My Journey With Jake

reviewed by Adele Crudden, Mississippi State University

My Journey With Jake: A Memoir of Parenting and Disability, by Miriam Edelson (2000). Between the Lines: Toronto, 176 pp., $24.95.

All tales of parenting include joy and heartache. When we learn of the birth of a child with a severe and chronic health problem, we understand at an intellectual level that the family will experience joys and heartache, but imagine the heartache outweighs the joy. Miriam Edelson does an outstanding job of describing her joy and heartache as she cares for her son, Jake, born with lissencephaly, a rare brain condition that negatively impacts physical and mental development and shortens life expectancy.

After an uneventful pregnancy, Edelson experienced an unexpectedly difficult delivery. Jake had respiratory problems requiring a ten-day post-delivery hospital stay, including a stint on a respirator. But his parents believed his condition was temporary and would be resolved without repercussions. Jake’s parents learn the seriousness, but not the specifics, of his condition in a brief telephone call when Jake is eight days old. It is weeks later, in the middle of a hospital emergency room corridor when, surrounded by medical students, Jake’s parents learn his diagnosis from a doctor they have never seen before. Persons with healthy children can only imagine the shock and sorrow they experience upon learning their son’s condition is critically serious and incurable.

In an effort to understand and deal with Jake’s medical condition, Edelson makes phone calls, reads books, gets on mailing lists, searches the Internet, signs up for services. She copes with feeding problems, juggles therapy appointments, and tries to recover from a lengthy delivery that ended in a C-section. She applies for in-home care, is the subject of a home evaluation, then deals with an ongoing parade of service providers. Edelson learns what it is like to see her infant son have a seizure, to rush him to an emergency room, have him admitted to be poked and prodded by medical students, and finally, discharged, with the seizures still uncontrolled. And Edelson relinquishes the fantasy of her dream child, her healthy child, and accepts her son for who he is.

Edelson loves her son with all the love parents hope to have for a child—a love so intense and constant we are unaware we have the capacity for it until we experience it. She makes it clear that Jake’s chronic health condition does not alter that love. And it is with love that she begins and maintains the process of making decisions for Jake and his care, including the very painful decisions to provide palliative care only and to place him in out-of-home care.

Jake’s family is fortunate enough to locate and have him admitted to an outstanding group home for medically fragile children. However, this placement is not without faults. It is a considerable distance from his home and transportation for Jake’s home visits and for his family to visit him are difficult. Jake experiences periodic bouts with life threatening infections. While his parents make the time to be with him both during times of crisis and calm, they experience the inevitable stress of loving a child who has frequent brushes with death—a child who cannot live with them because the level of care he needs is so intense.

The Edelson family goes on living. They adapt. Both parents return to work. They establish rituals to celebrate Jake’s life. They have another child. But the toll of the accumulated stress becomes apparent. Edelson experiences stress-related mental health problems and frankly admits her moments of despair, her feeling of entrapment, and her grief. Her marriage dissolves. However, she gains insight from Jake regarding her own capacity for love and care-giving and finds support in places she may never have otherwise sought it, including parents of other children with special health care needs.

My Journey with Jake is an example of what most families, with the possible exception of those with unlimited financial resources, would encounter if they had a child with a chronic health condition. The network of services available to families is not coordinated, is sometimes unreliable, and is constantly threatened by budget cutbacks. Families are forced to make decisions they should not have to make. And policy makers pit families against each other to fight over meager resources. Edelson’s career as a labor union employee gives her a unique perspective and ability to articulate these struggles. Her work experience has also trained her for a vital role in Jake’s care; she is his advocate.

So, My Journey with Jake is more than a chronicle of Edelson’s personal experiences with her son. It is an examination of the health care system for chronically ill children. The Edelson family lives in Canada, so the specific services and policies they encounter are different from those encountered by U.S. parents. However, core issues remain, i.e., out-of-home placement vs. a patchwork of community services, where to draw the line regarding medical care, transportation problems, balancing time with a sick family member with career and other children. These issues are fraught with emotion and influenced by religious beliefs.

Parents whose children were born with or contract chronic health conditions will find this book particularly helpful as they strive to understand what is happening to their family. Other parents may find comfort in knowing that their struggle to make sense out of what is happening to their family is not unique—that other parents experience tumultuous feelings, face painful decisions about caring for their children, and have to make decisions about jobs and allocation of time and money. Yet Edelson affirms all that is right about the parent having control of these decisions.

Social workers will find that this book provides a plethora of information at a number of levels. It is an excellent text to include in social work education, as it illustrates concepts from social work practice, policy, diversity, health care, and human behavior and the social environment. My Journey with Jake gives social workers an understanding of the impact of a child’s chronic illness from a parent’s perspective. Social workers will see a number of strengths, as well as met and unmet needs encountered by the family. The impact of policy decisions is infused throughout the text. Ethical issues, such as decision-making power about medical intervention or the responsibility of our society to provide care for sick children, will provide a basis for thought and debate within our profession.

Edelson should be commended for sharing her journey with us, for reminding us that families with children who have chronic health conditions experience joy and love, not just heartache. She reminds us that the policy decisions our society makes affect the lives of our neighbors and friends, that we are all in this together. And because Edelson is such a gifted narrator of this journey, we will read this story and say we now share her joy and her heartache. Good luck to Jake and his family.

Reviewed by Adele Crudden, Director of the Social Work Program at Mississippi State University.

This review appears in THE NEW SOCIAL WORKER, Vol 8, No. 4, Fall 2001.

© 2001, 2002 White Hat Communications