Chronic Hope: Raising a Child with Chronic Illness with Grace, Courage, and Love

by Bonnie O’Neil, Gary Scheiner (Foreword)

Chronic Hope is a long drink of cool water for the parent thirsting for practical wisdom in navigating the emotional stress of raising their chronically ill child. Leaning on Bonnie O’Neil’s personal experience as a caregiver Chronic Hope delivers practical insight and solutions while avoiding the tone of a typical self-help book. Instead, it reads like a conversation with a friend, where one parent’s stories give the other parent permission to feel the full range of their emotions and encourages them to discover hope in the long journey. Readers witness Bonnie's mistakes and missteps, glean from her revelations, and find inspiration in the principles and attitudes she begins to apply to everyday situations. Through story and reflection, Bonnie gently shares a vision of navigating chronic disease with strength, resilience and loving self-sacrifice. Chronic Hope leverages one family’s journey raising a child with chronic illness and provides readers the tools necessary to process their own emotional responses to the unexpected path ahead of them. Thematically, Chronic Hope begins deep within the heart of the caregiver and gradually works itself outward into each relationship within the family, and eventually into the wider world. Chronic Hope offers a fresh vision of hope in the darkest valleys of illness, suffering, and broken dreams.

224 pages, Paperback

Published April 13, 2021

About the author

Bonnie O'Neil is an author, advocate, and inspirational communicator who is passionate about restoring hope to hurting people. She has had a front row seat to the stress of raising a child with chronic illness, as her son was diagnosed with type 1 diabetes (T1D) at age 5 and two of her siblings were diagnosed with T1D as children. Bonnie is deeply connected within the T1D community as a leader, writer, and speaker who inspires others to pursue their own journey of hope.
Bonnie is a spiritual director, the Executive Director of Alpha Mid Atlantic, and lives in suburban Philadelphia.

Reviews

[Janis · Rating 5 out of 5]

Reading Bonnie O’Neil’s excellent new book, Chronic Hope was both hard and easy for me. It arrived in my mailbox today and I was thrilled to see it in paper since I am a print book reader and had read a digital advance copy.
It was hard to read because it brought back so many memories for me about raising a child with a chronic disease. Our daughter is now an adult who takes care of her disease, Type One diabetes, all by herself. So, the book was hard for me because it brought back so many memories of how I felt when she was a baby of 13 months and couldn’t talk about how she felt when her blood sugar was low. We used guesswork a lot in those days because only urine tests were available to estimate sugar levels, now measured by simple at home blood tests, or miraculously a Continuous Glucose Monitor (CGM). It was hard because I remember how letting her grow up and go to school, on overnights, camp, teen tours, college, Europe, and get married were all milestones that I couldn’t imagine when she was diagnosed in 1976. It was hard because I remembered all the times when I wasn’t with her when she had a low blood sugar and she had to depend on friends who didn’t totally understand the disease. It was hard because I remembered the time my daughter’s insulin pump ran out of insulin while we were at the funeral of her camp director, who later died of complications of diabetes and who had two children with diabetes. It was hard because I know that Bonnie has experienced all of these anxieties that I have had, and it was hard to again realize that caregivers have so many balls in the air as they try to normalize a life that is far from normal and they and their child walk on a constant tightrope of food, insulin and exercise.
Bonnie’s book was EASY to read because of her sincerity, her openness to talk about how she was dealing at each stage with her son’s diagnosis, and because Bonnie’s style of writing lends itself to letting the reader realize that there are lessons about Hope to learn from her no matter what chronic disease you have in your home. Bonnie reminds us of the importance of educating your child about their condition while they are growing up, not just being the caretaker.
The way the whole family is affected is an important aspect of Bonnie’s story. Are the other children feeling they are being neglected when so much attention is being given to the one who has the illness? How does the marriage survive a child’s diagnosis? Nothing is taboo in Chronic Hope. Take this book to heart and discuss it with your family. Give it to a friend who is struggling to see HOPE in a time of crisis, or who has emerged on the other end with new insights to what really matters in life. Find Chronic Hope!

[Laura · Rating 5 out of 5]

