Monday, December 04, 2006

NaNo and Knitting Needles


I wrote my 50,000 words! Huzzah! I'm actually on the last scene of my novel, and plan to finish tonight or tomorrow. What an exhilarating experience! I'm more of a short story girl, so I thought, but this was really very liberating. I can't wait to go to the Writer's Block and brag, as I am wont to do. The best part, though, is that I hooked up with other writer friends, inside AND outside of my area. Luke is relieved, I think. He no longer bears the burden of being my sole conversational companion. I think he could hug all of my new friends, and thank them fervently for taking me off of his hands. Gifts for all. Some of these people I feel like I have known my whole life. Who knows, maybe I have.

Niko is doing very well. He can point, now, and will grab you by the hand and lead you to where it is that he wants to go. He can also identify stars. He'll point at them on cups, fabric, my necklaces, his chicken nuggets. "Ah ah...ah ahhhhhh," he'll say meaningfully. Yes. Stars. I'm very pleased that my own obsessions have become his own! The preschool fight still continues, naturally, but all will be accomplished by sheer force of will.

I opened the mailbox the other day, and there was a fabulous scarf that Rachel had knitted! She had tried to teach me how to knit earlier, per my request, but it aggravated me and gave me headaches. "Freakin' relaxing!" I would snarl, stabbing my needles through my yarn with a ferocity that I'm sure could have been alarming. Anyway, knitting is not my thing, apparently, but Rachel took that ravaged yarn and made something beautiful out of it. That's one of her many talents in life, and I've been wearing it ever since. She also hooked Niko up with a Cookie Monster CD, and he is a very happy little boy. And I DO have a short story where my main character kills somebody with a knitting needle. I wrote it years ago, and only just know understand why he may have felt that tendency. ;)

Luke and I have finally become real adults by buying our first couch. It's black leather, and niiiiiiiiice. We also bought an armoire to hide the TV and DVD's in. We can lock it, keeping it safe from Niko's busy, DVD/CD scratching hands and teeth. The movers brought the couch up the stairs, said it looked difficult to get through the door, and promptly left it lying in the doorway, blocking entrance to the apartment. I just stood there with Niko on my hip, thinking, "You have GOT to be kidding!" Luke and I tried to get it inside for two and half hours that night, to no avail. Darn movers were right, it was hard! But harder for a guy and a girl trying to dodge a little boy who wanted to be constantly underfoot. We threw blankets over it, left it outside for the night, and shook our fists at those blasted shirkers! "How do they sleep at night?" Luke's mom asked. "Morons," my dad said, charmingly. The next day Luke brought Boyfriend Brad, his awesome co-worker, over on their lunchbreak. They used advanced math and careful deductions to figure out that they needed to move the couch back down the stairs, flip it, bring it up, and by applying the proper leverage, etc etc etc. Being married to a genius is still mindboggling! End result: I'm sitting on our fabulous couch typing on the computer, instead of lying on the floor like a child! Brad said that he and Luke should start their own Smart Guyz moving company. "Our logo," he said, hands on his hips in indignation, "shall be 'We Will Not Leave Your Furniture Outside Of Your House In This Treacherous City. Especially If You Are A Woman With A Baby On Your Hip." Succint, but I'd hire them.

I'm mixing CDs for my friends. One of my joys in life! And I'm listening to Christmas music as I do so. Hand me a coke, and I could die happy.

Monday, October 23, 2006

Wonder of Wonders! Miracles of Miracles!

