And what about the expectations of others? Can we affect or change those expectations? Are we in any way responsible for them?
Everyone we’ve taken to see Jax has had the same understandable reaction: “Wow! He’s so little! I had no idea he was THAT little!” They comment on the pictures we post on the website we made to keep track of his progress, but even the ones that include a parental hand or finger don’t fully convey how much smaller than a full-term baby Jax is.
“Your fingertip is the size of his whole hand!” people exclaim. “His head is the size of a tiny [insert name of a smallish round fruit]!”
We’ve come to expect these kinds of reactions.
Yes, our baby is very small, we say. And then we wait, and watch their faces watching Jax, and can almost see their brains churning in a certain direction. Even those who don’t say it will think it.
“Is he going to be normal?”
If I may offer some advice: Don’t ask that. Please don’t ask that, of me or of any parent of a preemie.
Don’t ask for multiple reasons: First, I don’t know. I’m not a doctor, or a psychic.
Second, we don’t want to think about that. To us, he’s a miracle and we’re happy he’s alive. Life is hard enough right now without worrying about a life of complications or a diagnosis that hasn’t come. If we aren’t expressing concern over our child’s potential for “normalcy” (I’ll spare you a philosophical rumination of the “What is normal, anyway?” nature), why should you? Except …
… third, clearly, you are thinking about that, as if “preemie” is synonymous with a slew of mental, physical and developmental challenges.
Here is where I remember why I’m writing this column — to demystify the NICU experience — and my irritation subsides. While I still don’t care for that question, the truth is that people do worry about the ability of preemies to develop “normally,” and that worry comes from a good place, and is expressed with good intentions.
So let me tell you about the Hall of Hope. Just outside of the York Hospital NICU is a hallway lined with framed photographs of preemies, then and now, with a few paragraphs about the challenges each baby faced at birth and beyond. An image of a 26-week, 2-pound preemie who suffered brain hemorrhages is right next to one of a “normal,” smiling 10-year-old girl with blonde pigtails, bouncing a soccer ball.
And they are the same person.
The Hall of Hope is filled with these stories. Whether arriving at or leaving the NICU, I always spend a few minutes reading one of them. Because I’m a writer, I usually walk away writing Jax’s story in my head.
I would be lying if I said that Jon and I haven’t considered that Jax might not be “normal” (There, I said it.). When I show pictures of him, I catch myself very quickly explaining the ventilator taped to his face, or the monitors he’s hooked up to. “That’s normal for preemies,” I’ve heard myself say, as if I’m defending him.
See? I, too, am susceptible to the preconception that “preemie” equals “maybe not normal.”
The expectations people have for their children are usually great. Jax is already exceeding our expectations every day, and based on the optimism of our doctors and our own guts, we have no reason to believe he won’t continue to do so.
But, if something unexpected comes up, Jax’s arrival — his very existence — has already shown us that we can handle it.
National Prematurity Awareness Month
November is the month designated to raise awareness of prematurity and pre-term babies. Half a million babies — that’s 1 in 8 — are born prematurely in the U.S. each year. For more information, visit the website for the Centers for Disease Control and Prevention or the March of Dimes.