Thursday, June 3, 2010

pass/fail

in my master's program for painting, one of my favorite courses (even though it involved a lot of mental gymnastics) was introduction to critical theory. in a very brief and inadequate definition, critical theory is the examination of culture/society.

bear with me for a moment as i get to what i am thinking about:

binary systems was one of the concepts we spent a great deal of time discussing and studying in critical theory, and refers (essentially) to pairs of polar opposites within a culture: male/female, presence/absence, civilized/savage, crazy/sane, rational/emotional. it is much easier for us as humans to categorize according to binary pairs rather than deal with the grey area that lies between these two places. in other words, we like to put people, emotions, situations into boxes or categories so we can simplify and deal with them more easily.

i've been thinking about this a lot as i think about monrovia. she is deaf, but she can hear and speak. still deaf though. it sort of puts her into this weird in-between place in which she isn't totally hearing or totally deaf. i wonder what her experience of processing who she is as someone in between the identity of "deaf" and "hearing" will be as she grows older.

i thought of it again as baby ruby took her newborn hearing screening in the hospital last week.
we didn't know if she would pass or fail.
we had so many mixed emotions.

when the screener came in, she said, "i'm just here to do a little hearing screening." of course, this had been the part that we had been anticipating, knowing that for us it wasn't "a little" hearing screening at all.

ever since m took her hearing screening 2 years ago and didn't pass, it has been something we've thought and talked about: when we would visit friends' new babies in the hospital and see the hearing test checked off the list of things to do before they checked out, when we saw a pamphlet about the screening lying around at a friend's house whose brand new baby had just come home, when we discussed whether we would have a second child (i actually envisioned the moment of the 2nd baby's hearing screening & played it through in my mind more than i did about labor.)

matt told the volunteer screener, "i just want you to know that our daughter is deaf, so we just want you to be aware that this will be very emotional for us no matter what the results are." she didn't really seem to hear him, because she said, "well, if she doesn't pass it's most likely she just has fluid in her ears and we'll just retest her a few times." (i wanted to say, um, if she doesn't pass it is probably because she is deaf just like her sister is, but i didn't say anything.) then she told us how valuable and important the newborn screening was for identifying hearing loss early. (which, for the record, i totally agree with, but i don't know that she needed to be telling us that considering the information matt had just given her.)

we sat on the bed looking out the window and squeezing each others hands, not knowing what either result would feel like once we heard it out loud.

the screener checked her right ear. she passed. and then the left, and she passed again. she showed us the results across the decibels on her little machine, and then she gave us a copy of the results and left, closing the door behind her.

and matt and i both started sobbing.

there was and is so much wrapped up in that hearing screening and in the results.
we didn't tell anyone the results all day.

it seemed to be something we just needed to keep for ourselves as we processed that ruby was not deaf.

you know, when little m was diagnosed with profound hearing loss it felt as if the world was caving in on us. we were so swamped, lost, suffocated in grief. we didn't know a way forward. i remember feeling emotionally numb, and i just wanted to escape into myself. i'm not sure how to express this exactly, but we were so, so incredibly sad and at the same time, we never wanted a different daughter. it wasn't sadness because she wasn't perfect, or because we had certain expectations for who she should be; we were grieving knowing that life would inevitably be harder for our daughter. and, as you know, life can already be pretty hard as it is. we were grieving the unknown. we were grieving what we saw as losses for her- not to be able to hear us sing to her lullabies or the birds outside her window or the million other sounds we take for granted. i think i was also scared- i felt like didn't know how to be a good mom, much less a good mom to a baby who couldn't hear me. yet even in the darkest moments, when we had just learned that m was deaf, we didn't want anyone other child in our family. and having her in our family meant having a deaf child.

so, because it was so hard for us, because we grieved her deafness so deeply, because we had talked and re-talked the potential outcomes of the impending hearing test, you would think that we would have been hoping and praying that ruby would pass the hearing screening.

but that isn't what we were hoping and praying. i think we wanted to have the grace and strength to know how to parent either way: two deaf children or one hearing, one deaf. both present complexities because parenting is inherently complex, whether your child(ren) have special needs or not.

it may sound odd, but part of me hoped our second child would be deaf. really. (of course if someone else said this to me, i wouldn't like it very much-unless they, too, had a deaf kid, but it's ok for me to say it myself.) in some ways, to have another deaf child would have given little m another sibling who doesn't quite fit into a box, or a binary opposite...just like her. the two of them could have each other to work through identity issues. matt and i are both hearing, so as much as we love m, we will never completely know what it is to be deaf but also be able to speak and listen with implants.

part of me hoped he or she would be hearing - just because it is easier, in so many ways (both for us and for our child). no barrage of appointments with doctors, therapists, the school district. no hearing aids, insurance companies, surgeries, countless medical bills & paperwork. and of course because then, aside from all of those logistical reasons, our child can hear.

to be perfectly honest, on one level to celebrate ruby passing her screening without recognizing these complexities feels a little bit like a betrayal to little m and the fact that she can't hear without cochlear implants. a betrayal i guess because to celebrate ruby's ability to hear implies that little m is deficient or that we are celebrating who she is not and can never be.

she so when people asked us whether ruby passed the test, we hesitated to answer right away. because we were and are grateful that ruby can hear, but regardless of whether the results were pass or fail, each road had the potential for the loss of some things and the gifts of others.

as we have grieved m's deafness, learned to see the many gifts that have come from raising her, and don't want another child besides little m, we have moved into a place where it isn't as neat as pass/fail. hearing/deaf. celebrate/grieve.

i don't know how much this makes sense or doesn't make sense, but it is just an acknowledgement that both of our daughters are a gift, one hearing, one deaf. that having a deaf daughter has been in some ways a treasure, even in its difficulty and hardness and grief. and the emotions that came rushing at us as we learned that ruby could hear don't really fit into a box. i am so, so grateful that ruby can hear - that she doesn't need implants to listen and speak.

nonetheless it was a whole lot of different feelings sloshing together, mixed up and messy.

