The opening pages of a new book, "Shelter from the Storm: Caring for a Child with a Life-Threatening Condition," set a somber tone: "If you're reading this book, it's. . .because your child has a life-threatening illness or injury."
Yet parents, siblings and other caregivers who read on will find something that, until now, has been missing in pediatrics. "Shelter from the Storm" offers readers guidance about dealing with the confusion, feelings of helplessness and grief that can occur when a son or daughter faces traumatic injury or serious illness. "It's always a horribly difficult time, whatever the outcome,the child's suffering and helplessness, the uncertainty, the hopes, the fears," write the authors.
The book is co-authored by Joanne M. Hilden, M.D., and Daniel R. Tobin, M.D. Dr. Hilden is chair of pediatric hematology/oncology at The Cleveland Clinic Children's Hospital; Dr. Tobin, a nationally recognized leader in end-of-life care, is director of The Life Institute, an educational organization whose mission is to develop and implement programs in advanced illness and end-of-life care. He also is the author of " Peaceful Dying."
Guidance for parents
The authors offer details about what to expect when a child's life is threatened by injury or disease. For instance, the book provides guidance about asking doctors for honest answers regarding a child's prognosis and treatment options, talking with a child about the illness or injury and reassuring fearful siblings. The book also implores parents and other caregivers to care for themselves. The authors suggest a system that parents and caregivers can work within as they approach each day of their child's health crisis. This system helps guide them through the emotional upheaval of shock, sadness, guilt and anger that the crisis so often brings.
"The first step in making your decisions is to obtain good medical information about the condition, the prognosis, treatment options and the consequences of those options," write the authors. Doctors do not often provide medical explanations in layman's terms, the authors explain, adding to the frustration and helplessness many parents experience.
Dealing with death
While many parents hold hope that their child will recover, many children will not. For those facing such tragedy, "Shelter from the Storm" offers parents and caregivers a sympathetic, yet straightforward way to face the next step, dealing with a child's death. Chapters entitled: "Coming to Terms," "Your Spiritual Mindset" and "The Turning Point" provide strong advice about prayer, building a strong support system of family and friends and striving to make lasting memories while the child is living. This could include taking photographs, writing poetry and drawing pictures.
On the importance of a strong support system, the book says: "You are probably saying,have said many times,I can't do this. Now you need to change the sentence: 'I can't do it alone.' Accept the fact that you will need help to get through the days that are coming."
Helping manage symptoms
The authors also offer guidance on how parents can monitor their child's symptoms and help manage symptoms in partnership with physicians and nursing staff. The authors offer guidance on how parents can approach the wrenching task of "letting go" in the aftermath of death. They review important options parents may consider, such as allowing a child to die at home. They also prepare parents for what death looks like by discussing the possible physical changes a dying child may undergo, such as swelling, discoloration, seizure, loss of appetite and thirst.
This small book is a powerful and elegant instrument of both hope and personal salvation in a time of great family crisis. As the authors advise about the journey of caring for a sick child, "The more prepared you are, the more torment you'll be spared."
The Cleveland Clinic hosts an array of support and educational groups, including groups for family members dealing with loss or grief. For a complete listing or for more information visit: www.clevelandclinic.org/health/support/support.asp or call 216-444-3771.
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