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Posts Tagged ‘Williams Syndrome’

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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Which is even better than warping them any other day of the year, except maybe on their birthdays. Bwa ha ha!

Mother’s Day was very bittersweet this year.  I was able to enjoy my precious children (who were obviously possessed by imps today.  Sweet and adorable they were NOT, at least until after nap time).  That was very sweet.  But I very much mourned the loss of my daughters who passed away last year. It will be a year next month, and when you think your feet are finally under you, there are days when you emotionally faceplant. But we’ll discuss loss later in a different post.  Today is for celebration, for I have successfully warped my little ones!

First, here is a letter written by my son.  Niko is nine years old and has Williams Syndrome. He types very well on a computer, but struggles with handwriting due to muscular issues, spacial issues, and the fact that he is a lefty. We all know that lefties are going to hell, as reported by a million and one websites.  Which are serious about it.  Apparently I’m supposed to tie Niko’s left hand behind him and force him to write with his right, but I’m lazy and, um, NOT CRAZY, so there goes that.  Anyway, he did this:

So you see his name at the top?  Then he wrote MAMA.  I’m not ashamed to tell you that this literally brought me to tears.  I know how to turn your kidlet’s handwriting into a necklace, so I’m going to do that with this and wear it with pride.

My four-year-old did this picture:

She said, “That’s you on the bottom.  You’re scared, and I’m making you feel better.  And here’s a rainbow.  And a puppy.”   Do you see my mouth drawn in a round ‘o’?  Because apparently I am terrified of the joy that rainbows and puppies bring.

“This is beautiful and warped, darling,” I told my daughter.

She smiled prettily.  “Thank you.  And your hair is blue.”  Rock on.  I haven’t had blue hair since I was a newlywed, I think.

Yesterday she drew a picture of our turtle.  “This is Rush. And this is the shark that’s going to eat her.  And here’s Rush’s apples and celery, so she isn’t hungry.”

That’s my girl.

Happy Mother’s Day to you, my friends.  May it be all that you hope. :)

 

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Did you know that February 29 is Rare Disease Day?  It’s also Jay Faulkner’s birthday.  Jay is a family man, editor, and friend who allowed me to do a guest post on his blog to raise rare disease awareness.  I’ll actually have a few posts there through the month, since my family and I seem to constantly hit the rare disease jackpot.  Williams Syndrome?  Check.  Alobar holoprosencephaly? Check check.  Postpartum eclampsia? My doctor’s didn’t even know it existed, but check check check.  Don’t worry, I’m not posting about that.  ;)

This post is a chapter from the memoir that I’m writing about our journey with Williams Syndrome.  Jay wrote a delightful intro that made me laugh out loud.  It explains our cosmic bromance (I was also called an alpha male this week, too.  I think I need to wear more ruffles).  While you’re there, read all about Jay and how he discovered that he, too, had something physical to cope with.  You’d never know it, because he’s such a happy, enjoyable man.  It takes real strength to admit when you need help, and Jay took the plunge to do so.  Please swing by and read Let It Fall.

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It’s all sunshine and hummingbirds.  Happy Thanksgiving, my friends!

 

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Sounds like a bad joke, right?  Only it isn’t.  Through a series of miscommunications and things that would be heartbreakingly comic if I was watching it on TV, my son ended up freaking out on the school bus.  So much so that the school police were called.  My car had mysteriously died this morning, my baby hadn’t slept all day and was wailing, my daughter was so disobedient that her head was practically spinning, I was out of Coke Zero (yeah, the no caffeine for a month thing?  Longest month of my life), and then this?

At least the officer was nice.

My son was delighted to be home and buzzed happily around the house, checking to make sure that the microwave, washer, dryer, and vacuum were all in their proper places.  Absolutely no sign of the trauma that had ensued.

I will be driving him for his last two days at school, because on Thursday we move him to an autism classroom.  I’m not sure about his new placement, but his current one is an awful fit.  Obviously, yeah?

My little troublemaker.  Getting into scrapes with the law.  Egads.

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I just finished watching “The Stranger Beside Me”, a movie made from Ann Rule’s book of the same name.  I read the book years ago and loved it.  If this title is new to you, then run yourself right down to the bookstore and pick it up. It tells about Ann’s struggle to become a true crime writer while a friend of hers is jailed for murder.  Her friend’s name?  Ted Bundy.

While Ann’s connection with Bundy seems like gold to a writer, I’m sure that she would have given anything to avoid such a terrible situation.  But she couldn’t.  The situation was there, and if she is anything like most writers that I know, writing is perhaps the best way to process it.

Fiction is my true love, and always will be.  But lately I find myself foraying into the world of personal essays.  My son was born with a genetic syndrome that I was, quite frankly, unprepared to deal with at the time.  Through the years I have battled medical emergencies, physical abuse in the school system, and mouthy jerks on the street.  I jettisoned the people who made our life more difficult and built relationships with those who make it wonderful.  When I write an essay about our experiences, I can see how far we’ve come.  It helps me put it into words.  I know there are a group of strong parents whose children are going through the exact same thing.

We’ve also lost one triplet and know that, without a doubt, we will lose another.  There’s grief in such knowledge, but there is also strength.  I know that the triplets will no longer be Winkin, Blinken, and Nod. There will be a single baby.  But I hope there will be a few brief minutes where I will hold both of my girls and tell them how much I love them before the one passes.  I know she’ll be extremely disturbing to look at.  I’m prepared for the nurses to look away.  I’m prepared to kiss her broken face because it is infinitely precious to me.  I’m sure I’ll write about it when the time comes.  I don’t know any better way to cope.

There will be many more difficult things to write.  We all have so many stories to tell, so many horrors that we’ve stood up to and faced.  Don’t sanitize your work.  Don’t take the difficult parts out because it’s too painful to write.  Sometimes the only way out is through.  These things make us strong, and they make our work shine.  And it’s all about the shine.

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