13 comments:

  1. ok. it is nearly 11:30 pm and i started weeping while reading this post. john is sitting on the sofa reading this post now.
    so. there are so many things i want to say to you. first accept a hug across the web. remember i too am a parent of a hearing child and a deaf child and i can relate, except my version of the story happened in the opposite order...hearing child and then a deaf child. the joys and sorrows can not be separated nor compare. celebrate ruby's hearing...it is a gift. celebrate roro's bionic ears for they are a gift. the girls themselves are gifts. you know these things, i know. you are an incredibly brave and blessed woman. so is matt.

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  2. What a beautiful post. I have felt the same on many occasions.

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  3. Oh, my. What an absolutely beautiful and important post. I confess, I've been anxiously awaiting the results of The Test -- checking your blog daily to see if you were ready to share the news yet. And I was waiting for it with the same feelings you were (although, I'm sure, less intense) -- knowing that it would be a mix of emotions either way. And that it would ultimately be a good outcome for your family, either way.

    I guess this is the most striking line from your post: "regardless of whether the results were pass or fail, each road had the potential for the loss of some things and the gifts of others." So true.

    I feel a little guilty for putting so much emotional importance on The Test, at a time when the most important and fundamental thing is that you have a beautiful, healthy baby in your arms. I guess we both heard that line, back when we found out our child was deaf -- "Well, the important thing is that he's healthy" -- as if that were supposed to drain away all of the grief about the hearing loss, and restore a "healthy perspective" on things. But you know, having a baby is a time to feel things deeply, not to worry about having a balanced perspective on things. Balance and perspective come with time; right now is a time to celebrate the emotions and immediate reality of life.

    Sorry for the long comment. Thanks for the beautiful post.

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  4. thanks for the authenticity of your messiness. you paint vividly with a keyboard. thanks for daring to go there

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  5. Wow. The same wave of emotions came over me reading your post as they did when we anxiously awaited Emily's test results, too. It is so comforting to know that the waves of sadness, guilt, joy and thankfulness are universal in our journey. You touched upon each and every single thought that played through our minds as we had much the same experience with the lady, "giving *just* a little hearing test" and we received much the same response when we told her that Landry is deaf.

    Thank you for putting, again, into beautiful words what I haven't been able to. It makes me want to send the girls to your blog when they're older so they can read what is essentially our story as well, but expressed far more perfectly than I could.

    Sending hugs,
    K

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  6. i too was waiting anxiously to find out the results of the hearing test. i felt so shallow & gross, so i would never ask you. not ever. because i didn't want you to think that it's all that mattered to me. after reading your post, i think you summed it up perfectly. i am your friend and i am so happy for you, Matt & little M...and now Ruby! you have a beautiful family and you are an incredible mother. those girls could not be in a better sich than they are now.

    ps. way to put the "p" word in your post. i gagged.

    pps. i also cried ;)

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  7. I got chills reading your blog today. I am so thankful Ruby can hear and I am so very thankful that Roro has the special gift of hearing. There are lots of messy feelings in life-like a grandchild with no father in the picture, but I cannot imagine life without that special precious granddaughter. Everything is beautiful in its time.

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  8. sorry i've been so MIA from commenting on your blog... i've been reading through my google reader. first, congratulations on your beautiful ruby! And thanks for the really great, thoughtful post. There are many of us who understand exactly what you're trying to say. It was beautifully written, and made me cry too... celebrating/grieving with you...

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  9. Your beautiful thoughts and words have absolutely sent tears streaming down my face and have touched my heart. The complexity of this is something I find so difficult to articulate - especially as I am in the 'one day' category and haven't experienced a second birth yet. It's something I think about all the time. You have shared these grey areas (but aren't these little grey areas some of our greatest treasures?) so beautifully, S - much love to you all.

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  10. Beautiful post..Ruby has a gift-the gift of hearing.Little M is a gift from god to you..cherish them both for they are special and unique in their own different ways.

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  11. Susannah, this is so well written. You have two beautiful gifts, and what blessings they both are!

    I have to admit I was watching for the results of The Test as well- I think all parents who have had the big "refer" word come through on the newborn hearing screen think about it.

    My older son was severely speech delayed when Nolan was born, and when Nolan didn't pass The Test, we anxiously awaited testing on Matt (who was 2). Lots of different feelings came to the surface when he passed, rather similar to what you described. I love this post.

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  12. love this post. love your family. love you. thanks for sharing your heart with us.

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  13. Beautiful, beautiful post! Your girls are lucky to have one another and such wonderful parents.

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