Thursday, September 30, 2010


I know why women are moms and men are dads. If men had to be moms on a permanent basis, they'd eat their young.

I'm going away this weekend to Atlante for a conference hosted by the March of Dimes, for a website called I blogged there for about 530 posts before moving here. I started blogging there when Olivia was four months old, before we had her diagnosis, back when we were going on the assumption she'd suffered from intrauterine growth retardation which caused her low birth weight. Back then, I still thought she was 'typical', just screamy and small.

Because I'm going away, Tom has to pick up the slack.

He doesn't really wanna pick up the slack.

He has a lot to do at the old house and this isn't the best time for me to be going away.

This conference happens each year during the first weekend of October (or around that time.) This is the third year I've attended.

I go away one weekend a year. ONE. Weekend. A. Year.

So...I told him to suck it up.

And he asked how much my mom was willing to help out with the girls.

My mom is oldschool. She said, "If he's going to be that way, tell him to hell with it, I'll watch the girls all weekend."

I replied, "No. That's not fair. He is their other parent. I don't want to let him off the hook like that."

And we're not. He's coming up here tonight and getting Alyssa off to school, caring for Olivia, picking Alyssa up from school. He's going to feed them dinner, get them ready for and into bed. Then, on Saturday morning, he's going to take them to my mom's, where they'll stay until Sunday evening when I get home.

And this sounds like a lot, huh?

Except, I've already packed the girls' clothes for their stay at my mom's. Heck, I've already dropped the bag at my mom's house.

I'll pack Alyssa's lunch tomorrow morning before I leave for Julie's house at 4:30am.

So, I'm trying to make it easy for him.

I want them to have fun together. I want him to be willing to give up a single weekend of home improvement and spend it with his daughters, without complaint, with a smile and a feeling of joy just because he gets to be with them.

But he's a man. He sees what needs to be done and thinks that walks to Gram's house that take over an hour and carving pumpkins on the porch at dusk are things that take away from the time to do the important things, like painting and mowing and putting up shelves.

I guess that's just one more difference between men and women.

I know, I'm generalizing and using my specific man as my basis of opinion. I know there are guys out there who don't do this. But I know more who do than who don't, so...

Wednesday, September 29, 2010

Wonder Women

Alyssa has been watching my Wonder Woman DVDs lately. She's loving them. She loves that Wonder Woman is so strong. She has created her own bullet-deflecting bracelets, magical belt and golden lasso. She runs around the house 'throwing' Tom into corners and saving the world, one bad guy at a time.

The only thing missing from her costume is a black wig, which she worked hard to get me to buy last weekend while we were at Walmart. I resisted but admit, it was tough.

This fascination with Wonder Woman comes on the heals of her obsession with Star Trek: Voyager, especially Captain Kathryn Janeway.

As of two weeks ago, she wanted to be Captain Janeway for Halloween. As of last weekend, that has wavered and she can't decided between the captain and Wonder Woman. Poor kid, these kinds of choices are really tough. I'm thinking the next series I need to introduce her too is The Bionic Woman. Imagine what she can do as Jaime Sommers.

I love that she's enjoying these 'old' shows about strong womem. Women who are not just physically strong, but also very smart and very confident. I like that both Captain Janeway and Wonder Woman/Diana Prince show compassion even when confronted with stupidity, ignorance and evil. They aren't afraid to use their strength/power to get the job done but they don't let their power go to their heads.

I want that for my girls. I want them to grow up knowing that they can do anything they want, be anything they want. I want them to know that the world is theirs and they can do good things with this life. I don't want them to ever see being a woman as a handicap, as something that limits them.

The world is theirs and I want them to both go out there someday and make it a better place just by being themselves.

Tuesday, September 28, 2010


We were at Walmart in a neighboring town this past weekend, buying groceries and a gift for my cousin's wedding shower.

My mom was with us. One of the best things about living closer to her is being able to spend time with her outside of the babysitting drop offs/pickups.

We'd gone to different cashiers and my mom was done before me. She followed Alyssa to the room where the arcade games are kept while I finished my transaction.

While check out our groceries, our cashier looked up and exclaimed, "What happened to her hair?!"

I smiled and said, "We keep it short. She pulls at it."

She asked, "Is she autistic or something?"

I shook my head and said, "No, she's actually very social. She has a syndrome called 5p-."

The cashier wrinkled her nose and said, "What's that?"

I explained about the missing parts of the fifth chromosome and she asked, "How can she be missing part of her fifth chromosome?"

Again I shrugged and said, "It was a fluke. It happened at conception. But we got lucky. The parts she's missing just affect her physically. She's weak but all there mentally."

The woman looked at Olivia again and continued her questions, "Is it something to do with her muscles? She's got tiny hands."

I answered, "Yes, she has low muscle tone but we're working on that with gymnastics as therapy."

And with that, our transaction was complete and I headed off to find Alyssa and my mom.

I wasn't bothered by the interaction. I figure things like that are moments where I can teach people about the syndrome and perhaps give them some understanding.

But my, she was outraged! The more she thought about it, the more furious she got. She was just so angry because, as she said, "Olivia can hear perfectly well and is taking everything in. She knows that woman was talking about her and how might that affect her?"

I said that I think that as long as I'm open and comfortable talking about Olivia's syndrome, she'll grow up knowing that while it's there, it doesn't define her.

