With all of this in mind, my father and mother arrived on a lazy fall afternoon and prepared to venture into unknown territory. I was nervous. This time around, I really wanted it to go the way Blaze wanted it to go.
I ordered a pizza.
Blaze was excited. When I looked over at him I could see that he was already halfway there, heading back to that place between floating sleep and conscious awareness.
I began by placing a pillow under my shirt and sitting on the couch. Blaze sat off to the side, unborn, watching. My father narrated.
“Now, Blaze,” he began, “when you were born, you came out gasping. Let me show you how.” My father sat down next to me on the couch, leaned over, and put his head in my lap. When I looked down, it was my father’s face I saw staring up at me.
“Uh, Dad,” I interrupted, uncomfortable, “this is getting a bit too Freudian for me.”
“Yes, it is,” my father said warningly, “but you’re going to have to transcend your own neuroses for a minute and focus on what we’re doing here.”
I conceded reluctantly and my father demonstrated how Blaze panted at birth. I waited, anxious to get that part over with. Blaze watched, entranced and soundless.
“Now this time,” my father continued, “you’re going to come out when you’re ready and you’re going to take a deep breath and cry really loud. Okay?”
Blaze nodded in assent.
“Okay,” my father said, “here’s Mommy getting ready to have you. There you are inside her tummy.” I made some noises indicating that I was in pain. It was no joke—I was having visceral memories of labor. “It’s time to come out,” my father said, “but wait until you’re ready.”
I made more noises. I started to sweat. I turned to my mother. “Why didn’t you tell me it was going to hurt like this?” I asked her again. I never was satisfied with her answer the first time around. My mother looked at me somewhat disdainfully and said, “Don’t start with me now.”
“Mommy’s in pain,” my father went on, “and she wants to see you. Are you ready?” Blaze shook his head. I was finally starting to get it. He would never be ready. He didn’t want to come out then and he didn’t want to now. Minutes passed as I continued approximating labor.
The doorbell rang.
For the first time ever, a pizza deliveryman had arrived early. My father huffed, annoyed by the interruption, but Blaze didn’t stir and didn’t lose one iota of his concentration while the man was paid and sent on his way and the pizza was deposited on the kitchen table.
“Mommy’s still waiting,” my father picked up. “Are you ready?”
It seemed to me that Blaze might stay in his nether state indefinitely so I started “pushing” and pulled the pillow out from under my shirt. He’s just going to have to come out and face it, I thought. Again.
“Look!” I shouted. “Here he is!”
Blaze moved over to me and placed his head on my stomach. When he looked up at me, I was startled by what I saw in his eyes. That look was exactly the same as it was the moment he was born. Once again, I could feel the tears starting.
“Cry,” I told him.
“Cry!” my father shouted.
Blaze made a scratchy, strangled sound.
“Louder,” we urged him. “Take a deep breath. Louder!”
It took Blaze three tries to let out a wail. I could see the struggle within him and was awed by the strength it must have taken for him to get to that level. We held our breaths, waiting to hear evidence of his. Finally, he burst out with a long, solid cry.
“Good, Blaze,” my father said. “Good.”
Instinctively, Blaze snuggled close to me and I cradled him as if he were a newborn once again. “How did that feel?” I asked him.
“Good,” he said. “It felt good.” He was grinning widely. I’d rarely seen him look so happy and contented.
We were all very pleased with Blaze’s reaction and the fact that he seemed so reenergized. We were also completely wiped out. I couldn’t help but think that our exercise was the sort of thing that had don’t try this at home written all over it.
We ate pizza together, all of us unusually quiet and subdued. The big smile on Blaze’s face never wavered, but he was mostly silent, drifting through that long-ago place from where he’d come. It was similar to when he’d been born, but different in a very important way. Back then, Blaze was physically present, but barely with us in spirit. He was an active participant in his life now and willing, in a very real way, to give it a go. I could only hope that whatever healing had come from his rebirthing would be enough to sustain him into the future.
My parents went home shortly after we finished eating, citing emotional exhaustion. Soon after that, Blaze started wheezing and became asthmatic. Once again, he was struggling for the breath he’d been denied at birth. It was only then that I realized how very important the event had been for him and how important it had been for me.
But he was breathing and, finally, he’d had his chance to cry out loud.
I had been given an extraordinary luck with this boy, I thought then. Twice, he had shown me the life and intelligence in his eyes. Twice he had given me a glance right into his soul.
