- Books, Literature, and Writing
Journey - The Book That Built My Advocate's Heart
The Massies' Journey Modeled a Beautiful Form of Advocacy for Me Prior to my Son's TBI
I was A Full-time At-Home Wife & Mom
When I was in the blossom of new motherhood I read Robert and Suzanne Massie's Journey, the book that changed my lite - although I wouldn't know it for another 15 years.
My third child, a daughter, received into a family with two sons (1) was an infant and I was the classical 60s housewife and mother, set apart from the majority only in my affection for the country life, and in my willingness to get involved in the home-building process.
After one year of university education I had opted for marriage. Now I felt enriched by family and home, and content to polish my domestic skills on our rural acreage.
Remembering is Powerful
As it turned out, I misremembered the story, but never let go of the rope of competency the authors imparted as they related their life experience as the mother, and father, of a son whose hemophilia claimed the focus of their lives. I related to the mother's voice, but this is also the story of the father's travails and triumphs, as both parents embarked on their journey of advocacy.
Journey filled me with excitement, wonder, and awe, as I read about those parents' concerted actions, coupled with their writing careers.
Although I had toyed with the idea of following my early high school journalism career (editor, advertising manager high school newspaper), and columnist for two local small town weeklies; and then a full-time job as display advertising layout designer for another small city semi-weekly, with a BA in journalism, I set my college plans aside shortly after my marriage. (2)
So, when I read about the Massies' early married lives, following Robert's Oxford fellowship and Suzanne's university graduation I indulged in some speculation about what it could mean were I to return to my journalism studies.
The Massies' Expectations Diverted
Suzanne attended Vassar, spent her junior year at the Sorbonne, and slid into editing at Time Magazine after graduation; Robert's Rhodes Scholarship saw him through Oxford, and he moved on to become a Naval Airman, after which even his stellar education couldn't prevent subsequent disruptions of what had appeared to be a brilliant career.
Unexpectedly, the young couple learned they were expecting, and their rich upbringings and educations strengthened their attitudes that their competencies would carry them through whatever the future wrought.
New parenthood wasn't diminished a whit by Robert's revolving door jobs. His promise held the security they expected to carry them through their early marriage, and to cement his career.
That belief turned out to be the smokescreen that blew away with the closing of his employer, Colliers Magazine. Still, the Massies were a resourceful and happy couple, with a joyful, adventurous tot.
A Couple of Warnings
A small sudden dark bruise on the child's upper arm recalled, for Suzanne, their son's very slow to heal circumcision scar which caused them but a small pause. This new sharp bruise surprised Suzanne enough so she was able to get her infant promptly seen by their pediatrician.
The giant ball had begun to roll down what became the tunnel of their lives, a ball from which they were always barely extricating their son. The ball's coating wore the faces and voices of steely-eyed, flat voiced specialists and their gate-keepers. At first they seemed constantly in danger of slipping just under the ball.
Robert and Susan moved through shock like an editor moves through the text they edit., probing, examining, sifting, searching, allowing themselves to strike from their minds the too-difficult constructs until they were prepared to examine them.
photos Â©Leslie Sinclair
My articles referenced above
2. My Life
Journey - by Robert Massie and Suzanne Massie
This tremendous story of the Massies' development as powerful advocates for their son who lives with the challenges of hemophilia infused me with the seeds of my own advocacy.
What Do You Think About Advocacy - such as that exemplified by Robert Massie and Suzanne Massie
Would you devote your life to advocacy, if calamity struck a member of your family?
Yes, I wouldn't consider any other option.
Journey With My Power Series Painting - a postcard photograph of one of my award winning paintings
My oldest son suffered a Traumatic Brain Injury one year after my return to university studies.
Robert and Susan Massie's stories of their journey into advocacy and beyond hovered in the recesses of my consciousness, as it does to this day. I embraced the position of mother-advocate more readily, because I had read this book.
In Journey the Massies began as novices, researched and pondered the what ifs of causes and solutions, raised their son, and a daughter, and shared their newfound expertise with policy makers and the public.
