haiku for HIE gratitude fatigue I, namer of negatives,
need break from blessing.
He seems so normal though.
He's just a normal baby.
He doesn't seem like he has brain damage.
I think he will surprise you.
He's doing things my baby wasn't doing at that age.
Don't waste his babyhood worrying.
I want to see a video, a short clip, five seconds would do it--of Teddy at eighteen. Yes, I know, none of us knows where our children will land. Nobody knows what their kids will look like at eighteen. But Teddy could be a gibbering idiot.
Now I know the origin story of slurs--someone with brain damage in the exact places Teddy has damage is called that particular slur--the language center (gibbering) and the watershed areas for memory and information processing (idiot). He could have those disabilities--seven month milestones don't mean he won't. The fact that people think he'll be normal because he smiles and plays with toys now, makes me realize how ableist everyone is. That they think a person with intellectual disabilities is incapable of smiling, of engaging, of laughing, of curiosity. At eighteen, he could be wearing adult diapers, making baby noises, pointing excitedly, wanting to play with an infant toy, watching reruns of Curious George. And the myth that people with intellectual disabilities are at least happy.
If my child wasn't capable of independence, a friend said, she wouldn't be happy bagging groceries. At least if Teddy's retarded, he'll be happy. Yet, the neurologist warns us about behavioral problems, anxiety, depression, rage. How will I parent a grown man with rage?
Or maybe he'll have mild mental retardation. The slur again. Retard--from the roots re (again) and tard (to be late). To be late again. His slight delay in babbling, in responding to his name, in playing peek a boo, is I imagine, a taste of how we will start to understand the ceiling of his capabilities. He won't be doing something. Then he still won't be doing it. Still, he won't be doing it. We will think, oh, he's late on that. He's late again. Still late. Late again. Until he is labeled retarded, forever late again. He could have speech and language problems, a limp on one side. He could look normal, be able to wash dishes or bag groceries, be a big helper around the house. Teddy do. Teddy help. He could go to the Special Olympics, be a higher functioning person, perhaps a leader at adult day care.
Or maybe he'll be a slow reader. Need extra time on tests. Maybe he'll have a one-on-one teacher to tutor him, but be mainstreamed. Then college maybe, marriage, a family if he wants one. A job that doesn't require a lot of reading and writing.
He's perfect, no matter what. You'll love him anyway. No matter what his capabilities are, he's perfect!
I want to scream, fuck you, of course I love my perfect child. Of course I love him anyway. Of course he is perfect. In the OR, when they took him away, I kept saying over and over and over, he's perfect, he's perfect, he's perfect. In the NICU, I wailed over his bed, sobbing, you're perfect, you're perfect, you're perfect. I want the most unrestricted and able life for him, because he's perfect. Because I love him. It's not ableist for me to want, for the child I gave life to, a life free of disability. People who don't have a disability, who aren't parents to a child with a disability, tell me disabilities bring sunshine into your life. Special families are chosen to have special needs kids. Fuck you, fuck you, fuck you.
The likelihood that he'll be a totally "normal person" is so slim, it's hard to entertain. His injuries are too severe. The neurologist, when I ask if he may be "without deficits" pauses and then asks gently, "Have you seen his MRI? Did you understand?" Yet, I entertain the idea. I imagine him graduating high school, a rakish grin over his shoulder, putting his arm around his girlfriend or boyfriend. AP credit, university classes he passes with ease. A job and independent life and I tell him, "Teddy, you really scared us when you were born, buddy." He laughs and says, "Sorry about that Mom." We shake our heads. Justin and I, our eyes meet over the table where maybe we're celebrating his graduation or engagement. "Whew, that shit was crazy," Justin's eyes seem to say. Justin squeezes my hand under the table, and I shake this experience off, shed it like a snake sheds its skin, leave these days behind me as we head into the bright and shining, certain future, knowing that if he doesn't "excel" or "succeed," it won't be because of his injuries. He will have had a chance, a shot at an open, unrestricted life. His chance wasn't pulled away before he even took his first breath.
Strokes in the womb.
Goddamn, Teddy. I'm so sorry this happened to you, buddy. My beautiful baby. I love you so much.
Like any other parent, I hope for so much for you. But unlike other parents, my hope hurts. It rips my heart out.