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.

wpid-lazymorning.jpgThe 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.

57 Comments on “Parenting a Child with a Disability: Choosing Stories”

  1. leticia says:

    I’m sure your little ones will value the time you took to write about your feelings and your thoughts during their childhood and will be more grateful for a mother who put so much thought into trying to do right by them than getting it right all the time. Your writing is a wonderful gift to all of them.

    • leticia says:

      Oh! And it is your DUTY as a parent to create as many embarrassing photos as possible. That 100 days photo is hilarious!

      • jisun says:

        Thank you! I try to always think: if I read this about myself as an adult, how would I feel? And I do write some of it to preserve the experience because so often I’ve asked my mom what *she* experienced in those early years, and she can’t remember!

        More embarrassing pictures, yes! A very grave duty, that one. ;)

  2. As you know, my blog, Whoopsie Piggle, is primarily essays about my kids. Only one of my five kids ever reads it (okay, so only three can yet read), and he only does so when I ask him to. I’ve heard this from other writers, that their kids seem generally uninterested in what they are writing, it’s seems on the level of considering the color of you parents hair or eyes. Often, parents just comprise the background from which the little people become big and launch out. Even in attachment-style families such as my own.

    So perhaps your little man won’t give it much thought that you’ve dedicated all these (wonderful, informative, emotionally real, funny) words to him.

    As for your parents, I agree with Leticia, great photo of Dictator Jisun! I wish there were more.

    • Galit says:

      I know many bloggers gradually shift their focus as their children enter adolescence and become more media-savvy.

      • jisun says:

        Thank you! Yes, I notice this as well. An interesting thing that I notice is that in the DS community, there’s less of that shift. Or else, it seems like it to me. And there are some who seem very conscious and careful about their experience vs their child’s, and some not so much.

    • jisun says:

      He might not care at all, definitely. I wonder what your oldest will think in five, ten, fifteen years? Or, if you wrote about a sensitive topic, such as many write about Down syndrome? Not that I think there’s any right or wrong, but I’d be curious to know what happens down the road for others…

      Dictator Jisun was not very fearsome, supposedly. ;)

  3. 3graces says:

    J, not only are your posts so relatable, you write the way I wish I could! So good. I always enjoy your insights, you know what’s up.

  4. You are a wise, wonderful and talented woman. Thank you for sharing and setting perspective for the day. Bravo!

  5. Diana says:

    This is really interesting. I like the idea that we’re constantly creating and breaking down narratives built for us by our parents and built by ourselves, but man is it scary. Even just in choosing a nickname for my son, the Little Jedi, I’ve built a narrative of the type of child he is. I put up pictures oh FB, have one or two on the blog; sometimes I quote what he’s said. But I’m becoming more conflicted about doing those things.

    • jisun says:

      Yes, think about this all the time. In the Down syndrome community there is a really popular phenomenon of sharing memes, with kids’ pictures accompanied by quotes or inspirational sayings. Some do this with great care, some are just plain awful. But still, I wonder, what is happening when we do this, you know?

      And I totally sympathize, since my kids all have monikers as well. Like is 30 year old Mouse going to say one day, mom, why on earth did you call me that?? But on the other hand, it can’t be only about them.

      So I guess we do the best we can. :)

      • Diana says:

        Yeah, it’s not quite the same, but there’s a similar impulse toward preemies.Little Jedi was an 8 week preemie, and I’ve seen lots of those memes and poems about how preemies are an inspiration and are only given to us because we can handle them, etc. Always bothered me somehow; it was like turning him into my own personal challenge and/or blessing instead of remembering his humanity, even when so small. I imagine that it’s even more complex in the DS community.

        I think we all do the best we can (or at least most of us-and those who are having these conversations for sure), especially given a world that is changing and has changed so much from when we were younger, grappling with a different kind of global community than previous generations. We’ve got new ways to use our voices, and even if there is some trial and error involved, that’s a good thing.

        • jisun says:

          Interesting, I didn’t know that about preemies, but now that I hear it, I can understand. I’m sympathetic to it–of course we want to make meaning out of difficult things. It just gets really complicated when the “hard thing” is something to do with your living, breathing kid! I think it gets amplified in the DS community because some people truly think that ppl with Down syndrome are not quite human (and will actually try to have a rational discussion along these lines). So then you add the inspiration/hero/special miracle from God stuff, and it is a hot mess!

          • Diana says:

            Yes, I imagine so. It all seems to stem from a lack of empathy. Of course, I think most problems in our society stem from a lack of empathy, but that’s probably an over-simplification.

