Thursday, May 21, 2009


(little m at 3 weeks old)
i've been thinking lately how much has changed in the year since we discovered little m's deafness. so this week i'm writing a few posts about my thoughts. here is the first:

i don't remember much from the first days after our baby was diagnosed as being deaf. 

but i still remember sitting across from sarah, the audiologist at children's hospital, seconds after she had told us that our baby had profound hearing loss. she had actually said "after taking (insert multiple test names here), m has severe to profound sensorineural hearing loss." even in the haze of her words i knew she was being gentle in saying it was severe to profound; i was looking right at the charts she was showing me that said severe hearing loss can hear in the range of 71-90 decibels, and i was listening to the results she was telling us, and i knew there was nothing severe about it. in one single frequency, little m could hear at 90 decibels. 

all i remember saying is, "this level of hearing loss - is that what we would commonly describe as being deaf?" and sarah nodded. and i suppressed tears with everything that was in me, and everything else became static. she said something about if we wanted to talk to any families that were a little further down the road than we were, and how if we ever wanted to talk to anyone she could get me in contact with others who knew what it felt like. i didn't take any numbers. i didn't want to talk to anyone. i didn't want this to become even more real than it was already. somehow we left her office and walked to the car and drove in the right direction.

we stopped at peet's on the way home for iced coffee, just to do something normal. it was really hot out; i remember that little m was tired and hot and hungry and screaming, which she always did when she was so small. while i was inside getting our coffee a stranger decided to inform matt that our baby was screaming because she was in the sun, and that he should cross the street and hold her under an awning so she would stop crying. he didn't say you have no idea, and you have no right. she always cries - she just does, she is hungry & tired, she just took 3 hours of tests, she can't hear me comforting her, she hates being in the car seat... and we just found out she is deaf. he just smiled weakly and kept holding her, bouncing her to calm her.

it feels surreal now, how few of the details i remember from the first couple of days. i just remember how i felt - that the whole world was crushing in on me but i wanted to be alone. i didn't want to talk to anyone, not even matt. i didn't even want to be with little m, but matt would force me to go hold her, because he knew her light would pierce into my grief and relieve it a little. when i was nursing her or changing her or rocking her i knew i had to pull up out of and push through my sadness, even if only briefly, to be her mom.

if i am completely honest, i had never been someone to say in pregnancy, "we just hope the baby is healthy." maybe i uttered those words, but i don't think i actually meant them in the deepest parts of me: i just assumed our baby would be okay, and that by saying we hoped he or she would be healthy would kind of ensure he or she was healthy. or even by throwing out different possibilities of things that could go wrong, that we would avert those issues. it doesn't really work that way. other things may have been in the back of my head in a theoretical way, but deafness? deaf was not on my radar.

when little m was hours old and didn't pass the hearing screening at the hospital, matt was asking the screening volunteer questions about how to proceed with the next battery of tests, and twice he said, "the results don't matter. if she can't hear, it doesn't matter." as he said those words outloud, i thought, it's so silly to even say that, she'll pass the hearing screening. she can hear. she either still has fluid in her ears or it's because she is screaming so much. but it's nice that he is saying that. i love my husband. 

and then a couple of weeks later, a couple of tests later - each one diminishing my belief that she could hear until the final one that proved she was in silence - we stood together in front of peet's coffee, next to our car, holding our baby who wouldn't stop screaming at the top of her lungs.

i just wanted to evaporate or rewind time to those moments before everything changed. but there we were. standing on the street, holding our deaf baby.


  1. thank you for sharing.
    the intensity of those days and the memories always break through, even if you feel the details aren't as clear. how far you three have adventured since those first days in the depths of despair. you. are. remarkable. together. all our love.

  2. What a lovely post. You capture your emotions so movingly. I really enjoy your blog and your writing!

  3. great post, thanks for sharing. the memories of those days i like to keep at a safe distance, for they are still so raw. but life it good now, and i'm thankful for it.

  4. i remember those days sooz. i remember holding m one night so you could sleep. before we knew she was deaf. trying to soothe her with shushes and singing. and then i remember coming over one morning after you found out. i remember your face was pale and your eyes were tired and sad. you had a blank look on your face from being all cried out...but we all cried together. and it felt good to hug you...cause there wasn't much else we could do. but hold you and love you and be by your side. [i'm tearing up at the memories]. you are so amazing and strong. you didn't get to had to be that way. but i'm still so amazed by you my friend.

    and i'm amazed that i just wrote a blog entry in your comment section.

  5. Sweet friend, this is so beautifully written. The tears are streaming down my face - you have captured such tender, raw and scary moments with such heart. I know our journeys are different, but I am comforted to know there is so much I can relate to in your story - keep telling it - it's a beautiful one.

  6. you capture our story so well in words.

    most days it just seems so normal to have a deaf child, because that is all that i know. to look back and remember those first days is difficult in that it reminds me of feeling so different and alone and wondering who could understand. good though now to reflect on how reflection, learning, prayer, community have all molded us and made us through this last year, thanks.

  7. This is beautiful, soo touching. As I read this I remembered where I was sitting as they told us my beautiul baby boy is profoundly deaf. I wish we were closer and could reach out to eachother. Your writing is beautiful and my face is wet with tears. Little M and Troy are amazingly special not because they are deaf, but in spite of their deafness. I always keep up on your blog to see how little M is doing. We go in a few weeks (June 2) to see if Troy is a canadite for cochlear implant.

  8. Your story touched me so much I put a little blurb of it on my blog. Thought you might be interested.

  9. i hope you know how gifted and brave you are in sharing and in the way that you share yo with the whole world on this blog. love you friend.

  10. I remembered my time with prisha.I think the feelings, emotions and the same for all mothers who have realised that the child they sang to, spoke to was never hearing all the love we showered on them.memories came back and i hugged my lil girl who is now chattering away on the top of her voice.


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