Sunday, July 31, 2011

All growed up

As the mother of preemie twins — one of whom is developmentally delayed — the question I get asked most frequently is also the one without a very good answer: "How old are they?"

Before I had children, I would marvel at parents who could quickly rattle off numbers like "27 months" while I spent five minutes trying to figure out what that actually meant in years. Now that I do have kids, I know that every month you haven't killed them — either intentionally or unintentionally — is a major milestone worth bragging about.

But I still don't have a ready answer about their age and find myself paying less and less attention to the 26th as it passes by on the calendar. You see, they were born June 26, but they were due Sept. 6. But twins almost never make it to their due date, so even if they had been "on time," they likely still would have been August babies. (Indeed, they came home from the NICU on Aug. 12, which just so happens to be my birthday.) On top of that, because they were so premature, Jaden is just a little slower to do some things than other babies. And, of course, the big fat cherry on top is that Malachi has the motor control of maybe a 5-month-old.

So when people ask me how old they are, what I want to reply is: "Pick a number between 5 and 13 months. ... You're right!"

(What I actually say is "a year," which I think throws them for a loop since they are expecting me to reply with a more precise calculation like most parents of under-3-year-olds.)

This week, however, I have noticed a huge shift in both of them. They can't walk or talk yet, but they suddenly seem like kids, not babies. The biggest difference is that I feel like I can finally communicate with them. They imitate me in a way that I can recognize. I blow raspberries, and they blow raspberries. I say "nah nah nah," and they say "nah nah nah." I clap my hands and... well... Jaden claps his hands. Malachi waves them in the general direction of each other.

Not only that, after months and months and months of using baby sign language, I'm pretty sure I saw Jaden sign "milk" right next to a bottle the other day. He also has been grabbing onto my legs and offering me food or toys, none of which had happened even a few days ago. And my favorite new development happened today: at the beginning of lunch they both turned to each other at the same time and laughed the same laugh. It said: "Dude! We're eating yogurt! I LOVE YOGURT!"

But here's the biggest milestone this week: Jaden is now mobile enough to get to things I can't put away. This means that for the first time, I've had to tell him "Jaden, no" and needed him to know what it means. I was frankly shocked when he froze and sort of nervously edged away from the forbidden item.

...only to edge back over a few minutes later. But still! Progress!

This is sooo exciting! It means they have finally crossed over from the realm of animal-like creatures to human beings I might one day have a conversation with!

So I still don't know how old they are, but I've decided it doesn't really matter.

As their grandparents' generation says: Age is a state of mind.

Jaden and Malachi at their 1st birthday party.

Wednesday, July 27, 2011

Wordless Wednesday:
Look, mom, we're "standing"

Sorry I haven't written a post yet this week. I've been having too much fun with my new friends over at FOR(m)UM: a place for moms (and dads!) of multiples with disabilities to connect. If you fit that description, come join us!

Otherwise, here is what I think is an interesting photo also in the vein of "The same, but different," which was our theme last week.

He's not showing it in this photo, but Malachi likes his new stander! ... in limited amounts.

And here's a fun one of us at the zoo, just because.

Wednesday, July 20, 2011

Finally! A place just for parents of multiples with disabilities to connect!

Ok, so before I had twins, I would have waited for this to be totally perfect to unveil it, but my husband is literally in the driveway right now with the boys so if I don't do this now, it'll never get done.

I have — in the space of about an hour — created a forum on this site for parents of multiples with disabilities to connect. Because of this fly-by-the-seat-of-my-pants approach, I'm calling it a beta version. So act now to get in on the ground floor! (Doesn't that make it sound exciting?)

Anyway, I've met a lot of wonderful people who are dealing with disability on top of caring for twins, triplets and surviving triplets and I feel like they should all get to know each other, too. If you are such a person, please visit this new forum and introduce yourself. You can find the link on my pages tab to the right, or follow this link.

Like I said, it's pretty rough. I put up a few topic folders that I brainstormed, but feel free to make this space your own!

Oh... I almost forgot the most important part. I've decided to call it FOR(m)UM. Get it? "Forum"? "For mum"? Ha. Anyway... 

Please visit the Welcome message and then add your own. No topic is off limits! Thanks!

Tuesday, July 19, 2011

If a tragedy happens and nobody cries, is it still a tragedy?

Lately, I find myself annoyed at how damned gracious and accepting of Malachi's disability people are being.