Grammy wasn't having any of that.

At this point, she wishes she'd been in line with us so she could have told the cashier off. But I don't know how that would have helped.

I want to show Olivia off. I want the world to know how amazing she is.

Yes, her hair is the catalyst right now, because other than her hair being ultra-short, she looks typical. She looks like your average three year old who was in the cart because Mom wanted to corale her.

I understand my mom's outrage, but I don't share it. How are we ever going to educate people if they don't ask questions and if we don't answer them?

Monday, September 27, 2010


As mothers, we all have moments we’re not proud of. Moments we wish we could erase from time and from our children’s memories.

My grandmother gave birth twelve times and raised eleven children. I think her children were spaced such that she never had more than nine in the home at one time. But NINE! Good Lord. My mom was the fifth born but was raised the fourth (the brother born third died in infancy.)

Yesterday, my mom, the girls and I went to a bridal shower for my cousin. It was lovely.

On the drive over there, my mom told me the story of when she learned how to use an iron to pleat pants.

She was perhaps nine years old and for some reason, there was no iron in their home. Her mother sent her to the house next door to iron her brother’s pants for church.

When my mom got back to their house and showed her mom the newly pressed pants, her mom said, “I want pleats!” And she sent her back to the neighbor’s to pleat those pants.

My mom didn’t understand what she meant by pleats and so she just ironed the pants flatter than ever.

When she arrived back at home her mother took a look at those pants and screeched, “I said I want them creased!” Then she yanked those trousers out of my mom’s nine-year-old hands and SHOWED her what she meant and where she meant it.

Off that girl went to crease those pants.

And my mom never once forgot what a crease was nor how to create on in a pair of dress slacks.

My mom and I laughed at the story and then I said, “Well, the poor woman had at least eight kids in the house. I get screechy with just two. Imagine how overwhelmed she must have been.”

My mom said she and her sisters often tell stories like that late at night when they’re all at their mom’s apartment. My grandma always feels bad that her daughters have these memories.

Mom and her sisters don’t tell these stories to make their mother feel bad. They remember them fondly and just think of them as growing moments.

When I was eleven years old, my younger brother, who was seven, and I stayed at home during the summers while my mom worked. My dad worked third shift, so he was asleep somewhere in the house while we played and made messes.

One afternoon my mom came home to an especially big mess and she sort of lost her mind for a few minutes.

After that afternoon, she never came home to a messy house while I was there. I might have been found racing around like a lunatic at 2:30 in preparation for her 3:15 arrival but she didn’t come home to dishes in the sink or toys on the floor or an unvacuumed carpet. I only had to be told once.

But even that memory isn’t told to be hurtful to my mom. I look upon it as a moment in time when I was taken out of my childish self-centeredness long enough to see that my actions affect others. It was a good thing.

Alyssa, ahhh, sweet little Alyssa. At seven, it appears she’s a bit tougher skinned than I was at eleven. Even at my screechiest, she doesn’t seem to be bothered when I tell her over and over and over again that she needs to pick up after herself, or just put her shoes in the closet, or stop throwing her socks in the corner of the living room.

Someday? Perhaps I’ll screech loud and long enough, but maybe not. I hope I can find a way to get through to her without a raised voice. But I’m beginning to see that perhaps a little screeching once in awhile (but not every day, hence our ‘no yelling days’) might not be such a bad thing in the grand scheme of things. I think I’ll stop beating myself up for losing it every so often.

Friday, September 24, 2010

Cutting Back

Julie and I have had this conversation many times. It goes a little like this:

"I sure wish I could stay at home and care for my kids/house/husband like a lot of other people we see out there."

"Me too. They say if we cut back on expenses, anyone can do it."

Really? Who are the mythical 'they' who say that?

We go on to discuss what, exactly, we could cut out of our lives to make it possible for us to cut our families' incomes in half and still be on this side of poverty.

Anytime someone chirps, "Oh we just stopped going out to dinner, blah blah blah and I was able to quit my job." I sort of want to scream.

This isn't aimed at any particular person. I've heard it A LOT from a lot of different people.

And I guess what I want to know is what more can we cut out?

Tom and decided soon after Alyssa was born to give up cable. We don't drive expensive cars. Heck, I bought my car ten years ago for $10,000. It's been paid off for fives years and has 298445 miles on it. That's no a guess, I actually had to write down the mileage today for a work-related trip so I could get paid $.50 for each mile I drove while on company business.

We don't eat out.

We don't do date night.

We don't go to movies.

Neither of us does girls'/boys' nights out.

We don't use credit cards, so our debt is mostly our mortgage and my student loan, against which I owe just over $4000.

My income goes toward our mortgage and groceries. I don't think we can cut back on either of those things.

Yes, I paid for school pictures this past week. Those were all of $29.

And we do pay for gymnastics classes for the girls. Which is just over $80 each month. But this is our PT for Olivia, so I don't think we can cut back on that. It doesn't feel right to consider it an 'extra' or a frivolous thing on which we're spending money.

We don't even have Olivia in daycare, so that's not an expense we'd lose if I were to quit my job. I pay my mom a miniscule amount to watch her. It's not even fair to call her the babysitter because of the small amount of money she receives from us.

