Friday, March 26, 2010

the deaf question

last time, when m was born and diagnosed as deaf when she was a couple weeks old, we weren't prepared. deafness wasn't even on our radar, and i remember thinking, "i can't do this. i don't even know how to be a mom, much less a mom to a baby who can't hear me."

m's diagnosis plunged us into a place of deep grief and numbness. over time, and through the joys of parenting a child, the grief has ebbed. of course, there are still many moments when the sting of that loss- for our daughter and for us- feels as fresh as it was that first day we heard the words "profound hearing loss."

throughout this 2nd pregnancy, matt and i have thought about this new baby growing inside of me. inevitably, we think about who this baby will be. is it a boy or girl? feisty or mellow?

i have had friends ask me whether we think about this baby will be deaf or not. and the short answer is that yes, we do. can he or she hear? will we begin again with the onslaught of appointments, specialists, meetings with the school district, audiologists? will i nurse my baby in countless medical offices? will i be waging war anew with the insurance company for surgery? would we still grieve our second child's deafness? then again, what is it like to have a baby who can hear?

i don't know the answers. i do know that regardless of the results, that matt and i will both cry at our baby's hearing screening in the hospital.

on ci circle, a yahoo group for parents of deaf children with cochlear implants, the following interaction happened the other day. i felt like it spoke to the complexity of issues and emotions that matt and i feel as we think of our second child, and whether he or she will be deaf or not.

"It has been a really hard day...Our second son who is now 7 days old was just diagnosed with hearing loss...We've said all along that we'd be okay if our 2nd was deaf since we know what what to do, but it still really, really hard. I need to live by my words and be okay with this, but combined with the emotion of having a 7 day old, I'm having a hard time coping..."


a couple of responses from parents:
"I have been there, and it was so tough. Our second child is now 9 and was diagnosed at birth, when our oldest was almost 4. My husband and I grieved so much, for our tiny newborn son, for our daughter and remembering when she was diagnosed and what she (and we) had already been through, and for our little family, which would never have kids who could hear without help. Yes, you know what to do and where to go, but every child is different. I wasn't that
thrilled about doubling my time in hearing-related appointments, keeping track of twice the equipment, bugging providers twice as much, etc."

"I have three children, the oldest and youngest born deaf. Getting the diagnosis a second time is very hard, just in a different way than the first time around. The first time for us was a total shock. It came out of nowhere, and we had no clue what to do or where to turn. The second time, we knew the ropes, but that meant that we also knew what having a child who is deaf entails. We knew about the emotional toll, the hours spent working on language, the CI surgery, the extra expenses, etc. So, knowing what we had to do and what was involved wasn’t necessarily a comfort. It was more of thinking that I had to find the strength to start all over again.

The one plus to having two is that there is a definite bond between them. Rachel was almost 8 when Jessica was born. The day we brought Jessica home from the hospital, I went to Rachel’s room and sat down and told her that Jessica was deaf. She quietly looked at me and said, 'I was
hoping my little sister would be deaf like me.'"

we don't have control over so many things in life, including what this baby's gender, personality, temperament, or hearing capacity will be. i know we'll love him or her. i know we'll figure it out along the way. and i also know it feels like a very emotionally complex thing to consider as we prepare to be parents again.

6 comments:

  1. I found that whole exchange pretty moving, too. We've talked about having another. We've (pretty much) ruled it out. My main reason is that I'm too old. But when people ask us whether we're going to have another (and *everyone* does), I usually cite the deafness thing, because it's persuasive. If I say that I'm too old, or that I don't want my career to take another hit, then people immediately challenge me on it. But when I say that any child we have has a 25% chance of being deaf, the conversation stops there. Ironically, that's the least compelling reason for me. Like you say, it would be hard to have to start down that journey again, but it wouldn't deter me from having another child.

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  2. it is amazing how often it can stop conversation (whether you want it to or not).

    i know, sometimes i have moments where part of me hopes child #2 is deaf so that she/he and monrovia can share that since matt and i are hearing. but if someone else (who did not have a deaf child) said that to me, i would not be ok with them saying that, and it would be very hurtful because it would feel like they don't understand how much extra work it is, and how often i grieve different moments. that said, it (obviously since we are having another!) doesn't deter us either.

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  3. thank you so much for sharing this with us.

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  4. So many things you've written here resonate with me in different ways and for different reasons...
    You're right: it's all so complex, and yet the letting go and knowing how much love you have for Sweet Baby and that you will figure it out along the way reminds me that yes, it's complex (so very complex), but also very simple. Lots of love.

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  5. Susannah, This is a beautiful post. Thanks for sharing your thoughts and fears. We love your baby already.

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  6. Before Monrovia, if you had asked, what would the doctors have said the chances were that she'd be deaf?

    Now, it sounds like with number 2, according to Julia, it is 25%. Is that almost always the case with any children following a first one with hearing loss? Is it hereditary (I've never heard you mention that your family or Matt's family has a history)?

    My cousin was born partially deaf but there was never any other talk of it in the family so I didn't ever think it was hereditary, just something that didn't fully develop before birth.

    Thanks for sharing. Life is amazing and it is difficult and it is rare to hear about someone's path being easy all the time. Not everyone can share as well as you do about those times when the path narrows and takes us along a cliff. Yes, it is treacherous but those are the times I look back at the danger and often find beauty, too.

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