I can't believe it happened! The biggest, craziest, most insane statistical fluke that could ever happened has occurred! I am besides myself!
I received a phone call from my mother last night. We're from a small town, and usually identify ourselves by our County because at least maybe somebody has heard of THAT. People in our own state don't recognize the name of our teeny, tiny little towns! Well, while Mom was at work, she started talking to somebody who lives just ten miles away from where I grew up, and this person has a child a year younger than Niko with Williams! My mother, bless her heart, flew over to her desk and came back with a picture of Niko. "My grandson has Williams!" she said. The girl was shocked. Mom was shocked. I was shocked! Just think! This obscure little syndrome that nobody has ever heard of...has struck twice in the same area! I'm thrilled. I hope we have a chance to hook up at some point and talk about some of the things that our fabulous kids are going through. Does her child have heart problems? Hypercalcemia? She and my mother already established her child's pointy teeth and tendency to bite. I called Mom up this morning and asked her to suggest what we call the Anti-Bite necklace. It's a thick cord that Niko wears around his neck with a teething toy on it like a pendant. That way he always has something to chew...besides the tender flesh of others. This is cloud nine, people. This gives me much hope.

Friday, October 13, 2006

Murphy's Law

Well, we moved in a flurry of frenzied activity in July. And after living in FOUR hotels and THREE apartments, we have finally committed, at least for ten months, to the tiny, ancient little apartment that we're living in now. Our dishes don't fit in the narrow cupboards. The first time I did laundry the dryer scorched holes in our clothes. The toilet automatically flushes itself about once an hour...very disconcerting. But we're here, and I think we'll be happy, and Luke loves his new, mysterious job. He comes home just beaming. Niko and I...not so much. We're still traversing through towers of half-packed boxes, trying in vain to find things like my address book, Niko's toys...our telephone. But we're making headway every day, and this Sunday we'll go to our new church for the first time and hopefully hook in with some buddies. It's killing Niko not to have our friends fawn all over him. He runs up to every effeminate guy he sees, thinking it's Jason, but alas! He's a lone boy with nobody but Mommy and Daddy for company, and even three year olds know that's not cool! I'm trying desperately to get him into a hospital (losing weight, gagging on familiar foods, scratching himself bloody) but it's not working yet. I'm also girding up my loins to start the Preschool Crusade again, but I don't think I'm mentally strong enough yet! The good news is that I signed up for a creative writing course, which I'm thrilled about. I've been doing quite a bit of writing lately, and it feels great. I also signed up for NaNoWriMo...that's National Novel Writing Month, for those of you sane enough not to know what it is. You know me and a challenge. 50,000 words in a month? Heck ya!

Saturday, August 12, 2006

We're outta here!

Hey! We moved! Once Luke got the offer, we took off incredibly fast. Now we're in a new place, getting settled in. We're having a fabulous time thus far! Though I can tell Niko misses his old friends. Especially Marilyn and Jason. He runs to everybody that looks even remotely like them, and holds out his arms to be picked up. He has absolutely no fear of strangers. He takes the hands of anybody close enough to grab. Which is okay, I think. Almost everybody seems happy to have a smiley little boy trying to hug them. But of course I keep an extremely close eye on him. You can't work at some of the places that I have and not suspect the worst in people.

Ode to the Hospital

June 1

How time flies. When I was a kid, June meant EVERYTHING. The beginning of summer, the end of school, long days playing out in the yard. Now I'm like, "Oh, is it June?" Waiting for Niko's bus again. This is the way to do it, with my trusty journal by my side! Catch up and enjoy being outside at the same time. Luke applied for a job in a different city, and chances look pretty good that he'll get it. Today I went to the hospital to pick up Niko's meds, and I kind of took a look around. I thought, "Hmmm, one of these days, one of these trips might be my last." The murals on the walls and the animal statues...they're so familiar! This hospital is just as much a part of Niko's life as church, or his developmental school, or the playground. When you anticipate your child's life experiences, you don't usually think of hospital walls, but sometimes that's the way it is. These people have made a big difference in our lives. You just can't forget that.

