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Posts Tagged ‘Williams Syndrome’

zombiepalooza

Hang out with the epic Zombiepalooza show! My portion starts an hour into the show, and runs for about 50 minutes. I really had a lot of fun. :)

You can watch the video here.

Jackie and crew really work hard to put together something special. Thank you so much, you guys!

 

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Williams Syndrome Awareness Month

Most of you are familiar with the fact that my 11 year old son has Williams Syndrome. It’s an exceptionally intricate genetic syndrome that affects so many things about him. His heart. His mental capabilities. He’s going to middle school next year and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves!

I posted about WS here and here and here.

If you or somebody you know has been diagnosed with Williams Syndrome, or you’re just interested in our story from the beginning,  you can read my WS blog, A Peeko At Niko.

And, as always, there is wonderful, wonderful information at The Williams Syndrome Association.

Have a wonderful May, everybody!

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It’s true, I am a nerd, but today we’re talking about the Following the Nerd Podcast. My dear friend Jay Faulkner (who once wrote an introduction describing our bromance on my “Let It Fall” guest post on his blog for Rare Disease Day) interviewed me for his radio show in Ireland. It was so much fun! If you’d like to listen, you can hear it here, or if you’re an iTunes fan, you can listen here. Episode 88. I arrive at around the 24 minute mark, or so. We discuss being professional, putting together a short story collection like a music album, and The Stabby.

So there’s a post on coping with a disease diagnosis and a giggly interview. Light or dark, take your pick. :P

Happy Sunday, my friends!

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We’ve been hit by a plague that took us down one by one. I spent two days in bed, physically unable to get out. The kiddos dropped like flies. So did my husband. We were attacked by Pestilence Pony.

Littlest is currently in the IMC unit at our hospital with pneumonia. They’re having difficulty stabilizing her oxygen levels and her heart rate. When the Yardleys do something, we do it BIG. Yay, overachievers!

We’re hoping for a release in two or three days. She’s still playing. Sitting on my lap and being snuggled. It’s a little scary but we’re in high spirits.

 

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I’ll admit that it was difficult at first. I hate hospitals. I walked into the room and my first thought was, “I spent so much time in here with Niko.” The treatments. The tubes. The nebulizers. My next thought was,  “The last time I was in a place like this, we lost the girls.” There was a wash of emotion that I battled for about an hour. Then things were all right. They usually end up all right. :)

My husband threw together a hospital bag for Lil and I. He’s gotten really good at it over the years. I was delighted to find that this bag had my blanket in it, my Jack Skellington plushie, some Coke Zero, and chocolate covered pretzels. Oh, and my ukelele. Can’t forget that!

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My friend ran over three days of dinner to my family, then came and sat with me for hours. She brought flowers and a Hello Kitty doll for Lil. Things are scary. But people can make it so much better. So thanks, everybody. Soon we’ll be out and all will be well.

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Las Vegas Book Festiva;

 

The Vegas Valley Book Festival was fun! A lot of people came out. We represented the HWA, sold a few books, and I drank a LOT of Diet Pepsi. But my favorite part?

Once upon a time, when Niko was a little boy, we were on the dialysis floor. He wasn’t having dialysis himself, but received a pamidronate treatment to help his calcium levels go down. While we were there, I found the most charming, hilarious book on the waiting room table. It was Walter Dean Meyers’ The Dragon Takes a Wife.

The Dragon Takes a Wife

It is one of the best children’s book I’ve ever read. Clever. Original. The fairy, Mabel Mae, has a beautiful afro and uses 1970′s jive talk. I loved it so much.

I wanted to steal it from the Seattle Children’s Hospital, but, alas. I thought that would be in poor form.  It’s out of print, but I tracked it down and bought an old copy from a library.

Walter Dean Meyers was reading at the festival, and I sneaked in to listen. Fantastic. I had brought my ragged, shredded, tattered copy of The Dragon Takes a Wife, and my friend X asked Meyers to sign it for me. I was all giggly.

Walter Dean Meyer

That was my favorite part of the entire festival.

Do you have a children’s book that means something special to you? Can you tell me about it?

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Niko

My son is absolutely beautiful.  He just had a growth spurt.  He’s stringing more words together than ever.  He has Williams Syndrome.  He’s such a joy.

