Danny L. Deaube' and his wife Bonnie retired in Oregon where he penned I Will Praise You in the Storm, a true story of medical trauma, organ donation and illness when two of Danny and Bonnie's four children were diagnosed with familial intrahepatic cholestasis." Their journey of faith and trust in the Lord taught them, "We can do all things through Christ..." (Philippians 4:13)
Their heartwarming and heartbreaking story began in 1975, one year after the young couple "went forward at Community Grace Brethren Church" to accept Christ and "discovered the love of God." They felt renewed and their "priorities" changed as they attended church, read the Bible and learned the ways of God.
Danny took his responsibilities as "head of the family" very seriously and his new desire to please God "overrode his earlier desire to please himself." Their healthy son Donald, born in 1969, brought the joys of parenthood and they anticipated more children.
Until their second son Stephen was born with a fatal liver disease, a "rare form of chronic active hepatitis diagnosed as familial intrahepatic cholestasis." Within a short time Stephen's damaged liver caused the whites of his eyes to yellow, his skin to turn golden and he experienced "extreme itching," symptomatic of a compromised liver. When Stephen was old enough to talk he would implore his parents to "scratch...harder."
Months of testing resulted in the fatal diagnosis of FIC, familial intrahepatic cholestasis. The doctor said, "There is no hope or cure...few patients survive into the third decade of life without treatment." With heavy hearts they prayed for a donor liver. A liver transplant "in the near future" was their only hope.
Even though Stephens medical issues were difficult for the family Danny and Bonnie wanted more children. Doctors assured them their "odds were one in a million to have another child with liver disease" and Holly was born one year later. However, at her two week checkup the doctor said, "She has it too."
Thus begins a story of trust forged in the fires of pain, trial and loss that would test anyone's faith. Yet Danny continued to say, "God is good all the time" because he and Bonnie trusted "all things work together for good to those who love God." (Romans 8:28 NKJ) Even when God's answer to prayer didn't come in the form they prayed for.
The Deaube's inspiring story of faith in the face of life-changing events offers hope and encouragement to those who struggle with medically challenged children or those who experience medical, physical or financial struggles that challenge their faith. Their poignant account is a testimony of God's grace and blessing that affirms our children are only on "loan from the Lord."
I Will Praise You in the Storm: The Story of Stephen and Holly Deaubé, a Journey of Faith, by Danny L. Deaube, WestBow Press, 2013, 136 Pages, 978-1490813059, $11.95
***For more excellent titles on medically challenged children, coping and loss see more titles below***
Midwest Book Reviews—"Gail's Bookshelf:" July 2014
I Will Praise You in the Storm: The Story of Stephen and Holly Deaubé, a Journey of Faith, by Danny L. Deaube
This book covers a period from 1966 to 2008. It is an account of the lives of Stephen and Holly Deaube and their family, beginning at birth and ending in glory. Each was born with the same rare but fatal liver disease. Honest and sometimes graphic, it deals with the everyday joys, heartaches, and struggles that accompany children with liver disease. The landscape is constantly changing, covering a large spectrum of emotions. This story describes in detail the trials and struggles as they occurred, with an honest assessment of their thoughts as they responded to pain, suffering, and death. The book chronicles a journey of faith, beginning from infancy to its final conclusion in God's sovereign will.
Stephen and Holly Deaubé
Holly and Stephen together battle fatal liver disease....their story offers hope and encouragement to those who struggle with medically challenged children or those who experience medical, physical or financial struggles that challenge their faith.
The Very Lonely Suit: A Christian Book About Terminal Illness, by Netty
Written for children with terminal illness, and their loved ones, Netty, the author of The Very Lonely Suit, wishes her poem to be a light of hope, inspiration, and comfort to the reader and anyone who hears it—from patients to hospital staff to visitors. It opens with Johnny in his best suit, fit to deliver a pair of rings on a satin pillow to the waiting bride and groom. After much celebration and cake, the little suit needs a cleaning. A trip through the dry cleaning machines renders the suit good as new, but no one returns to claim it. Johnny outgrows the lonely suit, and his mother gives it to another little boy, who’s facing a very different life event. This time around, the suit dresses its boy up for a ceremony, in which he comes face-to-face with the King of kings. The angels welcome the little boy into his new, eternal life, free of pain and suffering, and full of celebration. The message is a clear and comforting reminder that God’s grace and promise of eternal rejoicing in Heaven lessens the sting of our loved one’s passing on from their time on Earth.