When I was about seven or eight years old, I read and loved a series of Finnish fantasy novels in which the main characters are funny-looking creatures called Moomins. In my favorite story, the creatures find a magic hat that transforms everything put into it. Moomintroll, one of the main characters, hides under the hat and emerges as an unrecognizable version of himself. None of his friends know him in this form and everybody starts to treat him like an imposter and an intruder. In despair, Moomintroll beseeches his mother to tell his friends that he is the real Moomintroll. His mother looks deeply into his eyes and it takes her a minute because he really does look entirely different. Finally, though, she sees her child in his eyes. As soon as she acknowledges this, Moomintroll is transformed back into his usual form and his mother assures him that, whatever happens, she will always know him.
The story made a huge impression on me when I was a child and I never forgot this scene although it would be years before I really understood its practical implications in my own life. This is the way it is for me and my son. I will always know him. And I believe that he chose to come to me for that very reason.
I know that Blaze’s birth was traumatic. Anyone who was there could have testified to that. Although I wished it could have been easier for him, I assumed, at the time, that all births must be traumatic. It’s the nature of the process, after all. Who, in his right mind, would trade an existence of swimming in protected warmth for the cold, bright gravity of the world?
What I didn’t understand then was what it could mean, on a deeper level, to have been born strangled. Perhaps if I had known that such extreme birth trauma could pose lifelong problems, I could have done something sooner to counter the effects. Perhaps I would have done nothing. I will never know.
I do know that I’ve searched for meaning in other places: with psychiatrists, teachers, counselors, advocates, and doctors over the years. Along the way, I’ve filled out countless medical history forms for Blaze, all of which ask about his birth. The questions are always the same:
Was the pregnancy normal?
How long was labor?
Complications?
Cord around neck? How many times?
Did baby need oxygen at birth?
Apgar scores?
There are answers to these questions, but none of them reveal any true meaning. In the end, meaning is found in faith. Blaze has taught me about faith and about so much else. In that first moment in the delivery room, and now, and in countless moments in between, Blaze himself has provided the answers—answers to questions that never get asked, but should be—answers I’ve been increasingly unwilling to share in the uncompromising glare of science and medicine:
Did your baby look at you at birth?
Did he show himself to you?
Did
you see his soul?
Could you hear it singing?
AFTERWORD
In many ways, Raising Blaze was a difficult book for me to write. For one, most of it was written during a particularly challenging time for Blaze in terms of school and social adjustment. It was not easy to keep perspective on the events of Blaze’s early years while actively dealing with the consequences of those events. On an emotional level too, this was a tough book. Writing authentically about Blaze’s birth and the years that followed necessitated reliving some of the darker moments in our lives, as well as the times of triumph and joy. However, while challenging, these were surmountable obstacles. What wasn’t quite as easy to put aside was the nagging feeling that, despite my proprietary rights as his mother, I was objectifying Blaze for public consumption and thus invading his rights and his privacy in a fundamental way. The obvious question, then, was why write this book at all if, at some point down the road, Blaze (or anyone else, for that matter) might see it as exploitative?
Aside from the fact that I saw our story as compelling enough to commit to paper, the answer to that question was that I had never found a book like this myself, although I’d been searching for one for many years. I spent most of Blaze’s school years feeling entirely alone and adrift, although I suspected there were many others who were, if not in exactly the same boat, experiencing a similar situation. Unfortunately, the very nature of being “different” is that it sets us apart from each other and prevents us from sharing our experiences, lest we stand out too much, attract too much of the wrong attention, or appear too strange. I found plenty of journals, books, and articles that discussed specific mental, emotional, and physical conditions, but none that addressed the general uneasiness of being undiagnosably different in a world where everyone seems to be trying desperately to fit in. It is true that every human story is unique, yet it is also true that there are qualities we all share as humans. Among those qualities are our differences and thus our sameness. My hope for Raising Blaze was that others would find themselves in this perspective and in our story.
I explained all of this to Blaze before I started writing and I was convinced that he understood what the book was about and why I was writing it. My first book, Waiting, was also a memoir in which Blaze had been featured and he had become familiar, even comfortable, with readers (heretofore, strangers) knowing the details of our lives. Yet this book concerned him much more personally, and I continued to wrestle with doubts about volunteering aspects of his life on paper.
While I was writing the last few chapters, Blaze began hovering behind me as I wrote, reading over my shoulder in a most unnerving way.
“You can’t stand over my shoulder and read,” I told him. “I can’t write if you do that.”
“But I want to read it,” he told me.
“Why?” I asked him in a stunning display of stupidity. “You can read it when it’s finished. You don’t have to stand there and read it while I’m writing.”
“But I want to read it now,” he said. “It’s about me and I want to read it.”
And, of course, he had every right to read it. I started feeding him pieces of the manuscript, from the beginning. I tried to give him passages that were heavy with description and dialogue, thinking that those would be the most appealing to him, but he soon caught wind of that and demanded that I give him everything and so I did.
