Wednesday, December 14, 2011

A Christmas Program

It surprises me that it until Alyssa is in the third grade for us to be invited to attend a Christmas program presented by the first, second, third and fourth graders of Alyssa’s school.

Kindergarten year? No Christmas program.

First grade? Nope.

Second grade, new school? Still no program.

I was so disappointed each of those years. I remember my elementary Christmas programs with a sentimental yearning. I want both of my girls to remember getting dressed up, going to school in the cold dark evening, waiting breathlessly for the curtain to open to reveal them along with their friends to those of us in the audience, scanning said audience for the familiar faces of parents and grandparents, sneaking a wave to Mom or Dad just before the music starts.

This year? We got our program.

And it was as wonderfully awful as I’m sure all of mine were. The absolute best part? Alyssa on stage in her Grinch green dress with her red tights and red sweater, grinning at me and Tom and my mom, waving her hand ever so sneakily so we could see that she’d seen us.

The worst part? The fourth grade recorder concert. Oh dear. It was as if they just played Three Blind Mice over and over and over again. But then, my child wasn’t there with her recorder, so I didn’t have anything like adoration to shield my ears from the horror.

But the third grade? They were awesome as they sang “Deck the Hall”, “Frosty the Snow Man” and “Up on the Housetop.” Perhaps the parents of the first/second/fourth graders might not have agreed but truly, in my unbiased opinion, the third graders totally outshined the rest of the grades.

Alyssa had her outfit picked out weeks in advance, lacking only the red cardigan needed to complete the ensemble. We ended up picking it up at Sears for $.41 last Saturday. It was originally $25 so I think we got a good deal.

My mom curled A’s hair with hot rollers and oh, the thrill of it all. O also got in on the action with the hot rollers. Her hair is now long enough all over that you can wrap a roller around it. She was thrilled to be getting beautified along with her sister.

So that was Monday. And it was fun. I have high hopes of Christmas programs in the coming years.

Alas, with all the programming and the traveling for awesome parties and the shopping, the laundry isn’t getting done and those Christmas cards haven’t written themselves no matter how hard I try to get them to.

So tonight? Christmas cards. Tomorrow night? Laundry and more laundry. This weekend? We’re scheduled to spend at least one entire day at home, per Alyssa’s request. What can I possibly get done on such a day? Baking, more laundry? The floors might even get swept/vacuumed. It could happen.

I hope all your holiday festivities are coming along well and that the typical sense of being overwhelmed drives right over you this year.

Tuesday, December 13, 2011

Reflection

I’ve been thinking lately about those months when Olivia was a baby, when I was desperate for answers, when I was doing my own research, reading blogs, googling everything I found from other parents that might explain what was going on with my baby girl.

I first read the name Cri du Chat in the comments section of a popular mommy blog. I googled it and it brought up the 5p- society page.

I read the symptoms and looked at the faces of those kids with the syndrome and my instincts screamed that these symptoms were describing Olivia. But my mommy heart screamed back that she didn’t look like those kids. She had none of the physical features of those.

I apologize in advance if anything I write in this post hurts anyone but I want an honest account of what I felt in those months/years before we got O’s official diagnosis of 5p-. I want to be honest about how I tried to deny my own instincts. See, I’ve written before that when we got her diagnosis, I didn’t mourn because by then, Olivia was over two years old and the diagnosis didn’t change who she was. We already knew she was amazing and knowing she had 5p- didn’t change that.

But if we’d gotten her diagnosis in those early days, before we knew her, before we were already aware of how far she’d come from when she was a screamy, floppy baby? I can’t say I wouldn’t have been sad.

Heck, I was sad and in denial when I first read about Cri du Chat. I was relieved when the first and then the second and even the third doctor insisted there was no way that Olivia had 5p- because she didn’t have the facial features that usually accompany the syndrome. I liked the validation that my child is beautiful in a traditional way, that she looked ‘normal.’ I wanted that more than I care to admit.

I’m ashamed to admit that I said more than once to my mother that I was so glad that Olivia looks ‘normal.’ See, society can be cruel and I know that. And I want to protect my children from that cruelty. I want them to have all the advantages that come with being pretty. I admit that.

But something was obviously wrong with Olivia and even though several doctors agreed with me that she didn’t have the 5p- ‘look’ I knew, in my heart, that she did have it.

It just took a doctor who was willing to look past her beauty, willing to see the frail, sickly child in front of her, to agree to just run the damned test.

And at the time that Dr. S agreed to run the test she said that she’d call me with the results…unless it was something major, then she’d set an appointment so we could meet with her in person to discuss the results.

