Wednesday, August 31, 2005

Time Out For Me

Journal Entry May 23, 2005

I wrote a poem two days ago. I worked on the blog. I found my old "Scent of Gravity" notes and want to turn it into a short story, maybe possibly expand it later. I am on freakin' fire!

The adrenaline, the twitchiness, the crabbiness until I'm a caffeine rush at 3:00 AM. I'd flippin' forgot this feeling!

Luke and Nikolai are probably both snoozing away at Ensign Ranch. I, myself, had a fabulous night, despite being perturbed at being stranded without a car on my ONE NIGHT A YEAR!!! Grrrrr....sigh. Anyway, Marilyn picked me up and we watched "Hedwig and the Angry Inch". The she fell asleep on the couch and Jason dropped me off at home. I've been roaming around for hours now, and it is so very nice to be alone.

Second Birthday

Journal Entry, May 2, 2005

Niko's birthday was not too long ago...two years old! The best part was that Mom and Dad came up. They could only stay two days but they were so fun and so helpful. Mom swept the floor and Dad mopped, and they both changed and spoiled Niko, and thereby spoiled me.

The party was fun. All of our friends came. They brought Cookies (for the Cookie Monster party) and Niko, of course, reveled in the attention. A room full of people who genuinely love my son. Luke took a video and Jason held Niko and helped him blow out the candles on the cake...who's the parent here, anyway?! I thought it was pretty funny. Luke made the Cookie Monster cake, and the first thing Niko did was pull off and suck on one of the googly eyes. He sat in his high chair and ate fistfuls of cake. I just kind of stood back and watched him, remembering his birthday last year and how he choked immediately on the cake, throwing it up. Mom put her arm around me and looked at me, and I could tell that she remembered the same thing. After all, she helped bathe him and change him into clean clothes after the last cake "fiasco". We looked back at Niko and both started to laugh. Really, things can't get too much better than this.

In Need of Caffeine

Journal Entry, April 23, 2005

Deeeeeeeeear Self,

I'm sure it has happened, but I don't recall being all anxious for Niko to wake up before. Ah, nap, glorious nap! The best part of my day! But today...oh, the restlessness. I call people and I don't want to talk to them. My feet are twitchy. My head has pressure building up inside it...I need a drink I need a drink I need a drink! Caffeine withdrawal impending....Ooooh! Aaaah! Eeeee! As soon as The Bean awakes, I'll cuddle him in my arms and then slingshot him into the carseat. Off! Off we'll go into the wide blue yonder, in search of mental/physical substinance and party supplies for Niko's Cookie Monster birthday! How fun! Some of our favorite people all together, celebrating little Niko-freako!

Come on, WAKE UP, BABY, so Mama can get her Diet Coke fix!!!

The Stupid Question

Journal Entry February 17, 2005

Yesterday Niko had another heart echo. They really wanted to take a good look, so they sedated him with an oral anesthetic, and he was out for about half an hour. No change from his last echo in December, which could be considered good OR bad. Let's should I consider it? Let's try it this way. I choose GOOD!!! Since he is bigger (24 pounds 6 oz) the cardiologist upped his propranolol dose to 3ML three times a day instead of 2ML three times a day. Ferrous sulfate and zantac still the same. Last week he went two days without zantac, and started throwing up again. I guess it's good to know that the medicine is working. He's developing quite the personality, my little Niko-freak. He laughs all of the time now. He is also the fastest crawler known to mankind...complete strangers will remark on it. Come to think of it, complete strangers remark on him all of the time. Good things, bad things. How cute he is, how a child his age should be walking. How wonderful to see such a friendly little boy, how a child his age should not be drinking formula. "Yes, yes," I think. "I'll just give him some milk to satisfy your ego, you curious stranger. It will just KILL HIM." Usually, I am very polite. Sometimes, however, I am not.

The worst time was about a year or so ago. Niko and I were in line at Costco, and Niko was sitting in the cart smiling and shaking his head back and forth, probably to make his curls bounce. This woman standing next to me turns and says, "Is your child retarded?"


About a year ago, if you remember, Self, we were just coming out of kidney failure. Williams was pretty new to us. I was overwhelmed all of the time. I turned to that woman, and I just told her what she had wanted to know. I told her about having a new baby, who was born sick, and how long it was before I could hold him. We were living away from our family, and then we took our four month old and moved to Finland for a semester abroad. I told her how my husband spent all day in school and how I was in a concrete, unfurnished apartment sitting on a sleeping bag with a baby who screamed all day and all night, and clawed at his face until he bled because something was wrong and we didn't know what. I told her that as soon as we hit America we took him to a doctor where they did test after test after test, and finally it was determined that his severe heart problems, among other things, pointed toward a strange thing called WILLIAMS SYNDROME. And how after even more testing, it was determined that this unusual syndrome was, indeed what my son had. I mentioned that Williams had masses of things associated with it, like the famous "cocktail personality", the hypercalcemia, the facial features, the cognition, the musical and language aspect...and yes, I said, there is some retardation that usually occurs, of varying severity. So, yes, there is that possibilty. Thank you very much for bringing it up in such a sensitive manner in such an appropriate place. Also, I said, you're very lucky that you mentioned such a thing to me, because I am an unusually nice person. Anybody else would have gotten very, very offended and angry with such a stupid, stupid question. My voice was very calm, but I'm sure my eyes were on fire. I could have burned her to the ground with my eyes.


