VO-BB - 20 YEARS OLD!

GWIII · Posted: Thu Oct 20, 2011 8:49 am Post subject: Unreasonable pride in my son

Heya, VO-BBers!

I want to take a moment to share something that I have posted in other places, but I can't keep to myself.

Late this summer, my stepson Sean, 9 years old, was diagnosed with narcolepsy. For those of you who have only seen narcolepsy in action on television and in films, this is really a much more serious condition than are ever really led to believe. Cataplexy (sudden loss of muscle tone), sleep paralysis (waking and being unable to move for a period of time), and waking hyper vivid hallucinations are all a part of it besides the excessive daytime sleepiness we are familiar with. An active, athletic 9 year old boy is suddenly turned to a half awake, half asleep child who struggles to descend stairs, desperately trying to keep his head up during class, and teeters on despair when the exhaustion catches up with him.

My 16 year old son Jordan is working on a fantasy novel, and has been for quite a long time. As he works on it, he tries to incorporate his siblings into the narrative. Sean's struggle inspired him to write "Naes," and once I read it, I had to READ it. Please have a listen.

http://soundcloud.com/voevolution/naes-by-jordan-a-washington
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Chuck Davis · Posted: Thu Oct 20, 2011 9:22 am Post subject:

Wow. That's two awe inspiring performances. I can see why you're so proud George.
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GWIII · Posted: Thu Oct 20, 2011 10:00 am Post subject:

Thank you, Chuck. It's funny, I feel like I may be going overboard in how much I love what he did. But I tell you, the minute I got through reading the piece, I was in awe of his imagery. After I recorded it, I played it for his grandfather (my dad). He could barely speak for a minute after it was done. I have told Jordan I would narrate anything he writes, all he has to do is ask.
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roger · Posted: Thu Oct 20, 2011 10:43 am Post subject:

George,
I think it is a fantastic piece (well read, of course) and a wonderful family, but I don't see what's unreasonable about your feelings.
Heart warming.
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Eddie Eagle · M&M Joined: 23 Apr 2008 Posts: 2393

That was some talented writing! and the delivery wasn't bad either. Laugh

Pam · Posted: Thu Oct 20, 2011 3:25 pm Post subject:

Wonderful collaboration. Kudos to you both!
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Scott Pollak · Posted: Thu Oct 20, 2011 4:37 pm Post subject:

Just delightful! You SHOULD be proud. And Jordan should be equally proud of his old man.
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todd ellis · Posted: Thu Oct 20, 2011 5:11 pm Post subject:

very, very cool. on BOTH fronts!
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Jen Gosnell · Posted: Thu Oct 20, 2011 5:39 pm Post subject:

George, that is so totally cool.

Sounds fantastic, and way to support your kid! I for one am proud of YOU for that. Laugh

Jen
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asnively · Posted: Thu Oct 20, 2011 8:24 pm Post subject:

Your pride is not "unreasonable" at all!

Thank you for the additional info about narcolepsy. Poor Sean! I had no idea. How heartbreaking. Frown

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JBarrett · Posted: Fri Oct 21, 2011 4:53 am Post subject:

Beautiful words beautifully narrated. Sad that the situation that inspired it all may not always feel equally beautiful. Is there any light at the end of this tunnel, or is this a condition that Sean will just have to endure for the rest of his life?
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Moe Egan · Posted: Fri Oct 21, 2011 7:18 am Post subject:

Wow. Just Wow George. Jordan is a gifted writer- and well, dad's voice is pretty good too. Wink

Thanks for sharing his story (both his stories) with us. My daughter suffered with a movement and tick disorder for years (Google "p.a.n.d.a.s. disease") - she too found comfort in writing - she wrote a short novella called "Twitch"- but I never thought of voicing it- so glad YOU did! It's such an amazing thing how such hardships can actually make kids stronger in the long run. Thanks so much for sharing.
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imaginator · Posted: Fri Oct 21, 2011 8:09 am Post subject:

...i'll have to save the listening till i can devote my total attention to it.

but, george, in cases like this, there is no such thing as "unreasonable pride" in one's kid.
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GWIII · Posted: Fri Oct 21, 2011 8:55 am Post subject:

Thank you everyone for your kind words. I want to keep Jordan engaged in his writing, and I funnel back all the great comments to him. He of course responds in typical teenager style ("Cool."), but I think it helps Smile

Justin, there is hope that he may grow out of it, but at this moment, his doctors think this is a condition he will have to adjust to for the rest of his life. We are expecting our daughter Ella to be born any day now, but we have been operating on the newborn "get up every few hours" schedule since early August. Katherine and I are really hoping we can find a good balance of medication and such that can help Sean be sean....we're just going to have to keep going until that time.

Moe, I will definitely look that up. Some of the most heartbreaking things about it is Sean's awareness of what has happened to him. He knows he's not sleeping, he's not paying attention, he can't stay awake during the daytime, that without medication, he twitches, kicks, and talks in his sleep. Bottome line, he goes into REM sleep within 5-10 minutes of falling asleep (normally, it takes about 90), and stays there, never getting to the restful sleep stage. And he just wants to be normal, and we still can't deliver that.
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