So when she called two weeks later to schedule an appointment, I was terrified. I think I knew what she was going to tell us. But I worried that there was more. I worried that somehow, I’d be to blame or that they’d want to hospitalize Olivia.

I know, it was totally irrational but I made Tom go with me to that appointment. I needed his moral support and I thought (again, irrationally) that even if the doctor wanted to keep Olivia (so silly!) that he wouldn’t let her. His presence gave me strength. We were providing a united front against whatever the doctor might throw at us.

Of course, on the two hour drive to the hospital, Tom grumped something like, “If she just tells us that this is who Olivia is and that there’s nothing to worry about, I’m going to be annoyed that I had to make this trip.”

I shrugged. I didn’t care if he felt he was wasting his time. I needed him and he was there. That was all that mattered to me at that moment.

Olivia has always been a good traveler and that day it was no different. She felt much better for this appointment than she had for the first one with this doctor.

Sitting in that room, waiting for the doctor, I felt like an eternity passed before she entered. And she confirmed what I already knew.

Olivia has 5p- syndrome.

Dr. S gave us a pamphlet but also warned us against research. And she set my fears to rest when she told us to take Olivia home and let her show us what she could do. She told us that love goes a long way when it comes to helping people reach their greatest potential. She gently told us that we were already doing everything Olivia needed from us. We were providing therapies, we were taking care of her basic needs, we were loving her.

Tom raised his eyes at me to let me know that his own fears had been confirmed. He was wasting his time. Ha! I still didn’t care. I needed this. I needed to hear what this doctor was telling me and I needed him to hear it too.

See, he didn’t care what was wrong with Livie. He didn’t need to know because in his mind, even without a doctor’s confirmation, we were doing all we could to help her.

But I wanted answers and I finally had them.

We also managed to finagle a spot on a neonatal cardiologist’s schedule that day. He was right there in the same office performing ultrasounds on pregnant women, examining their fetus’ hearts. There was a cancelation, he fit Olivia in for a twenty minute exam of her heart.

And it was fine, just like Tom was sure it would be. The murmur she had at birth was even gone.

So in the end, the day we got her diagnosis was a good day.

Mostly because I’d mourned the very possibility of 5p- so many months previously. I’d had a chance to face it and the fears and sadness and yes, even guilt that come with it before it was a reality.

Once it became a reality, it was no longer so scary, so big. It was just another part of what made our little girl amazing. So we took her home and she’s been showing us what she can do ever since.

Monday, December 12, 2011

Define "Lucky"

A few nights ago, my dad stopped by our house at 7:30, probably for no other reason than to annoy the shit out of me. And I was extra annoyed on this evening because he’d already made two such visits earlier in the week. He was on my last nerve at this point.

But anyway, stop he did. He brought mini candy bars for the girls as he always does. I think he may have also had some junk mail to give me. I still sometimes get mail at his house, which just gives him one more excuse to stop when it’s late and he knows I’d prefer he wait until another day if he can’t be bothered to show up before 7:45.

We were in the kitchen where I was attempting to bake cookies for Julie’s Christmas party. Olivia came running in and slipped as she rounded the corner. Down she went! She popped right back up with a grin and said, “I’m alright.”

I pulled her close and hugged her, reminding her to be more careful because the kitchen floor can be slippery when you’re wearing socks but no shoes.

She hugged me back and then wrestled her way out of my arms to chase her sister down.

My dad said something like, “She’s a lucky kid to have you and your mom.”

And I said, “Well, we’re lucky to have her and her sister too.”

But then it occurred to me that he means that O is lucky to have us because of her syndrome. As in, perhaps she’s lucky because she doesn’t actually deserve to be treated like any other child in our household would be but she is because, well, in my dad’s eyes, my mom and I are exceptional human beings. Of course, this comment of his also occurred two nights after he stood in the flipping doorway to the bathroom while I cleaned poop off O’s butt, him standing there talking about his school days as if it were the most natural thing in the world for a woman to be cleaning a five-year-old’s poopy butt. And honestly, it is perfectly natural, but not when you have a damned audience!

And anyone who reads this knows I’m not exceptional. Not at all. I’m so very human, very flawed and less than kind more often than not. To be honest, I wasn’t all that patient the night I was cleaning up the poop. O kept whining and moving around and I kept telling her that I wasn’t enjoying the situation any more than she was. Poor kid.

So I disagree that she’s lucky to have me. I think I’m lucky to have her. I’m lucky to have both of my girls. O’s syndrome makes no difference to me when I consider how much they both have enriched my life. They’re both amazing, they can both drive me insane (as can my dad, obviously) but I wouldn’t trade either of them for anything in the world.

