Parenting a Child with a Disability: Choosing Stories

My parents did some messed up stuff to me.  In fact, any people who try to say that their parents didn’t mess up in some way or another are highly suspect in my book.

Some of my moments were funny, like the North Korean dictator picture that my mom got of me when I was 100 days old.  Since living 100 days most likely meant that a baby was healthy enough to survive, it is a very important mark in a Korean baby’s life.  Parents have celebrations, take pictures.  There’s a lot of rice cake involved.  Why my mom thought it would be a good idea to dress me in blue, sit me on a red and gold throne, and forever preserve the vision of me looking like a communist dictator, I’ll never know.  (Don’t get me wrong, I dislike the pinkification of girls nowadays, but in my particular situation, I don’t think the blue outfit helped me look less of a middle-aged dictator, that’s all.)  I asked her once, why it had never occurred to her to dress me in something different, maybe do something to my hair that didn’t make it look like a mash-up of an Asian Flock of Seagulls and a Wikipedia entry on “Male Pattern Balding.”  Her response was simply wave her hand at me and laugh.  Pshaw.  I was so cuuuute!  Silly me.

Now, that dictator picture will forever be a part of my history.

The thing is, as I got older, their  history didn’t always match up with mine.  I remember ordering something unexpected off of a restaurant menu and my parents exclaiming, “But you don’t like eating that.”  I remember wanting different styles of clothes and hearing my mom say, “But that isn’t you.”  There was also the more complex narration of my life, like what it meant to be Korean, a woman, an immigrant, accepting the death of my baby sister.  Much of this narration was lovely and empowering.  But I’ll be honest—some things, in hindsight, were less so.

I’d had absolutely no say in my beginnings.  How could I?  I had no conscious decision-making hand in how loud I cried, how chubby or skinny I was, my sleeping habits, my baby temperament.  I have no memory of my first words.  I don’t recall my favorite food, or how much I loved strawberries, or that time I had to go to the hospital and get IV fluids.

Now, as an adult with my own family, I understand that there are times when my parents look at me and wonder who I am.  My story has veered off into places they never expected.  When we planned on having my baby at home. Yes, without a doctor, mom.  When I told them that we would be pulling Mouse out of school to homeschool her.  Yes, mom, without teachers.  Not at school.  No, I’m not planning on enrolling her in a different school.  No, mom, not any school.  My broader beliefs have made unexpected turns as well, like the fact that I’ve retained a belief in God, yet left Catholicism.  Or my views on race, class, gender, and more recently, disability.  I doubt that in the early years of raising me, they could have predicted the trajectory of my life and beliefs.

I know that part of them scratched their heads in confusion.  Where did our little girl go?  This isn’t the way we raised her.

Still, I’ve come to recognize that we—my parents and I—live a duality in which they know me better than I know myself, yet at the same time don’t know me at all.  They know parts of me that I’ll never know except through intuition.  I can’t put words to who I was in the early years of my life.  What’s more, they actively shaped who I was in those early years.  Back then, I didn’t have the communication skills and maturity that I have now, but they did.  So they lent themselves to me.  They were simultaneously conductor and amplifier.

Somewhere in the plot line, I looked at the values they’d given me, the stories they’d created around me, and knew that none of it was wholly mine.  And what I wanted then was a self that was completely, wholly, utterly mine.

I’ve contemplated many times what it means to raise a child with a disability.  I will never fully understand what it is like to have Down syndrome.  As I write about my son, I am acutely aware of the fact that I’m constructing a story that he’ll later have the choice to dismantle in place of his own.

When I look at a lot of what causes strife in the Down syndrome community, much of it centers around these narratives that parents choose for their children.

Is Down syndrome natural, or an error that would ideally be fixed?  God gave me this child for a purpose…  My child inspires me to be [insert positive adjective here], why shouldn’t others be equally inspired by our lives?  I grieve for the child I didn’t have…  There are so many bad images out there, let’s create some positive ones…  Having a child with a disability is hard/sad/scary, and I am entitled to be honest about that…

What I try to keep first in my mind is an awareness that with every word and picture I make public about my children, I’m creating a story in which they have no say.  I try to be very careful balancing what I think are my needs and theirs.  There are times when my story will line up with their stories, but I try to be respectful of when it might not.

The reason I am not interested in “curing” Down syndrome is because I could never look him in the eye and tell him that I wished him to be fundamentally different.  While I understand that many people believe that God works through all of us, I can’t say that having a child with Down syndrome is a gift from God, because I don’t want to single out one of my children to have a greater spiritual burden than my others.  My child might inspire me, but he might grow up and resent being the object of inspiration for perfect strangers.  I might have all kinds of feelings about what might have been or should have been, but I owe it to my children to work out the bulk of those feelings without involving them directly, because right now, they are whole, human beings and there simply is no might have or should have; there is only what is.  The stuff that is hard?  I’ve got to explore the possibility that I’d find any situation hard, and that has more to do with how I cope with stress and adversity than anything to do with my child or his diagnosis.  Above all, I’ve got to own what’s mine and respect what should be theirs.

Where to draw the line?  What if I draw it wrong?  LP may grow up and want a cure for T21.  He might believe that he is God’s tool on this earth, sent to inspire others.  He might wonder about a life with only 46 chromosomes.  Heck, he might be annoyed that I spent so much time writing about his chromosomes at all.  What’s certain is that his story, like all my children’s stories, will twist and turn in ways that I could never have predicted.

If—when—he does tell his own story, I’m sure he’ll look back at what I have told and tell me that some of it was wrong.  I’m ok with that.  I want that.  I have no doubts that I’ll mess up, but I’m trying my best.  I’m sure that I already have.  Messing up is natural in every parent-child relationship.  It is how we deal with that gap, the space between our stories, that matters most.  I hope when the time comes, I’ll have the grace to sit down and listen, as my parents have tried so hard to do for me.

I didn’t bring them into the world for their lives to be about me, after all.  Fundamentally, I see my job as a parent as a duty to clear the way for my children to tell their stories.