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The Beauty of Love/Book Review

The Beauty of Love: A Memoir of Miracles, Hope, and Healing
By Laura Posada and Jorge Posada

I’ve heard it said that the “walking wounded” recognize each other. Long before I knew that Yankee catcher Jorge Posada had a child with craniosynostosis, a complicated, little-known neurological disorder, he was my favorite ball player. Not as gorgeous as Captain Jeter, not as awesome as Sandman Rivera, Posada drew my attention like a magnet. I thought it was because he was a catcher, a position I respect and admire above all the rest. But there was also something indefinable about Jorge that touched me: I felt we were in some way simpatico. Now I know what it was. As parents of children with neurological disorders, we’ve been through the same war, and lived to tell the tale.

In The Beauty of Love: A Memoir of Miracles, Hope, and Healing, Posada and wife Laura tell the gut-wrenching story of their son’s first years of life. Born with craniosynostosis, he had visible deformations of the skull, which, if untreated, can cause severe damage such as seizures, visual impairment, misalignment of the spine, and developmental delays. Jorge Luis was operated on at nine months old, and again at two, and at three, racking up eight complicated, 12-hour surgeries in his first six years of life.

As many readers of this blog know, my son Daryl, now 45, was born with a neurological condition called hydrocephalus, which is complicated to explain and requires surgery — sometimes multiple surgeries. I thought hydro topped the list of terrible neurological conditions that could befall a newborn, but I’ve been humbled: the vicissitudes of hydro almost pale in comparison to craniosynostosis, which I won’t even attempt to explain, not to mention its treatment — restructuring the skull by means of a craniotomy. Craniotomy: a surgical opening of the skull, grafting new bones where necessary, re-shaping and re-forming…the idea of this being performed on an infant is almost beyond imagining.

“He seemed like an old soul who instinctively knew
that life came with pain…”

But if Jorge Luis’s operations were more complicated than Daryl’s, the Posadas and I shared almost identical feelings and experiences at the various stages of our children’s early lives. In alternating chapters, the Posadas write with complete honesty of their shock and grief, of feeling sorry for themselves (the Why me? stage) and their evolution to become leaders helping others cope with craniosynostosis. Realizing that Jorge’s baseball celebrity would draw needed attention that this disease had never gotten, they set up a foundation to raise money for research, and to educate, support, and advocate for parents and their children. In their own words, they evolved “from victims to warriors.”

“What I remember from that time are scenes from all the different medical procedures Jorge Luis had to endure, seeing my little son all rigged up, hooked up to a million tubes.”

Before they could reach that stage, though, they had to first travel the rough road of denial, isolation, fear, shame, and guilt that comes with this territory. For a long time they didn’t tell people about their son’s condition, lest pictures of his misshapen head end up splashed all over the New York tabloids. Laura, like every mother of a child with a disability, wondered what she might have done to cause it. Both parents suffered the agony of seeing their baby in pain, of handing him over to medical professionals in sterile rooms with cold metal instruments, knowing these strangers were about to split their baby’s skull wide open.  My son’s surgical procedures lasted five hours in the early years; less than an hour later on. I cannot imagine how the Posadas endured 12-hour marathons; surely those hours were filled with thoughts and feelings similar to what I remember  – one of the top ten being the very real possibility of my baby dying on the operating table. Laura writes that she could not, before Jorge Jr.’s first operation, fathom how an infant was going to survive the procedure as it was described by the surgeon.

“The possibility of losing him was always in the room.”

 

One thing The Posadas had going for them was that each has the inner resources that come from having been raised by large, loving, supportive families. They describe almost idyllic childhoods in Puerto Rico; each had the kind of family that every one of us ought to have but few of us do. Laura makes comparisons between then and now, of herself pre-craniosynostosis as a self-involved girl whose chief concerns were her own physical fitness and worldly achievements. As is the case for so many parents of children with disabilities, her son has shown her, she says, a whole other way of being.

Although my childhood was very different from theirs, disability is the great equalizer: the Posadas and I share the same parental reactions to our situation, beginning with the first: denial. Jorge Luis’s head looked the way it did “from the forceps”  used during childbirth. And Daryl would simply “have an operation and be fine.” Once you move through the denial stage, you can’t turn back, even when you wish you could.

“I waged my internal emotional battle in total solitude…I would spend the day with a rehearsed smile pretending that everything was fine.”

Babies who cried all night, who would not be comforted, even when we stayed up all night rocking and walking, thinking they were in pain – and maybe they were – feeling inadequate as parents. Protecting our babies from the eyes of others, friends and strangers alike, not wanting them to pass judgment on him. Seeing other parents with babies, feeling robbed of a joyful experience. Hardly talking about our son’s condition, not even to each other. Numbed by medical terminology, going through the motions of life, doing what you have to do, hoping for the best. For the first six years of Daryl’s life that’s how I lived. As Laura says, nothing in life prepares you for this “…category 5 hurricane of questions, shock and guilt—and we did not have even one umbrella between the two of us.” And then the second child: convinced she too must have some anomaly, unable to fully believe she was healthy and “normal.”

The book’s foreword was written by Joe Torre, who uses the metaphor of Jorge as a switch-hitter to describe his ability to adapt to whatever gets thrown his way. Derek Jeter, Tino Martinez, and other Yankees contributed commentary throughout, as did Jorge’s and Laura’s relatives, writing their own observations of the Posadas during difficult times. When a group of Yankees visit the hospital after one of Jorge Jr.’s surgeries, someone describes Jorge Sr. as seemingly “stunned.” He probably was. And yet, Posada continued to play baseball, having one of his best seasons the year of Jorge Jr.’s birth, contributing to a Yankee World Series championship.

As the fans shout when Posada comes up to bat, Hip hip Jorge! And hip hip Laura! as well. These are two genuine, strong, wonderful, and caring human beings, weathering one of life’s most difficult experiences. I’m grateful they told their story, and hope the rest of Jorge Jr.’s life, and theirs, gets easier as it goes along.

My own book, Perfectly Normal: A Mother’s Memoir, is available at Amazon and at iUniverse.com.

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