girl versus the world and her mother

“let’s go around the room and say whether or not we’d abort if we found out we had a child with down syndrome.  okay?”

i’m at a book club.  only two women in the room know my oldest child.  i came because they were reading this book and i was interested to see what they would think.  i hadn’t told our story on purpose because i wanted honesty ringing in my ears.

i hadn’t expected this.

i’m in the principal’s office with mazzy and we’re talking about having her start part time at abe’s school next week.  we sign the papers and mazzy reads a bit from sugar snow and we discuss what her educational experience has looked like thus far.

“can i ask you a question?” the principal asks.

yes.  yes you can.

“do you always talk about mazzy in front of her this way?”

it takes me a minute to understand what she means.  but then i see.  i’m so matter of fact about down syndrome and her capabilites, where she is lacking and what her strengths are.  i speak of her as i speak of myself.

but mazzy is not me.

mazzy is her own person and standing right in front of me is a woman willing to challenge me that maybe i’ve lost sight of that.

when it gets to my turn at the book club, i try to keep up the game and act as if i don’t have a child with down syndrome.  so far only one woman has said she wouldn’t abort.  everyone else has hesitated for fear of judgement or stopped to explain why they couldn’t handle the responsibility and then said, but yes, they probably would.

i start to talk and say no, no i wouldn’t abort.  but my voice cracks a little and i end up crying and i tell them all that i do have a child and how surreal it feels that they are sitting in a circle at their nice book club, drinking wine and talking about whether they’d end the life of a child like mine.

the girl who posed the question is totally embarrassed.

but it doesn’t stop them.

somehow, even after my confession, the circle keeps going around.

the truth hurts sometimes.

i tell the principal my thoughts and i’m crying again.

“i guess when you have a child with a disability, it’s a real temptation to lose your identity in them.  i know it’s not good for her and it’s not good for me.  bringing her here, trying out this school, is letting go a little for me.  but you’re right.  she’s getting older and i should think about how i’m speaking in front of her.  thank you.” 

always when you scratch the surface of my heart is mazzy.

i don’t know all the reasons that i guard her so fiercely.  maybe it was that conversation at the book club.  maybe it’s fear.  maybe it’s a mother’s heart on overdrive.

whatever the reasons are they don’t stop her from turning twelve this month and they don’t stop the world from being the world.

mazzy, blessings on you next week and in this world and in the next.

i was interviewed about this post on family life radio.  listen to it here…

31 replies on “ girl versus the world and her mother ”
  1. What the principal said to you… I kind of like the fact that she saw Mazzy as a (almost) 10(!) year old so clearly. Clear enough to call you out on talking about these things in front of her. To help you see her more clearly. Which, so often you are the one trying to get people to really see her. I like this woman, a lot.

    As for the book club… I just don’t even know what to say to all that.

    love you.

  2. WOW…the book club. I felt the same as the person in the last comment. At first, I didn’t even know what to say, I was flabbergasted by such ignorance. Your story made me tear up, I can’t imagine how you were feeling. Good for you for being honest with them though and not keeping it in. It blows my mind…1. that a question regarding such a personal and “real” subject was treated so lightly…2. the conversation continued after you told your story. I give you credit, you handled it the best way you could have, I think I would have been so angry that it wouldn’t have come off so nicely, especially if the group continued on, as they did. You are a such good person…and a wonderful mom. Always remember that!

  3. aggey ~ i thought you’d like her.

    cori ~ you’re sweet, too. it was one of those i can’t quite believe it’s happening moments…always come up with the right thing to say about four years later.

  4. I can imagine that conversation at a book club. I can even imagine taking part in it. The world changes a bit when it affects someone we love and not just “someone out there.” Makes me think (again) of how careful we should be with our words.

    I read that book when it first came out. There was much that shocked me and made me realize how insulated my world was!

    Thanks for sharing. Happy Birthday Mazzy–Enjoy your new schooling adventure!

