It's not just physical.
Not just impaired mobility and vision.
But social, emotional, and intellectual deficits as well.
And some nights the combination of it all makes me break.
I pour an extra glass of wine or stuff my face with chocolate in order to not feel the pain of loving a little boy who is not the one I imagined.
And yes, he is a "miracle".
A "survivor".
A "light".
A "joy".
But he also constant work, heartache, embarrassment, and grief.
Living grief of what will never be.
And sure we adjust.
We step back and fall in love with the soul before us instead of clinging to the dream of the healthy able-bodied child; but not without bargaining with every god and goddess we can name or wailing into our hands in the corner of the room.
As I write these lines, I picture my Mom reading them and worrying about my state of mind but I need to share the shadow side or premature parenthood in order to find the light.
Tomorrow is the last day of November, a month set aside to educate the public about prematurity. And I'm sorry, but I understand how Native Americans or African Americans must feel with their one month of dedicated historical remembrance as if their stories aren't part of our collective history.
As if Columbus and Washington didn't stand on their ancestors heads to carve their names in stone.
We need more than a month.
When I worked at the Providence NICU, as a Parent Navigator, my first goal was to add some pictures of preemies to the life-size photographs of healthy babies that decked the hallway to the Newborn Intensive Care Unit. I wanted a picture of a tiny hand gripping a parent's finger. Thirty-week twins snuggling in an isolette together. An image of kangaroo care, of a mother or father holding their beloved child against their chest, skin to skin. The doctors and nurses in the unit supported this goal but, at first, I heard resistance from the administration: We don't want to scare the pregnant mothers who come through here on tours.
Screw that.
I should have had a tour of the NICU when I was pregnant as my double uteri put me in the high risk category for prematurity. And yet ever since I was seventeen, and at my first OB visit discovered that I had more than one cervix, vagina, and uterus, all I heard about was infertility, miscarriage, and healthy babies.
And yes, these statistics alone were hard to bare but someone should of told me about that place in-between nothing and healthy.
That place where babies are born long before their bodies are ready for the world-- and the earth stops spinning as you wait by their bedside wondering if they will ever come home.
You wait.
And wait.
And feel helpless and angry and empty and wonder what you could have done differently to create an alternate universe where your baby's umbilical cord remains uncut as he floats inside your darkened womb and dreams of running barefoot through the warm sand.
You would do anything to rewind.
But you can't so you adjust. You wake every three hours to pump and study medical-ese, terms like Intraventricular Hemorrhage (which in plain speak means a stroke) and you sign the papers to let a surgeon cut into your less than two pound baby's brain.
No one has words. But they bring you frozen tuna noodle casseroles, tiny knit hats, and a latte just when you thought you might fall down.
Not every pregnancy ends in a healthy baby.
Some babies die.
Some survive, but barely.
And not a week goes by where I'm not reminded of what's not and what could have been.
I love my son but its an embattled love, thick with patched up wounds that bleed when stuck by something sharp, like watching him interact, all wrong, with another child, oblivious to the social cues.
The sway of his back as he stumbles across the room.
The way his eyes don't look at mine.
So I write.
The history of the United States is more than dead white men with a month or two set aside to honor the rest. Pregnancy, birth, and parenthood is more than sweet accolades with pink and blue bows.
Beyond the family Christmas cards there are mountains upon mountains of pain.
But if we share our pain with each other, just a little, we make space for the sun.
PS. In a previous post for prematurity awareness Tabatha asked me to write a list of what would be helpful to say and I guess, in a way, this is my long indirect answer to your question.
To sit with each others pain.
To not fix it or silence it or offer bright anecdotes: My cousin's friend's sister had a preemie fifteen years ago and he's now a six foot tall football player and...
Sit with it.
Cook meals or offer childcare for older siblings.
Listen. Even when it's hard.
Especially then.
Admit that you don't have the right words.
None of us do.
Sit with it.
(Thanks for asking Tabatha.)