Tuesday, May 31, 2011

just saying ...

... most of the time it's fine. In fact, more than most of the time you
don't think twice about it. second nature like.
Get up in the morning, put on his cochlear implants,
just as you put on his clothes.
Talk to him, listen to him,
COMMUNICATE THROUGH SPOKEN LANGUAGE.
Therapy at the kitchen table becomes an everyday thing.
You call your husband excited about the discovery of a new word or sound,
and you cherish the moment together.
CIs are now a part of everyday life; a new normal.

as time goes on, you get past all "the looks and stares".
you THANK GOD ev-er-y.day for the miracle of CIs and
all the differences they've made in your child's life and
all the opportunities they've brought (and will continue to bring);
you THANK GOD ev-er-y.day for the fact that he can HEAR
and that when you talk to him, he comprehends,
even if he doesn't LISTEN to a word you're saying,
you know he HEARS you.
and when you confirm your initial thoughts, (and the equipment is just fine),
you chuckle, because he's no different than your two hearing kids,
in the fact that he TOTALLY has learned listening is a choice.

and you know it's the actual hearing part where the miracle began.
and mostly, there's this constant giddiness because of it all.

BUT, there are still THOSE moments,
MOMENTS, that may last a minute, sometimes an hour,
sometimes more than a few hours,
sometimes a whole freakin' day ...

WHERE IT ALL SUCKS.
Where all you can do is WONDER and WORRY,
about what's to come.

He's only THREE
hearing, two years.

You've come such a long way, yet have such a long way to go.

and of course you worry. Not all the time. Not a lot of the time,
but there are some times, you worry much more than others.
and sometimes that worry is hard to shoo away.

and even as you hear him talk to his siblings, or know he responds
as you call his name from upstairs and he's downstairs,
down the hall in the back room with the tv on,
there are still moments of worry ...

...what's to come when he's 6 and is not in an oral deaf program
with kids who are "like him", because you've worked so hard for him
to be a part of a mainstream classroom and
even harder that he NOT be defined by his hearing loss,
YET, all the six year olds see him as different.
Not only because of the equipment on his head, but
because it's much harder for him to listen and take it all in.
and you just pray and pray the teacher
teaches the class about UNIQUENESS.
not just his first year teacher in mainstream school,
but every teacher and every year thereafter.

...what's to come when he's 8 and he really starts to see himself as different,
and tells you he hates being deaf or asks why he has to be deaf,
when no one else in his family is;
or is scared to speak his voice to tell someone, "I didn't hear you," or
"Can you please repeat what you said?" because he doesn't want to stand out,
in fear of drawing more attention to himself when
honestly it wasn't his choice of not wanting to listen,
but the mere fact that he just didn't hear.

...what's to come when he's 10, and there are sleepovers.
and yes, he's been accepted, because you do everything.in.your.power
to make him a part of the community and to be included,
you advocate, you teach, you empower.
BUT, he's still DEAF and at the sleepover, he's not sure if he should
take off his CIs so not to miss out on the craziness that may go on after he
falls asleep and can't hear a thing.

...what's to come when he's a young teenager and all the kids are
going through puberty. the time when it's a known fact
that kids tease other kids,
and making fun of someone's differences is one way
of ignoring/getting past their own insecurities,
no matter how wrong it is.
you pray he has a good sense of humor, some good come backs,
and that it's not him who is the insecure one.

...what's to come when he's in his late teens and heading off to college,
to a WHOLE NEW community new to his world.
Having to take classes in HUGE auditoriums,
with 100's of classmates, and be able to understand
and keep up with everything the professor is saying.
because honestly, does the professor really care if he's getting it or not?
OR when he's in his college dorms and everyone is running out
because the fire alarm is going off and he's fast asleep, without his CIs on.
will someone stop to take the time to wake him?

You continuously teach him to be his own biggest advocate,
but even in doing so, you constantly pray and hope you are also teaching him
to always be proud of who he is and to use his voice.
as it is his voice that you've worked so hard at achieving.
it is his voice that you are thankful for everyday,
right along with every.single.ounce of hard work teaching him
to not just "hear", but to LISTEN.

just saying.

it's not easy.