I know that a lot of people in our society do have things on which they can cut back in order to live a simpler, easier life. But honestly, I don't think we're one of those families. I work because I have to. I don't work so that we can take that vacation to Hawaii (hi Lauren!!) each spring. I don't work so that we can have lots of video games, toys, etc. I work because my job provides our family with insurance and it pays our mortgage and buys us groceries. It provides us the luxury of one donut per child each Saturday when we're buying groceries.

So yeah, I lament my inability to stay at home and care for my children as I'd like. I bitch about having to get up every single day before I'm ready. But please believe that we've explored the options and quitting my job just isn't one of them. There isn't anything, at this point, we can cut back on or give up that would leave us enough extra cash to allow for that. And I've obviously not made peace with that fact yet. But I'm trying...sort of.

Thursday, September 23, 2010


Alyssa had a three-hour delay this morning due to fog.

Those three hours pushed her release time from school from 3:00 to 4:00. Which means that they'll cover most of what they were going to cover anyway, just a little later than they'd have done otherwise.

Back in Olivia's infant years, when I knew something was not quite right but didn't have a diagnosis, her doctor often used the word delayed. I liked that word. I felt like it meant that things were going to happen, they were just going to happen later than is otherwise normal.

In that first year, I used that word a lot. I pushed it hard. Someone would ask what was up with her and I'd say cheerfully, "Oh, she's just physically delayed. But she'll catch up!!"

I was quite chirpy.

I was very careful not to use the word disabled. I didn't even let myself think it.

Even after we got the diagnosis of 5p-, I stuck with delayed. I was just sure Olivia would catch up. I didn't take her doctor's advice and avoid researching the syndrome, though. I just took the information I found and adjusted it to fit Olivia better. Or I sometimes just told myself, "This tidbit doesn't apply to her."

And honestly? She is catching up.

She's much closer to her peers these days than she was even a year ago.

We all have our challenges and I don't delude myself that Olivia won't continue to have hers. But I do know that those challenges won't break her. The delays won't stop her from growing, changing. She's going to keep on doing her thing, in her own time, delayed perhaps but eventually, she'll get there and get it done, like everyone else.

And that makes me pretty darned proud of the bully.

Wednesday, September 22, 2010


I'm doing the single parenting thing these days.

Not because I'm single or even on the verge of being single, but rather because my husband is about 70 miles away attempting to get our old house ready to be put on the market.

He drives up to see us (and bring the laundry, which is lovely, except he doesn't bother to put it away) every few days.

Some days, he's there when we get up in the morning. Other evenings, he's there when we go to bed.

He always comes up on Thursdays so he can bring Olivia to me for her gymnastics class. But he usually leaves for Huntington before bed because he...well, I'm not sure why, but I am sure he has his reasons.

When we first moved into the house that currently shelters me and the girls on a full-time basis, I had a dream in which Tom was confessing to having had an affair.

In my dream I was hurt, angry and confused as to why he'd do this. I wanted details like how long the affair lasted, where they'd been intimate, how he'd met her, etc.

Near the end of the dream, he said, exasperated, "It was only for seven days. She was a closet-dweller, I took her out every day for a week just to get her out of the closet."

So very, very weird.

I don't actually worry that he's having an affair. At least, I don't on a conscious level.

Before we moved into our new house, the girls and I stayed at my mom's three nights a week.

Wow, was it helpful to have another adult around every evening. Whether it was my mom or Tom, I was never actually the sole caregiver for days on end. These days I am.

And I'm not sure I'm very good at this single-parent thing. I so admire those out there who are widowed or who have, for one reason or another, had single-parenthood thrust upon them.

I realize that divorced parents call themselves single parents. And I understand why.

But...most divorced parents get some time away from their children, some sort of reprieve from the day in/day out act of parenting.

I'm not really getting that right now. And I'm tired. When Tom's here, he's got specific projects he wants to get done and those don't include having two little girls stuck to him like barnacles.

Even though I have projects I'd like to get done too, I don't get to scrape the barnacles off to do them. I have to work around those little appendages. Like the painting last week. Or even the walks I want to take. I can't just go out and walk. I have to load up the stroller with water and snacks and make sure they've both peed before we leave.

I know, bitch much?

But it's hard and I'm not sure everyone (Tom) realizes that. And lest I lose my mind and go off on an enormous temper tantrum the next time we're together, I better just vent it all here, for the world to see.

Tuesday, September 21, 2010


One of the things that one does when one moves into a new-to-them house is paint the walls. Not only does this make the place look cleaner and fresher but it also makes the house feel more like home.


Right. So a couple of weekends ago, the girls and I hit the paint chips at Menards, gathering all colors and shades so we could go home and compare them to our carpets and our countertops to see what would work best to make our house our own.

I imagined a cozy living room, a sedate, restful bedroom, an energetic, sunny kitchen.

Alyssa pictured a cave.

Her favorite color was a dark navy blue.

I vetoed that for the living room with the brown carpet. She was devastated. My choice of a lovely warm beige didn’t ease her distress.

So this past Saturday we picked up the paint and started on the walls in the living room and kitchen.

But let me confess that I hate painting. I knew before we started that I hate it. I hate the tedious job of taping off the corners and trim. The monotony of rolling paint onto the walls drives me crazy. And it takes so long!

But away we went. And yes, I had ‘help’ in the way of a seven year old armed with a paint roller.