My close friends and family have totally taken it in stride. They shrug off his inability to cope with frequent loud applause at a graduation, while I fret about how it might mean he can never attend sporting events, rock concerts or fireworks displays. They smile with a "well, of course, we knew he could do it" attitude when I tell them with tremulous relief of his latest achievements. They love and accept and make fun of him just as much as they do with Jaden, while I watch for the slightest sign that he's being treated differently.

They are treating him as if he were born with the differences we all have that make our lives a little harder, like being bad at math or having brown skin or being butt-ugly.

Damn them.

I just want to scream: "Don't you get it?? This is a BIG DEAL!!"

But then I think: "You're being stupid, Shasta. Would you prefer it if they looked at Malachi with pity? Do you want them to treat you like a leper? If anything, you ought be more like them. If you didn't treat it as hard work to have a special needs kid, maybe it wouldn't be."

It's a nice thought — mind over matter and all that — but it's simply not true. Other new parents don't have to spend hours researching treatments, filling out zillions of applications, dealing with social workers, reading books and blogs, doing physical therapy, positioning him appropriately, spending extra time at feedings, massaging his tight muscles, etc., etc., etc.

And the worrying. Good grief, the worrying. All parents worry, but when your only mental defense — that such things are remarkably uncommon and the vast majority of babies turn out just fine — has been completely shattered, then there's not much left between you and the howling winds of uncertainty.

But then, if I just thought of CP as like having green eyes — a unique but judgement-neutral trait — most of that would float away, wouldn't it? All of that work and worry is focused on getting him the most functionality possible, i.e. to not be so different. When the "different" part is stripped away, what is left?

Would this no longer be a problem I have to fix? Could I just throw in the towel, not care if he never learns how to eat solid food or walk, because who cares? We have wheelchairs and blenders, so what's the big deal?

How much of my pain and my perception of Malachi's future pain is based on actual problems and how much is based on comparisons to other people's lives? In a hypothetical world void of judgement, would Malachi even be bothered by his deficiencies? Sure, all of us have wanted X-ray vision, but I don't think it's the defining disappointment of anybody's life.

But we don't live in that hypothetical world free from prejudice, and even if we did, Malachi's disability isn't like having green eyes. It's hard work, for him and for us. It dominates my daily existence. It clouds my mind and makes it difficult at times to think of anything else. It threatens his life with too-close-for-comfort complications like a startle response that could land him in traffic and the inability to swallow food correctly that could lead to aspiration pneumonia.

So, thank you, friends and family, for being so accepting of Malachi's cerebral palsy. It really means the world to me that I don't have to deal with prejudice on top of everything else.

But it is still cerebral palsy. It is a disability. It is not like having green eyes.

Monday, July 11, 2011

Look! Somebody interviewed me!

The glorious Laura Stanfill, a Portland novelist who writes about life and writing and reading at, posted her interview with me this morning! She asked me lots of interesting questions about my new novella A Twist of Fate, this blog and about my training in newspapers.

Go check it out here:

And if you missed the excerpt from my book, it's here: EXCERPT: A Twist of Fate

Saturday, July 09, 2011

EXCERPT: A Twist of Fate

Here it is, as promised, an excerpt from my recently completed novella, A Twist of Fate. The story is about three women from India who are struggling in their very different lives as a stripper in New York, a gold trader's daughter from California and a slumdog in Mumbai. But when they suddenly find themselves in their counterpart's life, they find the personality traits that got them into trouble in their own life are assets in the other woman's life.

In this excerpt, Brandy, a gold trader's daughter from Orange County, is recovering from a crash landing of her private plane into a forest in Oregon.

Nightfall came and Brandy was no closer to making fire than she’d been while unconscious. Indeed, she was now worse off as her efforts had yielded only sharp scrapes and bruises on her knuckles from trying to bang rocks together. When she got desperate, she’d even tried to hit her computer battery, though she didn’t have any clear ideas about how that might make a spark.
She had had luck with water, though. There was a stream not too far off.
But that was it. An entire day and nothing to show for it. She’d wandered in every direction as far as she felt comfortable going from the plane, but she never found any signs of food or of the rest of the airplane.
Brandy cursed her luck for the thousandth time that day and resisted the urge to punch the wall of the upturned cabin. 
“Wouldn’t do any good,” she grumbled to the evergreen trees. 
Brandy tore out as much of the stuffing as she could from the seats that were now on the ceiling and spent a long, cold night trying desperately to get warm enough inside the cabin. She woke for good at dawn deciding that she might want to try sleeping during the day and working at night for warmth.
By now, she had run out of good ideas as all of hers had come to fruitless ends. She was tired and hungry and quite frankly not used to being in situations where her ideas didn’t work out the way she wanted them to. She decided to give up.
Brandy was nothing if not logical. The trait helped in AP Economics and at her business ventures, not to mention keeping away from boy trouble. She could often find a clear solution that eluded others because she could see through seemingly complex problems to what really mattered. In the same way, she could see when a problem didn’t have a logical answer and would dispassionately give up trying to find one.
That’s where she was now. Nothing she tried worked. The tools she needed were not available, so there was nothing left to do but wait for alternate input, for the data set to change.
I’m just going to sit here, conserve energy, and wait for them to find me.
She glared for a while at the place where she’d tried to make fire, at the neat pile of wood she’d stacked, at the organized collection of personal items laid side-by-side in the cabin.
I have more wealth and technological innovation at my fingertips than any of those so-called “Indians” who lived here before, but what good is it to me out here?
Out here none of that matters.
All I want is a warm meal and a place to sleep.
Fuck it.
I have nothing. I am nothing. Let the nothingness take me.

