My New Year’s Resolution Involves Kanye West. Doesn’t Yours?

resolution

I found this fun little Random New Year’s Resolution Generator. I thought my resolution for the year was centered around the theme “less”, but no. I resolve to love others as much as Kanye West loves himself.

And that’s an awful lot.

This totally made me giggle! Why not try your hand at it and tell me what your random New Year’s Resolution is? I’d love to hear it! 😀

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An Open Letter: Alobar Holoprosencephaly

Seija

 

Dear Beautiful Stranger,

You found my blog by searching for the phrase “should i hold my holoprosencephaly baby after birth”.  My heart goes out to you, love.  I’m pretty sure that your heart is breaking right now.

I know you’ve been researching the diagnosis like crazy. I’m also pretty sure that you were as terrified of the pictures as I was. I couldn’t understand this crazy disease and what it meant for my child. I knew it was a death sentence. I knew, when I looked at the unusual faces of these children with alobar holoprosencephaly that they couldn’t survive. That their bodies wouldn’t be strong enough. I knew it was a gift to let them slip away, but knowing that didn’t make it any easier.

You’re going through your pregnancy knowing that you’ll lose your child. You’re suffering through the sickness, the aches, the nightmares, and the emotional pain without the promise of bringing home a baby at the end. You’ll deliver a baby in order for it to die. And when the pain of pregnancy is at its worst, you’ll think to yourself, “I can’t wait until this baby is born!” And then you’ll immediately crumple in shame, because by wishing for its birth you are, in a sense, wishing for its death.

It isn’t that way, love. It isn’t that way at all. Be kinder to yourself, my friend.

I know what it’s like to rest your hand on your tummy and to feel your baby kicking while looking at caskets online. I know how it feels to be dashing tears out of your eyes as you search for the perfect little white outfit with darling lace. You wanted it to be a christening outfit or a party outfit or a blessing outfit, but instead it will be a burial outfit. I know that you want to plan birthday parties instead of funerals.

You might feel guilty. Did you do this, somehow? Your medication or you exercised too much or you were terrible in a former life? Are you being punished? Can your marriage take this?

Do you have other children? Will they understand? How do you explain death to a three-year old? How do you explain to the lady in the grocery store who wonders where your tummy has gone when you never come in with the baby?

Will you love that child? Will you look at his disabilities with horror? If he has two eyes in one eye socket, which is so frightening in the pictures you find online, will you be able to handle that? Will you be scared of your own baby?

No, you won’t. You might think so, but you won’t. We knew ahead of time what my girl would look like, and that helped prepare us. Tiny club feet, a cleft palate. Yes, the one eye socket with two eyes inside. The proboscis over the eye. No nose. I’m grateful that we were indeed prepared, because it allowed me to see the other things.

Tiny fingernails. Tiny, tiny little toes. Eyelashes. The most beautiful mouth that took sweet, sweet breaths until her time was up.

She was my baby. I felt her move and kick. I stayed awake at night, worrying about her. Worried about us and our future.

She was beautiful. Yes, her face was a puzzle that was put together incorrectly, but symmetry doesn’t make beauty. She was a living doll. Her soul felt too big for her little three-pound body. Holding her genuinely did feel like heaven, and I don’t care how cliché that is.

Yes, my friend. Yes, my precious, precious stranger. You should hold your holoprosencephaly baby after birth. Hold him because he is your baby, and you are his mother or father. It will be tender and sweet and sad, but I think you’ll be surprised at the joy. That’s your baby. That’s your little one. You’ll love him or her always. Show him while you can.

All of my love to you.

-M

 

 

 

 

Hello From the IMC Unit!

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.

World Horror Con, Grief, and White Rabbits

Vegas bunny

I’m leaving for World Horror Con in New Orleans, tomorrow. I’m going with part of my writer’s group and I’ve been hopeful about it for quite a while. It’s my first World Horror. And in NOLA! Woo!  On the other hand, I’ve been exceptionally sad for the last few months and I don’t know if I have the internal fortitude that I need. I want to be with people who love me, not strangers.

