Some days I think we are light-years away from the NICU. We have been there, done that, and moved on.
Other days I am right back there, standing by my daughter's bedside as the neonatologist updates me on her progress. He tells me my babies are boring, and boring is a good thing. It means they'll have every opportunity to catch up to their term-delivered peers.
My girls don't look like preemies anymore. They are the same size as your typical fourth-graders. There is little physical evidence that they started their lives two months early and spent their first 38 days in the NICU.
Yet the ramifications of their prematurity linger. Gross motor delays, cognitive difficulties, comprehension issues — these are the effects of prematurity that parents of older preemies are dealing with. I've watched my girls struggle to ride bikes or climb onto stools. I've seen the trouble they have with multi-step math problems.
I've also watched the excitement in their eyes when they finally learn to balance on their two-wheeled scooters or use their bodies to propel themselves on the swings. I've witnessed their enthusiasm over science projects.
Yet nine years later, we are still affected.
It's frustrating. It can be embarrassing. It makes me sad. And sometimes it makes me downright mad.
At my best, I roll with the punches. I am patient and grateful. These 9-year-old girls bear no resemblance to the red, wrinkly, 3-pound babies I delivered. They are healthy and happy, developing their own interests and unique styles. While we struggle with some difficulties, we celebrate the wins: the creativity they possess, their love of a good knock-knock joke, or the effort that goes into even the most mediocre grades.
On my worst days, I am angry and resentful. I am mad we were robbed of the typical birth experience. I'm upset that my girls have to suffer from these invisible disabilities, something that is in no way their fault. I am frustrated that this is our path to walk, that we will never truly leave prematurity behind us.
And yes, I blame myself for not being able to protect them.
When a teacher informs me she notices a lack of focus in one twin, I roll out the script I've had in my head for months. I give the back story of prematurity — our story — relaying information I've learned about the long-term effects of being born nine weeks early. We talk about invisible disabilities, sensory-seeking behaviors, and poor comprehension. My work with a nonprofit that supports NICU families has prepared me for these conversations.
"It's not so much that she can't pay attention," I urge. "It's that she literally does not understand." And it's often unclear what she needs to succeed. The scenario is different from that of her twin, whose ADHD diagnosis gives us a clearer picture of how we can help her. Either way, I always feel like I am barely keeping my head above water. If I relax for just one moment, I may miss some important key I need in order to advocate for them, to help them succeed, not necessarily academically, but in this world.
In the past I've wondered when I could stop saying my girls were preemies. We realize now that we may never be able to free ourselves from prematurity. We need to learn to work with it. We're learning to adjust our expectations. We know some things will change for the better, while others may only change in their difficulty.
The road may always be bumpy. But it is drivable.