The other day he was smiling and touching my eyes.  “Mommy’s eyes,” he said.  His face lit up as he thought about one of his favorite things.  “Hamburger buns.  Mommy’s hamburger bun eyes.”

There has been much sadness lately. My heart feels constantly full.  Full of sorrow, full of joy. It’s the holidays and I struggle with what that means for my little family, for my missing daughters and my sweet son who is confused and frightened by all of the bustle.  But he reminds me what’s important.  I don’t need eyes like stars or diamonds.  Although the world may sometimes harshly judge my son, he doesn’t judge anybody back.  He’s content to roll on his back and point to his Mommy’s Hamburger Bun Eyes.

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One of my goals was to join the Science Fiction and Fantasy Writers of America, or the SFWA. It took a lot of hard work to become a member, and many of my writing goals are still SFWA oriented. For the third stop of the Beautiful Sorrows blog tour, I conrtibuted a post titled “Define Me: The Role of Changelings in Folklore to the SFWA blog. Please stop by and read it! It’s such an honor to contribute to something that I respect so highly.

Also, the very cool and gorgeously lipsticked Rebecca Brown interviewed me on her blog. It’s more Mercedes than you can handle! Since it’s late at night and you’re surfing the web mindlessly, drop by and see her, will you? :D

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Oh, my darlings. My dear ones.  I have been far busier than I have ever been. Last night I laid everything out for my writing group, whose eyes grew wider and wider and I continued without taking a breath.

“And I’m almost caught up on anthologies, but of course I still have the main novel and the book launch and volunteering for Killercon and I’m behind on putting my blog tour together but I have some signings scheduled and then there’s school and Niko’s bus takes him to THE WRONG SCHOOL and tomorrow are cardiologyappointmentsandthenwehaveimmunizations…”

Do you know what my group said?

“They shouted, ‘Mercedes, you’re nuts!’” you shriek with glee. And you would be right, if they were ordinary people.  But, ah, they are quite extraordinary.

They offered to watch my kidlets.  They offered to fill out paperwork if necessary.  They are wonderful, and if it weren’t for Mason, Ryan, and billie, I would be curled up in  little ball about now.  Thank you, my dear, dear friends!

So for a quick update:

Niko’s bus will finally start taking him to the correct school next week.  It’s been crazy trying to drop two children off at separate ends of the city when their schools start 10 minutes apart, but soon it will be manageable!  The cardiology appointment, which I was dreading, was a four hour ordeal, but both Niko and Lilia have good, stable hearts.  What a relief!

The book launch for Beautiful Sorrows will be a wonderful, low-key event  at Killercon.  Not only will I be doing a reading, but I’ll be meeting several friends (and the Shock Totem staff!) face-to-face for the first time. I’m delighted!

I hope you can come.  I also invite you, if you so desire, to help me spread the word about Beautiful Sorrows.  I can’t express how excited I am!  I love the cover.  I love the illustrations.  I love the stories, and the preface made me swoon.  Shock Totem Publications put such care into this book, and it shows.  If you can tell your friends, or surprise them with copies for Christmas, or possibly share pictures of the cover (below), or put the banner above as your Facebook cover (just click on them to bring them to full size)  I would be so pleased! So many trials and tears to get to this point, and now I look around and think, “I think that I am very, very happy.”

 

 

 

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I’ll tell you straight up that he wasn’t missing for long, about 20 minutes, and he was returned safely.  But I died a little during those 20 minutes.  I didn’t know a heart could stop beating for that long and still let somebody survive, because I felt like it didn’t beat again until he was found.

Most of you are familiar with my little boylet, Niko.  He’s nine.  He’s mischevious, and loving, and doesn’t have any guile in his body.  When he’s sad, you know he’s sad. When he’s delighted, you know he’s delighted.  Niko has Williams Syndrome, has been speaking for about two years, and loves to explore more than anything in this world.

He’s a runner.  When we bought our house in Vegas, the main selling point was a beautiful backyard with a six foot high wall that surrounds it completely.  We have three locks on our front door, each one getting more elaborate and placed higher as Niko gets taller and more clever. My parents childproofed their house for my kids.  A door at the top of the stairs, and special locks on every outside door that opens with a key.  The key is hidden over the door frame.  I am touched by every precaution. We’re spending a week with my parents now.