Thankfully, we had old sheets laying on the floor to catch the splatters, of which I was as guilty if not more than Alyssa.

We painted for three hours before Olivia, who’d previously been playing quietly at our feet, staged a coup and demanded a roller of her own. This is the child I don’t trust with Crayola Washable markers for fear she’ll turn herself blue. I was NOT giving her a paint roller and letting her go wild with beige acrylic wall paint.

So we stopped, I cleaned up, which is another act of tedious monotony. I don’t care how long you rinse those damned rollers, the paint NEVER comes out completely. Then I made dinner and put both girls in the tub, where they soaked away the aches of painting four walls.

Soon after bath, my mom arrived to liberate us from the paint fumes. I almost cried when she said, “It looks nice. I like the color. The rooms will look great after you get a second coat on them.”

The next day…it all started again.

Except this time, I didn’t have ‘help.’ I told Alyssa that the room I was working on didn’t have any open spaces for her to help. It was the kitchen, which meant a lot of climbing up the step ladder for me.

Every so often, Alyssa would come in and say, “Painting is fun. I like painting, I wish I were painting. Do you like painting?”

And I’d reply, “No! I am not having fun.”

I’m a brat.

But five hours later, the kitchen, hall and entry way were done.

I decided that after climbing and stooping for that long, the girls and I needed to go for a walk just to shake off the stiffness that threatened. We walked 3.3 miles to my mom’s.

The rooms do look better. When I walk in the front door, I really like how clean and new it looks.

But…was the end result worth the effort? I’m not so sure since I still have to put on that freaking second coat. And the thought of having to prime and then paint the upstairs hall and bathrooms makes me want to cry. Some previous owner evidently thought that sponge painting was all the rage because there is royal blue sponge painting all over the upstairs hall and pink/gray sponge painting in both bathrooms. It’s awful. Yet…maybe we can live with it for a few months?

Maybe not. Honestly, I wish I had the kind of money it would take to pay someone else to come and paint my house. The end result is lovely but the work involved is just so boring.

I wish I could say that my creative side comes out and enjoys the act of making a loving living space for my family. Except…painting walls beige doesn’t feel creative to me.

And yet, we all do what we must and in the end, Alyssa had fun and that was a nice side benefit to the act of painting walls.

Friday, September 17, 2010

Worker Bee

I'm a working mother. When I was younger and thought about getting married and having kids, I always invisioned that I'd be a stay-at-home mom to my kids. I pictured lovely days of baking cookies, playing outside, going to the library and the park.

I pictued a perfectly decorated and cleaned house and children that didn't whine because there was nothing to whine about.

And then...I didn't meet Tom until I was 30.

He was a divorced dad of three older kids (they were 14, 15 and 18 when we got married.) I told him before we even met for our first date that if he didn't want more kids not to waste my time.

He worked third-shift as a manager at the local Walmart when we met. He was still paying child support on his older kids.

And this was all fine. No big deal.

Then Alyssa was born.

I took my twelve weeks of maternity leave.

And when Alyssa was thirteen weeks old, I left her with my mom and went back to work.

And I hated it. I hated being away from her, having my time and my energy sucked into something that didn't relate to her.

Except, it sort of did. Relate to her, that is.

See, we need my income to pay our mortgage and to buy groceries and...

There's a lot of justificaiton that goes on. But try to explain to a two year old, or even a seven year old why you have to go to work when all she wants is to spend the day with her mommy.

Alyssa still asks me why I have to work.

And I try to explain it. I explain that I work because my job provides the insurance that pays the doctor bills. I tell her that I work so I can pay for her gymnastics classes and the extra treats she wants when we go grocery shopping. That I work so she can have those fancy Sketchers shoes that light up.

But again, those things don't matter to her. She just wants to spend the day with her mommy.

She asks me why Daddy can't be the one who has a job that provides insurance.

See...Tom quit his job at Walmart when I was six months pregnant with Olivia. I supported this decision.

He'd been doing a little side work for years and in the year previous to his quitting Walmart, he mentioned the possibility of going full-time at the side job and quitting the Walmart gig.

I told him if he could prove to me that our bills could be paid with just the money from his little venture and my work, and we could save what he brought in from Walmart for a year, I'd support the decision.

And he did it. So he quit Walmart and sells items on ebay fulltime.

And it did him a world of good. His stress level dropped, six weeks after he quit working third shift, he looked ten years younger. stress level stayed the same. I know, I know, it isn't always about me.

Except, well, here, it is about me. And when it comes to the girls, it is about me. I'm the mama. They want me over anyone else. That's just how it is, at least in our house.

I don't want to be a worker bee. I wish we has scads to money so we could live where we want, do what we want, spend weekends at the beach or in the mountains, with me baking cookies and keeping a clean house instead of me always being tired, always losing my patience with my lovely, sweet little girls, who are just little girls who don't ever get enough time with their mommy.

Yet we all do what we must.

Alyssa goes to school even though she doesn't always want to.

I go to work and put in my 9 hours a day. I go home and find them something to eat. I attempt to pick up the stray toy or ten. I load and unload the dishwasher and put the laundry away.

And each night, I kiss my sweet girls goodnight and hope that in the morning, Olivia will sleep through me getting out of bed so I can have a ten minute shower by myself in an effort to refuel so we can do it all again.

