To The Song “Iris” by the Goo Goo Dolls

“He’s perfect,” the midwife said, stroking my hand. “And it’s a good day for a birthday. It’s my birthday, too.”  She knew I had complete faith in her. “He’s perfect.”

Nothing went the way we thought it would, ending in a c-section. APGAR score of 1. Oxygen. 

He’s quiet. He never once cried.

Three weeks later and we are living in the NICU with occasional visits home to sleep a bit, shower. One day, I decide to pray. It’s the last time I will ever do that. The doctors know nothing and every day, with every new symptom, they know less, not more. Then the seizures.

I was driving home. If I ever become independently wealthy, I will create a non-profit driving company for people taking care of loved ones in the hospital. Driving requires attention and awareness. I had neither.

But I did have the radio on. And you come on, “Iris.”

“And I'd give up forever to touch you

'Cause I know that you feel me somehow

You're the closest to heaven that I'll ever be

And I don't want to go home right now”

He’s in an isolette and though we can hold him, we can’t just walk in and pick him up. Vent, feeding tube, other assorted wires and leads. I have to get permission and then help. Sometimes they say no.

           “And I don't want the world to see me

'Cause I don't think that they'd understand”

Friends and co-workers are calling. The birthing group is waiting to have a reunion with the babies so that we can be there. They all reassure us it will be ok, talk about when he will come home. We say nothing.

“When everything's meant to be broken”

We won’t know this until over a year later, but it’s genetic, the very code of his being says this is who he is, made to be broken.

The words are every thought I have had since Rainer was born.

“I just want you to know who I am

I just want you to know who I am

I just want you to know who I am”

He doesn’t open his eyes. We think he can hear. He doesn’t cry or make a sound.  

I have to pull over into a parking lot. I’m not sure I will make it home. Of all the things I worried about, the idea that he might not know us, that in his life, he might feel alone in the few weeks he he has, this is the hardest of all. If he dies, he needs to know he was our son. 

And we don’t know how to make sure he knows.