and a terminal illness meant to inspire others to live each day to the fullest.
“Greater Than Grief: Two Against Duchenne” is Christena Estby’s first book, begun early last summer, chronicling the story of her two youngest children, Samuel and Josiah.
The boys are biological brothers, adopted shortly after birth by Estby and her husband, Cory, who is pastor of Zion Lutheran Church in Grant Park. Both Samuel and Josiah have been diagnosed with Duchenne Muscular Dystrophy, an inherited disorder of progressive muscular weakness, typically in boys. Girls can be carriers and sometimes mildly affected, but the disease targets boys.
Some symptoms of Duchenne are falls, difficulty running, and learning disabilities. There is no cure, but physical therapy and medications, such as corticosteroids, can help control symptoms and improve quality of life. The disease is rare, with only 200,000 cases in the U.S. each year.
“Two people I love with all my being have Duchenne Muscular Dystrophy,” Estby wrote in her book’s Preface, “and in spite of all our efforts – physical therapy, quality medical care, healthy diet, clinical trials, medication, and supplements, and all the love in the world – barring an actual, honest-to-goodness, direct-from-God miracle, Duchenne will kill them. It will rob them of so much more before then, but in the end, complications from the thief named Duchenne will take them from us entirely too soon.”
The average lifespan of those afflicted reportedly is 27 years.
“My hope has been this true story of our family’s journey to get our two youngest boys to us will speak to others in many ways. It’s a story about loss, adoption, and a terminal diagnosis, but I hope the bigger take away of the story is love, hope, faith, family, and living each day to the fullest,” she told The Vedette.
“My older children are fully aware of Duchenne and the ultimate outcome. Samuel and Josiah are in various levels of understanding. I detail that quite a bit in the book in the chapter “Telling the Boys.”
“In a nutshell, they know their muscles are ‘different,’ they get more tired, and they have to take certain precautions. Bounce houses, trampolines, stairs [are] all a bad idea. They know most kids don’t go to PT three times a week, and other children their ages don’t typically wear night braces. They know they will eventually need a wheelchair. Samuel just got a medical scooter for long distances, such as days at the zoo. We try to be age appropriate and share information openly and honestly when they ask or circumstances come up.”
Although she declines the title professional writer, Estby has a gift for words and a compelling story to tell.
“This is my first book,” she said.
“I have been approached by a couple of people suggesting I write another, maybe a children’s book about Duchenne, an eventual follow-up to this one six-to-eight years from now to discuss the boys’ current situation/progression at that point and how our family is dealing with grief at that point, perhaps including chapters from the boys or my older kids, or a devotional book? I’m considering them all.
“I found through this process that I really enjoy writing. I’ve always loved words and didn’t realize both how fun and truly therapeutic this would end up being. It also was interesting to navigate the self-publishing process, learning about formatting, and how Amazon runs the publishing side of their business, designing my own book cover, etc.
“This past late spring/early summer, I started typing up some memories of our family’s story, kind of just journaling for me and my own remembrance. Over time, I’ve had a couple people suggest the things our family has experienced and the uniqueness of our little crew could be of interest to others. I sent a few pages of what I had typed to a friend and asked if she thought it could be worth pursuing an actual book. She said she thought that could be an amazing idea, so I went with it!
I have a master’s degree in speech-language pathology from eons ago. Since the time I worked as a speech therapist for a couple of years, I’ve been a stay-at-home mom, a preschool teacher, a babysitter, a piano teacher, and now back to a stay-at-home homeschooling mom. I never considered writing in any professional sense until the idea of this book grew and grew.
“My family and most others in my life didn’t even know the project existed until about six weeks before publishing. It was such a private project at first, and I wasn’t sure for quite some time I was going to follow through with actually publishing. I had a couple of trusted people read an early-ish manuscript to give feedback on the viability of actual interest and the appeal to others outside of my immediate circle of friends.
“Once I announced the launch, about a month before publishing, support and excitement came pouring in. It’s been such a short time since the book was published, but I’ve already received a lot of positive feedback and was encouraged to hear it really has potential to make an impact, especially in the lives of families recently handed a Duchenne Muscular Dystrophy diagnosis, or for another terminal diagnosis.”
Estby said “Greater Than Grief” currently is available on Amazon, at Cornerstone Coffee House in Peotone, Salon Valenda in Beecher, where the “Cuttin’ For Wheels” fundraiser mentioned in the book took place, Dance in the Light in Bradley, and at Rubber Rose Bookstore in Kankakee on Court Street.
Two other bookstores, in Highland and Oak Park, with local author sections have voiced interest, Estby added.