Thursday, September 16, 2010

Melodrama from the Preschool Set

Olivia is a sponge. She takes everything in, watching, listening, filing it away for future use.

She watches her sister interact with the adults around us.

She observes those adults interacting with each other.

And every so often, she comes up with some witty comeback that reminds me that little people have really big ears.

Yesterday morning as I was packing Alyssa's lunch for the day, Olivia found me in the kitchen and announced, "I'm hungry."

I asked her, "What would you like to eat?"

She grinned up at me and said nothing.

I suggested a banana.

She replied with a shudder, "If I eat a banana I will just die!" Then she left the room, her line having been said, the curtain having fallen on her role as the melodramatic queen for the day.

When we got to my mom's a little later that morning, Jaxon was already there, waiting for is "Livie" and his "Sissy" to arrive to entertain him.

He was so excited to see them. He wanted to show them the Barney toy he had. It's a large stuffed Barney which runs on batteries and sings and dances and talks.

Jaxon got this Barney from our house two weeks before when he'd stayed the night.

Neither Alyssa or Olivia play with it anymore and I'd let the batteries die years before because it's creepy.

But Jaxon loves it! Loves it so much that in the two weeks he'd had it, Jason (Jaxon's dad) has had to replace the batteries twice.

After about fifteen minutes of Jaxon and Alyssa dancing around Barney, Olivia came to fine me again.

She informed me, "That Barney is freakin' me out!"

I love this sense of drama she's cultivating.

But remind me in about ten years that it was cute once upon a time.

Wednesday, September 15, 2010

Fair Day

The county into which we moved has its 4H fair the second week of September.

Because of this, all school kids in the county get a day off school to attend the fair (if they so choose, or if their parents choose for them.)

I grew up in a county where the fair took place in the middle of summer so this FREE day is an alien concept to me.

A day off school to go to the fair? What? Are you kidding me?

But this year, it happened for Alyssa.

And as luck, or busyness or whatever would have it, I have several vacation days left to use before the end of the year.

So I took the day off and we all went to the fair.

This might have to become a tradition!! It was really fun.

My mom and I have been taking the girls to fair since the year I was pregnant with Olivia, which was 2006. That year, Alyssa was willing to ride the carousel. That's it.

The next year, we did the carousel again, as well as looking at the animals.

Last year, I managed to convince both girls to ride the spinning strawberry with me.

That was fun and something they remembered.

This year!! Oh, this year, Alyssa showed how much she's grown and matured. She rode several rides with Olivia that in previous years she looked at with huge, scared eyes and shook her head strenuously., that girl. Watching Alyssa help Olivia get onto and into the rides just warmed this mean mom's heart. It was as if she didn't even had to think about it. She was just there, holding her little sister's hand, lifting her up when she couldn't climb into the ride, carrying her out when she seemed overwhelmed by the crowd.

My girl is amazing.

Yes, yes, both my girls are amazing. But I sometimes think as the 'typical' kid, Alyssa's needs can get overlooked.

And so when I see her working with her sister, playing with her, helping her, I realize that she doesn't mind that her sister needs a little more attention, a little extra help.

And those nights when O's already asleep and Alyssa gets a little extra mom-time, to lay and snuggle and just be together, I know those times are extra special for her, they remind her that she's so very, very loved and so very special in her non-special neediness.

She's awesome, that's all there is to it.

And I'm so lucky to be able to call her my daughter and take her to the fair.

Tuesday, September 14, 2010

No Yelling

Sunday morning dawned early, with Olivia waking at her usual 6:15 and me telling her, "Just give momma a few more minutes."

She patiently sucked her thumb beside me for about 45 minutes (yes, I'm on the verge of shame at that) and then said simply, "Mommy? Can I please have sumping to eat now?"

Oh yes, my shame was complete and I pulled my sorry butt out of bed to feed my poor neglected child.

Alyssa (who is in her OWN bed, which sits next to mine...but still!) sat up and said, "I need a shower!"

So Olivia and I headed downstairs to snag a banana which O could eat while A washed herself in the shower. I know, I know.

But Alyssa doesn't like to be upstairs by herself.'s a new house so, I indulge her. Don't question me in a year or so when the house is no longer new.

So while Olivia at her banana and Alyssa showered, I actually got dressed. Before 8am, on a Sunday!

Then, Olivia was done with her breakfast appetizer and Alyssa was clean so we headed to their room (HA! Okay, the room where their clothes are stored) and they both got dressed while I put laundy away and continued the never ending chore of putting away clothes from boxes.

Yes, yes, a month later and we're still unpacking boxes. Whatever.

Then, we all headed downstairs to stay. And once down there, the girls were in one room and I was in another and I heard Alyssa snap at Olivia.

That gave me an idea so I headed to where they were playing and told them, "I am declaring this a no yelling day. I won't yell at either of you and I want you to not yell at each other."

Of course, I was looking at Alyssa because Olivia doesn't tend to yell much.

And so, we went about our day.

I made some real breakfast because a single banana wasn't going to sustain Olivia's bottomless pit for long.

They played, I cleaned a few things here and there.

Then, at 11ish, I asked them if they wanted to go for a walk.

Alyssa has been begging to go for a walk since we moved.

We attempted it once before but we didn't have the stroller and I didn't have decent walking shoes and we made it about a tenth of a mile before my feet and my back protested loudly (the shoes were horrible and Olivia wanted to be carried before we were even out of the driveway.)