It’s my daughter’s second birthday, and I’ll miss it. Miss the party, miss the snuggles and celebration. And I’ll miss having somebody to cry with. For those of you who don’t know, I was carrying triplets and we lost two. Daisy before birth, and Seija after. It has been two years since I watched one of my little girls die. I’ve been dreading this anniversary with everything I have.

Grief is a funny thing. Some days we manage quite beautifully, and others…I thought it would be easier by now. That life would be easier. It isn’t. There are good days and bad days. But everybody expects a few months of grief and then complete healing, including me.  And life doesn’t stop to let you grieve, either. I’ve been walking around with a gigantic Fragile: Handle With Care sticker for a while, but there are still bumps and bruises that just come along. That’s life, yes? 🙂  We all know it. We all live it.

Vegas bunny

I live in Las Vegas, in the middle of the city. Three days ago, a white bunny appeared on my front lawn. It was the most breathtaking, magical thing. A thing of true beauty. White and sweet and somewhere that she completely shouldn’t be.  I saw her twice that day. Later that night, while folding laundry and watching true crime (as I am wont to do) a white bunny factored into the crime case. That was three white bunnies in one day.

I can’t tell you what that meant to me. It seemed like an omen of hope. Of good things. It filled my heart.

I saw her again, yesterday. Twice.

She’s here again today. That’s three days of hopeful white bunnies.

white rabbit

I’m very divided on what I think. I couldn’t tell you if I believe in signs or not. I’ll say no, then secretly think yes. I’ll say yes, and secretly think no. I’m a Pisces. It comes with the territory. 😛

But this? I choose to think yes. That Omen (which is what I named her) showed up to give me hope. The joy that she gave my children was indescribable. Mom! A bunny! At our house! I think it’s magic!

I’m ready to reboot. Head out to this conference and focus on writing for a while. Friends. Enjoy the city. Become inspired. Saturday, their birthday, the day I’m most afraid of, is full from top to bottom. I’m reading from Beautiful Sorrows. Doing a panel. Going to a Kaffeeklatsch with Ellen Datlow. Running pitches for two hours. Going to the Bram Stoker Awards banquet. And I’m wearing a really darling little dress that I bought because it just looked so happy.  I’ll try my hardest to make it A Day of Happy. If you’re there, won’t you join me?

In Which I Apologize To That Nice Couple In The Grocery Store

It all started because I didn’t want to freak them out.  Which was a good intention, but the road to Hell is paved with good intentions.

My littlest is a year and a half old. There should be three of them. They should all be a year and a half old. Most of the time, I look on the bright side.  At least we have Itty Bit! What a joy she is! What a darling, yay!

But the cold truth sneaks up on me from time to time.  Holidays that should be spent with the triplets, but not. Milestones that should be hit by three little girls, not just one.  My doctors have upped my antidepressants. I struggle to get out of bed sometimes, but I do.  I sleep with a tiny, tiny blanket under my pillow.  That blanket doesn’t belong to anybody anymore.

This couple today, they were so nice.  He was talking to Itty Bit and she was talking back. And I find myself blurting out, “She’s a triplet.”  Which is what I’ve been thinking about lately.  It’s on my mind all of the time.  I can’t sleep at night.  It’s become all-consuming.

And this nice, wonderful couple says, “Oh? Are they identical?”

And I don’t know what to say, because they’re so wonderful.  When I say, “Oh, we lost two of them,” well. That really tends to wreck somebody’s day.  People don’t know what to say and they don’t know how to speak to me after that. It’s incredibly uncomfortable. They’re all, “I’m sorry,” and I say, “It’s okay,” and you know what? It isn’t okay. But I can’t say what I’m really feeling, either, which is usually something along the lines of, “I wonder what they look like inside of the casket. I have nightmares. I know their souls are somewhere better but they really should be here with me, you know?”

So I said, “Yes. They’re identical.”  A little white lie, which doesn’t hurt anybody, and keeps me from falling apart. Because I’m falling apart this week, my darling friends. It’s almost more than I can bear.

But this couple, they’re so wonderful. They’re telling me about their little girl, and her birthday, and asking what it’s like with three, and how do we tell them apart, and although my mind is saying, “Whoa, this isn’t true!” it seemed so much easier to keep talking. And it was a joy. I talk about the girls as if they’re alive, and we have three little ones, and I tell them what I always thought we’d do to tell them apart, and how we always figured we’d take care of them, and I mention the dreams that I have for them as if they were real, but they’re not.