  6. If only more dictators were that cute!

    Sweet and sincere. What more could a kid want from a story about them? xo

  7. Leah says:

    I really love this. I look forward to seeing and hearing Cora create her own story so much. It’s interesting to think about is perspective in writing. For so long the only voices any one has heard has been the parents. And those voices have been so instrumental in bringing about the changes that will be benefitting our children. I really hope to hear their voices more and more. And I do thi it’s important to keep this in mind. At first thought, I feel that I give my own thoughts in my writing, but I’m curious to read back and see if I still feel this way. And it gives me a bit more perspective on why I find certain writing so very grating, too.

    • jisun says:

      Yes! Frankly I want to one day facilitate a bigger voice from the community of people out there who actually have Down syndrome. Maybe Cora and LP will have their own blogs in a few years. :)

  8. Miriam says:

    Beautiful, as always. I think we *can* know our kids in a positive, healthy way- not projecting onto them or ignoring who they really are. I guess I feel like my parents didn’t know me at all and that sucked. I wish they had, you know?
    So I’m trying to strike a better balance with my kids, accepting that they may have their own stories but ultimately our stories will intertwine. I also think a mother’s intuition is pretty powerful, and that’s not a bad thing.

    • jisun says:

      Absolutely agree, especially about mother’s intuition, which is part of that duality I was talking about.

      I felt like my parents didn’t know me at all when I was younger. As I’ve grown older, it has changed. But then again, I really didn’t know myself back then. So hard, the balancing act…

  9. Lisa says:

    It’s possible that I write too much about my kids . . . I don’t know. I’m conscious of what I write about them, conscious that on some level, I’m borrowing from them without asking permission. And I’m conscious of the fact that one day, it may come back to bite me. I won’t enumerate all the reasons I continue to write about them anyway – it mostly has to do with coping and connecting, and it’s probably selfish.

    Once again, though, you manage to write something deeply felt and thought-provoking. Thank you.

    And, you were pretty darn cute!

    • jisun says:

      Well, I’m borrowing too. :)

      I think we all know that lots of things we do might come back to bite us, but it doesn’t mean we can’t do *anything* for ourselves. But I’m always uncomfortable with articles that a) generalize to a broader group without their permission and b) make no attempt to be conscious about their own issues versus their kids’. You’ve never done that in my experience.

      If mine complain, I plan to have a well thought out, passive aggressive guilt trip ready as a response. ;)

      • Becky says:

        “If mine complain, I plan to have a well thought out, passive aggressive guilt trip ready as a response. ;)”

        THIS made me choke on my cup of water. I’m pretty sure my favorite thing about your writing are the depths you dig into while simultaneously providing the levity to bring us all back out smiling with having both felt AND learned. Good, good stuff.

  10. Diane says:

    You were the cutest little dictator ever! ;) I would like to think I have some insight into who my boys are, but I’m sure one day they will look back on all of this and tell me how wrong I was! That’s okay though. I’m sure I write selfishly for myself at times more than I do for them. Anyhow, as always…great post! You’re so talented! XOXO

    • jisun says:

      I think it is both–we know them and we don’t. I remember very consciously keeping parts of myself from my parents as I got older. Not as an act of deceit, or even on a conscious way. More of a privacy thing, maybe. And those parts were always the things that I could tell perplexed by parents the most. I think parents still know their kids in that special way though, no matter how old they are. :)

    • jisun says:

      p.s. Thank you for those sweet words! <3

  11. modernmessy says:

    Lovingly and wisely written, as always. That dictator picture takes the cake, though!!! That is seriously the funniest thing I’ve seen all day, I’m sorry. So bad, it’s fabulous!

  12. That picture and your take on it at the beginning is HA-Larious.
    The rest is just gorgeous and I love that you wrote and shared it with me.
    Annnd the rest of the world.
    But mostly me. ;)

    • jisun says:

      You know, I love your comments because I always feel like we are sitting and chatting in a coffee shop. You either make me laugh or think, and I love that. :)

  13. kdub155 says:

    Please know how mature, and sadly, rare, your viewpoint on disability is. Also, I must say that this is wonderfully well-written.

  14. lclilienthal says:

    Jisun! You and your philosophies are so relatable to me and I’d love to sit and talk for hours about all of this – must get to see you. Until then, keep writing! I think you are adding such an important voice to the conversation.