But sometimes we slip up, and yesterday Niko escaped and took off when our backs were turned.  There was absolute horror when I realized that the door was open.  It was about 9:30 at night, and dark.  We live half a block from a main road. Nobody would be able to see Niko in his dark pajamas, and he wouldn’t realize that he would need to dodge the cars.

We spread out.  I stayed at the house because the girls were asleep and I wasn’t going to leave them alone.  My parents started knocking on doors and checking the roads.  Every terrible scenario came to my mind.  I am all too keenly aware of how precious life is, and how brief it can be.  I’ve never taken it for granted.  Do you know what horror is?  We talk about it all of the time.  I read it, write it, and last night I was living it.  A missing child is true horror.

Somebody rang the doorbell. I run outside and there’s my friend Shawn, a guy that I met 20 years ago in junior high.  I haven’t seen him for a decade, but he’s standing on the porch saying, “I have your son.”

I have your son.  The sweetest words somebody could say to a frantic mother.  I feel my heart beating again, but it’s too fast, so fast that it’s making me dizzy.  I shout to my parents that we have him, and to stay with the girls, and then we’re running to Shawn’s house.  He had moved in around the corner, and his house was on the way to the elementary school, where the kids and I had played earlier that day.  I’m sure that’s where Niko was going, but he stopped in at Shawn’s house, walked right inside, said something about computer, washers, and dryers, and headed for the laundry room.  A small boy in pajamas and without shoes, who doesn’t speak clearly and walked right past the two big family dogs.  Shawn’s wife was on the phone with the police, knowing that there were frantic parents somewhere.  Shawn said, “Let me see him.  Oh, that’s Niko.  I know him from Facebook.”

I’m on Facebook all of the time.  I talk with my friends, check out other writers.  I look at pictures and I post pictures.  Pictures of writing events, of cool places that we’ve traveled.  Of my kids.  I’m so grateful that I posted pictures of my kids.

I’m much more grateful that an old friend checked them out, and was able to remember them.  As I write this, Niko is flitting around me, humming songs.  He’s carefully checking out my parent’s washer and dryer.  He slept easy last night, falling into bed without realizing that anything was amiss. My parents and I stayed up for hours, walking around the house and trying to wind down.  You just don’t let go of fear.  It doesn’t just leave you.  It has to be worked out of your system like poison or disease.

Niko is clapping his hands and smiling at me.  I’m so grateful for friends who care, and give me the opportunity to smile back.

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This is my kidlet. He’s nine, he’s frickin’ adorable, he has Williams Syndrome, and he’s unruly on the bus.  He just can’t sit still.  Last year the bus had an aide and that was all that was needed, but this year transportation has gone completely insane.  The budget cuts are astronomical. It’s impossible to get an aide for him; I know because we asked.  Repeatedly.  We were trying to avoid the “Hello, Mama, the police brought me home!” thing again.

This is the answer: A weight vest.

At least, it’s what they call a weight vest, because that definitely isn’t what this is.  A weight vest is, of course, a vest that is weighted.  It can be specially made, or it can be a fishing vest with beanbags in the pockets.  The idea is that the extra weight will make the child feel secure.  And it works, because Niko has used weight vests for years and did very well with them.  This, however, is a harness.

The metal hoops on his shoulders clip to an apparatus that is securely fastened to the bus seat.  There are metal hoops on each skinny hip, as well. It zips up the back and buckles between his legs like a parachute harness.

Oh, he hated it at first! How he screamed! It was absolutely heartbreaking. As time went on, he became more used to it.  I’m trying to do the same.  It’s very nice to know that he’s secure in his seat and that he won’t be running pell mell on the bus, and it’s especially nice to know that the next knock on the door won’t be Las Vegas Metro handing over my little one.  It’s still very difficult to physically strap him down every morning. But that’s life, yes?  Take the bad and celebrate the good.  At least my son is so gosh darn charming!

*UPDATE* I wrote this post a long time ago (hence the coat. It’s a bazillion frickin’ degrees outside right now! A coat? No way!) and we’ve had time to adjust to the harness.  It no longer frightens him, and he actually seems to feel very secure wearing it. It took a few months to get to the point that we’re at now, but with consistency and adding it to his daily routine (“Go potty, wash your hands, and then we put on the harness!” we’re at a great place with it.  I’m glad we have it, especially since he’s been watching youtube videos on learning how to drive school buses.  Dodged that bullet!

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