But this time, we had the stroller and I had good shoes for walking.

And so we walked.

We walked to the house just north of us, where the Jack Russel puppy named Olive lives. She's come to visit us three times now. Alyssa's in love with her.

We decided to walk a little further.

We ended up going to my mom's which is 3 1/3 miles away. It was wonderful.

There were moments when Alyssa rode in the stroller too, with Olivia on her lap, which was annoying to Olivia but she got over it.

It took us an hour to make the walk, but it was a lovely day for being outside, for enjoying the sunshine and the cool breeze.

My mom drove us home and let us take the double stroller too, for our next excursion.

And we got through the entire day without nary a single yell.

Yesterday, alas, by 8:30, I'd yelled three times.

At that point, I told them, "I've managed to get my allotted yells out of the way early, no more yelling today."

And...well, it didn't quite work but only because Olivia refused to eat her soup later in the day. She insisted she was 'making' soup and so kept stirring it strenuously, getting it all over the table and floor. But really, even those incidents were mild.

I'm beginning to think that I need to start each day by doing something that is actually necessary rather than spend a morning in pajamas on the couch. I need to feel like I'm making each day count.

And the last few days really, truly counted. These are the days memories are made of.

Sunday, September 12, 2010


The rules are, there are no rules...

Okay, now that I've gotten my Grease reference out of of the way, the girls and I went for a walk today. We walked to my mom's house, which is a little over three miles from our house. We took the stroller so that Olivia wouldn't have to over-exert herself.

It took us an hour to make the walk. It was a lovely day for a walk. The breeze was cool, the sun warm.

During the walk, I came to a place of peace. I realized that I can make good choices for myself without having to make life changes all at once.

Choosing to go for a walk this morning doesn't mean that I'm committing to getting up at 4am from tomorrow until the end of time to run six miles before school/work.

Eating a salad for lunch doesn't mean I won't have ice cream for dessert after dinner.

But one good choice usually leads to more.

And so, with that in mind, I'm making no goals. I'm setting no limits. I'm just gonig to try and make each choice a good one. But I will try very hard not to beat myself up if I made a less than good one in the next five minutes.

Since we bought the house, Tom has lost some weight. He no longer has a stove at the Huntington house. Neither does he have a microwave. He does have a fridge, though.

But when I'm not around to cook and provide groceries, he's more likely to subsist on peanut butter sandwiches and coffee. If the bread runs out, he'll eat crackers with peanut butter.

The other day, he told me he's going to put away his size pants and just wear the size 32s because they fit better. Of course he's glad about this loss of weight. He looks good.

He mentioned that it's easy, though, when there just isn't food in the house.

I glibly replied, "Yeah, I think it's so unfair that grocery stores won't allow men inside."

He laughed.

I told him he doesn't need a stove (not that he'd use one, even if there were one in the house) to make ham sandwiches.

Am I jealous that his weight loss has been almost effortless? Of course. But then, I don't think I could do it this way anyway.

So...I'm attempting to let it go. I'm attempting to be happy for his lack of grocery shopping skills and concentrating on my own choices, one decision at a time.

Friday, September 10, 2010


Thank you to Lauren and Anonymous (Julie?) for that comments on my last entry.

Lauren, you're right about the reframe. I love how you put it. I love that Olivia is a testament to what a 5p- kid can do, that her potential can help give any parent who is faced with this diagnosis hope.

Because sometimes, hope is all we have.

When I first started blogging, I hoped to reach out and be found by other parents of 5p- kids and show them how amazing their child is.

At my first (so far, only) dance marathon, after I'd given the speech about how much Riley Hospital for Children helped our entire family by giving us a diagnosis, one of the other attendees of the dance marathon approached me.

She was a mother of another Riley kid. But that wasn't why she wanted to talk to me. She wanted to tell me about a friend of hers who'd been given the 5p- diagnosis prenatally. Her friend had been told that her child would be blind, she would never walk, never talk, wouldn't be able to feed herself. She was told that her child probably wouldn't survive past birth.

She chose to end the pregnancy due to this grim diagnosis.

Yes, 5p- can be severe. I'm so sorry, Lauren, that you and Akeelah had to find this out. It breaks me heart every single day.

But it isn't always.

And doctors don't seem to know that.

I know they have to give parents the worst-case scenerios. They'd be negligent if they didn't. But why can't they give the best-case scenerios too?

I think of Olivia as a best-case. She's proven everyone wrong.

Her doctor warned me from the start not to research 5p-. She said the data is outdated. I wonder of the woman who ended her pregnancy was given outdated information? I wonder if her doctors were using information from over thirty years ago to advise their patient?

I can't judge that woman for her choice. But...what if she'd been at a dance marathon where Olivia and I were in attendance before she'd received her baby's diagnosis? Maybe she wouldn't have me the choice she did. Maybe she'd have remembered Olivia's laughing face, her running antics, her DANCING and thought, "That could be my baby too."

The woman who spoke with me said that the termination had been a very difficult decision for her friend. I would never want to add to her grief.

But if Olivia can change one person's view of what it means to have a genetic disorder, I want that. I want to be able to support other parents who are facing this syndrome. I want to encourage people to seek out early intervention as soon as they can. We didn't get into therapy until Olivia was almost a year old.