*  *  *

Brandy rested her head on her knees and frowned droopy-eyed at the ground. She didn’t think she’d fallen asleep or ever really closed her eyes, but she eventually noticed that the blurred colors before her eyes were whites, reds and yellows instead of browns, grays and greens.
Her eyes widened and shifted into focus as her head snapped up. A loud caw sounded as an unusual-looking seagull soared past her head, alighting on some nearby garbage. 
She stood up suddenly and the trash beneath her shifted, sending her tumbling to the ground. She caught herself, but remained on her hands and knees, examining the writing on a package of crackers. It was familiar, like an old lullaby. She couldn’t immediately figure out why the writing was so strange, yet so familiar.
Then she remembered the colored blocks with those strange, squiggly letters and the children’s books her grandmother used to give her. This was the language of her home country, the one she spoke with her grandma and other distant relatives, but rarely read: Hindi.
She stood up and looked around from atop the garbage pile. There were the tin-roofed shacks she’d seen in movies and the skyline of a large, crystalline city in the distance. 
No, it couldn’t be.
She looked around frantically and called out “Hey” to a little boy further down the trash pile before remembering to switch to Hindi.
Suno!” she cried. The little boy looked up as she tripped down the hill towards him. “Where am I? What is this place?”
He tucked his chin in disbelief and looked up at her under thick, dark eyebrows.
“Sita, what are you talking about? This is Dharavi, you know that.”
The boy waggled his head a bit at the end, hoping his stating the obvious didn’t cause any offense, but he could see from her blank stare that she still didn’t understand. “Sita, mensaab must’ve hit you pretty hard, ya?”
“Dharavi,” she said, staring out at the skyline and continuing aloud in English. “It can’t be. How. It’s not possible. I was just in the forest.” She turned back to the boy and said in Hindi:
“I’m in Mumbai? In India?”
Haa. Of course. Why are you talking so funny, Sita?”
She didn’t answer, but sunk back down onto a pile of garbage, muttering to herself.

Thursday, July 07, 2011

Hey, you know what else I do?
Write fiction.

So, here's the standard reaction when I tell people I've finished my novella:

"Don't you have twins? Don't you have a disabled child? Don't you have a million therapy appointments? Don't you have a blog? Where do you find all the time?"

I dunno why nobody asks about the state of my kitchen. Or my garden. Or my waistline. (OK, I do know why. That would be rude. Please don't ask about my waistline.)

Anyway, I have finished a novella, which for those keeping track is shorter than a novel, which is what I'd hoped to write. But — curse my journalism upbringing — I have a hard time writing about random things that don't move the story forward. Therefore, A Twist of Fate is a fast-paced, entertaining romp through the lives of three women who swap lives... with sexy results!

How does that sound for a jacket cover? Hmm... still a work in progress, I think. Here's what it's actually about:

Three women — a coke-addicted New York City stripper, an Orange County gold trader's business-savvy daughter and a water-fetching slumdog in Mumbai — suddenly switch lives. They discover the personality traits that got them into trouble in their own life lead to success and happiness in their counterpart's life. But when they are rotated again into the second woman's life, those same traits lead very quickly to certain death.

So, that's the story. But what it's about is that people are often blamed for the bad situations they are in because there must be something wrong with them. I wanted to show how those same traits can be good in the right circumstances.

Hopefully that sounds interesting. It's much less complicated in the book than when you try to describe it in a couple sentences.

This weekend I'll post an excerpt and then on Monday my friend and fellow novelist Laura Stanfill will post an interview she did with me on her blog, She asked me a bunch of neat questions about my process so head on over there next week to check it out!

