My Most Truthful Desire for My Son in the NICU
My son suffered severe brain damage due to a birth injury and spent the first three weeks of his life in the NICU. The following is something I wrote as I wept and wished I could take him home from the NICU.
I sit on the metal bench beside the circle drive of the hospital. Misshapen circles of rust have formed on it; the paint has separated and fallen away. The air is cool but not cold, and my spot in the sun keeps me warm. The air is fresh, the breeze is crisp and I am waiting for your father.
He will be here any second to pick me up. I look down at my hands; your new monkey toy, a gift from a friend, is cradled there gently. I stroke his soft fur and wonder if you’ll ever recognize that feeling. I picture you toddling about the house, dragging him around, knowing full well it is possible you may never walk. I hear your laughter. I push you on the swing.
A minivan is parked beside me. An older gentleman is getting out. He has a camera in his hands. He opens the side door. I know what is coming. I try to control my emotions, to look the other way. I look at the monkey, then toward the hospital doors. Here she comes, the new mother, bundled car seat on her lap. She is taking her baby home. No matter how many times I see it, until I bring you home, this scene breaks my heart. The older gentleman snaps photographs, the woman gets in the car, and tears for you stream down my cheeks. Your father arrived in time to notice, and the pain radiates through him as well.
I weep as I get into the car. Your father takes my hand and begins to drive us home.
I will write to you, I think to myself. I will write to you in the hope that someday you will be able read it, knowing you may not. We do not know now what your future holds in store. You could have any range of abilities, and we will not know what you can do until you show us. I can only hope that maybe your difficulties, should they be great, will in the end allow you to see only good in the world and make you impervious to the evils of others.
So far, dear Jak, you have been miraculous, you have fought so hard and you have done everything we have asked of you. And do not think for one second I don’t believe in you, and I won’t do everything in my power to help you develop to your fullest extent. I know if it is possible, you can and will do it. You are so strong. Mommy and Daddy could not be more proud of you, and whatever you can or cannot become, our love for you will never waiver.
My one most truthful desire is that you will know only love and happiness, and the depth of both that you have created for your father and me. You are our Jak, our perfect son, whose eyes light up the moon.
My son is now just over a year old, and he has developmental and motor delays with medically intractable seizures. He is the sweetest, happiest boy I know.
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.