Ryan Maxwell

Ryan’s Story

“…Ryan has brought much joy and has lived a happy life.”

Ryan Maxwell, 4/11/1990, Partial Trisomy 12, Webster Groves, MO

DearRyancover-FinalcoverOur journeys as mothers begin long before we hold our babies. After 3 painful miscarriages, I had finally made it to the fifth month of pregnancy. I think I symbolically held my breath until then, not quite believing the baby would make it since my previous 3 had not. It was then that I found out that the baby was a boy. Somehow that made him more real to me. I began writing letters to him in a pregnancy journal, thus beginning “Dear Ryan …” Throughout his life, I kept journals and wrote stories chronicling our lives together navigating our medical, educational, and daily struggles, along with the joys.

Ryan has an extremely rare chromosome disorder called Partial Trisomy 12. When he was born in 1990, Partial Trisomy 12 was not even listed on the National Organization of Rare Diseases. There are only about a dozen known instances in the medical literature, and they are all somewhat different. So, Ryan is essentially the only one with his particular trisomy disorder. As with most trisomy disorders, Ryan has moderate mental delays and several physical handicaps. But, also common to most people with trisomy disorders, Ryan has brought much joy and has lived a happy life.

A couple years ago, I began compiling my letters and stories in order to share with other families struggling with their rare and unique disorders. The book takes the reader on a journey through our lives from that first Dear Ryan letter until the present. I share the roller-coaster ride through life, the ups and downs, the tears, the laughter. We navigate the special school system, American medical practice, government agencies, and even the struggle with a law suit on behalf of disabled adults against an illegal policy taking benefits away from those who are most vulnerable in our society.

The book is called Dear Ryan: Letters, Stories, and Reflections Sharing the Dance Through Life with a Handicapped Son. It is available wherever books are sold or borrowed. It tells the complete story of our journey with Ryan, which I am happy to say is continuing.

Here is what the editor had to say about the book:

Raising a child is never easy. Raising a child with a disability shared with virtually no one else in the world…is a bit more challenging. It is the author’s profound hope that everyone, whether living with a child with disabilities or not, learns that with hope, courage, faith and a large dose of humor anything is possible. This non-traditional memoir takes readers through the author’s life using journal entries, reflections, stories and facts. The frustrations, fears and joys of her journey with Ryan illustrate the desire of every parent—to raise a child in the best, most loving way possible. This book is meant as an emotional and practical resource for those who care for and love someone with a disability. Although, truly, it is a book for everyone.

Here is what others had to say:

In this book, it is great to see writing from several perspectives that I
think will be very useful for parents and professionals alike.
— Garrett Burris, M.D.

“I read the book twice and enjoyed it very much. I learned so much
about Ryan and the journey his family has experienced; much more
than I did in my role as an orthopaedic surgeon. I think this is an important
story that needs to be shared. It gives perspectives to physicians,
therapists, social workers and legislators who very much need this sort of
information and feedback.”
— Enrico Stazzone, M.D.

“This book is a must read for any family raising a child with special
needs. Theresa shares how important a mother’s intuition is from the very
beginning and that both mothers and fathers have insight that should not
be minimized by doctors and other care givers. Theresa’s message of hope
and perseverance is so heart-felt that it will inspire everyone, especially
families caring for those with special needs.”
— Heidi Pelant Gioia, WHNP-BC
(Woman’s Health Nurse Practitioner, Board Certified)

“Dear Ryan, is an intimate account of a mother’s odyssey with her handicapped
son through heart-felt letters. Theresa’s book is filled with faith in
uncertainty, unexpected joys and the bravery of a mother advocating for
her child. As a mother, myself, I stand in awe of her strength and honesty.
A gem of a book!”
— Amy Inman, Founder-MemoryBox Films and Mother

“I was not able to put the book down. It is amazing.”
— Maggie Weik, author, Special Needs Adoption
Advocate, and mother of 10

“This remarkable and faith-inspiring journey takes us through the gamut
of human emotion: The inexplicable bond between a mother and her
child, epic challenges, and, ultimately, the ongoing triumph of faith and
unconditional love!”
— John Wargacki, Associate Professor of English,
Seton Hall University

“Dear Theresa has given our dear Ryan a voice that encourages families
navigating the difficult but enriching journey with a disabled child from
pre-birth expectations to adulthood. Her experiences provide valuable
guidance for maximizing a loved one’s potential, whatever age or challenges.
Theresa shares her story in a non-traditional way demonstrating
her strength, wisdom, patience, humor, and a cheerful heart.”
— Susan M. Hofmann, P.T.

“Enthralled from the first page, I was skillfully led on an emotional journey
of a very special boy’s influence on so many lives, and then I finished
feeling only joy and happiness!”
— Brian Mutsch, Lieutenant Commander, U.S. Navy

“This book is not just for parents of children with disabilities, it is for all
parents. Actually, everyone needs to read this book!”
— Patricia Held, mother of five, grandmother of 13,
great grandmother and great aunt (“Gigi”) to many more.

“With brilliant insight, humor and love, Theresa Jeevanjee provides us
the moving opportunity to witness the ultimate joy that comes with being
the mother of a special needs child. For everyone who has known love,
this is the gripping reminder of what makes life truly important. Don’t be
surprised when you catch yourself binge-reading!”
— Nancy Verde, Director of Advising, Fontbonne University