It's here! It's here! Today was the best day ever - the day I get to read my son the book he inspired me to write.
If you would have told me last summer, when I quit my corporate job, packed up our family of six, and moved us across the country to Arizona from Chicago to get help for our twins with autism with absolutely no idea how we’d make it, that I'd be writing a children's book, I'd never believe you. That I’d be sharing this photo of my son surrounded by his own story, the irony of my nonverbal child surrounded by thousands and thousands of words written about him, I could never imagine something so symbolic.
This journey has pushed us and challenged us in ways that I can only begin to describe as baptism by fire. Losing our main income, relying solely on my retail business to support us, working night and day as a family to fulfill orders, introducing the boys to numerous therapists, different types of therapies, some that almost broke their spirit, having people in and out of house, sometimes six per day, in our space. Watching my son hit himself at times, tantrum until his voice went hoarse, but continuing on, continuing to take him to the ocean, touch foods, help with cooking, pet his brand new puppy. Watching him cry actual tears the first time he heard “Nessun Dorma” by Puccini, and realizing he was responding to particular keys and frequencies, watching him run across a soccer field or pump his legs on a swing for the first time with his older brother alongside him, permitting him to grow and evolve at his own pace.
Re-defining boundaries, losing friendships I thought would last a lifetime but gaining unexpected friends, going through major surgery alone in a hospital, being away from family. Having my fourth child diagnosed, realizing I was the mother of three autistic children, and trying to make sense of it all. Trying to not crack under the agonizing grief of not hearing my children say Mama or speak. Breaking down layers and layers of ego until I didn’t recognize myself and who I had become, over and over again. Rediscovering myself in my son, crying when he matched me out of a lineup of photos, when his brother fed him a spoonful of food after a hunger strike, or when he put his mouth on my cheek for the first time, trying to kiss it. Detaching myself from accomplishment and learning to settle into a life of making each day beautiful in mundane ways: bringing in new plants even though he poured their dirt on the floor and broke their pots, but continuing to bring them in over and over until now, a year later, he touches their leaves. Him pulling up his own pants for the first time or learning to drink from a straw at five. Him breaking an egg into a bowl and smiling.
But most importantly, I've had to learn to stop giving a fuck about what people would say, what they would think, how they would react to us and our motley crew...and living our damn lives, something that everyone deserves. Not noticing the laughs or stares or wagging fingers or glares. Coming up with our own methods and coping mechanisms, thinking outside of the box, doing things with the lights off literally and figuratively. Slowly working our way through the dark with only glimmers of light to revive us.
Nothing was certain. There was no manual. No guidebook. But this is the life we have and we have blazed our own trail, as full of bramble and poison ivy and snakes and bugs as it’s been, it’s been beautiful and raw.
This book explores the concept of caging the spirit of all children and all people, but most importantly, shines a light on what happens when you take a child such as Phoenyx, with boundless energy who doesn’t think or process the way we do, and force him into a proverbial cage by performing according to data-driven standards. Not unlike what I had driven myself to do. Much like a pavlovian dog. We see as a nonverbal child rescinds even further into his own world and distrusting the outside world as only wanting him to perform in a transactional way. Phoenyx, much like his mythological namesake, is full of potential in a wild and unusual way, and I’ve had the honor as his mother to uncover the many beautiful things about the way his mind works.
It is no coincidence that Phoenyx, whose only word is “go” said his first sentence two days ago. His words: I love you.
Raising a Phoenyx is now available here for purchase. All profits generated from the sale of this book will go into a special fund for Phoenyx's future.
Thank you for following along on our journey!