I should have followed Julie's advice when O was three months old but I didn't. And yet...look how far she's already come.

Tom and I are very proud of both of our girls. We are so greatful for the therapists who worked with Olivin the beginning and I'm so glad we found a supportive gym that continues to work with her to keep her strong and encourage her confidence in herself and her abilities. Her abilities are endless.

Thursday, September 9, 2010


I watch Olivia do somersaults and stand on her head and chase after her sister and push her cousin from behind and I wonder, "How did we get so lucky?"

I've made quite a few friends on Facebook through the 5p- Society. We've shared concerns and triumphs and there is a conference held each year at the end of July where parents and kids get together just to feel that sense of belonging that comes with knowing that the people around you understand.

After this year's conference, which we didn't attend, I was told by several parents that it was great. It was so nice to see the range of development in these kids.

One dad in particular said something along the lines of: "If you go next year, Olivia will definitely be the most advanced kid there."

I could read the wistfulness in his words.

His daughter is about a year older than Olivia, which makes her almost five. She started walking independently a couple of months ago. She's not talking a lot yet.

Her dad often instant messages me to ask how O is doing. I'm always honest but try very hard not to come across as braggy because...well, his daughter isn't doing as well.

He says our conversations give him hope that his little girl will catch up and start showing the same abilities that O has shown.

He asked me recently when she started actually conversing with us. It was when she was almost three years old, about six months after she started walking indepentently.

I told him what our PT said when Olivia was about 18 months old. When they're strong enough to stand up and walk, they'll be strong enough to push the air out of their lungs and talk.

And that's how it worked for Olivia.

I hope it works that way for his little girl. I hope this for him as well as for her. Imagine having a five year old brain, having all these thoughts and emotions and no way to get them out and share them with the world.

So frustrating.

Yet, as I'm talking to him, I find myself almost feeling guilty for how well Olivia is doing.

Which is so stupid. She's amazing, this little girl of mine. And I wouldn't change a thing about her. I'm so proud of her and I want to shout to the world that she's come so far and has amazing things ahead of her.

Julie and I were talking once about how we both suffer from something like survivor's guilt.

Her Riley was a micro preemie. She weighed less than two pounds and defied ALL the odds.

And Julie knows this. She's so proud of Riley's accomplishments. She wouldn't take them away from Riley for anything.

Yet...when she meets a parent of another micro preemie who isn't doing as well, she feels that pang. That sense of, "How did we get so lucky?"

I feel that too when I talk to the other parents of kids with 5p-. How did Olivia manage to defy the odds and speak so well? How is it she's walking and talking and running and laughing and eating well and so healthy?

I'm not asking the fates to take that away from us. I'm wishing for these amazing things for all kids and parents.

I wish there were no such thing as premature birth or genetic anomalies (TM Julie.) I wish every child were born with the same potential, the same chances, the same start. I wish that every parent could take home a fat, healthy full-termer without worrying about the health of their child or the state of their chromosomes.

But...the world isn't fair and so I guess Julie and I will continue to marvel over our miracles and feel twinges of guilt even as we gaze proudly at our girls and all they can do.

Wednesday, September 8, 2010


As September wears on (a whole eight days gone already) and we edge into October, I am anticipating my trip to Atlanta where I'll meet with some of the most amazing women I've ever met.

We'll gather to talk about the March of Dimes and how this wonderful organization has helped each of us with our premature children, or our children who suffer from a birth defect or, worse yet, those who have lost children either in infancy or later in life from complications that arise from prematurity or birth defects.

My beautiful friend Julie has been charged with the responsibility of creating a tribute to our children, a video that will be shown at a ceremony of remembrance.

She's putting the pictures of the kids into categories and we were talking about those categories the other day.

The category that Olivia fits into is that of Birth Defects.

Julie and I agree that we don't like that title. I said something like, "When I look at Olivia, I don't see a defective child."

I don't see her syndrome as a defect. Yes, it's given her challenges, but...defect?

Not so much. Not this little girl who is STANDING ON HER HEAD these days. Not this child who races after her sister and cousin, keeping up as they all sprint from room to room. Not the kid who gave her Papa Tom the thumbs up after a hearcut last week because she knew it would make him happy.


Olivia is not defective.


She does have a chromosomal disorder.

That's what I said to my mom this morning. If I were asked how I'd describe Olivia's syndrome, I'd call it a disorder. She's missing part of one of her chromosomes.

We got REALLY lucky with her.

The parts that she's missing have affected her muscle tone but not her sense of humor. Not her sense of style. Not her humanity or her ability to think her way out of a problem.

She's amazing, missing genetic material and all. And while I'll still send Julie those pictures of Olivia and I'll attend our conference and cry at the Remembrance Ceremony and laugh a little afterward as we sooth our emotions with a Sabrina Slammer or three (or is that only served in D.C.?) I'll always have a small problem with the word 'defect.'

In time, we'll all work to change the wording used to describe our children. We'll continue to meet up once a year face to face and daily online and keep working to change the way society as a whole sees and treats our children. One word at a time.

Tuesday, September 7, 2010


At twelve years old, I announced to my mom that someday, I would live in an apartment in a city by myself.

She looked at me skeptically and just nodded. I tended to say outrageous things like that from time to time.

She was used to me. And I think she looked at this skinny, shy twelve-year-old and thought, "Sure kid, whatever you say."