  15. I’m so glad you wrote this! Especially as I prepare what I want to say at the 321 conference since I’ll be talking about this very thing!

    You’ve made me think – as always – and try to put into words what I feel about parents telling their stories. It boils down to this, (and obviously needs to be polished) … I think, parent narratives (good, bad, and ugly) are vital in a social history context. It’s important that we view them as not only what we aim to get out of them as writers (whatever our motives may be – awareness, support, or simply having a way to express ourselves) but also as a way of evaluating / understanding the social norms of the time and social context in which they are written.

    I do agree that some parents tend to use their stories to make generalizations about all people who have Down syndrome, (or whatever minority group they may belong to) but that’s part of the story too. Why do some parents feel the need or think it’s okay to do that? Is it because they think they can change the dominant stereotypes that are out there now and replace them with “better” ones? Is it because our society is so full of stereotypes and generalizations that it’s “natural” to think that way? I don’t know.

    I hope you continue to keep me on my toes! I do try to make sure I say – this is my view of the story and it may not necessarily be the same as Josh’s….when I’m writing. And so far at least he’s LOVED the pictures and video that I’ve shared because he says it means he’s “Famous!” lol… I do wish he was able to tell more of his own story though…

    Okay, I’ll stop blathering on now – but THANKS for this one!!!! Beautifully written and thought provoking! :D

    • jisun says:

      I don’t know why, and that’s a great question. I think honestly, some people are just not terribly careful with their words. A simple “me” instead of “we” would do it a lot of the time.

      I’ve been thinking about this parent narrative business… and in a lot of ways I agree, and yet… So often parents inadvertently hold their kids back, you know? Parents’ priorities are so often not aligned with their children’s (I’m thinking safety/ease vs. risk/struggle as a general example). Not that I think that parents have no place in the fight, they very much do. Just wondering out loud about the complications that the parent/child relationship brings to the advocacy/activism table.

      Can’t wait to hear how it goes with the conference!

  16. Lori says:

    I just love the way you’re maturely surveying your kingdom from your regal perch in your baby photo.

    An excellent and thought-provoking essay as usual.

    Would I get the “cure” for Katie’s Ds? It depends what you mean by a “cure”. If it removes some of her cognitive difficulties, by all means. If it changes her fundamentally, that would be a different story.

    • jisun says:

      I really struggle with the whole “cure” idea. Mostly, because often it is presented in a very clean, risk free hypothetical. And I’m sure in reality, any cure or treatment would be far more complicated. But mostly, I fear what my children would think and feel if I expressed the idea that they could be “better” in any way. I grew up constantly being challenged and pushed to improve myself and it was very difficult for me to be happy with what I had. That’s my story, though. And of course, maybe LP would grow up and ask me why I didn’t pursue a cure/treatment…

  17. Jisun, My little homeschooler, now in first grade, was born in water at home six-and-a-half years ago. To music. =) I appreciate your deep consideration of boundaries regarding your children as you seek to respect them as people now and the ones they are growing into. I have prepared all meals organic for my son these years, and have not vaxxed him – to keep HIM organic. =)
    Parents and teachers found this post extremely valuable and useful, and veteran parents seemed almost categorically to agree with the article I reference. Might be helpful for your girls:

    • jisun says:

      Yes, I’ve read a lot of what is cited there, I’ve always found myself nodding in agreement with those ideas. I was that girl as well, who was constantly trying to manage expectations and protect myself from failure/disappointment.

      I do think that solid principles would apply to all of my children, however, not just the girls. Not that my youngest is old enough yet to understand concepts like hard work and perseverance, but I fully plan to raise him in such a way that “smarts” is not the end all of attributes. Because it’s not. And actually, this is partially why I try not to blog about his milestones and development too much, because I don’t want it to be the center of the story I write for him in his early years.

      Anyways. Thanks for the link and the connect. I’m always glad to connect with another home birthing mama! :)

        • jisun says:

          Alright. I’ve been stewing for a couple days and I feel the need to come back to your comment. I tried to avoid calling out some of the things I saw, but the more I think about it, the more bothered I am.

          While I’m generally very positive about sharing links and passing around posts for the purpose of conversation, I’ve got to ask, how exactly did you see what your post as related to what I wrote?

          Also, while I am unapologetic for my choices to home birth and not vaccinating, I must say that I cringed a little at what you wrote. I don’t not vaccinate to keep my kids “pure”, and I’m very aware of the privilege aspect of eating organic food. It simply isn’t an option for many.