And this couple, I like them. A lot. She reads horror.  I’d totally want to hang around with them. I give them my card and send them to the magazine.  And by this time I’m feeling horribly guilty.

I’m not a liar. I’m almost painfully honest.  My intentions were good, but it was a weak moment and I didn’t do the right thing. I should have told the truth right away, as painful or awkward or uncomfortable as it was.

I saw them later in the store, and wanted to run up and say, “Hey, you know what? I wasn’t being truthful.”  I very nearly did that, but I thought the only thing crazier than a nutty lady who talks about her kids is a nutty lady who talks about her dead kids like they’re still living.  And nobody wants that much honesty, really.

But it wasn’t true, and even if it was a lie told with good intentions, and a sad amount of desperation to simply forget what is real for a second, a lie is a lie is a lie.  Sheesh, I’m a Sunday School teacher, for crying out loud! I know better.

So I’m very sorry, wonderful couple at the grocery store who will probably never read this.  I’m neither bonkers nor a liar (usually) and I’m sorry that I was untruthful with you. But thank you for being so kind and asking about my daughters.  I grieve them every single day, and I thought it would get better much faster than this.  But thank you for letting me think about them as darling little toddlers. Although I went about this the wrong way, you brought me much joy for that time. Thank you, and please forgive me.

Let It Fall: A Guest Post About Coping With A Diagnosis

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.

A Newborn Field Mouse

I have to be honest;  It’s still difficult to be here.  I want to get back onto the writing/blogging horse. After the birth of one daughter and the death of two more, I feel like I’m a newborn field mouse, stumbling around in the meadow.  Some days I’m absolutely full of laughter.  Some days I wonder if I’ll ever stop hurting.  It wearies me to put pen to paper sometimes.  The keys of the keyboard are harder to press.  I stare into space thinking about how lucky I am, or how saddened I am, or how damned I am.  But writing gets me through it. It’s how I process.  I’ll slowly start making the blogging rounds again as I get my feet under me. I miss you, and don’t give up on me, yes?  🙂

The Time Has Come, The Walrus Said…

 

So it’s official. I’m on bedrest.  My doctor called me out in a spectacular way, saying that if I didn’t slow down I’d spend the rest of my pregnancy in the ER.  Ever the “Don’t tell me what to do” type, I eyed him.

“Slow down how much?” I asked.

“Full stop.”

“Impossible.  How about if I lay down for two more hours a day?”

“This isn’t a negotiation, Mercedes.”

Then we negotiated.  It was awesome.  End result is basically that I’m screwed and can’t do hardly anything.  Zero stress.  Six contractions in an hour and I’m in the ER.  Which means that I’m in bed all. of. the. frickin’. time.  I realize that I have the most boring ceiling in the universe.  We’re sticking plastic stars on it this weekend.

I checked my Writing To-Do List and realized there were 15 projects lined up on it.  Some are fairly small (flash fic contests, for example) and some (revise Demon novel by the end of the month, completely write, revise, and polish second novel by October) are gigantic.  At a time when my stress is naturally sky-high, I’m doing everything I can do reduce it.  I’m going to let some of the smaller projects go.   And my blog posts will drop from three times a week to once a week.

“Yay!  Hooray!” you shriek. “Less posts to read in my reader!”

I know, I know, dear friend. Change is difficult.  But this is really for the best–

“My networking load has drastically diminished!” you say, dancing wildly.

–and it isn’t like I’ll be gone forever. Or even much. Besides, I’m all over Facebook and Twitter, and I doubt that will change because, let’s face it, I need the social aspect or I’ll go insane–

“I AM SO HAPPY!” you wail.

–and I’ve been a lousy blogging friend, anyway.  I hardly ever comment.  I just lurk.  Really, I’ve become downright creepy. I hope that you understand.

So! Anybody interested in sending in your Writers in Masks pictures, I’d love to collect them! I just won’t be running them until later in the year. The babelets are due this summer, so we’ll see what happens then.  Anyway, enjoy! Run free, my loves. 🙂