Kana's Chronicles

Life in Kana-text (er… CONtext)

 

Elena Grace–Mommy’s little handful

When my youngest daughter was born, I didn’t know if I’d get to keep her.  She arrived three months early, weighing in at just over two pounds, and I scrapped her intended middle name in favor of “Grace“–if she stayed with us, it would be entirely a matter of Grace.  In her three months in the NICU, every major organ system failed at some time or another, and she regularly stopped breathing in my arms.  As a mark of how a person can adjust to anything, I stopped even experiencing an adrenaline rush when she turned grey in my hands; it was just part of a regular day, even after she came home.

When Elena Grace was three months old (weighing a whopping five pounds), I was planning a family party to celebrate the fact that she’d survived to her due-date, and life might be heading toward “normal” with the NICU behind us.  The day of our due-date-party, though, I spent an hour of the afternoon sobbing in the parking lot of the audiologist who had just told me she was profoundly deaf.  Her ears were perfect, but her auditory nerves weren’t functioning–an  irreversible condition, and a diagnosis confirmed by several specialists.

the Confirmation verse my mother cross-stitched for me, hanging now in Elena Grace’s (too-pink) room

At her baptism, the priest got to a line about “our Lord Jesus, who made the blind to see and the deaf to hear”… and to his consternation, the entire family dissolved into tears.

Miracles like that don’t happen in our world; they fall in that category of “impossible.”

I thought of the long weeks before I’d been allowed to hold her, the hours I’d sat beside her plastic isolette wired with tubes and alarms, reaching my hand through its sterile porthole to touch her head (as close as I could come to holding her) and singing to her, because it was all I could think of to do.  I figured if I couldn’t cuddle her, I could at least be present to her through my voice. I sang Amazing Grace over and over and over in those months, hoping she’d know that Mommy was there.  Not yet realizing that she couldn’t hear me.

My way to deal with any challenge is to research.  Within a month of her diagnosis, I had a bookcase full of marked-up and thoroughly-thumbed books on sign language and education for the deaf.   I’d get myself propped up with enthusiasm and assurance—“I can deal with this”—but that confidence was deflated easily, and repeatedly.  I was cheered by the sight of a couple in the car next to mine at a stoplight, conversing with one another in Sign.  And then the light turned green and they had to stop talking in order to drive.  My three-year-old son would chatter at me from the back seat, and I realized I wouldn’t be able to hear her when she started “chattering” from the back seat.  I’d given her the loveliest name I knew, and she would never hear it.

At that point I was in the middle of my MFA in creative writing—a topic which suddenly seemed irrelevant to the point of inappropriateness.  My own first language, I realized,  was one my child could never use—and I didn’t yet know the language I would need to communicate with her.  I was frustrated, I was angry, and the Poet-in-me channeled her anger onto the page (…which maybe shows the writing-focus wasn’t as useless as I felt it to be at the time)…  During my Master’s defense, when I was supposed to read a selection of my poems, I Signed this one…

Body Language

I am learning a new language
my own
rendered inoperable by my daughter’s deafness
and I am thinking as I fumble silently
of the grace of hula dancers
with stories in their hands

these page-words have lost relevance,
no correlation between printed words
and hers
even the name on her birth certificate no relation
to the name she knows, the  motion of fist near chest
strong-mighty-healthy-E, a defiant second christening
that does not lend itself to the page
or to my wishes

I imagine discarding the page altogether,
poetry unprinted, I imagine performing
an unwritten thesis,
a single copy existing in the movement of my hands, I imagine
holding my palms to the MLA-nazi in the graduate office
and telling her, “format this!

About six months later, I could have sworn I saw Elena Grace turn her head at a sudden noise.  After a week of sneaking up on the poor child with pots and pans, clanging things behind her head to look for reactions, I decided to get “scientific” with a controlled test.  I crept up to her crib while she slept, waved my hands all around her face and head (to make sure the movement wasn’t something that would wake her), and then did the same with a noisy rattle in my hand.

She woke.

Elena Grace, 2010

I sank onto the nursery floor and wept.

More than a dozen specialists—audiologist and neurologists and I-don’t-even-know what other -ologists—are still scratching their heads over the strange case of Elena Grace.  With multiple confirmations of a diagnosis for a condition that’s irreversible, the idea that she might hear was (I was told repeatedly) “impossible.”

And as those puzzled specialists repeated the word “impossible” while staring uncomprehendingly at the incontrovertible evidence of her hearing, I began to arrive at a new understanding of that word.  Hanging now on her wall is the cross-stitch picture my mother made for me when I was fourteen, with the confirmation verse I had chosen (Luke 1:37): “For nothing shall be impossible with God.”

