The Results

My house has gone to seed.  The laundry is stacked, we need to go grocery shopping, and there isn't a clean dish in the house.  Luke and I have been tag-teaming the kids as we get Niko's school pictures taken and go to all of Nina's appointments.  I've been waiting all year for NaNoWriMo, and I'm supposed to be about 8,000 words into my novel by now.  I have written 168 words so far.

But we're smiling.

I can honestly say that the last few days have been an ordeal.  Most of the pressure has been because we've had to keep Nina up for the last two days, and that means an exhausted toddler and two very tired and grumpy parents.  Yesterday was her MRI, and today was her EEG.  They flashed lights and tried to induce a seizure so that they could study her brain waves more accurately.  Sweet baby girl didn't seize.  But the nurse told me that I didn't look so good.

"Migraine," I said.  The noise and flashing lights nearly did me in.  Nina waved her starfish hands in the air and thought it was all about having a good time.

The results (for both the MRI and EEG) were normal.  We're going to keep her on seizure meds for two more months and then reassess.  I have meetings tonight and tomorrow, but hopefully after a good night's sleep, I can make a dent in the housework.  My goal is to have it clean by Friday so that the weekend can be all about recuperation.

Last night a girl in our ward brought dinner over.  Not only was it delicious, and saved Luke from cooking (I had a meeting last night, as well) but it made us feel cared for.  I realize that when we moved here three years ago, we went through everything alone.  Now we're supported on all sides, and it makes a world of difference. We realize how lucky we are.  :)

You Guys Are The Best! And My Husband Is A Hero.

It's true.  Thanks for letting me rant and rave.  Thanks for your comments and your telephone calls.  I can't imagine what it would be like to stomp around and yell all by myself.  It would be extraordinarily lonely.

Last night I was laid flat by (surprise, surprise) a migraine!  It was the worst one that I had had in quite a while; in fact, I wondered if I should go to the hospital because it was reminiscent of the pain that I was feeling with the eclampsia back when Nina was born.  My fantastic husband took over.  "Did you take some painkillers?  Okay.  You're not dying, it's just a headache." He told me that he loved me and sent me to bed.  Then he stayed up with Nina until midnight.  This is the man that is asleep by ten every evening because he gets up at 5:00, and sometimes earlier.  Now he's shambling around all zombie-like, but he's still smiling.  Marrying him was the best decision that I ever made, no doubt.

So we leave in half an hour for the MRI.  Wish us luck!  And when we get back...we get to do it again!  More sleep deprivation for tomorrow's EEG, hooray!  :P

Oh, You Are KIDDING Me!

I decided to get my hair cut on Saturday.  Not only did he cut it too short and choppy, but "choppy" was the word of the day because l-l-l-look at the wound right above my eye!  A tiny thing, sure, but I bled like a demon and there was a second there where I wondered if I had lost my eye.  Sudden, shocking pain in the vicinity of my eye and then a torrent of blood tend to make a woman get a little panicky.  "Oh, look at me, my hands are shaking!" the stylist said.  I, still momentarily blinded by my own blood, couldn't see his shaky hands, the poor dear.  He then chivalrously took a dollar off of my bill.  That was swell.  Did I ever mention my tendency to scar?

But wait, there's more.

So today is Nina's MRI.  I have been dreading it for many reasons.  I have been trained to hate hospitals, for one thing, even though Nina is much more calm than Niko when it comes to medical things.  I'm nervous to see what we're going to find out.  Also, I was worried about the logistics.  Nina's appointment was half an hour away, so I needed to leave by 9:15 at the latest.  Niko's bus comes at 8:10, usually, except that the buses have been breaking down left and right lately.  Which is what I assumed happened today, because the bus was ten minutes late.  20 minutes late.  30 minutes late. Finally I call Transportation and say, "My son's bus is 50 minutes late.  Can you tell me where it is?"  She says, "Oh, there's no school today. It's a staff training day." 

WHAT?!  There's no school?  Oh, you are KIDDING me!  There was no note in Niko's backpack, no newsletter.  Nothing.  Nada.  We have already established that the website doesn't work, so there's no information there.  They sent home a lunch schedule, and today was scheduled to have school lunch. So how on EARTH was I to know?  I'm not the only parent that was sideswiped by this information either, but that's a rant for another day.  What am I supposed to do? 