The first surprise was that Blaze became entirely involved in what he read. He sat with hunks of the text for one, two, even three hours at a stretch. Sometimes he laughed out loud and sometimes he asked me to define words that he didn’t understand, but he didn’t stop until he was finished with every page in his hand. The second surprise was how I felt about my son reading the book I was writing about him. I was scared. I realized, in that moment, that if Blaze gave me any indication that the book disturbed, bothered, or hurt him in any way, I would not be able to finish it and it would likely never find a place between two covers.
“What do you think?” I asked him, finally.
“It’s really good, Mom,” he said. “I like it. I want to read more.”
This was the beginning of a dialogue between us that went on until I wrote the last page. Blaze took the opportunity to discuss various past events, sometimes arguing about my interpretation of them. He loved certain scenes, but there were some that he asked me not to include. In all of these instances, I respected his wishes.
As it turned out, I needn’t have worried about Blaze being reticent about sharing his life. Soon after he read the first few pages, Blaze was regaling all and sundry with, “My mom’s writing a book about me. Do you want to know what’s in it? Let me tell you this one part…”
I have no way of knowing how Blaze will feel about this book in the future. Then again, I don’t know how I will feel about it then, either. I do know that, right now, this is a book that comes to you from both of us. For the rest, we will have to see. Ultimately, both raising Blaze and Raising Blaze are acts of faith.
{ ACKNOWLEDGMENTS }
I was fortunate enough to have had the guidance of three lucky stars with this book and I owe them all a huge debt of thanks—much more than I can adequately express here:
My agent, Amy Rennert, who never gave up on this book and never allowed me to give up, either.
Judith Moore, for getting me started again.
My editor, Marjorie Braman—just the absolute best. Bar none.
I would also like to offer my deepest thanks to: Susie Smith, Lisa Shepherd, Michele Chavez, Bill Porter, Lisa Ebner, and, especially, Don Birkett.
And to my mother, my father, my brother, and my three sisters, I can only say this: I am so lucky to be here with you. You are, and will always be, everything to me.
About the Author
DEBRA GINSBERG waited tables for twenty years to support her writing career, the result of which was her first book, Waiting. A regular contributor to the San Diego Union-Tribune books section, she lives with her son in Southern California. Visit her website at www.debraginsberg.com.
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Praise for Raising Blaze
“A stirring record of a mother’s battle fought with zest, humor, and love.”
—Kirkus Reviews
“Debra Ginsberg has a good ear and a good heart. This is the real story and this book will be a welcome companion to anyone who has fought the lonely battle for their child’s dignity in a world that makes too few allowances for those that are different. Her belief in Blaze illuminates the book.”
—Martha Tod Dudman, author of Augusta, Gone
“Written with the consciousness and conscience of a novelist, Debra Ginsberg’s Raising Blaze is a memoir without the ‘me,’ and in place of the me is a ‘thou,’ her son, Blaze. It is he whom Ginsberg, like every mother of a brilliant, square-peg child, disabled only by society’s inabilities to serve him, considers a holy innocent. Her story is tough, unsentimental, and moving, achieving, as only a few others do, a selfless grace.”
—Jacquelyn Mitchard, author of A Theory of Relativity
“Debra Ginsberg writes straight from the heart—and captures ours—in this crisply written, moving account of securing the best education possible for her special son, Blaze. Luckily, he has a mother who never gives up. An inspiring story of one woman’s devotion and the power of love.”
—Terry Ryan, author of The Prize Winner of Defiance, Ohio
“This is the poignant and compelling story of raising a child with an undefinable disability centering on emotional/behavioral issues…. This mother and son’s tale not only reveals the beauty and strength in struggle, but also acts as a supportive text for parents and guardians of disabled children…. This book is the foundation for a new understanding. Highly recommended.”
—Library Journal
“The mother from hell? The child from hell? Raising Blaze is a book to upend such glib characterizations…. Gins
berg writes touchingly about her love for Blaze and her desire that his glories…not be overshadowed by his deficits.”
—San Francisco Chronicle
“Blaze is an exceedingly interesting human being with a wide and singular capacity to amaze and entertain…. This is a great and obviously very real story.”
—Ottawa Citizen
“Through commitment and dedication, Ginsberg manages the frustrations and joys of raising and educating her unusual son, and her account of her struggle is both inspiring and disturbing.”
—Booklist
“A specific diagnosis of a disability may provide a welcome explanation for puzzling behavior, even offer relief through medication or therapy. But as Debra Ginsberg explains in Raising Blaze…a diagnosis can sometimes create more questions than answers.”
—The New Yorker
“Throughout the book, Ginsberg portrays herself…and Blaze honestly…. Blaze’s story isn’t over yet. But readers will put this book down hoping and believing that the boy who thinks Tuesday is light blue will find his own peculiar way through life.”
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