She didn't say anything, just moved her cart to a line a few lanes away. I stood there for a second, then smiled at Niko who was grinning and still shaking his curls.


Tuesday, August 30, 2005

Boot Casting and Wondertoonel

Journal Entry January 31, 2005

Today at Niko's school, he had his feet cast for his new orthopedic corrective boots. It scared him, of course. Being restrained always does, since I think he associates it with those blasted blood tests where they miss his veins and stab him again and again and again and again. Anyway, he was scared, but I brought Cookie Monster to comfort him, and freshly baked chocolate chip cookies to stuff in his mouth whenever he opened it to yell. All in all, we survived the half-hour relatively unscathed, although we cut classes short and ran screaming from the building.

Marilyn, Jason, Luke, Niko and I went to the museum the other day to see Mark Ryden's "Wondertoonel" exhibit. How totally wonderful and totally bizarre. Niko has sprouted a mawful of sharklike teeth and can now eat graham crackers...what a thrill! I wrote a poem sparked by a conversation that Marilyn and I had as we walked around Green Lake. It's called, "The note pinned to my son's back." I like it.

I'm crazy tired. I want to lie on the carpet and sleep. Niko, of course, is perky. Which I, of course, should be grateful for.

The Tsunami Part II

Journal Entry Wednesday, December 31, 2004 Later That Night

Death count: 76,000. Many places have stopped counting. I turned off the news. No more hugging couples being swept away while their friends reach out to them. I cleaned some, played with Niko some, assembled a few toys from Nikolai's successful haul from his grandparents. I cuddled him. I read him a story. I gave him a bottle, sang a lousy rendition of "Good night, sweet heart" and tucked him into bed with Tickle-Me-Cookie-Monster, his best friend and confidante. There's a very special relationship between boy and monster. I hope he goes right to sleep and stays there, my good little boy.

The Tsunami

Journal Entry Wednesday, December 30, 2004

There was a horrible tsunami that hit Sri Lanka and that area on...was it Sunday night? I believe it was. Right now the death toll is 63,000. I cannot fathom such a large number. Footage of the water coming, people being washed away...they show a hand limp under tons of broken concrete, bodies being pushed into a mass grave by a bulldozer. They think malaria and waterborne diseases will kill as many as the water did. Self, I am sick. My soul hurts. I have nightmares of running through the streets, Niko torn from my arms by water. I think about it and can barely function. And that happened to so many people! One woman lost her four children and her husband. She said she had her eight month old ripped out of her arms, and I almost couldn't bear it. They had a little boy, maybe two or so, found and taken to the hospital by two American tourists. They gave him a nebulizer with the exact same purple dinosaur facial mask that Niko had in the hospital two weeks ago, and that's what got Luke.

Monday, August 15, 2005


Journal Entry Monday, December 15, 2004

Yesterday, right after I wrote you in bitterness and stomped around some more, Marilyn came. She had taken the day off to study, but spent three hours with us instead, holding Niko. I said, "Where's your gown, mask, and gloves, girl? Aren't you afraid of the mystery disease that Niko has?" She just kissed him and laughed, and honestly, that's all it took to break down this armor of anger and fear that I had built up. After she left, I managed to talk to a doctor who actually knew what was going on...pneumonia, RSV AND bronchialitis. I guess one kind of sets the other off, or something. Later that night, Luke came after work, and Marilyn and Jason visited, pizza in hand. Luke took Niko by the hands and helped him walk around the hospital room, looking so proud of himself with his binky and his little diapered bum showing through the back of his hospital gown. They cheered my handmade Christmas cards (I had lots of time those past few days!) and we had pizza and Cokes and made a party of it, right there in that hated isolation room. Niko loved it.

Today we got sprung in the afternoon. I dressed Niko's Tickle Me Cookie Monster up in a diaper, some bandages, and Niko's purple dinosaur nebulizer and stuck him in Niko's hospital bed and took a picture. Then we went home. It's Luke's and my anniversary tonight, and thus far we've always done something spectacular. Tonight we had a great meal of homemade chicken soup brought over by my friend, Andrea, in our ward, and kicked back with a movie. Just being free seemed to be spectacular enough.

