I wish my daughter had not been born the way she is.
There. I said it.
It’s worn on me. Six and a half years of Haberman feedings, of watching formula shoot up the cleft in her mouth and come out her nose, of meetings with surgeons and physical therapists and occupational therapists and speech therapists and behavioral specialists and special educators, of potty training that took far longer than it should, of insensitive other parents who think our “problem” is that I let my kid run out of control because my daughter looks very “normal” and they don’t understand that she has a problem, of hearing other kids ostracize and pick on my daughter because “she talks funny,” of daily ADHD-fueled tantrums and whining. It’s worn on me.
I’ve turned my daughter’s condition over and over again in my head. I’ve theodicy’ed it. I’ve told myself that God made my daughter, and God does not make mistakes. I’ve told myself that God didn’t allow her to be born this way for a purpose, but that he can give purpose to the fact that she was born this way. I’ve worshiped at the “how special are children with disabilities” altar. I’ve gushed about how much joy she brings to my life, how if I could go back and make the choice to not have her—not to abort her, but to somehow be prescient of the baby I was about to make and avoid conceiving her altogether—how I would absolutely still make the decision to have her. I still believe in almost all of those things with all my heart.
I know that there are worse things out there than having a kid who has what she has. I know that within the spectrum of even just her disorder, things could have been much worse. Trust me, when I hear parents bragging about how their six-year-olds are already reading The Chronicles of Narnia and I’m still stuck with Good Night, Moon, it doesn’t help.
I am a religious person. I don’t believe DD will be like this in the next life. There I believe she will be healthy and whole, that the haze of her disability will be lifted from her mind, that she will be as thoughtful and intelligent and sharp as any person who ever lived ever was. I believe we’ll be able to stand face-to-face, two women, two equals, and have a conversation about anything that we want to talk about, and fully understand one another. Maybe for the first time. That is the person that I try to see when I look at my daughter. I try to remember that while her mind and body may be damaged right now, there is a beautiful and perfect soul inside, a soul that needs me to take care of it in this life, and I hope that someday, she will understand everything that I do for her, and she will thank me for it. And I will thank her for everything her disability has taught me.
Even though I have known all of these things in my head for some time, I don’t think I realized how badly I wanted a healthy child until I got that phone call this afternoon telling me that my amniocentesis results are in and my unborn child does not have Down syndrome (trisomy 21), Edwards syndrome (trisomy 18), Patau syndrome (trisomy 13), any sex-chromosome disorders (like Turner syndrome), or 22q11.2 deletion syndrome—which is what DD has. I don’t think I knew until I ended that conversation and hung up the phone and started to sob.
I don’t know what the future holds for this baby. It could still have severe autism. It could still have any number of congenital defects or genetic diseases that they did not know to look for. I could still have a miscarriage or a stillbirth. Anything could still be wrong or go wrong.
All I know is that some of the most common negative outcomes have been ruled out, and the dream of a healthy baby is very alive right now.
Excuse me if I enjoy that dream while it lasts. I haven’t had it in almost seven years.