It’s a special kind of hell to know, or to think you know, there is something wrong with your child even before they are born.
It brings forth a cold, bottomless fear. You don’t even realize you are doing this really natural, almost unstoppable thing– fantasizing about your unborn child’s amazing future. But you come to know you are, or had been, fantasizing, because all of a sudden a doctor tells you something that stops you dead in your tracks.
You instantly try to freeze your thoughts, afraid to think anything good or bad. You try to think nothing, but we all know how that goes.
After we were told, at our 20-week ultrasound, our son, Pedro’s, brain was malformed, I could only picture him as a teenager, skinny, non-verbal and in a wheelchair. For some reason I permitted myself no other “fantasy.”
Speculation about any illness is dangerous territory because our minds naturally go to the extremes, which is why I could only imagine my biggest fears for my child. My tough, wise mother says to just stop yourself from speculating. Tell yourself to “stay in the middle.” Again, easier said than done, but it’s something, in times of crisis, to shoot for.
We forced ourselves to the middle by getting busy getting used to the diagnosis. First, we cried, together and apart, taking turns learning to console one another. We were older parents but also newlyweds. We had not even celebrated our first wedding anniversary. I had never consoled my husband, Jose, before; I had frankly not known him long enough.
Although I have always been sort of selfishly excessive in my own emotions, I learned I did not like to see Jose sad. I could not stay sad if he was down. I learned I could buck up when presented with Jose’s grief. I got strong to bolster him in his weak moments. He did the same for me. Our recently stated wedding vows, “In good times and in bad…” took on a new and urgent meaning.
Although at first we promised one another to not say a word about our news and to just try to proceed as though nothing had happened, we did not stick to this. We did the opposite. We shared the news with our closest family and friends, and our priest.
We found many of our friends had stories and information that was helpful and comforting. They shocked us by their willingness to share their own, sometimes very painful, experiences. We asked for whatever types of prayer anyone could offer. We felt literally embraced, supported and transported by our community.
We read up on the condition and explored every resource that somehow related to it. Armed with a clipboard and questions we saw many doctors and specialists. We believed information would be our shield, so we devoured every fact or insight we could find. Sometimes, often, we hit overload and would have to take a break.
Eventually the cloak of terror that dropped down on us the day of diagnosis lifted, becoming a kind of pain shawl we wore everyday, but were becoming more adept at functioning in. Strangely, in a little over a month, we grew somewhat accustomed to our new perspective.
But then we took it a step further than acceptance. We realized we had been given the joy of pregnancy, what would be for me, at age 43, my only pregnancy, over to the diagnosis. Pedro had become the diagnosis.
So we started, as so many parents do, to read to him through my belly, play music to him with an iPod attached to a special belt (We found our boy moved crazily to Adagios– he moved so much we worried we were damaging him further). We talked to him, and we felt a little better as he became more human to us and less of a diagnosis.
The monkey was what really saved us, and I recommend getting one to anyone reading this who is in a similar situation.
It was after work, and I was wandering the aisles of our enormous local Wegmans store when I found myself stopped in front of a shelf of small, organic stuffed animals. There was a little tan monkey with a white stomach who smiled at me from his shelf.
I reached out for him thinking, “If Jose was a baby monkey, this is what he would look like.” This made perfect sense to me at the time, as did my next thought: “This must be our son, our beloved, though feared, Pedro.” This cute monkey was not scary– he was adorable, just as our son would be. The monkey went into the shopping cart.
Driving home, I wondered if Jose would find it silly, my visceral attachment to this little stuffed, perpetually smiling being. I played out my explanation in my mind. When I actually showed Jose the monkey, I stumbled over my words, suddenly unable to articulate the certainty I felt an hour before. It didn’t matter. Jose reached for him and placed him on his chest, a foreshadow of the pose Pedro would take months later.
Suddenly, our baby was real.
We had a way to hold and cuddle him, to see him, to know he was not a diagnosis. Of course, here was our beautiful baby boy. We were three.
From that point forward, every time we were about to leave the house, one of us would say, “Where’s Pedrito? We need him with us.” And so he came along and helped us move forward, quietly preparing us for the real Pedro, who was and is much, much, much more than a diagnosis.
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