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?