A BOOK REVIEWER
A BOOK FOR REVIEW
THE NEW SOCIAL WORKER ONLINE
Journey With Jake
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. Jakes 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, Jakes 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 sons condition is critically serious and incurable.
In an effort
to understand and deal with Jakes 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.
her son with all the love parents hope to have for a childa
love so intense and constant we are unaware we have the capacity
for it until we experience it. She makes it clear that Jakes
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
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 Jakes 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 deatha 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 Jakes 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
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. Edelsons 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 Jakes care; she is his advocate.
So, My Journey
with Jake is more than a chronicle of Edelsons 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.
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 uniquethat 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.
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 childs chronic illness from a parents
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.
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.
Adele Crudden, Director of the Social Work Program at Mississippi
appears in THE
NEW SOCIAL WORKER,
Vol 8, No. 4, Fall 2001.
© 2001, 2002
White Hat Communications