Angry In Isolation

Journal Entry Tuesday, December 14, 2004

I can't get a straight answer from anybody. So many nurses parade in and says that he has pneumonia. One says that he has RSV. One says that he has bronchialitis. What I DO know is that we have been in this hospital room since Sunday night, and that we have been put on isolation. No hospital staff may enter the room without masks, gloves, and gowns. Nobody stays long. Nobody tells me what's going on! One nurse tried to double dose Niko with medicine. I said, "Is that his propranolol?" She looked annoyed and said yes. I told her that he had been given propranolol by another nurse less than 15 minutes before. She whitened a little bit, and it did nothing to temper my anger at being left in the dark. I have been told not to socialize with other parents, please. Not to go into the lobby. Not to be around the food. When they bring Niko's dinners, they put the trays outside the door on the floor. THIS is a very bad feeling.


Journal Entry Sunday, December 12, 2004

Do you see this crazy scrawl? This is a sign of fatigue. It's 2:00 in the morning, and Niko and I are at Children's Hospital. We're in the emergency room for coughing and wheezing...what looks like pneumonia. Of course, with pneumonia, he has to work harder to breathe. Of course, working harder to breathe strains his heart. Or course, the medicine they give him so that he can breathe (and thereby not strain his heart) causes his heart to race, thereby straining his heart. So we're here, we've been here since 9:00, and, two treatments and some oxygen later, I find that we have another treatment to go and then he'll be admitted. So no going home tonight, we'll wait who knows how long while they get everything set up and then more treatments tomorrow. Honestly, Self, I'm exhausted. I was up all night with Niko last night, and of course all day today, and while he napped I ran to the pharmacy and got his medicine and then finally started lunch which is, of course, when poor Niko coughed himself awake. But now he lies here, still sick, but breathing quietly, and I watch his unsteady heartbeat on the monitor and notice his pulse throbbing in his neck, and I think that I've been here before. SO MANY TIMES BEFORE. But I know without a doubt that it's okay to complain sometimes, as long as you make the right decisions.

Niko's New Class

Journal Entry Wednesday, September 22

I'm resentful lately of doling out parcels of time to people that I don't want to see, friendships that I don't necessarily want to cultivate. I think of that Smiths song, "In my life, why do I give valuable time to people I'd much rather kick in the eye?" I value time alone, I treasure it, I guard it jealously, because it is in such short supply.

That said, Niko started his 18 month to 3 years classes at his new school. He really loves them: 2 1/2 hours of play time, gym time, song time, snack time, and more play time. While there, he also does two hours a week of physical therapy, half and hour of eating therapy, and half an hour of speech therapy. He's really doing well, and has his first two teeth in (on top) and is crawling now! He pulls himself to stand on furniture, and especially on me. I'm really proud of him, my little Niko-freak. His Classes are Mondays, Wednesdays, and Fridays, and I have to admit that it's hard for me to grit my teeth and go constantly. Sometimes I feel guilty that some women seem to enjoy staying home, love playdates and keeping a clean house, and I hate it so badly. But hate it or not, I go, because it's the right thing to do. Because it's helping my son. Because somehow I believe that it will make things better.

Sick As A Dog

Journal Entry Wednesday, September 15, 2004

I have been sick as a dog for the last two days. Did I say sick as a dog? I meant SICK AS A DOG. Saturday and Sunday I had strange spots all over my body, then they went away. Monday I woke up with this killer headache that only increased in intensity (how can this be?!) Nowhere on the pillow (or earth) was comfortable. Different positions caused my body to hurt in different ways. Unfortunately (because I felt so terribly) and fortunately (because I felt so terribly) Dad had come up and took Niko so I didn't have to worry. Yesterday was worse! Not the nausea, but the sheer physical pain- I felt like I had fallen from a seven story window and landed on my back. Everything felt broken...I got up a couple of times and each step completely jarred my back and shoulders. The worst part was not being able to pick up Niko. It's Wednesday and I still don't have the strength to pick him up. But I found happiness today as he lay beside me on the bed, staring wide-eyed at me with his fizzy hair tickling my nose. I have a new appreciation for how he must feel when he's not feeling well.

Brief Summary of Life's Truths

Journal Entry Sunday, August 30, 2004

I have a lot to tell you, Self, but Niko just went to sleep, so shall I. Just a brief summary:

I went in to surgery for the second tumor in the same spot. Also benign, but I'm very vigilant.

Pet and house-sitting for Marilyn. Their dog had a stroke but seemed to recover. ("Not on my watch!" I silently pleaded. Oliver must have been listening.)

I realize that I genuinely believe that there is no learning, fun, or productivity as an adult. You work hard at a bad job until you fall apart, sacrificing for your kids. Very disturbing.

Niko now goes to bed at 11:00! Hooray!