Going from victims to warriors in ‘The Beauty of Love’

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/ Source: TODAY books

In “The Beauty of Love,” New York Yankees catcher Jorge Posada and his wife Laura explain how they dealt with their son Jorge Luis being born with craniosynostosis, a growth defect of the skull.

Chapter 10 - The Bittersweet Truth

We waited about an hour or so, until finally a nurse came in holding the minuscule bundle of our son, who was warm, clean, and wrapped like a fresh little dumpling. My eyes fluttered open from the twilight nap that I’d gotten lost in, and there beside me was my husband, looking slightly nervous but smiling proudly, holding our first baby. We looked at him, both of us in tears, injected with the rawness of true, unconditional love. In the moments between shock, pain, deep sleep, and fuzzy wakefulness during my pregnancy, I had talked, dreamed, and fantasized about this first encounter with our son. Now, seeing him in Jorge’s arms, I was beside myself with emotion. “What a vision,” I thought blurrily through my fog of meds and exhaustion. Jorge passed the baby to me, and a wild blend of emotions overtook my being.

As hard as it is to admit — and I think I can only do so in hindsight — when I looked down at him on the day of his birth, despite the surge of love that I felt for him, I also instinctively knew that something was not quite right. The right front side of the baby’s forehead looked slightly flat and even a bit caved in, and on the other side there was clearly a bump. I could not have imagined using these words then, but he looked visibly deformed. Jorge and I both saw and knew it right away. With just one look into each other’s eyes, we said everything without speaking one word. We both knew there was something wrong, but neither of us wanted to be the one to say it first.

You have to remember that at this point we were both young, inexperienced, first-time parents, with no real point of reference as to “how things were supposed to be,” so we just stayed sort of quiet under the unspoken assumption that the baby’s head and face would gradually take proper shape. Of course we questioned the doctors and tried to get some clarity during those first few days, but everyone seemed to think we should just wait and see. There was no sense of desperation, no urgency, and no mad rush of physicians anxious about the way our child had been born.

The doctors simply told us that the use of forceps might have been the cause of the deformations but that we shouldn’t worry — which of course is exactly what we wanted to hear. Needless to say, we were hungry for some semblance of relief after the crazy whirlwind of the delivery, and hearing the doctors’ casual response to what we thought might be a problem was almost music to our ears; indeed, we wanted to believe that everything was under control, that forceps often cause slight deformations, and that all we had to do was sit tight and all would fall into place. But none of that happened, and two days later we were discharged from the hospital, sent home with our baby and a subtle but looming sense of dread. Looking back now, it was a pure and total denial of the facts.

When we got home, I was still recovering from the debacle of the epidural, barely able to stand, dizzy from morning to night, and aching from the whole ordeal. I was having chronic postpartum headaches and felt nauseous most of the time. I tried to breast-feed, but Jorge Luis could never seem to latch on properly, and each attempt left me (and probably him, as well) even more frustrated and exhausted.

The worst part about it was that all throughout my own debilitating physical misery, I could plainly see that Jorge Luis’s little head was still very much deformed. I would go to bed at night, close my eyes, and silently pray that he would look normal the next morning when I’d go in to check on him. And the following morning I would wake up, take a deep breath, and drag myself over to his bassinette, only to see that nothing had changed. I felt as if I were locked inside some awful dream, the kind where you know you are dreaming and trying desperately to cry for help but no one seems to hear you no matter how hard you scream. We didn’t want to panic, but we knew we would have to address the issue at some point. I guess we wanted to remain hopeful and not get all riled up, and we decided to believe that whatever it was, we would somehow be able to handle it. But by the tenth day, the baby still did not look quite right.

If my parents noticed anything unusual about his appearance, they did not say it to me and instead always displayed a silent optimism. They carried on as if everything were normal, and I suppose I was unconsciously waiting for someone to speak up and agree with me that something was not right. But no one had the heart to say it. “Tapando el cielo con la mano,” we say in Spanish. This metaphorically describes the act of trying to “cover the sky with your hand,” which speaks to the notion of denial and the sense that reality is always right there, regardless of our conscious or unconscious attempts to hide it. But reality was getting closer and closer by the moment, and in time no amount of denial would be able to stifle what we were now up against.

The other thing was that the baby never stopped crying. He would cry from the moment he was awake to the moment he fell asleep, a screechy wail that pulsated through the whole house all day and all night. It was almost as if he himself knew that something was not right. We certainly did not know how to handle the crying and his evident discomfort and irritability, and that, combined with my painful recovery from the delivery, made those first few weeks seem impossible. There was no way of knowing if the baby was in pain or not, and if he was, we had no idea how to treat it. It definitely felt as though a crisis was brewing, but because of the newness of it all, neither of us knew exactly what we were dealing with. Each day seemed interminably long, the only constant being the perpetual shrieks of this poor child, who was clearly not well.

And then a few days later, we started to notice something else.

One day in December, I was holding the baby, during one of those very rare moments when he was quiet and calm, when I realized that not only was his head deformed, but it was also starting to look like one of his eyes was higher than the other one; worse still, his nose and mouth were both sort of off to the side as well. At first I thought that I was maybe hallucinating from lack of sleep, but the more I looked at him, the more I knew just how real it all was. I kept thinking that if it were indeed the use of forceps that had caused all of this, why was my baby’s face shifting and morphing from one day to the next? I used my own physical sickness as an excuse to keep friends and relatives, except for our parents, from visiting our house, frankly because I didn’t want anyone to see him. I didn’t want interrogations, I didn’t want shame, and I definitely didn’t want pity. Somehow I knew that a serious frenzy was coming, but I certainly did not want to be the one to start it.