Nikolai on the Bus

May 30

I'm sitting on our steep stone steps in the sun. The best part, though, is that I'm our here waiting for Niko to come home ON THE BUS. I drove him in and out for about a week. Then one day I left my car at his school and rode home on the bus with him. He held onto me with both hands and screamed for about ten minutes. That night a neighbor drove me back to pick up my car. The next day we did it again. He held on with one hand and screamed for about two minutes. Next time, my Dad was here. I hid and watched, and Dad rode with Niko. We did that a few more times, and then we both hid and watched the teachers put Niko on the bus alone. (Well, except for Cookie Monster, of course!) As soon as the bus took off, Dad and I zipped home in the car and greeted Niko at his triumphant return! Now Niko does it all by himself without any problems, and I'm happy and proud of him. It gives me 40 more minutes that I'm not driving him in and out to his school, which agreed to keep him until the end of the summer. What a relief.

Foppish Cocktail Parties

May 10

Niko's third birthday party went well. The cake was, of course, a marvelously designed masterpiece. Luke's a natural. Preppy clothes were given to us by family, fun things from our friends. Niko pinwheeled around the room like a giddy, slightly drunken host at a foppish cocktail party. He is a very loved little boy. Pinwheel all you like, son.

Preschool is another matter. After multiple scheduled and rescheduled appointments, we finally found a school. (Most schools felt they weren't a good fit for Niko.) His first day at his new school, he had a complete meltdown and screamed for two hours. The teacher called and asked me to come pick up my son, and that she didn't think this school was right for him. I'm at wit's end.

Monday, April 17, 2006

The Note Pinned to my Son's Back

Remember in kindergarten when the teacher would pin notes to your back so your parents would be sure to get them? This poem was inspired by a walk around the lake with Marilyn.

The Note Pinned To My Son’s Back

In case of emergency, please take me with you. I am almost two years old. I can’t have calcium. The vein on my right arm looks like a great one, but really it’s a roller. Please inform the phlebotomist.

I love my Cookie Monster. I like to lay on him and make him laugh. I like to bite his fur off. I like to shake him and knock his eyes against my forehead. I like to have my arms around him when I sleep.

I still put things in my mouth. I like to lick noses. When I’m angry, sing David Bowie songs to me and dance a little bit. Maybe I will laugh.

I need five doses of medicine a day. I will brush my own teeth. I love things that spin. I always keep my eyes open during prayer. I can clap my hands. I can snort. I think that’s how people communicate.

I can crawl. I wear corrective booties to keep my bones aligned. I can’t talk. I can’t walk. I can’t run.

So in case of emergency, please take me with you.

Ghosts of the Past and Present

Niko and I went home to see the family for a few weeks. I saw people that I haven't seen in years, some who read this blog (hi, Em and Sue!) and others that didn't know anything was up with my son, or that I had a son, or even that I was married. It's always so strange to go home, and see the places that I grew up. I have changed so much since then! I see the old back trails where I used to ride my bike, or the Coal Haul Road where my inseparable friend, '80, and I used to walk and talk. She died a few years ago, quite suddenly, and it always especially hurts to see the things that remind me of her, which is pretty much everything. I thought of all the jokes that nobody else would ever get, because they were between '80 and I. Has it ever occurred to you that when you keep a joke between just two people, when one of them leaves, that hilarious and witty thing that you used to giggle about just decays into a rotted powder. It's never funny again. Much better to have a third person in on it, so that there will be somebody who can keep it alive with you. Thank goodness Feathers was in on so many...they still glitter whenever I talk to him.