I call Luke in tears.  He says, "Come pick me up."  I shove both kids in the car, drive across the city, pick up my husband who LEAVES WORK, and we head down to Nina's appointment.  I'm ranting and crying and my head is spinning.  Niko gets anxious when he sees that we're in the medical district, so Luke drops Nina and I off at the center while he just drives around town with Niko.  I'm going to get a time estimate and see if they should hit a store or head home and get us later.

But wait, there's more.

I get into the doctor's office, and he looks at Nina.  "She doesn't look tired," he stays.  Tired?  Huh?  Should she?  He says, "What time did she go to bed last night?"  "8:00."  He lets out an exasperated sigh.  "And what time did she get up?"  "6:30."   He's shaking his head at me and looking extremely irritated.  I'm confused and feeling defensive, not to mention stressed.  Finally I say, "Okay, what's going on?" 

Apparently Nina was supposed to be sleep deprived.  Apparently the guy who scheduled the appointment FORGOT to mention this.  I was supposed to keep her up until midnight and get up her up at 5:30 so that she'd be drowsy.  Apparently I had shirked my duty.

"I never received this information," I said.  It is to my credit that I'm not screaming and knocking the computers over.  "This is news to me."

"Well, we'll give her the oral sedative, but if it doesn't work..."

It doesn't work.  She just gets goofy, not tired.  Luke's still driving around town with Niko, because he doesn't want to abandon us if we need to go home. He's supposed to be at work.  Nina's supposed to be getting her MRI.  Niko's supposed to be at school.  I contemplate asking for my own sedative, but wisely abstain.

Did I mention the fact that tired children happen to have more seizures?  I'm terrified of that. They're not trying to induce one; they just want her to sleep so that she'll be still.

So we're scheduled to play this game again tomorrow, only Nina has to be sleep deprived  (which means that I will be, too.  Oh goody!) and at the center at 7:15 AM.  Which means that Luke has to miss work (again!) to get Niko on his bus.  Then he'll hang around the house until I get back with Nina, and he can go to work again.

But wait, there's more.

Wednesday is our EEG and follow-up.  Nina is supposed to be sleep-deprived (oh, hooray!) because this time they're hoping to induce a seizure!  Luke needs to miss work (again again again!) so that he can get Niko on the bus.

I am losing my mind.  I'm going nuts.  I haven't had a full night's sleep in, what, months? and I'm an emotional wreck.  I cry at least three times a day.  My migraines are hitting at least once or twice a week instead of once a month or so.  I'm dying.

Oh, and did I mention that this month is the month that I'm hoping to work on my newest novel?  It's my reward for surviving.  But I am so stressed and distracted that I haven't been able to write a word on it.  Not a word.  I feel like the biggest failure.  If taking care of my kids and writing are what I'm good at, and I'm doing a lousy job at both of them...

You catch my drift.

The good news is that Luke is taking the kids to visit his family this weekend.  I'll go up briefly, but then I'm coming home to have a night by myself.  I'd like to get the house clean and everything beforehand, and have the weekend be all for me. I want to be selfish.  I'm even thinking of booking a massage, my second one ever.  The first one made me cry (me crying?  What a surprise) when she started working on my hands, because I realized how tired my body really is, and how I neglect myself.  Forget being the mother of a special needs child, because ANY mother knows that if you don't take care of yourself, you can't take care of your kids.  But come on.  How many of us can really do it?  If your child needs you, everything else goes right out the window.  The house, the bills, the family, friends...they all come before us, because we love them.  It doesn't mean that we don't love ourselves, too, but when we're split in 20,000 different directions, it's easy to let ourselves go.  I can always get back to me later.

Gah.  I hate to vent here.  At the same time, I was bursting to come and write on this blog, because I need and desire the outlet.  This is perhaps the one place where I don't feel judged, because the people who read it understand that barely-keeping-my-head-above-water feeling.  Most people do, I think, but we're taught not to show it.  Well, forget that.  I recognize that I need the support.  Let's all tread water together.

Also, this playlist makes me really happy.  The first song was "For Fruits Basket", and for anybody unfamiliar, Fruits Basket is just a super charming, happy anime.  Every time that song comes on, both Luke and I smile.

