Regrets

“If you could snap your fingers and change her into a normal kid, would you do it?”

This year, it is a boy in the back of the class who is asking. Last year, it was a young woman in the second row, the year before that, a girl in the front row. Every year since Eliza was diagnosed with mild cerebral palsy at 18 months -- her autism spectrum disorder was not diagnosed until she was seven – I have come to talk with the Disabilities Studies class at the local university. Every year, I get asked this very same question.

I know the answer they want to hear.

I usually visit late in the semester after the students have spent months reading about disability; the politics of disability, civil rights and the potential for empowerment that comes from self-identification and finding a community and culture of those with similar life experiences. The silence that follows their question pleads with me. They are young. They want to believe that the world is – or can be – a just place. Like the rest of us, they do not want to believe that life can be capricious, unfair or disappointing.

I like them. I like their earnest idealism. I admire them for signing up for a class called “disability studies” – not exactly sexy. I think they are brave. I wish I could give them the answer that they so want to hear.

I want to smile, tell them that, yes, it has been difficult, but it’s all been worth it. I want to be able to say that I would never change her disabilities because that is who she is. I know this is the right answer, the one that restores a sense of order to life.

But I cannot.

Every year, my answer is the same: “Of course. I am her mother.”

This, after all, is not television with its simplistic message of strength through adversity. This is real life. And my daughter’s life is hard, too hard for such a little kid.

When the pediatric neurologist first diagnosed Eliza, he said, “Look, she is the same child that you had two hours ago, she hasn’t changed. You will take her home and love her just like you always have.” I hated him and his patronizing platitudes. There has never been, will never be, a question of loving my daughter. I love her more than anything else on earth and would do anything for her. But the doctor lied: she was not the same child. Two hours earlier, she had been a child with an easy future.

How can I make the students understand that wanting my child to be “normal” isn’t a rejection of who she is or a failure to love and appreciate all that is unique about her? I feel bad that my answer has disappointed them.

Most years, a student will also ask me if having a disabled child has changed me.

Yes, of course, Eliza has changed me.

But then every child changes his or her parents – it doesn’t matter what that child is like. At this point I will usually talk with the class about our cultural notions of a “core personality:” the idea that we have a stable self that moves through life and the world while experiences bounce off of us, versus the alternative notion that we have no pre-set stable core self, but are, rather a summation of our experiences. This less familiar notion of self means that we are, every day, actively engaged in what ethnomethodologists would call “doing being ourselves.”

For the students, this is a particularly unsatisfying response. My answer is suitably academic, but what they want me to say is that parenting Eliza has made me a better person. They want to hear that I have become more patient, kinder, less judgmental – better.

But it’s not true.

I don’t think that parenting has made me any less kind, less patient or less open to difference. But watching Eliza struggle to fit into the world has made me angrier and more frustrated with the world. Just ask any parents of kids who are different about school and you will open the door to a flood of parental frustration, worry and longing for a school – any school – that would at least try to understand and appreciate their children. I am angry that school will never be a given for my daughter, the way it is for “normal” kids. Facing bigotry hasn’t made me a better person. It has made me sadder.

And I worry more. A lot more. Because my daughter is an only child and my husband and I will die while she is still relatively young. We will make sure that she has a place to live and that we have done all that we can for her before we die, but eventually she will have to be out in the world on her own. And the world is not kind to people who are different.

One year, and only one year, a student asked me, “If you could have known what it was going to be like with Eliza, would you have had her?” This is, of course, a variation on the first question, but a more complicated one. My answer was also more complicated. I didn’t answer with complete honesty. I told the students that I didn’t know how to answer that question because, of course, I didn’t know…and I still don’t really know because Eliza is still changing and growing.

But if I am completely honest, the truth is that some days I have regrets.

If I had known how difficult Eliza’s life and our family’s life was going to be, would I have been more vigilant with the birth control? Some days, the answer is yes. Pregnant at age 38, my doctor required an amniocentesis. If cerebral palsy and autism had shown on it, what would I have done? I don’t know.

Try to understand – I am not saying that I don’t want my child, or that I don’t love and adore her. I think she is amazing and I am always, without exception, her biggest fan and champion.

But some days I just want to have a normal life. An easier life.

I have often heard parents of young children muse that they simply cannot imagine their lives without little Bobby or little Suzie. I wonder what is wrong with these people? Perhaps the sleep deprivation of parenting has dulled their imaginative capacities.

One afternoon last year, I was sitting outside a play therapy meeting with the other mothers of the boys and girls in the group. Eliza was new to the group, so I was just meeting the mothers for the first time. We could hear yelling from inside the room. I commented, “That’s probably Eliza.” Sure enough, a few minutes later, the therapist came out, dragging Eliza, while Eliza desperately tried to bite her. We got kicked out of therapy. Again. Most of the other mothers looked at me with pity or with smug pride that their own child was so much better behaved than mine. Except for one mother, the mother of an autistic little boy in the group. She put her hand on my arm and said, “It’s okay. You are among friends here.” Then she paused, and cautiously said, “You know, there are many days when I imagine what my life and my family would have been like if I hadn’t had Jason.” It was one of the kindest things that anyone has ever said to me.

Maybe all parents secretly imagine their lives without their children sometimes. If they do, I wish they would admit it once in a while.

Then maybe I could better understand my own complicated feelings and better explain them to the next group of students enrolled in the Disabilities Studies class.