Anyway, time for a little Niko progress report! He is doing really, really well, maybe better than I ever thought I'd see. He'll be three soon, and transfer out of his birth to three program into preschool. It's a challenge finding one that works, really. I find that I have to fight for every little thing. I see the risk of a school taking a child with such a extensive medical history, but he is a little boy and deserves to be accepted and taught just like everybody else. We put the new pattibobs (shoe inserts) into his shoes, and his left leg stopped turning out almost immediately. I think it will really help him. He's very vocal! No words, yet, but definite growls, buzzes, sounds for "yes", etc. Even without words, he manages to make most of his wishes known. His meds are down to two 2ml doses of propranol a day, and 1.8 ml of Ferrus Sulfate. No Zantac! He's been off of that for two or three months now. He drinks three bottles of cow's milk a day, and we're working on Sippy Cups. He'll take a quick sip or two now, instead of rejecting them immediately. He still prefers purees for dinner, but will eat off of our plates. He loves to play on the piano, carefully with only one finger instead of banging with his hands like most kids. He can work an accordian. He knows that if he hands us a flute, recorder, or a harmonica, something magical will happen, but he won't blow on them himself. (I finally tossed the kazoos. Who honestly wants to be handed a kazoo a million times a day?!) Niko's getting really tall, much taller than the average William's kid. Ha ha! Those are MY genes coming into play, I think. He's still very affectionate. He still sleeps with his arm around Cookie. He's (mostly) stopped biting people. He is pulling his "I'm in charge here!" Tsar Nikolai persona more and more often. That always makes me smile.

Thursday, March 23, 2006

All's Well With the World

You know those days when all is well with the world? Well, today is one of those days. Niko turns three soon, so we're doing that exhausting search for the right preschool. I'm not one of those die-hards that think if he doesn't get in the right preschool, that will screw up his chance for elementary, middle school, high school, and college. But I don't want the teachers to hang from the chandelier and set themselves on fire, as teachers are wont to do, so I am told. So we're looking. Appointments and phone calls and emails...blah. But today. Ah, today, I blew all of that off. I gave myself five phone calls to make, and when that was done, I bundled up my giggling little boy and we had a grand morning of it. I dressed up, and Niko looked debonair. We ran errands, rode in carts, touched all the soft and slightly crispy fabrics in the craft store. I bought jewelry making supplies and a yard and a half of beautiful black and white fabric for a skirt. Everything was funny. Every move I made was fascinating, every expression he made was adorable, every song was the best one ever sung. I lifted him into the car, snuggled him, and told him that his company was a pleasure. I called my parents to tell them what a great day it was. Niko sat in his high chair, giggling as I hemmed my new skirt, and looked properly appreciative (so I thought) when I showed it off. Marilyn and Jason came over to watch America's Next Top Model and we laughed and booed at the TV and begged Nikolai not to turn it off. Then we all sang to him, prayed, and put him to bed. Tomorrow, of course, it's back to the grind. Wake up, go to Niko's school. Purchase his new shoe inserts...he's out of the corrective boots but still needs a little extra help for alignment.` Snacks are always a pain...I hold up a chart with pictures, and he takes the one of the snack he wants, hands it to me, and then I hand him the goldfish cracker, or the piece of toast, or the bottle. Both physical therapy and speech therapy. But tomorrow night, I'll go for a good, three mile run. I'll listen to Russian pop (great beat) and heavy guitar driven alternative, and I will run run run until everything is great again, and I'll have this wonderful feeling, that all's well with the world, just like how I feel today.

Monday, March 13, 2006


January 27, 2006

Niko's screaming bloody murder in his crib. He has reason to, because we had a really scary experience today. While at his school, during snack time, I was fixing Niko's milk (real milk!)when his therapist called my name. I looked, and Niko's face was really red, and his throat was moving, but there was absolutely no sound. It was like watching somebody throw a fit in mute, bizarre and terrifying. I ran over to him, pulled him out of his chair and held him around his stomach, legs dangling. He threw up, and started to cry, so Heather and I stripped him down and I cuddled him while he put his head on my shoulder and just sobbed. Poor little scared Niko...we dressed him in some clothes donated to the school and cuddled until he perked up and was interested in his surroundings again. He was choking on a goldfish cracker, same cracker that he loves and eats every day. Part of me wants to throw my hands up in the air because everything seems like you take two steps forward and then one or two or three steps back. But we have worked too long, too hard, and with such love that I refuse to lose him, especially to something as lame as choking. No, this boy will have a long, happy, and fulfilling life, filled with friendly faces, music, and so much love that he can just bask in it, even if I have to provide it by sheer force of will. And that's simply the way it's going to be.