  5. i’m thinking zena of my experiences of my exposure to down sydrome children and their mothers. when i worked at providence hospital in human resources, i befriended a nurse in our department. she always mentioned scooter by name in passing, and i picked up a different aura around this little boys name. she never told me he had down syndrome. then i met scooter, and his mother gave me a look; see my tragedy.
    i didn’t know what to say—–a wall. and i continued to see this wall as i saw mother’s with a down syndrome child. YOU weren’t this way; you let me experience Mazzy.
    then when i became a teacher, i saw all kinds of children with disabilities and their mothers. every child was the same to me; i did know their strengths and weakness’s; their strife, hurts, joys. i loved them. mother’s and father’s, a different story. their looks of anquish, “how is my child doing with no arms, the several who were raped, the tiny girl whose mother burned her hands over a stove—these were my children. of course i never saw the harmful parents, but the loving parents i did see—-they are fine I say, ” loving the joy of art.”
    There is a painting by a favorite artist of mine: Andrea Mantegna, and he painted the Madonna and Child. The Child has Down Syndrome. now why would he do this I wonder? maybe a down sydrome child is to be seen, not to hide away and let die…..or to see something beyond the differences. he saw something!!!! it’s not a tragedy….. a child getting killed my a car is a tragedy.

    I like the quote from the movie Fried Green Tomatoes:
    Idgey Threadgoode: ” What if God made a Mistake?”
    Buddy Threadgoode: ” Well the way I see it is HE doesn’t make mistakes, I mean, He made sure we got together didn’t He.”

  6. Years ago there was a girl who was date raped and she got pregnant. She gave her baby girl up for adoption and my friend was blessed enough to receive the baby as her own. Whenever abortion came up in the conversation people would say “what about people who were raped?” as if the OBVIOUS answer was abortion, in that case. Finally one day my friend had enough and she answered, “I wouldn’t have a daughter if a wonderful young girl had not been brave enough to keep her baby after she was raped”. The person who made the comment then said “What are you going to tell her when she grows up ABOUT HER FATHER????” My friend said “the same thing I tell her now, that her father is God”.

  7. Hi Lori.

    I too know a friend who was raped and became pregnant. An incredibly painful life experience to say the very, very least.

    I’m glad your friend has been blessed w/the child – though I do agree that it would be very hard to know your natural father was a rapist.

    My point in sharing my story at the bookclub is not to judge abortion overall – I wanted instead to talk about our society’s rejection of people with Down Syndrome. One of the many ways that happens is through abortion.

    Thanks for reading,

  8. This makes me think about my adoption journey. As someone who chose adoption because I wanted to adopt, but then was rejected from some adoption programs because I have MS, and then found myself looking at a piece of paper where I had to tell what I was “willing to accept” in my new adopted child and seeing my own disease listed there… it all came full circle. To think that I have lived this full and happy life and another child could too but might not get a chance! All that said, I realized that sometimes we know what we are capable of and that it wouldn’t do a child or our family any good if we took on a situation that we weren’t prepared to handle (for us at the time, that would have been a child with extreme disabilities). I had a lot of guilt about marking that box but I knew that I could not do the job that the child would need me to do at this time in my life. Anyway, my point is that I’ve walked that line and it was hard for me to even see it… and I am a very thoughtful person… so it doesn’t surprise me that others might talk this way. Some people are incapable of that level of empathy until they are faced with the situation themselves.

  9. thanks for your comment rachel –

    i agree with you, it’s not surprising to me either. i believe myself to be a person who wouldn’t have that level of empathy and only do because i, myself, was faced with the situation.

    however, i was still wrong.

    adoption is comparable to a point. i share the story not to sit in judgement, but so that people will give a bit more thought to the absurdity of ending a life solely based on the diagnosis of a disability.

  10. This is the second article I’ve read on your blog—and, I feel compelled to comment again! I sat in a similar circle discussion… in fourth grade.

