Over a year ago, friend, Catholic blogger and co-founder of KIDS (Keep Infants with Down Syndrome), Leticia Velasquez asked if I would be interested in contributing a chapter to an anthology of stories by parents of special needs children, A Special Mother Is Born. It was a book a couple of years in the making, and I agreed. I thought the title bemusing for a dad as contributor, but Leticia assured me that Senator Rick Santorum had contributed, as had Patrick Coffin. We three would be in the great company of some truly great women.
This book addresses one of the burning issues of our day. With prenatal diagnostics leading to the abortions of the less-than-perfect among us, with parents who are frightened into paralysis by these diagnoses and a medical establishment increasingly surrendering to the cowardice of eugenics, over thirty mothers and three fathers of special needs children have stepped forward to share their journeys.
If one is looking for a feel-good easy read, this book isn’t it. This book tells the story of fear, bewilderment, broken hopes and dreams, and the triumph of love in all of its raw and untamed beauty. It is a window into the human soul, into souls that have been forever transformed by children whose needs call forth what love demands most:
Sacrifice.
For those of us who have known the unspeakable beauty of being loved by another, we know that the love we have experienced has come at a cost to the one who has loved us. They have given us their time, attention; material, spiritual and emotional substance. They have accepted us with our strengths and pursued us in spite of our weaknesses–even because of our weaknesses. They have wrapped us in their love and esteem, and lifted us to heights we never could have attained by our own efforts.
That is the sort of love that flows through this book like a rampaging river, overflowing the banks that would contain it, and flooding the surrounding countryside. It is the sort of love that is desperately sought after in a world desperate for authentic love, and purpose, and meaning.
The stories in this book are the stories a frightened and weary world needs to hear, a world that has bought into the counterfeit culture for so long it mistakes love’s essence–sacrifice–with servility, and fails to see its reciprocity. Here’s a teaser from Chapter 13.
Mary von Schlegell is in her eighties and is the mother of Tony, who has Down Syndrome and is in his forties. Born in the age before the therapies that now advance these children as far as college graduation, the only word Tony has ever spoken is “Mama”. Here is Mary’s poem to her beloved son:
Tony
As you, my child, are the limitation
So are you the sweetest consolation of my life
And imitation of our Lord.
Clearer than all in my heart,
Your hands marked with the strange line
Raise, raise my compassion
Cling around my heart.
Oh beautiful, calm face
So small, so quiet beside me,
You have kept me from destruction
Oh how can we ever fathom
The strange economy of a loving God?
Why does our trust so often fail,
With salvation springing even here along our path?
Mary’s sentiment is shared throughout this book. Our special children have been our salvation. We perfect ourselves as humans to the degree that we empty ourselves for another. The movements of the parents in this book go from joyful anticipation, to shock and despair, to fear, and finally to the triumph of love and our personal salvation.
The children mentioned here span the spectrum of poor prenatal diagnoses and other challenges, from the trisomic conditions, to autism, to tracheoesophageal fistulas, to brain tumors, Type 1 diabetes, epilepsy, and ADHD.
There are the stories of the doctors who along with family and friends brought relentless pressure to abort, and of the resistance by men and women who felt the depths of betrayal, isolation, and abandonment in that relentless pressure.
Through it all, these are the stories of grace and triumph in the face of cynical abandonment and despair. These are the stories that needed to be told, that need to be heard, that need to be shared. These are the stories that medical students need to read and carry with them into their practice of medicine. So vital are these experiences to our physicians in training, that I will see to it that every medical student who wants a copy of this book will have one.
Next year, for the entire year of 2012, Medical Students for Life, in conjunction with the Family Research Council and KIDS will be hosting a series of medical, psychological, and services conferences addressing the many facets of treating patients with poor prenatal diagnoses and their families. We will be educating the medical students, resident physicians, nurses and the public in a series of live webinars and conferences in the treatment, care and therapeutic management of these special children, and how to advance them as far as technology and therapy will permit.
This book is already getting our year off to a jump-start with pre-publication orders and sales skyrocketing. Books may be purchased by clicking here at aspecialmotherisborn.blogspot.com
In this book, Leticia Velasquez has succeeded in tearing away the veil of silence surrounding the mounting eugenic pursuit of perfection in medicine, and in shining the light of truth on the reality that parents not only survive, but thrive as they pour themselves out for their special children. If we are to stop medicine’s slide into soulless oblivion, we must plant our flag on this hill and defend it at all cost.
Leticia Velasquez has done so, commandingly. The stories are so compelling that I could not put this book down and read it in one long sitting.
If there is one book that points the way forward in reclaiming a culture of life, this book is it. It is triumphal, but not at all in the way the world would expect. It needs to be read, and contemplated, and then acted upon. It needs to be shared and its stories celebrated. Most of all, it needs to be a source of strength and hope to other parents who are facing or will face similar diagnoses.