My favorite band of all time is Pearl Jam. A line from one of their songs is, “How I choose to feel is how I am.”
No, that’s not a yoga mantra or an accidentally profound fortune cookie. That’s a line from a rock song.
Sometimes the most resonant messages come from unexpected places. I am a person who tries to remain open to receiving those messages no matter where they come from.
Even if they come from the NICU.
Last week, I lamented not being able to take Jax home yet. Despite a subsequent outpouring of encouragement and support — thank you — I felt guilty as soon as I posted.
Why do I want Jax to hurry up and leave the place that’s making it possible for him to survive? It’s his Plan B, his womb-away-from-womb. (Attempt at a joke: check!) It’s a warm, germ-free bubble of protection.
Is it selfish that I still wish I could be his bubble of protection? Is it doubly selfish to even ask that?
The books say that parents of preemies mourn the loss of the typical milestones of having a baby, like holding him right after he’s born, or getting to take him home a few days later. We’re advised to grieve for that paradigm of newborn normalcy, then become immersed in the NICU and accept our new reality, lest we feel cheated by it.
The middle chapters of those books say, by omission of such advice, that we should be done grieving.
The truth is that acceptance doesn’t happen once. It happens every day. It has to. Because some days are definitely better than others, and on the bad days, you still have a choice.
Milestones are milestones. NICU or not, we have priceless memories of Jax’s first bath and diaper change, and the first time I dressed him in preemie clothes. There is video of the first time both of us held him, and photographs of the first time I ever laid eyes on him, the first time he ever opened his eyes (Jon aiming a camera phone is the first thing Jax ever saw!), and his first smile.
First day without an alarm? Got it. First day of a whole ounce gained, then first day of two whole ounces gained? Got ‘em.
We keep a baby book like many parents. We celebrate and honor Jax, buy him presents, brag about him and plan for his future. (Jax, no pressure, but I sincerely hope the baseball-playing gene on both sides of your family is dominant, and that you didn’t tire of Pearl Jam in utero.)
On good days, you don’t have to choose to feel good. You just do. But when even I am sick of the sound of my own voice complaining about being tired, I visit Jax, watch him sleeping peacefully, this tiny, incredible person who shouldn’t even be here. But he is here, and he’s fighting, so why shouldn’t I?
At a time of year when we’re reminded, even ad nauseam, to count our blessings, I count Jax big-time. I count Jon, I count NICU, I count all of it.
On bad days, I have to accept our reality all over again, and choose: “cheated” or “blessed.”
On bad days, I choose “blessed.”