I'm his mom. and no matter what,
I will always worry about the "small things",
that truly,
aren't.that.small.

16 comments:

Herding Grasshoppers said...

Oh Tammy, you say just what we're all thinking. The things we can't help worrying, in the midst of rejoicing for all the good.

And it's all just amazing.

Julie

Susannah said...

(i had to link to this post on my blog!) and yes to what julie wrote.

leah said...

This is perfect. Absolutely perfect. The secret worries that plague us - celebrating the everyday miracle but worrying about the struggles ahead.

Judging from Aiden's character, I'm pretty sure he'll have a good sense of humor - and that will carry him through a lot! :-)

Julia said...

Wow. You said it all perfectly. That's *it* in a nutshell. Thanks.

Landry said...

Tammy-Your words are outstanding and captured the feelings that so many of us have! Thank you for sharing your heart.

Anonymous said...

The story of my life as a hearing aids user (prelingually profound oral only deaf - hearing aid around 3 years old)

didn't get my CI until in my middle 20's

but it is the same old story for every deaf out there.

Ben's Mom said...

Beautiful post, Tammy - thanks for sharing it. I hear you. I guess we will have to get through all those things together. Miss you guys.

The Brights said...

Your words are ALWAYS so perfect. Thank you.

Jennifer said...

Wow. That was a great post. I loved it. We all worry about the same things. But know with a Mom like you he will have less to worry about. Cormac has been mainstreamed since he turned 3 and the other kids really don't notice him any different. He is truly just one of the kids.

Lucas'Mommy said...

Beautiful, Tammy! Thanks for that!

Christian and Lily's Mommy said...

Loved this post...seriously have thought all of this before. No amount of Lexepro could help with the anxiety with all of my worries and racing thoughts about what if his batteries run low during the SATs or during his 1st Communion, or if his coil falls off when he is making out with a chick...

My girlfriend gave me the best advice ever (she also has a little boy with a CI...he's a year older than Christian). We have to at some point find peace in that these kiddos will have hard times. They WILL miss stuff. That they are indeed deaf and no amount of therapy or technology can change that. We just have to have faith and know that these kids are going to be great.

Keep on keeping on...that's all we can do. Because you know when we are 95 years old in the nursing home and these dudes are grandpas themselves, we're STILL going to be worrying if they have clean microphone covers and are on the right program.

xoxoxo

Naomi said...

I agree completely. People say to me "oh but Matilda's doing so well". That doesn't stop me worrying about what she'll do when she first goes to school camp, or has a sleepover, or bizarre things like when she's in labour with her baby and wants a waterbirth, she won't be able to hear that first cry (I know, not rational). I worry about all my kids, but Matilda a little more. Now I just need to breathe and realise that God is much more in control than I am - thank goodness.

nicole said...

thank you.
as the mom of a almost 8 year old with a ci the worry changes with each new hurdle and some days there is less worry because you get a glimpse of their independent "grown up" selves. she is mainstreamed and has very few issues in her current class but field trips on the bus are a hearing nightmare. she now remembers to change her own batteries before going out later in the day.
It is hard to wrap it all up in a tidy package but your post here sums it up for all of us. not so unlike worrying for our hearing children!!!

Emily said...

This is absolutely beautiful. Of course, tears are streaming down my face as I type this. I have all the same thoughts and worries. It doesn't matter how well Sophie is doing or how positive I am, I still have a small dark cloud hanging over me.

Thank you so much for sharing. It helps me to know I am not alone in my thoughts. ;)

Melinda said...

beautifully written! when i read this i felt like u where reading my mind! couldnt help but have tears rolling down my face. so glad that there are so many of you out there that share the same thoughts & worries too!

Kathy said...

Amazing words in a wonderfully profound stream of thought. I would very much like to see this get to a larger group. It might sound sort of hoky but please consider sending this to Reader's Digest. Yes, I know, not everyone's idea of fine literature but it has a heck of a large readership and this could get through to a whole bunch of people, make them think a bit. Just glad it got through to me today. Thanks.