Took a windjammer cruise today with Bella and Jack. Julia stayed home. She gets seasick. So does Jack, but he’s OK with it probably because he hasn’t fed the fish yet. He just turns green in the gills and looks awful. Julia feeds the fish. She stays home.
I don’t get seasick. Neither does Bella, of course, because she has Usher syndrome. Rocking and bobbing and up and down and side to side don’t bother her in the least.
We got the harbor right around 10:00 AM when most of the windjammers are boarding. We were fortunate in our timing and found ourselves as the only passengers on a two hour tour of the harbor on the Lazy Jack II with Captain Sean. Two hours alone is more than enough time for Jack to feel right at home, especially on a vessel that shared his name and one of the more apt descriptions of him.
As we cruised the harbor, Jack lounged on a padded bench right near the helm. Since we were the only passengers he could stretch out. He kicked off his shoes and chatted up the Captain. They had a lot in common. Captain Sean was a Loony Tunes connoisseur and they discussed their favorite episodes complete with Yosemite Sam quotes.
After about an hour, that ship was as comfortable as Grammy’s lap to Jack and he began to, um, loosen up. The First Mate was a martial arts black belt about to ship out to Marine boot camp named Ethan. Jack decided to call him Slick. Luckily for Jack Ethan had a sense of humor.
Halfway through the trip, we made a sharp turn to head for home. It was a sailboat and the day was mild, so it was quiet enough for Bella to join in the conversations. As we turned the Captain made a comment about rough seas. Jack pointed out that he got seasick. Very seasick. He told a story about a particularly unpleasant Whale Watch where he looked as green as a leprechaun. But, he noted, Bella never got seasick. In fact, Jack said, she can spin around forever and not even get dizzy.
Now the Captain and Ethan were intrigued. They asked why.
“Bella has Usher syndrome,” Jack said matter-of-factly, “That’s why she’s deaf.”
Bella looked a little sheepish, but she deftly took a couple of follow-up questions from the crew, explaining her implants and her balance issues. There was an uncomfortable moment or two.
Then Jack farted. Loudly. Sailors like flatulence apparently, because Captain Sean and Ethan broke up laughing. Then Jack brought out the elephant jokes.
“What’s gray underneath and black and white all over?"
"What?" asked Captain Sean.
"An elephant in a zebra suit.”
Ethan groaned.
“What’s gray and goes ‘flip-tzzz-flip-tzzz?"
"What?" asked a less enthusiastic Captain Sean.
"An elephant making pancakes.”
Ethan stopped smiling.
“What’s the difference between and elephant and a plum?"
Silence as Captain Sean pretended to scan the horizon.
"Elephants are gray.”
The Captain sighed heavily. Ethan took out his knife.
“What does Tarzan say when he sees a herd of elephants?"
"What grade are you in, Jack?" asked the Captain.
"Wrong! He said 'Look, a herd of elephants.'”
The Captain looked a little green. Ethan sat down between Jack and Bella and sharpened his knife.
“Hey! Nice knife! What does Jane say when she sees a herd of elephants?"
No response from anyone.
"Look, a herd of plums. Jane is color blind.”
Ethan raised his knife and cut a strand of thin rope off of a spool.
"That's it. No more elephant jokes," I declared.
“Hey, what are you doing with that, Slick?” Jack asked Ethan.
Ethan smiled and put away the knife. He took out a tool used to mend sails and began working the line he had cut.
“I’m making a bracelet for Bella,” he said. He held up his wrist and pointed to a stylish bracelet, “just like this one.”
And he did. Back and forth he weaved. After a few minutes, he had Bella hold out her wrist. Then he spent a half an hour tightening it and tying it. It was mesmerizing. Well, not to Jack. He kept yammering away with Captain Sean about Spongebob and Pokemon until the Captain began to make up chores he had to attend. Ethan finished the bracelet just as arrived at the dock.
Bella had a beautiful bracelet to match that of the black belt marine sailor. Jack got his hair ruffled. I got to put $40 in the tip jar. Someone had to cover for the invisible passengers. It didn’t begin to cover the value of the gift from the tough kid with the soft spot for the little girl with Usher.
Thursday, September 3, 2009
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Mark,
ReplyDeleteI enjoyed reading your blog. My daughter was diagnosed with Usher last week. We are reeling! She has been profoundly hearing impaired since birth and has a cochlear implant. We just learned of the vision impairment and the Usher syndrome. She is eight years old and already has a good bit of pigmentation on her retinas. She has lost a bit of her peripheral vision and has trouble seeing at night. No one is giving clues as to how rapidly she will lose her sight, but I am praying it will be slowly or that God will lift this from her. How long have you known of your diagnosis? Would love to talk to someone who has personal experience with this.
Leigh Ann
Hi Leigh Ann. My daughter was also diagnosed at eight years of age. We know about the reeling. I lay on the floor in the dark every night after the kids went to bed eating Ho-Hos and Tostitos until my weight began to threaten the structural integrity of the house. I am always happy to talk, but I need your e-mail. You can reach me at m.dunning@lek.com. Also, I would strongly suggest you join the Usher Syndrome Family Network on the Coalition for Usher Syndrome Research site (www.usher-syndrome.org). There are lots of families in a similar situation you can connect with there. Good luck.
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