I am reminded daily that all that’s needed in this life is a little faith, and a little grace.  In this case, Elena Grace.

77 thoughts on “Amazing Grace, how sweet the SOUNDS

  1. hartlove says:

    She is so pretty!

    Like

    1. Kana Tyler says:

      And NEVER quiet… But we remind ourselves what a blessing that is! :)

      The hibiscus in your profile picture? She calls those “biscuit flowers”… ;)

      Like

      1. hartlove says:

        So.. she’s clever AND funny! Haha This post is really touching. It was such a nice read :)

        Like

  2. Tmso says:

    Absolutely touching. You made me cry – Without sound.

    Like

  3. Widdershins says:

    I guess grace was just meant to hear what was going on around her and no amount of expert opinion was going to change that! … good for her!

    What was the response to your poem?

    Like

    1. Kana Tyler says:

      response to the poem… the professor on my committee who was a new mom cried, the rest of them got a little huffy at my reference to the “MLA-nazi” in the graduate office. ;)

      Like

  4. magsx2 says:

    Hi,
    A really beautiful and touching post.
    She looks so tiny and precious in the hospital with all the tubes, but she has grown to be a very pretty girl, and blessed as well.

    Like

  5. Sunshine says:

    The miracle of Elena Grace….beautifully written!

    Like

  6. Anela Tyler says:

    I had no idea Granny! God is good! And yes wih God ALL things are possible! I pray for the day I can actually meet my lil sister elena grace! (And of course my lill brother Christian!) Love you! <3

    Like

  7. Anonymous says:

    Beautiful. Just beautiful x

    Like

  8. How beautiful and touching… Thanks for sharing this!

    Like

  9. Caroline says:

    How truly special and wonderful

    Like

  10. clynchie says:

    Prayer is powerful and He is the master of the impossible. Beautiful story. Thank you for sharing.

    Like

  11. Kristina says:

    Your post really moved me…

    Like

  12. Chatter Master says:

    So beautiful, your child, and your story. My heart was aching so much at your discovery and then rejoicing in your miracle. Wow. Thank you for sharing.

    Like

  13. Beautiful and inspiring. I know at least one of the things that you’ll be thankful for this Thanksgiving!

    Like

  14. judithatwood says:

    Dear Kana — What a story of miracles. First that she lived through the months in NICU, and then, of course, when she heard you speak. I celebrate your miracle, and Elena Grace’s miracle. We need to see a miracle every once in a while. BTW, I like the Poet, too. One reason she may be scary is that, unlike the Essayist/blogger, she is directly a channel of feelings, rather than “Facts.” Blessings on you and your family this Thanksgiving. I wish I could be there to hear Elena laugh when you start decorating for Christmas! Namaste, Kana.

    Like

    1. Kana Tyler says:

      I have YOU to thank for the nudge in letting the Poet come out to play–thank you for that. :)

      Like

  15. Special children are for special parents. She is an angel!

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  16. So beautifully written! You brought a tear, okay a few, to my eye. Your daughter is [precious.

    Thanks!

    Like

  17. Anonymous says:

    As babies unfold into children, I am in wonder. As I read about your miracle, Elena Grace, I am awestruck. Thank you for your openness and gift of expression. I look forward to your blog each morning.

    Like

  18. restlessjo says:

    As usual Kana, beautifully told. I always read your posts but am not often moved to comment- often people have already said what I am thinking. But I just wanted to say how very happy I am for you and your lovely child. It’s hard to imagine how you got through this- you certainly have inner strength girl. This could make unbelievers believe. Bless you and your family

    Like

  19. Wiping tears . . . thank you . . . and many blessings to you and yours.

    Like

  20. Texasjune says:

    Through these tears I’m remembering when someone tells me they don’t believe in God – I just say to myself, you will someday my friend. His grace is too powerful to go unnoticed. I’m so thankful you write!

    Like

  21. Anonymous says:

    Wonderful, Kana. I believe in miracles, especially after reading this. I know that you and your family would have survived with grace (pun intended) no matter what. But a glorious outcome!

    Like

  22. Tina says:

    Speechless am I, with tears.

    Like

  23. Gillian Colbert says:

    I wept reading this … I’ve always believed in miracles, my own daughter is one … I was told I’d never have children. Lovely post, and lovely poem.

    Like

  24. adalamar says:

    What an absolutey beautiful story and post. Thank you so much for sharing and reminding me that nothing is impossible with God. Many blessings to you and may you have a wonderful Thanksgiving.

    Like

  25. John says:

    Now I’m wiping away a tear.

    Like

  26. Pat says:

    What a beautifully written, moving story, Kana! Elena Grace must have been born with a spirit determined to beat the odds.