And I don’t think my dad gets that. He sees Olivia’s muscle weakness, her delayed gross motor skills and speech. He sees her DNA.

And that makes me sad for him. Because he’s missing her smile, her laugh, her imagination. He doesn’t see that she’s the best little sister Alyssa could have just like Alyssa is the best big sister O could have. He doesn’t see how they’ve both tested my patience and made me a better person.

He’s the one who is missing out on the luck. He doesn’t see how amazing it is that I get to be Mommy to these children. He only sees that they’re lucky to have me. He is missing the big picture, the one that shows how precious they are, how special.

I know he means well. I know that he thinks I’m as special as I think my girls are. I just wish he could extend his view out a little and see the blizzard of blessings we have instead of just one or two of the snowflakes.

Sunday, December 11, 2011

So Worth It

Julie's comment about making her party sound complicated...if it is complicated, she makes it seem so easy.

And her house was wonderful, as always. The cookies were sweet, the velvet chicken soup was hot and Olivia LOVED it (she had two bowls full), the kids were kind to each other, the games were fun and the hostess was exceptionally gracious.

We left home at 11:00, made it to Julie's at about 2:15 after two stops to pee, one stop to get food and a minor detour because I took the wrong road during one of the potty breaks.

And to give O her due, she had an amazing potty weekend. During our shopping trip yesterday, we went sans Pull Up. I decided to trust her with undies. I took extra pants and a Pull Up just in case, but she didn't have a single accident yesterday. All you 5p- moms get how amazing that is. She's 'only' five.

Today, because the trip was longer, I put her in a Pull Up but it stayed dry the entire drive. She peed when Alyssa and I did and held it the rest of the time. I know!!!

I love these parties, even with the three hour drive to get there. It's always so lovely to reconnect with friends I don't see nearly often enough. Julie and I have known each other for, oh, almsot twenty years and she has seen me at my best and worst and still hugs me when I see her. Heck, she still invites me to parties like this even having seen me at my very worst. Mandy has been my lovely skinny friend for over fifteen years. Mary, a beautiful woman I met through the March of Dimes is always so sweet and fun.

Julie's cousins are fun and their kids are so sweet.

I am so lucky to know these people, lucky that my kids are good travelers and lucky that I get to do things like this.

It's now 9:35pm, the girls are sound asleep, there's laundry in the washer and the dryer and a load that isn't going to fold itself in a basket in the family room. With all the fun we've had this weekend, nothing has gotten done around the house. And yes, it's still so worth it.

Saturday, December 10, 2011

Dumb

That's me. Dumb.

Who in their right mind (read: smart mind) takes her children with her to go Christmas shopping? Me, that's who.

Because I'm dumb.

Okay, so I wasn't necessarily shopping for their gifts but do you know how annoying it can be to have two kids in a mall, clamoring to ride the carousel, wanting to play in the play area, chirping, "I'm hungry." every ten minutes?

Yes, it's that annoying. But what was I going to do?

Oh, that's right, smart moms leave the kids home with Dad. Alas, he had an auction to attend this morning. Got to buy stuff so he can sell it and all that.

So off we went to the mall. And you know what?

It wasn't that bad. We had a nice time.

I crossed quite a few things off my list, even managing to get a couple of things for the very girls who were with me. And they weren't even aware of it. Go me!

When we got home, I snuck everything in the house while Alyssa wrapped the ornaments we're taking to Indy tomorrow for our Ugly Sweater/Gift-Cookie Exchange/Tea Party. Should be a grand time.

And now Alyssa's cutting stars out of sugar cookie dough, Olivia's sound asleep on the couch and I'm ready to put this day to rest, knowing we managed to wring the very best out of it.

This evening, as we were driving home from the mall and discussing our trip tomorrow, Alyssa asked if we could have just one weekend where we don't go anywhere. I promised, "Next weekend, Sweetie. Next weekend."

And we're going to do our best to honor that promise.

Friday, December 9, 2011

That Was Close

This morning as I was racing around the house in search of O’s coat and hat and my own shoes and purse, Tom went out and started my car so it could warm up before I bundled Olivia into it for a quick trip to my mom’s. Poor sweetums isn’t feeling well and didn’t go to school.

Anyway, he NEVER starts my car. But since he did this morning, we were all greeted by the smell of hot metal grating against itself and the shrieking sound of a belt giving way when we opened the door to the garage.

Tom shouted, “Turn it off, turn it off!”

I replied, “I’m trying!” And I finally managed to turn the car off and popped the hood.

