Monday, September 12, 2011

It's Hard

Spending time with Deaf kid. All day. Every day.

Repeating/signing every word that comes out of Bea's mouth so that he can have access to his little sister's world.

Refereeing children every time we get into car:

     Owen: "Music please."

     Bea: "Don't want music."

     Me: "Bea, it would be nice if you let Owen have music in the car because he can't hear our voices."

     Bea: "But the music is too LOUD!"

     Owen: "What she say?"

Watching Owen time and time again, approach a random Hearing kid on the playground, try to make a connection, and fail.

Wondering where on earth Bea would come up with;

     "Owen is stupid because he's Deaf."

Swallowing painful shards of guilt each time I have to chase Owen down as he scampers toward the water; to take his hearing aids out.

Losing my patience at the end of a long day at the end of a long summer when Owen has asked me for the gazillionth time in an hour to tell him what Bea has said, and then telling him too loudly;

     "You don't have to YELL at me!!"

Catching Owen faking it;

     "Did you hear him? You understand?"


     "Ok. What did he say?"

     "I don't know."

Witnessing my little fish's life out of his Deaf pond.

Knowing he fully belongs there,

And I never fully will.


  1. This stuff is hard and I wish I had some magic words to make it better, but I don't.

    Glad to see you back.

  2. Sometimes, I wonder: who is it harder for, him or you?
    You still shoulder it well.

  3. And that is why I love your blog. You are raw and honest.

  4. I bet it was even hard to write that. My heart goes out to you...

  5. Your words flow so well- sharing with us must be a good release.

  6. Yeah, but look back and see how far you've all come. That's amazing. Some days it's just hard to see it all in perspective.

    (ps- I live the radio fight, too, and both my kids can hear...)

  7. Just echoing everyone else, but you share such depth of emotion and feeling with your posts. It's like you are gifting us with part of your heart.

    Thank you.

  8. You hit the nail on the head, girl. I don't belong here...but I am here.

    What's next? Will I survive? How?

    With plenty of laughter, libations and herbs :)

    Rock on Tulp, you hung out on tour, you are a survivor of many things mental!

  9. There are days. And then there days. And then there is the day that you finally realize "this is my life." and you realize it sucks. But the thing is--I bet you rock your kids world. And for that you are the best mom those kids can have. Hugs.

  10. I hear that bus a'comin,' comin' down the hill... I can't do 24-7 and be anywhere near my tippy top with my girl. This is one of the many reasons I'm glad we're not migrant workers. Thank goodness for school.

  11. So glad you're back. And yeah, this shit is hard. Sometimes Ethan gets that his autistic brother is just different, and sometimes he calls him "stupid" and "my idiot brother." Ice pick to the heart every time.

    Hope it gets easier now that they're back in school.

  12. So glad you are here.

    You make me feel human again.
    Yes you do.

  13. My heart breaks for you. I know it must be so very hard.

    So glad you didn't quit the blog. I love your writing.

    Keeping you in my prayers!!

  14. Forgive me if I've shared this story with you previously (I'm pretty sure I haven't, but I'm horrible about telling the same story over & over & over again).

    In high school, I briefly dated a girl named Cindy - and, even when we weren't dating, we were friendly. And, because I was the epitome of cool, I was in the marching band . . . as was she.

    Well, Cindy's dad helped out with the pit (where I played because, let's face it, I have rhythm in my fingers - nowhere else - so marching wasn't an option) and he was always a real great help.

    When it was time to head to band camp, as I wasn't a marcher, I didn't head up with most of the band. I ended up driving with Cindy's mother, who I had barely ever met.

    The woman never, ever stopped talking. Seriously. And her voice drove me crazy. I knew Cindy kept herself sane by finding after school activities & locking herself in her room - but this woman was married to this super nice, super-well-acclimated, and super-happy guy.

    The next marching band performance, I figured it out. He was stone deaf. Talking to him, much later in my high school career, I found out that he lost his hearing due to an accident in his early childhood, and hearing aids didn't do anything for him. He got by with reading lips, which he did EXCEEDINGLY well, and he apparently spent all of high school & college "teaching" himself how to speak. What I thought was just a "strange yiddish accent," was what I got.

    I totally see Owen marrying a well-intentioned woman who never stops speaking, helping out with the marching band.

  15. ack.
    glad you're no quitter.
    like the new car!

  16. Well. I don't know what I can say after reading John's comment. Because that was quite a story. Truly. I loved it.

    It's hard to feel separated, yet so utterly connected to your child.

    And you express it with such depth here.

  17. I've never thought of this side of it.
    The way it affects the entire family.
    But he's still surrounded with so much love.

  18. That sounds pretty hardcore. It is difficult on the whole family. But from everything I've read of yours, you're the most amazing Mom of all time! Don't beat yourself up too much! Your family is beautiful and your kids sound really happy!

  19. Owen is adorable. Bea is adorable. You have the patience of a saint. And you manage it all well. Sometimes with wine. Wine is good. :)


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