Diet Coke and Wine

So the Mom's group is going well. Because we started it, it's completely tailored to us and our needs. Which was obvious when a member brought a bottle of wine to the last meeting. I laughed along with everybody else when she flamboyantly uncorked it, but at the same time I completely understand. Sometimes things get very dark. Sometimes the conversations are very grim. So you can either toast with your wine and laugh, or gulp it down and hold out your glass for more. I do the same thing with my Diet Coke. I think being the parent of a special needs child is a lot like being bipolar...the ups are very, very up, and the lows are lower than you could ever imagine possible. Prepare for either.

Yes! Good news on Nikolai-my-little-guy! His labs looked good, and his heart looked even better. The aorta, although still small, is growing. The two pulmonary obstructions have lessened, and there is absolutely no more thickening of the left ventricle. She decreased the propranolol dosage by three cc's a day, and we're all happy!

Cement Steps

January 8, 2006

Lying in bed in that oh-so-familiar stage...I'm tired and know that I should go to sleep,but at the same time I want to stay up. I want to read or write or play Radiata Stories or look at a magazine. Something quiet while this house is still mine. What if I miss something? When I go to sleep, it just brings me screamingly close to that horrible moment of waking up to Niko's cries or the alarm. Worst part of the day.

A week ago I turned my ankle while walking down our steep, cement steps. I was carrying Niko, who still can't climb stairs, and my ankle rolled. I grabbed the handrail with my free hand, totally slamming into it with that arm. The area from my wrist to my elbow just throbbed. Niko was completely okay, and in fact, giggled pretty wildly. He keeps everything in perspective. My ankle was sore for a few days, felt better, and is aching again. Running, maybe? It keeps popping.

So tomorrow, after running and Niko's school, we got to the hospital to pick up meds, get labs, and do an unsedated heart echo. I'm dreading the long, painful day, with a very sleepy Niko being restrained and echoed and pricked, but I'm hoping there's more good news. Last time it was all wonderful, and a girl could get used to hearing happy things about her son.


January 6, 2006

So last night I signed up for a mini-triathlon. Now I'm committed! It's a 5K run, quarter mile swim and 12 mile bike ride. I've been running three times a week, and Luke fixing the MP3 player has made a WORLD of difference. Last night I bounded along to Modest Mouse singing, "We'll all float on okay." Finally, I feel like I'm out there running toward something instead of running away from...whatever it is. It's a good feeling.

Drink cow's milk, boy!

January 4, 2006

Niko looks like he's been stretched on a taffy machine. Grown two inches since September, and he's currently in his long, lean phase. He's been giving things for help (handing us jars to open, toys that he wants to work) and the doctors said the thing that I almost thought I'd never hear: "Put that boy on cow's milk!" We'll check his labs in a week or two, and see how his body handles it.

Sick Moms = Happy Nikos

October 23, 2005

Do you know what happens when you run yourself insanely ragged and you don't get enough sleep? You get sick. At inopportune times. So Luke left on Thursday to fly home for the deer hunt. I got a sore throat and stuffy head that night, really felt it on Friday, absolutely considered myself dead on Saturday, started to reanimate on Sunday and by Monday I was almost all better, just in time to pick Luke up at the airport. Which wouldn't be too bad, this being sick, except that I HAD NIKO. Let me just say that I'm very proud of my ability to clack all of my dead bones together and force myself to dress Niko, feed with Niko and brush his teeth and read him stories and calm his crying in the night. He's been waking up three or four times a night every night lately. My eyes feel like shattered glass all of the time.

So apparently I'm starting (or co-starting) a support group for Mom's with disabled kids. Our first meeting is Tuesday, at my house. We'll see how it goes. Do I really have the time for this? But then, what else takes priority over my son?