From the model of their dedication I drew strength to learn about TBI, to question, to research, to connect, and to suggest solutions, to professionals in fields beyond the medical realm, and I have been fortunate enough to deliver a strong testimony that changed public law.(3)(4)
The little booklet to the left of Journey is where I jotted down notes and thoughts in the first couple days of my son's TBI coma. Soon I bought a weekly format journal and have kept one for each of the 24 years since that injury.
The memory of the impact of Journey on me has informed many of my activities throughout my life, especially when confronted with an especially challenging situation. (5)
My Articles Referenced Above About My Advocacy
The Young Massie Advocates' Early Home
This humble home was filled with dedication and action, while the young parents used every ounce of intellect and initiative to explore and implement much of the latest findings regarding the management of hemophilia.
They located and obtained the services of physicians whose dedication matched their own. One doctor was himself the father of two sons living with the condition. Their stories of those practitioners also encouraged me to pursue my journey of advocacy.
My University Home During the Beginning of my Advocacy
My 2-bedroom studio sat just a block from the university Art Department and my painting studio. It was to this small home that I returned following each week of advocacy in the medical center, 100 miles to the West, where my son remained hospitalized, or in a treatment program in the urban region.(6)
My Comprehensive Website With My Blog & Early Art
Help Me Thank Robert Massie & Suzanne Massie For Sharing Their Story of Advocacy
My wish has long been to meet my models for advocacy for their child living with huge medical challenges, as an expression of my gratitude.
I met them through their writing. Their words moved me to awe, when I was a young mother. They moved me to action when my oldest child was 21-years old, and a university senior with only two quarters remaining, and he suffered a TBI.
Without their model of instant activation I may have let the winds merely carry me along and given my son's care to others.
Say Thanks to The Massies - on behalf of mothers of children with special needs
Please Thank God for Robert and Suzanne Massie's book Journey.
I am ready and willing to say the prayer of thanks for these two parents' modeling of advocacy for a child with special needs.
Video Presentations on Hemophilia
Links for Further Information
- Suzanne Massie
This is Suzanne Massie's own website.
- Robert Massie
Wiki's page on Robert Massie.
- National Hemophilia Foundation
Join the foundation and avail yourself of their resources.
- Wiki's List of Hemophilia Organizations
Large resource for locating the organizations that will best serve your needs.
- World Hemophilia Organization
For professionals and individuals and organizations.
Understanding Hemophilia Video
Persons who live with hemophilia share their means of living lives of meaning and dignity.
The Bleeding Disease: Hemophilia and Consequencesress - of Medical Prog
Stephen Pemberton presents a broad spectrum view of hemophilia and treatments and risks of utilizing the most modern methods.
Valuable Textbook on Hemophilia
Valuable information about the condition, this is a thorough text for the clinician and for those patients who thrive on knowledgeable actions.
Current and Future Issues in Hemophilia Care [Hardcover]
Developments, treatments and complications of the condition are well covered in this book.
Living with Haemophilia
This is the book for families and persons for whom hemophilia is a matter of daily life. Comprehensive, with real-life information, physicians and other treatment professionals also benefit from such enlightening information.
Survivor: One Man's Battle with HIV, Hemophilia - and Hepatitis C
Tainted blood infusions infected the author, who lives with hemophilia, with HIV. He was a youth and felt like he had just received a death sentence, and he fell down the path of inebriation and the hard drug life. Finally he grasped a handhold on life, and realized a fine career, making a rich life, and he shares his story here.
Rich history of the condition of hemophilia. Replete with photographs and illustrations and further technical data and citations.
Pooling Blood: A Journey of Two Girls with Hemophilia - and their parents' struggle to keep them alive
Reviewers find this an extremely valuable book, the personal stories of struggle and innovation, as the parents encounter life's biggest questions, and give abounding love to their daughters.
Hemophilia - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
For professionals, for medical students, and patients, this volume is a reference for medical terminology, treatments, and comprehensive citations.
Additionally valuable for teaching readers to access up-to-date medical advances in the treatment of hemophilia.
Nicholas and Alexandra - about the young Tsarevich Alexis by Robert Massie
This book enlivened my imagination as I read it during my years on the land, raising country children. It was my first, and most stunning, introduction to hemophilia's effect on a family's life. A great read.
Handbook on Hemophilia and Other Bleeding Disorders
This handbook answers all your practical questions about hemophilia. Lists treatment options and includes comparison of costs of various measures.