Someone I Love Died, by Christine Harder Tangveld
From best-selling and beloved author Christine Harder Tangvald comes an updated and revised edition of her classic book of comfort for grieving children, filled with heart-healing words, fresh watercolor illustrations, and practical resources that help adults guide children through loss. First published in 1988, Someone I Love Died has long comforted the hearts of children 4 to 8 who have lost someone close. It gently leads children through grief with age-appropriate words and solid biblical truth that understands a child's hurting heart. The added interactive resources ensure this book will become a treasured keepsake. Once complete, children create a memory book of the loved one's life. And it offers grown-ups a tool that turns what could be a difficult season into a meaningful time of healing.
What Do We Tell the Children?: Talking to Kids About Death and Dying, by Joseph M Primo
One out of seven children will lose a parent before they are 20. The statistics are sobering, but they also call for preparedness. However, professionals of all types are often at a loss when dealing with a grieving child. Talking to adults about death and grief is difficult; it's all the more challenging to talk to children and teens. The stakes are high: grieving children are high-risk for substance abuse, promiscuity, depression, isolation, and suicide. Yet, despite this, most of these kids grow up to be normal or exceptional adults. But their chance to become healthy adults increases with the support of a loving community.
Supporting grieving children requires intentionality, open communication, and patience. Rather than avoid all conversations on death or pretend like it never happened, normalizing grief and offering support requires us to be in tune with kids through dialogue as they grapple with questions of “how” and “why.” When listening to children in grief, we often have to embrace the mystery, offer love and compassion, and stick with the basics.
May I Walk You Home?: Courage and Comfort for Caregivers of the Very Ill, by Joyce Hutchison and Joyce Rupp
Reissued on its tenth anniversary, "May I Walk You Home?" remains an invaluable resource for professional caregivers and loved ones assisting those on their final journey home. Accompanied by the experience and empathy of hospice educator Joyce Hutchison and the wisdom and inspiration of best-selling author Joyce Rupp, readers will discover the courage necessary to embrace the struggles and rewards of this final companionship.
Living Well and Dying Faithfully: Christian Practices for End-of-Life Care, by John Swinton
Living Well and Dying Faithfully explores how Christian practices -- love, prayer, lament, compassion, and so on -- can contribute to the process of dying well. Working on the premise that one dies the way one lives, the book is unique in its constructive dialogue between theology and medicine as offering two complementary modes of care
A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children, by Jolene Philo
For years, Jolene Philo’s son was hospitalized many times as he battled a life-threatening birth defect. Far from home, without friends and family to support them, Jolene and her husband felt utterly and completely alone. Today, support networks for parents of critically or chronically ill children have improved, but most only provide for urgent physical needs. The devotional meditations in this book address the spiritual needs of these parents as the author shares her own life lessons, as well as those of other parents who have walked this road. No matter how difficult the road, Philo says, you do not have to lose hope.
Prayers and Promises When Facing a Life-Threatening Illness: 30 Short Morning and Evening Reflections, by Edward G Dobson
Having a life-threatening illness is a constant reminder that today is precious. Prayers and Promises When Facing a Life-Threatening Illness offers encouragement and hope to those who suffer and those who love and care for them. Written by a fellow pilgrim on his own journey with Lou Gehrig’s disease, this powerful and inspiring devotional guide offers thirty short reflections to nurture your faith and boost your strength. Each reflection is a small dose of spiritual truth to start or complete your day.
Morning selections include a brief prayer and reflection. Evening readings are based on God’s promises to encourage and enlighten you. Some of the prayers and promises include:
• God, remind me that there is more to life than this disease. • God, give me strength to believe that you can heal me. • God, give me something to laugh about. • God, help me to leave a legacy for my family. • God, I don’t feel like praying.
After completing the thirty-day cycle, Dr. Dobson encourages you to repeat it again and again for continued spiritual nourishment that is needed during this time.
Seeing through the Fog: Hope When Your World Falls Apart, by Ed Dobson
An exploration of identity and faith, Seeing Through the Fog invites readers to a vibrant life, an expectant life, a life of joy in each new morning.
Pastor Ed Dobson has spent his life preaching sermons, but this book is not a sermon. He has spent more than ten years with a debilitating illness, but this book is not about grief. He has found joy in the midst of sorrow, but this book is not about looking on the bright side.
Seeing Through the Fog is about living well when you realize you can’t live forever. It is about having gratitude for each sunrise, birthday, and moment of knowing God more. It is about holding hope when circumstances hold pain.
With stories, wisdom and unique content distinct from the popular film series about Ed, Seeing Through the Fog will encourage readers in their own difficulties and give them hope for their future.