When I was 25 years old, I packed up my stuff and moved from Indianapolis, where I'd been living among friends and moved to Chicago, where I knew exactly one person.

I already had a job lined up but nowhere to live. I lived with my one friend for two or so weeks before I got that apartment by myself. It was a studio on Sheridan, three blocks from the lake. I lived on the tenth floor and had a view of the lake.

I worked three miles away at a university on Foster Avenue and for the first year, I drove to work every day, spent eight hours as an office manager and then went back to my apartment on Friday afternoon and there were some weekends where I didn't speak to anyone other than the cashier at the corner grocery store.

It was lovely.

I was never lonely.

I tried explaining to my aunt this weekend that there is a difference between aloneness and loneliness.

I come from a family full of extroverts. They all love getting together, just hanging out, being loud and silly and, well, together.

And I enjoy that too. To a point. There comes a time, though, when I long for those weekends in Chicago, when I was really and truly alone.

I'm going through something right now. I'm not sure what it is. All I know is that moving to a new house hasn't brought me some miraculous peace of mind. It hasn't given me new-found will power to watch what I eat and exercise.

It hasn't made me like myself more than I did before I moved there.

I do love the house though. I love not having to drive 65 miles one way several times a week.

I love that my girls and I get to GO HOME every single evening, leaving my mom in blissful peace (her husband works second shift, so she gets glorious ALONE time now...I'm so envious.)

My new bathroom is set up so that the mirror is facing the area just out of the shower so each time I get into or out of the shower, I am faced with my grotesque naked body.

My aunt insists that I need to reframe my thinking. She tells me to look at myself and say, "I've been through a lot. I look good for all that."

But it's not true.

I don't look good. No matter what I've been through, there is no excuse for the way I've let myself go.

And when I face myself in the mirror each morning all I feel is loathing. I disgust myself.

And I know this is affecting every aspect of my life.

How can Tom not sense this self-hatred? How can he not think, "Damn, if she feels this way about herself, maybe there's something to it? She is kind of gross..."

I don't think he ever realy thinks like that but I wouldn't blame him if he did.

I told the aunt who were promoting self-love that it's really hard to do that when you're married to a guy who is 50 years old but looks 30 and you're almost 40 years old and look 50.

Now...honestly, I don't think I look 50 years old. But I absolutely don't look 30. Or if I do? I look like a gigantic blog of a 30-year-old.

I know...this is all so self-defeating. I need to get of my huge butt and run. I need to go for a walk in the sun and soak up some vitamin D and melatonin (right?) I also need to get over myself.

I need to suck it up, decide what I want to change and just do it instead whining about it constantly bitching and moaning.

And yet...I'm tired. I need to work on unpacking the house. I need to get the girls' closets organized. I want to get the 'toy' room organized. I want to paint the walls before we get tons of furniture in the house.

There's so much to do and all I want to do is go home, put pajamas on myself and the girls, make some kind of dinner we'll all eat without tears (thank you, Alyssa, for crying over the green beans last night, that was quite pleasant), watch a few episodes of Star Trek: Voyager and then go to sleep.

Yeah, that'll make for a productive evening.

Wednesday, September 1, 2010

Home "School"

According to Olivia's IEP, we are 'homeschooling' her for preschool this year.


My mom brought me an article recently in which a grandmother was writing to a doctor/advice columnist/whatever who was frustrated that her four year old grandson refused to learn to read and write. This child was in preschool where he received instruction on reading, writing, computer usage, etc.

The grandson would occasionaly write a few of the letters in his name but adamantly refused to put the letters together to make words. He also showed no interest at all in reading. His grandmother explained that he enjoyed being read to, but didn't want to read for himself.

The 'expert' suggested that grandma back off and let this child be a little kid. He/she explained that starting kids in preschool this early is showing to lead to attention problems later in life.

The edcuation system of the 50s was brought up, pointing out that decades ago, children stayed at home with their mothers, were taught to sit still when necessary, to listen to the instruction of women, were instructed in social skills such as please and thank you and other good manners.

They weren't taught to read and write until almost six years old.

And this was fine.

It was suggested that this boy be allowed to stay home from preschool and play.

Which, really, is what we're doing with Olivia. We don't have a curriculum for her this year. My mom isn't setting aside time daily to sit down with O and teach her to read or write. They work on flashcards sometimes, but it's random, more of a bit of quiet time rather than structured 'education.'

And Olivia is thriving.

Her speech is amazing. Her physical skills have continued to improve (thanks to gymnastics once a week.)

Yes, her potty training has had a bit of a backslide, but...well, I'm putting this down to her being sort of a brat.

She does great when we're out in public. She will tell me when she has to pee and can hold it when we're in a place where we can't get to a bathroom in that very instant.

But ten minutes to arriving home and she's peeing on the kitchen floor and then splashing in the puddle. It's gross and frustrating but more so because I know she knows better.

Disciplining this child is a challenge. She doesn't take anything seriously. I can scold her and she grins at me. I can put her in time-out and she sits ther patiently, sucking her thumb and pulling at her hair until her time is up then she goes happily on her way.

I'm not sure what we're going to do with her.

Except continue to love her and try not to laugh when she does something so outrageous that should be punished but she looks up at us with those eyes and you can't help but think, "Damn, this kid has got us wrapped around her little finger."