Friday, January 20, 2012

in which a parent's heart breaks a little

we have lots of talks with m about being deaf.
obviously she is in a category which is sort of in the middle of norms- 
she is deaf but with her implants she hears.
but sometimes 
she thinks that when she grows up she will have typical hearing and not have to wear implants.
sometimes she forgets that other people can still hear in the bathtub or in bed, unlike her.
sometimes she asks when ruby will have her surgery for implants.
so we bring it up in conversation often:
"remember how when you were born..."

plus we want her to have a solid identity knowing that her deafness is part of who she is,
so that as she is older and mainstreamed that if it comes up in conversation then she'll be ok.

sometimes there are just things that 
make my heart go crunch.
and sometimes that i can tell make her heart go crunch too.

like over christmas
we went to this great park 
that happened to have a super high slide.

we are pretty cautious with m's implants on plastic slides, because (rarely) static can build up and knock out the implant's program. once in a while (although it doesn't happen much now) the static essentially knocks out the internal component, and you have to have a new surgery. so, on really big slides, m takes off her implants and goes without. she is usually fine and could care less, since it is her normal. but what happens a lot is that strangers are talking to her while she is up there and she looks at them, trying to understand, or they call to her from behind and she doesn't hear them. 

there was another family playing on this slide at the same time (you can see them in the picture hanging out.) their kids were younger than m, and were taking a very long time, so they kept shouting to m to pass them, to go ahead of their kids. m of course couldn't hear a word they were saying; she was standing behind them, waiting her turn. they kept calling and calling from the ground and one of the dads who was standing behind her was calling to her too. i was trying to get her attention and sign to her, but she wasn't looking down to see me. 

finally i just said in a friendly voice, "it's ok. she can't hear you. she's deaf." they stared at me and said, "i'm so sorry" and as soon as their kids slid down headed to another part of the park. i suppose they could be saying "i'm sorry we were yelling up to your kid when we didn't know she was deaf" but it felt a lot more like "i'm so sorry she's deaf." to which i don't know how to respond.

m slid down, happy as can be and ran back up to go down again, and i smiled and waved at her even though the interaction had made me emotional and sad. sad that someone would say "i'm sorry your child is deaf", even though i don't know what i would say either if it was me. 

and then today,
a rainy day,
m heads to her mainstream preschool,
which she loves.
matt took her, all suited up in her rain jacket and rainboots.
she can't go in the rain with her implants on.
but her little girlfriends that she always plays with wanted to go play outside in the rain.
matt and the director of the school were trying to figure out options for her- ways she could stay dry.

meanwhile m was getting really quiet and looking down at the ground. matt said it was one of those moments when she realizes that she is different - that she isn't just like her other friends who don't worry about expensive devices to help them hear. he could tell she was sad. he was sad too, fighting back tears in front of her.

three years old and so many expectations to advocate for herself, to be responsible for her equipment, to keep up with everyone else.

so one of those moments
trying to figure it all out:
we tell m that she is different, that she is deaf, that she will always be deaf! and that she is wonderful.

and then she experiences these moments in which she is different and it doesn't feel so wonderful.

sure - all kids, all grown-ups have these times of feeling left out or different from everyone else.
but that doesn't make it any easier on this mama's heart on this rainy morning.

9 comments:

  1. tears - for many different reasons, because this hits home on many different levels.

    i'm thinking about your wise, kind and tender-hearted daughter and you and matt - such inspiring, loving and intentional parents - on this rainy morning, with love.

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  2. Oh, my. I've had so many of those moments, too. Tears. And hugs.

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  3. of course, m came home happy as can be and having had a great day at school. she was having a daddy sister dance party in our car in the driveway when i came out. but that heart bruise was still there for me! what is that quote about how being a parent is like having your heart outside your body?!

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  4. in a comment reply you used the expression" heart bruise"...perfectly said. we need to swap stories my friend...Dels is on a "swim team" and the coaches talk to her from behind EVERY SINGLE TIME even though I remind them weekly...plus the kids chatter away to her in the locker room & pool. Perhaps my heart bruises more than hers.

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  5. tears flowing over here too!

    you would think since it was a rainy day that the Teacher's at school would just have all the kids play inside.

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  6. now i need a kleenex. I am relating to this in so many ways, including the "oh I'm sorry and let's get as far away of this uncomfortable situation as possible" scene. I don't look forward to the day when aiden realizes what the people are doing and i can only hope he always remains more resilient than his mommy.

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  7. Wow, this post really hits home. You have perfectly and beautifully described my biggest fear and worry. I think I lost it when you described M getting quiet and looking down as they were trying to figure out how to allow her to play in the rain. Sophie isn't old enough yet, but I know these moments are on the horizon. Thanks for sharing your thoughts - it is a great reminder that we are not alone in this journey and I feel better prepared for what is ahead. :)

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  8. Oh I feel for you too. We do let Matilda play in the rain - just with a hat generally, so the processors barely get wet.

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