    In my previous comment, I shared that I am hearing-impaired since birth. I attended a regular public school. We had a part-time teacher who led our reading group. One day she asked if someone with a disability should live if they wouldn’t have a high quality of Life, such as not being able to walk or see. I know now she was asking about abortion, but she didn’t use the word.

    My classmates, none with disabilities, said, “No, they shouldn’t live.” I said, “Yes.”

    I just remember feeling so unnerved… if it had been their decision, I would not exist. Pretty wild day for a fourth grader & something I never forgot.

    P.S. The folks in your book group were beyond obtuse to continue their “discussion.” Seriously? They really are unable to see

  11. “i guess when you have a child with a disability, it’s a real temptation to lose your identity in them.” I feel like it’s tempting to lose your identity in any one of your kids, disabilities and talents aside. They are such all-consuming creatures for us as mothers for so long, and they are our hearts walking around outside our bodies. With so much potential to experience the world, who wouldn’t want to live somewhat vicariously through their kids, even for a little while? I know you see that as a flaw, but it’s also a blessing. I guard my kids pretty fiercely as well, if only to keep them young for just a little longer. There is no manual for any of them, Zena…and you are doing a great job with all 3.

  12. thanks chelsea – you’re a great mother too! i miss you – maybe we can hang out soon?

    losing my identity in mazzy’s needs is what’s tempting. i agree with you – seeing the world through their eyes is a gift and i do enjoy it very much! but there is more to life than care taking…i don’t know…another blog post for the future perhaps.


  13. Beautiful writing and a beautiful family. I consider it a blessing to happen upon this post because I once grew a beard with people on the internet.

    Tears and earnest prayers to God poured out just now. My wife and I want to have kids–healthy kids, disabled kids, any kids–to experience the joys and the struggles of parenting. To experience another life. And we are struggling to conceive. I might sound very naive about it all, but that’s only because I am very naive about it all; I just want a kid.

    Thank you for helping me pray, even if you didn’t realize it.

  14. What does it matter to you if other women terminated their pregnancies if they received a diagnosis of Down’s syndrome or not. It has nothing to do with you or your daughter. It is their choice and not related to your life at all.

    Just like the principal noting you were too enmeshed in your daughters life, so is the Down syndrome community involved in trying to convince the stories of having a child would influence someone who may not want to or be capable of raising a child with cognitive and medical problems. One story for one life does not translate into another story for another life.

    I terminated for Ds and it was a difficult choice but one we don’t regret. If you’d have talked to me before getting pregnant when it wasn’t a reality,
    I might have said I’d terminate but I also might have said that we would be able to take care of a special needs child since we have the financial and educational resources to do so. But when the reality hit, and thinking of her health and my health (Ds pregnancies have higher rates of miscarriage based on age the specific medical conditions of that prefnancy) our thoughts changed. When we really looked deeply into a life of a child with Ds and who would take care of her and many other factors we made
    Our decision. It was heartbreaking but correct for us.

    Likewise, when we went through our loss a friend who is very pro choice also found out their child would have medical problems. She chose not to terminate as that was the correct decision for her family. Each story is unique.

    I doubt that the women who made you cry truly spent time thinking about the situation in a real way.

  15. Lots of things matter to me.

    The point of this post is the disregarding of someone’s personhood based on one factor: disability. I have done that as a mother, the women at the book club did that off the top of their heads.

    Your heartbreaking decision was your own and I’m not your judge or anyone else’s. I’m telling our story with as much truth as I can bear. Sounds like you are trying to do the same.

    – Zena

  16. This is a wonderful post. Thank you!

    And to Sarah, it matters because we are doing away with an entire group of people. Eugenics, not abortion, is the issue. It is frightening to me, as a parent of a child with Ds, that there is a very real possibility that Down syndrome will become extinct. The world will not be better off because of it, but diminished.

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