He opened the hood and out came smoke and more stink.

Olivia and I went back into our warm house while Tom inspected the damage.

He came back in to tell me he was going to go get Sylvie (the silver Grand Prix.) I’d drive that one to take O to Gram’s and then go to work.

I called work to let them know I’d be about fifteen minutes late and Alyssa went about the morning business of watching for the bus.

Tom put coolant into Sylvie as well as air in the tires while I wrestled with O’s car seat, trying to get it out of Ruby (the red Grand Prix.) I finally gave up, that damned LATCH system is good at holding those car seats in, that’s for sure, and got the seat from Tom’s van, put it in Sylvie and off O and I went to Gram’s.

I was only ten minutes late to work, so really, I was early since I’d said I’d be fifteen minutes late. Go me.

Tom said he was going to call Jack, our local mechanic and see if he could get Ruby in today. He (Tom) was sure something had locked up and that running the car for even two minutes had ruined a belt.

I called him at 11:30 to confirm that he was still bringing a package that I would sent via UPS and he said that Jack was busy today and wouldn’t be able to look at Ruby.

I sighed and said, “So the girls and I won’t be going to Indianapolis on Sunday, will we?” We were invited to Julie’s Annual Christmas Tea Party. We are so excited because we all three got some pretty horrendous Christmas sweaters to wear to the event and Alyssa is always excited to get to see Riley. I was really dreading calling/emailing Julie and saying, “Yeah, car trouble. Won’t make it.” I hate sending messages like that. Sadly, I’ve sent more than my share of those messages. Ugh!

He told me not to make any calls yet cancelling our plans. He was going to see what he could do for Ruby.

He called mat 12:05 to say he was in the parking lot with the package. I opened the door and saw that he’d driven Ruby to town to drop off the package. I could tell he was so proud of himself. He said that when he’d called Jack and found out how busy he was, Tom decided to tinker around with the car himself. He spend $75 on parts and she’s good as new.

Indy, here we come.

My husband really is pretty awesome. He does so much for us, keeping Sylvie running even though she’s really on her last legs, fixing Ruby at a moment’s notice.

He told me that it was a good thing he’d started Ruby this morning because if he hadn’t, she’d have broken down on the road, probably between home and my mom’s, leaving me and Livie to call him to come rescue us.

The thing is, that’s just what he’d have done had we broken down. But we got lucky, we didn’t break down and now that the belt has been fixed, we can head to the tea party with confidence in our ugly sweaters and our yummy treats.

Thank heaven for handy, loving husbands.

Thursday, December 8, 2011

When 'Nice' isn't Enough

Once upon a time, I was very confident of the validity of my own opinions. Way back when I was in high school and even college, I very much owned my thoughts and I wasn’t afraid to voice them, so confident was I that I was right.

Where did that girl go? When did I become a passive-aggressive, ‘nice’ person who worried more about the opinions of other than about standing up for myself and my own opinions?

I had that I no longer stand up for myself. I hate that I just stand there when someone else is spouting off nonsense.

I want to be that strong girl I once was. No, wait. I want to be the strong woman that girl was destined to be before she suddenly became scared of offending people.

I was so self-confident when I was seventeen years old. Oh, sure, I had some body image issues, but I never doubted my intelligence. I never doubted that I knew what was right and wrong. And I was never, ever afraid to tell others if I thought what they were doing was wrong.

Take me to when I was twenty-five and suddenly I was shy, reserved, unsure of my own place in the world. These days? I’m a little better than I was when I was twenty-five, but nowhere near where my confidence level at seventeen.

Of course, there is the fact that most seventeen year olds think they know everything. Perhaps I grew up and realized that I don’t know everything.

But I want some of that self-righteousness back. I want that confidence in my own sense of right and wrong back. I want that voice back.

Obviously, I don’t want to go out and start fights, ignoring the rights of other people, but I don’t want to continue to walk away when someone is being an idiot. I want to remember what it was like to have a sense of entitlement, a sense that I have a right to my own opinion and a right to voice it.

I want to model that behavior for my daughters. I don’t want them to grow up with a weak, meely-mouthed mother. I want them to know that we women have ideas, thoughts, rights and we have the right to share those things with the world.

I’m on a journey of self-discovery, of finding who I am and who I want to be. It’s obviously going to be a struggle, but I know it will be worth it when I find that opinionated, strong seventeen year old who is probably going crazy inside this passive-aggressive, ‘nice’ forty-one year old brain.

I kind of feel sorry for those around me as I work toward finding my strong self again. They’re in for a few surprises, I think.