Saturday, July 02, 2011

And I'm falling

© Jessie Kirk Photography 

I thought I was doing so well. I wrote posts about why my son's cerebral palsy is awesome. I celebrated his milestones. I even very nearly forgot to compare him to his twin brother.

Then a week like this one happens, and I realize — once again — that I still haven't really accepted Malachi's disability. I just was operating under the baseless assumption that it will be mild enough to not significantly impact his life.

This week started with their first birthday. A day that, by all rights, should have come much later in the year.

Then on Tuesday, we starved Malachi until we could feed him barium in a scary room with a video x-ray machine. This test told us that his food has to be the consistency of honey before he can swallow it without it leaking into his airway. The feeding specialist tells us this is a condition that will get worse over time, not better, because his neck will elongate and make it harder for him to coordinate those muscles.

It's impossible for me to imagine a 5-year-old being unable to drink juice. Correction: It's impossible for me to imagine a walking, talking, relatively independent 5-year-old who is unable to drink juice.

The next morning, desperate for good news, I did a really stupid thing. I asked our physical therapist whether he thought we could rule out wheelchairs yet. He was very diplomatic, but the short answer was no.

I had thought that Malachi was doing well, all things considered. The therapists always seem surprised at the progress he's making. He is manipulating objects with his hands much better, he is just beginning to prop sit and stand at tables for a few seconds by himself. He curls his body on occasion instead of extending. He is getting his legs higher and higher in the air. All of these things can only improve with time and by next year, certainly he will have mastered them, right?

What the therapist alluded to, in his very kind manner, was that Malachi might not have the stamina to walk for very long. I had been so focused on the mechanics of walking that I hadn't considered at all the idea that it might be simply too much work for him to fight his body all the time.

My rose-colored glasses came off. I saw a boy who often sits like a lump on a log while his brother almost constantly wiggles, squirms, kicks and shouts. I saw a boy who prefers to lay — limp and slack-jawed — in the arms of an adult instead of playing with toys. I saw a boy who continues to simply scream during tummy time even though I know he knows how to roll over.

But I could still hear the stories from other mothers ringing in my ears:
"Our therapist thought he would never walk because his muscles were so tight,"
"Our son is 1 1/2 and doing so well we've cut back on therapy,"
and my own personal favorite: "Now he can run almost as fast as his brother."

Run. Almost as fast. As his brother.

With those assurances to myself, we drove to yet another neurodevelopmental center to get an evaluation for a new therapy. There, the PT room had a couple other groupings of babies, therapists and parents. I actually liked not having a private room like we always do. It was great to see other babies also getting treatment as it made me feel less like I was the only person in the world having to go through this.

But after a while I realized that those babies were what mild CP looked like and that was not what Malachi looked like. This baby leaned a little to the left when he sat by himself on the floor, but he was sitting by himself on the floor. And that baby couldn't quite turn a corner while creeping along a table, but he was creeping along a table. Meanwhile, Malachi drooped in his therapist's arms like a spent wind-up doll.

I drove home depressed and wondering how I had found my way back to shattered expectations. I was doing so well, I thought. I had accepted this, hadn't I?

No. I hadn't. I had only fooled myself into thinking his CP would be quirky, not life-threatening, like the x-ray showed, or significantly impairing, as having a wheelchair would be. Thinking it's not going to be that bad isn't the same thing as moving on from accepting that it's going to be that bad.

Just as if the universe wanted to drive home that point with a battering ram, the next day I unexpectedly found myself in the house of a woman with identical twin boys about the same developmental age as mine. After months of carefully avoiding such encounters, I was faced with watching two adorable boys sitting and rolling and crawling all over each other, just like mine were supposed to have been.

I feel like I keep getting kicked down stairs. I reach a landing, cry about how far I've fallen and how much my bruises hurt, but then I get up again, look around and bravely say: "Well, it's not that dark here, and look! There's so many more stairs down there! At least I didn't fall that far." And just as I bend over to stencil in Home Sweet Home on my lovely not-so-dark stair, someone kicks me again.

And I'm falling.

I think what I'm supposed to do is ignore my need to own that stair, to stencil in Home Sweet Home. But then what? Do I just sit there on my cold, dark, gray stair, alone and empty? Or perhaps I'm supposed to find my way off that staircase, out into the nothingness beyond?

Well, I don't know how to get off and I don't know what's out there if I do. I can't help but feeling there are just more staircases.

But what I can say is that I spend a lot less time crying at each landing before I pick myself up and look around.

That's got to count for something.


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