Sharing her experience of parenting a child with a chronic illness (Type 1), the author exudes gentleness and grace so I felt very befriended and comforted by her writing style while still being motivated by her words to think deeply about huge issues. The best part was realizing that someone else out there understands what it means to survive each day caring for and raising a child with T1D. Trigger warning that the possibility of death in a child with Type 1 is discussed since her brother died at age 8 from DKA from Type 1. She speaks of the chronic exhaustion, the awkwardness felt when tagging along at birthday parties, etc to help a young type 1 manage, the grief you feel for what your child endures, the feelings of failure felt by you or your child when the medical complexity causes labs/numbers not to be what you or the doctor hoped, the challenges of saying the right words so your child feels encouraged and so so much more. If you are looking for a specific list of suggestions to solve each issue, this is not the book for you but if you are looking for a book to gently examine issues and nudge you to encourage more, to focus more on your attitudes and less on achievements, then this is the book for you. I found myself setting aside my book mid-passage so I could text my daughter just to tell her a few ways I think she’s amazing. It does bring up plenty of emotions so I did read it without my children around and just a chapter or two at a time. The quotes at the beginning of each chapter are beautiful (Tolkien, CS Lewis etc). She also tackles some challenging issues that will resonate with most caregivers of those with chronic illness: the child’s frustration with life not being fair, of sibling jealousy, of possible resentment felt toward your spouse or others for not fulfilling your expectations of how they should fulfill their caregiving responsibilities or saying/displaying emotions/sharing the same emotions as you. There are also wonderful thought-provoking discussion questions at the end of each chapter called “Heart to Heart” such as “How has chronic illness isolated your child from her peers? Her siblings?” and “What aspects of your home life draw attention to the differences between your child with chronic illness and the rest of the family?” and “What changes might you make to bridge the gap so your child doesn’t feel so different?” Wonderful writing. I especially loved her writing about hope in the final chapter such as “To live in hope is to hold the circumstances of our lives loosely in our outstretched hands, without demanding life conform to our carefully ordered view of things. Hope is the steadied assurance that no matter how things turn out, we will be okay.” She tackles huge issues with a gentleness that feels soothing to the reader even while pointing out areas for us to improve as caregivers…not an easy undertaking but so well executed here. The only tiny little plea I would make is I hope if there are subsequent editions, that she would consider changing her wording about sleep in the chapter on Resentment (p128) “I remind myself that I could go back to bed once the children are at school, but I know I would never do that. It just feels wrong to me. Like it means I’m lazy, or not being truly myself, like the disease has won.” While of course she is entitled to write her opinions however she pleases, I feel that in a book written for an intended audience of caregivers to those with a chronic disease, sleep deprivation during nights can be a huge issue (which she does write about) and as someone who also struggles with guilt of taking a nap after a night of constant blood-sugar watching, I selfishly wish she had added a sentence saying that self-care is actually ok, that you don’t need to feel “wrong” about catching up on sleep when you can no matter what time of day it is. On days that I am not working outside the home and have taken the time for a nap, I have been astonished at how quickly I fall asleep and for how long. Sometimes exhausted bodies just need sleep, even though I wish we could stay awake all night and all day for many days in a row! Anyway, that is a tiny negative in a HUGELY perfect book. Well worth the read and I’m sure I’ll be re-reading it too. My book already has much underlined and I’ve taken notes to refer to as needed. So thankful to this author!

[Ginger · Rating 5 out of 5]

This is a valuable and needed book, not only for those who have a child with chronic illness, but for anyone who has ever loved and cared for any child or family member. The author’s wisdom has credibility from her lived experience. She describes her own journey with vulnerability and grace. The particulars are specific, but the discoveries and truths are universal. I highlighted much of the book, including nearly the entire last chapter. Many of the struggles with control are relatable to everyone. The message of hope, and how it is earned, has never been more needed. Furthermore, this book gives me even greater empathy and admiration for the courage of all parents and the resilience of children with special needs and chronic illness. This is a beautiful and powerful book. (ARC provided by the author)

[Jane Cammarata · Rating 5 out of 5]

Not everyone has a child with diabetes but many of us have a family member who suffers from something. Chronic Hope is a book for all of us. My aunt suffered severe dementia and other family members have experienced acute depression, anxiety, and ADHD. How do we respond to these uninvited and unwelcome turns in our lives? It is easy to feel guilt, isolation, hopelessness, and fear. Unlike a typical self-help book Bonnie O’Neil does not try to teach us exactly what to do but opens us up to embracing what we have. Through very personal stories of successes and failures she encourages us all to fight with dignity, courage and most importantly hope. And best of all she helps us realize how important it is to share those feelings with our family and work through the process of accepting and enjoying our lives together.

[Marilyn McEntyre · Rating 5 out of 5]

These brave, engaging accounts of daily raising a child with Type 1 diabetes will resonate for anyone who has had to keep long watch with a beloved vulnerable person. With frankness about the daily stresses, the bewilderments, the steep medical learning curve, the emotional costs and the winding spiritual path chronic illness traces, the writer recounts her own story as an invitation to readers to reflect on whatever similar challenges life has given them. Primarily addressed to other parents, each chapter concludes with questions that reflect the remarkable multidimensionality of the writer's own deep awareness of her needs, her child's needs, and the pitfalls to be avoided--and occasional delightful surprises to be savored--in a life not only of chronic illness but, as the title eloquently reminds us, of chronic hope.

[Pam · Rating 5 out of 5]

Bonnie O’Neil’s book captured my heart and opened my eyes to the daily hardships of raising a child with chronic disease. If it hasn’t been your life experience, it’s difficult to understand or know how to help your loved one who is in the trenches, day in and day out. Bonnie gives her readers a deeply personal and at times raw picture of the challenges and unspoken emotions and thought processes of parents who have a child with a chronic disease. While she invites her readers into what are often isolating, guilt-ridden or fear consuming personal life scenarios, she does not linger there too long. With profound wisdom and compassion, she leads them to embracing the power of hope expressed through love and faith.

[JC Fisher · Rating 5 out of 5]

For parents of children with a chronic illness, Chronic Hope offers understanding and support through the different stages of life. It also offers the same understanding and support to anyone who has ever felt a lack of control over part of their life, no matter the cause. Bonnie O’Neil writes about feelings of spiraling, lack of control, fear, and guilt which are all intertwined and can quickly rise to the surface when faced with these life challenges. She offers her readers a way to search for Hope and to keep moving forward during emotionally difficult times.

[Jillian Bair · Rating 5 out of 5]

This book is incredibly validating and encouraging for any parent struggling with the burden of caring for a child with chronic illness. The author eloquently shares her struggles and the hope which enables her to move forward every day.

[Christine Deeths · Rating 4 out of 5]

Very real. Written from a real place about real issues. I actually bought it to help me teach a lesson to my class. That weekend my own child was diagnosed with diabetes. The feelings are very real. I suspect I will come back to this book again and again.

[Renetta Reeves · Rating 5 out of 5]

This book speaks to all parents, family members and friends of a child with a chronic condition, no matter where they are on the journey. Bonnie brings a comforting voice of hope to the pain, fears and questioning that come with a diagnosis of a long-term condition. She honestly tells of her own struggles as well as being sensitive to those of her son, husband, and other children. This book can mentor to many who need to know they are not alone in their struggles. I highly recommend this book to read over and over as new life challenges arise.