When I was camped out in the neonatal intensive care for the first ten weeks of my son’s life, I talked to a great many specialists. When your child has a rare syndrome that even the residents at the hospital have to Google, you get all the experts in the world knocking at your door. And they all had a favorite phrase, a default tagline that they added on to every conversation when I tried to pin them down on some sort of prognosis: “We don’t have a crystal ball.”
I get it. I do. Liability-speaking, as a professional in the medical field, you can’t ever make a 100% prediction for a patient. It would be misleading and unethical. Both false hope and false alarm are unstable platforms on which to develop a relationship with a caregiver. And life is weird. Bodies are mysterious, even to the most scientific of minds. Legs learn to walk. Mouths learn to talk. Hands learn to sign. Babies survive and thrive. Despite the odds.
This is why the crystal-ball analogy, while irritating beyond all measure when all you want is some kind of black-and-white answer, is the most appropriate response to questions regarding milestones and illness and syndromes and everything else in the gray area of medicine.
However, long after we left the NICU, I found myself carrying around a metaphorical crystal ball. Mine was a Magic Eight Ball, that black fist-sized cue ball with twenty possible answers to any question. Whenever a visit from the home nurse loomed, I would ask myself, “Has he gained enough weight?” or “Should I have switched to that other formula to get him to eat more?” or “Will this be the appointment that finally sends us to the hospital for a g-tube?” And then I would mentally shake that Magic Eight Ball and wait for “It is decidedly so” or “Outlook not so good” or the worst one: “Try again later.” And I would try again later. That’s the thing about a Magic Eight Ball. Once you start shaking it, you can’t stop.
When we did end up having to get that g-tube, I thought to myself while I sat in the waiting room during surgery, I knew it. I just knew it. When we were assigned the least friendly of the ultrasound techs for his quarterly abdominal scans, I thought, Of course. Because worry is a ball in your hand with endless predictions and the only ones that feel true are the negatives.
When I was a kid, playing with that toy, we stood out on the sidewalk after school in the hot sun and asked things like “Will I marry someone with the initial ‘J’?” and then we’d shake, shake, shake, and giggle until we got a yes. Standing there in our Keds with our Lisa Frank Trapper Keepers, we asked about boys and soccer tryouts and grammar quizzes and we asked with hope that it would all work out. Somewhere along the way that changed. Parenting a child with special needs made me fearful and distrusting of what the future held. I asked with more dread than hope.
My son is six now. Some of the prognoses that the doctor’s hinted at have come true — he is in a wheelchair and mostly nonverbal and growing faster than all the kids in his class. But other things have taken me wholly my surprise. He is smart. Really smart. His understanding of the world and the dynamics whirling around him is beyond what I could ever have hoped. And just a month ago he learned to say his sister’s name, two syllables I never thought he’d say.
I’ve had to train myself to put down that Magic Eight Ball. I’ve had to stop asking all the “what-ifs” over and over again. Because what will that do for me? Or him? It’s all just fear disguised as thoughtfulness, a mental nervous tic. And it’s never going to tell me the truth. How can it, when its sole purpose is to keep me distracted from what’s in front of my face?
It’s hard not to try to predict the future when the present feels like a chair with a wobbly leg. But what our children require most from us is our attention. They need us to meet them in the here and now so we can navigate these hardships, these successes and leave the rest for another day. Everything else is just toying with our emotions.