Happy Halloween!

The Report

The official report just came back from the genetics meeting in September.  I knew what it would say, because hey, I was there, but it's still difficult to read.  Yes, Nikolai has Williams, but his current level of functioning is much lower than is typically present in Williams.  We're going to look for this.  We're going to look for that.  Significant intellectual disability. Specific phobia for loud noises, doctors, and medical facilities. Extreme anxiety.  Lordosis, awkward gait, mild facial asymmetry, etc etc etc.

These are the words that I understand.  There are many more that I need to look up.  So Niko has Williams, but even with Williams, something...extra...is wrong.  We knew this, but it doesn't make it any easier.

Then I gave Nina her seizure medication, and she said, "Thank you, Mama."  For some reason it made me laugh.

Gah!  I just throw my hands in the air today!  I surrender.  I have a fantastic husband and two spectacular kids.  It's almost Halloween.  Sure, I'm grossly over scheduled, behind in housework, and being forced to look at the black and white of my son's syndrome overwhelms me.  But it shouldn't.  He isn't his syndrome.  Nina isn't her medication.  Life is fantastic and glorious, and sometimes I get so tunnel-visioned that I miss it.  Not today, though.  :)

Have a good one, everybody.

What a week!

(Nina and I playing with the webcam ten minutes ago.  She's waving her little hand off.)

Wow, is all that I can say!  This week was heavy and emotional for the most part, but it was also full of a lot of joy.  Niko had a green smiley yesterday (hooray!) and my dad came down to visit for a few days.  I haven't seen him for a while, and I had missed him very much.  That was joy.

The bad news is Here and, more recently, Here.  My heart goes out to everybody back home.  My heart goes out to Sophie and everybody affected by her loss.  And that's all of us.  I cried when I found out, because it's everything that we fear as a parent.

We're also starting Nina on seizure medication, and hopefully that will help.  It was difficult for me to accept that, because in my mind, medication means that it will be a life-long problem.  Of course that isn't the case, and the doctor pointed out that we'll reassess in three months after all of the workups come back.  But no matter what happens, I know that we can handle it because we love our children, and we have a lot of support.  And for that, I'd like to thank you.  Sometimes the good wishes seem palpable.

In other news, five agents are currently looking at my novel.  It buoys my spirits.  And November is National Novel Writing Month.  This will be my fourth year participating, and my goal is to write a 50,000 word novel by the end of the month.  This is my reward for trying to live this year to the fullest.  I'm extremely excited!

Also, I have a rather strange poem up Here.  It makes me happy. 

Have a good day, everybody!

I Am Just Not Brave

People mean well.  They say how brave and calm and wonderful my husband and I am.  This makes me feel like a complete charlatan because I am not brave and calm and wonderful.  My husband is truly stalwart, but I'm fragile and nervous and constantly looking over my shoulder.  School is, once again, not going well for Niko.  He had a week of the coveted green smilies, and then went bonkers somehow.  They keep switching aids, and acting surprised when he doesn't respond well to that.  Luke would like to go and observe, but he has to make an appointment with Dr. Jerkenstein before he does.  Luke, who is brave and calm and wonderful, is going to go by himself because I'm certain that I would knock Dr. Jerkenstein to the ground and insist on knowing why he behaves so abominably.  Tell me what kind of example that is.

Niko has been home for nearly an hour, and I can't make myself look inside of his backpack to see how his day went.  I just don't want to see.

Nina and I went to the store today, and we had a good time together.  She like to wear her pretty princess shoes that Ali and Jeff gave her, and she swings a tiny red purse over her shoulder.  Today she brought me my heels and MY red purse, and who was I to disappoint her?  Off we went.  The fact that she imitates me so much is both horrifying and comforting.  I know that I behave a lot better because of it.  You know what mommies do?  They go shopping and smile.  They kiss their children on the head.  They suck it up and look in their little boy's backpack, for crying out loud.  I'll go do that.

Writing is going well!  I just finished a beautiful literary short story, and I'm quite pleased with it.  It's very different from what I usually write, but it has it's own kind of slow magic.  After getting the story down, it's time to polish.  I'm going to submit it to a market at the end of the month.  I talk a little about that HERE.