    Like

    1. Kana Tyler says:

      OH YES–she’s a fiesty little demon (angelic appearance notwithstanding)! I’ve often thought that it must be the *spirited* ones who survive such a start–and as if to prove that theory, she’s been barreling through life and top speed (and top volume!) ever since. :)

      Like

  27. Oh, Kana, unleashed that poet. This made me cry.

    Like

  28. CJ says:

    You are a powerful story-teller and, oh my, you do know how to make a girl cry into her morning coffee. xxx

    Like

  29. Beth Parker says:

    What a great story, Kana! What a beautiful little miracle you have there. I have an inner poet, who hasn’t been unleashed in many years. She wrote about independence mostly, and breakups. he he I still have some of the old writings somewhere. Have a wonderful Thanksgiving!

    Like

  30. ccyager says:

    Moving story, beautifully written. I especially liked your masters defense as a telling emotional detail. So glad Elena Grace hears your voice…and will be able to “hear” your voice also on paper.

    Like

  31. Rose says:

    What that must have been like, I can’t imagine. Never is almost always just too strong a word. I especially love your poem of protest; a contest of wills, it seemed to me. I’m glad you let her out, at least this once!

    Like

    1. Kana Tyler says:

      We actually make a point of NOT using the word “never” in our household…

      Like

  32. granbee says:

    Kana, I do not understand how I am able to type in this comment due to the tears of celebration still flowing after reading your prose but ESPECIALLY your poem, reminding me of the utterly awe-inspiring ASL sign for “grace”! I celebrate this answer to all your prayers. I have been RIGHT there in wanting to show my own palm to a supervising professor! Just so you know, after I survived a murder attempt, sustaining multiple injuries on my left-side, I was told I would never walk, type, or play the piano again. I have since competed in road races, played the piano for countless church services, and use my 130wpm keyboarding skills to assist me in earning a pretty decent living. Such joy in your Grace’s hearing–I will remain gut-punched for days over this! Thank you for your most generous sharing here.

    Like

  33. pharphelonus says:

    What a beautiful story and tribute to grace, and God’s magical powers.

    Blessings to you and your family. Happy Thanksgiving.

    Like

  34. I hope you’re still blogging in twenty years. I want to know what Elena Grace does with those ears.

    Like

    1. Kana Tyler says:

      So far, the answer is non-stop-chatter! ;) No one who meets her today can imagine her SILENT… Unlike her tone-deaf brother, she also has an ear for music, and makes up her own songs–another item in “blessings” category!

      Like

  35. Wiping the tears away. What a great story.

    Like

  36. Cowboy says:

    Wow is the first word that comes to mind when reading this. Just perfect and very well written!
    I can’t begin to imagine what you’ve both been through.

    Like

  37. This is such a beautiful story of God’s grace! The picture of her as a baby is so touching.

    Like

  38. rumpydog says:

    It’s taken me a long time to realize this- but the truth is that there are no absolutes in this world. I love your story.

    Like

  39. Eryn Wong says:

    Praise the Lord! I’m happy for you :)

    Like

  40. Doug says:

    Well this brought this hard ass bourbon drinker to a sudden wet eyed stop.

    A Wow post.

    Regards,
    Doug

    Like

  41. Ink Festoon says:

    This is such an inspirational, lovely post. Your poem shows your sorrow, as well as your determination. With such a beautiful daughter as your muse, I can see why your writing takes on such feeling… I think you’ve found your calling with writing :)

    Like

  42. statusviatoris says:

    Lovely poem, and absolutely beautiful daughter who looks like a bringer of light and laughter on a daily basis! Congratulations to you both.

    Like

    1. Kana Tyler says:

      Yes–and fittingly, “Elena” means “light.” HER tattoo on my arm is a lighthouse with her name beneath it. :)

      Like

  43. Tess Kann says:

    I’m tongue-tied and weepy. Too beautiful for words, yet you found them. And Elena Grace heard them. Bless you.

    Happy Thanksgiving to you all. Thanks you for a touching post.

    Like

  44. Diane says:

    Beautiful uplifting story – very best wishes to you and yours – Diane

    Like

  45. jakesprinter says:

    Brilliant post :)

    Like

  46. Karla says:

    Nothing is impossible with God. I’ll hold that close to my heart today. Thank you.

    Like

  47. This brought tears to my eyes. I found myself hoping as I kept reading that the story would end with Elena being able to hear. Your inspirational story is strangely relevant to something I’ve been struggling with lately, and reading it helped me keep my faith that anything is possible when you believe. Sometimes people need to believe miracles are possible. Thank you for sharing this.