          But most of all, I can’t get over how you singled out my GIRLS as beneficiaries of your post about intelligence and achievement. I’ve mulled this over, and I’m having a hard time coming up with an interpretation other than you assumed that such a conversation wasn’t relevant to my son. And why wouldn’t it be relevant? He’s old enough now to understand praise, and he will inevitably be affected by my approach to intelligence and achievement.

          So I’m asking you in hopes of an honest answer…

          What was the point of your comment, other than to post a link to your own blog?

          • Oh DEAR.
            I really don’t need this.
            I shared the link as an afterthought before hopping off simply as a fellow parent bc as I said, it had resonated with parents deeply. Bloggers do that, and last wk alone several of my readers left me links. People do that when we see it as seed for discussion or a source of commonality.

            I don’t see why you have to read into the whole vax, organic thing.

            You’re right. The post I shared should apply to your son, too. I have no problem saying that. I do have a problem with the intense rude anger.

            I am baffled. The point of my comment, of my time there, was to stop and say hello. What bloggers do, last I checked. You looked Korean and we seem to have a lot in common.

            I did not expect to be recompensed with such an angry response after my thoughtful time on your posts, reading through your journey. I am very sick at the moment and will not be opening any more comments from you. I am relatively new out here, not a year old and have much to learn. But never have I been attacked like this for initiating a relationship.

            • jisun says:

              Thanks for admitting that your post should apply to all children. I hope you will consider how hurtful that would be if someone said that about your child.

              I’m still, however, unclear. Are you saying your post did relate to what I wrote, or not? I’m all for exchange of ideas, when they are relevant. I’ve linked on other people’s blogs, and been happy to read what others have linked on mine, when they seem to be applicable.

              I’m sorry you’re feeling sick about the interaction, but I felt the need to speak out on something that bothered me, on my blog. My door is open to keep talking about this, because I’m not afraid of a little disagreement as long as it stays civil. I’d suggest that next time you initiate a relationship, you’d refrain from judgmental comments or insults to people’s children, and things might go a little bit better.

  18. Choosing says:

    A lot of food for thought in this post!! I especially like the last sentence…. – Talking about parents wondering what happened to the child they “invented”: my mother recently surprised me by stating: “You know, I just realised how much you are coming after your father!” …. All I thought was: “Sure! Glad you realised it at last… I am his daughter, right?” ;-)

    • jisun says:

      Haha, I’ve had a very similar experience. And it is interesting as I get older, make my way through parenthood, marriage, and other big life changes, different parts of my parents come out in different ways. :)

  19. Leigh Ann Arnold says:

    Man I swear sometimes you are living in my house and putting my thoughts down for me! You have an amazing way with words! We are headed to San Diego,CA the middle of next week to get out of all this snow, not sure it is anywhere near you let me know if it is would love to meet the famous Jisun!

    • jisun says:

      (“famous Jisun”, snort, laugh, snort!)

      Oh, no, you are coming so close yet so far! We are in Northern California, near San Francisco. I can’t convince you to change course, can I? I guess I will just have to feel the Arnold vibe from afar. ;)

  20. I cannot even begin to tell you how much I loved this post. I came across your blog after you commented on mine and I’m so glad I found this post today. I struggle a LOT with worry about what my son will think of what I’m writing right now. It’s difficult to strike a balance between honesty about my feelings and respect for feelings he may have one day. I can’t predict or assume how he will feel about his disability when he is an adult but I want to do his feelings justice while doing justice to my own.

    Since my son (like yours) is still so young, the emotional side of life with special needs is much more mine right now than it is his. But that will change very soon. I don’t want to make his life about me but I do want to help mothers who are new to this world see that they aren’t alone. And above all, as you said, I want “to clear the way for my children to tell their stories.” Reading your words today made me feel like that is possible. And I can make mistakes without ruining my child forever. :) Thank you.

    • jisun says:

      Ha! Well, if we are ruining our children, then we are joining the ranks of many, many mother-child relationships. Most seem to turn out ok, disagreements and all, so I’m banking on the odds! ;)

      I felt the same way about stumbling into your blog post about being defined by one’s disability. It had really been on my mind and you so perfectly described it for me.

      Gah. Parenting is so hard, isn’t it? I’m still waiting for that perfect how-to manual.

  21. a says:

    Everyone loves it whenever people come together and share opinions.
    Great website, continue the good work!

  22. […] first came when a friend and fantastic writer focused her blog on “Choosing Stories.”    In it, she talks about how we as parents who write about our children who have Down […]

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