    Like

  48. Michelle says:

    thanks for sharing this story. It was a wonderful read and I’m looking forward to reading more from you in the future :-)
    Hope you and your daughter will have a lot of fun sharing stories with each other <3

    Like

  49. Angie Z. says:

    Very sweet story and great writing and a beautiful diagnosis-defining daughter to boot. Hope you let the Poet out here again sometime.

    Like

  50. This is beautiful, Kana! Thank you for sharing.

    Like

  51. Miranda Gargasz says:

    I just got the chance to pop over and read your blog. What a touching and moving piece to be my first impression of you as a blogger! So glad to read!

    Like

  52. kez5 says:

    So beautiful Kara – thank you for sharing.

    Like

  53. kez5 says:

    Oops I meant ‘Kana’ – it’s so annoying when people get your name wrong, isn’t it?

    Like

  54. Ms Mary says:

    Thank you, Kana, for sharing this inspiring story. It has helped me in the renewal of my faith. I celebrate God’s love for you with you.

    Like

  55. dorhora says:

    May God continue to bless you and yours, Kana…what a miracle to experience and a testimony for all! Blue skies…..

    Like

  56. What a wonderful gift!

    We have so much more in common than I thought. My son was born at 28 weeks 1lb 11 ounces! We too did the 12 week NICU stay (how not to have a good time after childbirth eh?) A few years later he was diagnosed Autistic.

    After many hours, therapies, Doctors, Neurologists, Occupational Therapists, Naturopaths (and the associated gut-wrenching bills) we took him back to the same hospital he was diagnosed at. They looked at us like we were aliens. “This child doesn’t have Autism”, they said, “why are you here?” “Because YOU diagnosed him!” I replied. They chalked it up to misdiagnosis and went on their way.

    But I knew different, just like you do – miracles are alive and well in this day, and our children are living proof!

    Like

    1. Kana Tyler says:

      WOW. [One wordless writer here…]

      Like

  57. the urban misanthropist says:

    Thanks Kana, a) for making me blub over my breakfast, and b) for more evidence that there is no such thing as impossible.

    Like

  58. Very powerful reminder of what is most important and who is in charge. Thank you.

    Like

  59. I am openly weeping in the kitchen of my friends home as I read this.
    I am always amazed when I read the stories of people I don’t know (personally) and see correlations between my own experiences, or those of people I love.
    Of course, some times the outcomes are different, or life takes a different twist, but at one point the pathway is similar. It is a bit like driving in a place you know you have never been, but the feel is so familiar.
    There are beautiful aspects of this sweet little life of Elena Grace that I must share this with some people close to me. Yet, that said, this is her life, and the outcome is the grace of God for a child who has a purpose in being here.
    Thanks for sharing!

    Like

  60. sandrabranum says:

    If we believed everything The Experts told us, we’d never get anything done. I’m so happy for you and your Elena Grace. I look forward to reading more.

    Like

  61. I was moved to tears; never underestimate the power of prayer.
    God Bless and Merry Christmas.
    Jessica

    Like

  62. ~Robin~ says:

    I am again awed by the power of your writing.
    I measure all media on its ability to extract an emotional response from me; did it make me laugh? Was I angry? Was I disturbed? Was I scared? Was I touched in some profound way? Did it somehow light upon my extreme need to see hope in all things? Did it make me cry? Song, movie, poetry, story… if it fails to do at least one of these things, it is of little or not interest to me.
    ‘Amazing Grace, how sweet the SOUNDS’ gave me not just one or two of these reactions… but all of them. I was angry at a world wherein a child suffers; and a mother at her side as well. I was disturbed at how easy it was for me to see the faces of my own children in situations similar, though they have never been (thankfully) so afflicted. I was scared for you… and scared for the learning curves and obstacles you and Grace would have to overcome. I was touched; deeply, greatly; profoundly; by your courage. There was that glorious moment when I was rewarded for hoping things were not so dark; and that confirmation I so crave, that tells us all that hope never dies. Finally, I cried. Not just a few tears pooling up in my eyes like when I read Neonate… but a full-fledged stream of silent tears trickled down my face.
    So yes, I am awed by your talent as a writer, but I am now also inspired by your strength as a person and moved by your honesty.
    Thank you so much for sharing.

    Like

  63. Freedomborn says:

    Thank you Kana, for sharing this wonderful Miracle with me, Amazing, Grace very much indeed, in my life I too have experienced Miracles even though it has been a very hard road, tragic really, but Amazing Grace that never ends, I now have a deep inner Joy that nothing can take away, Amazing Grace how sweet the sound, it’s melody plays in my heart and will forever.

    Many Blessings and much Love from both of us – Anne

    Like

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