Thursday, October 31, 2013

Selfish Tendencies

I have a tendency to be selfish. I wonder if this is the case with most people. We’re all a little sef-centered if not outright selfish, right? We can’t actually help it, after all, I am the center of my own universe just as you are the center of yours.

So, yes, I can be selfish. Or least, I can be in my own thoughts.

Lately, my brother has needed me to pick up my nephew from their house and transport him to my mother’s home.

Why me? Because I work about two blocks from where my brother lives and I live three miles from where my mother lives. So, yes, I’m going that way.

I have also been asked on numerous occasions to take my nephew to school, since as luck would have it, his school is down the street from the home he shares with my brother, which, obviously, means it’s practically next door to where I work. See, I’m already going that way so…

Why not?

I’ll tell you why my selfish self would rather not. Because my nephew is a talker. He talks and talks and talks the entire 17 miles either from home to Gram’s for from Gram’s to school. He does not stop talking.

And those 17 miles? They are the only time I am actually by myself, with the quiet of my own thoughts or yes, even the radio or a cd (what is this 2003?) that I have each day. When I’m not in the car, I’m either at work surrounded by people who need things from me or I’m at home, also surrounded by people who need things from me.

So yes, my selfish tendencies wish that my brother would figure something else out.

But I don’t ever say that. I just go pick the little talker up, take him where he needs to go and go about my day. Because like I said, I’m going that way.

While I admit to these selfish tendencies, I am happy to say that I don’t usually give in to them. I understand that I’m part of this village and I try to do my part.

Don’t we all?

Wednesday, October 30, 2013

Restyling My Mothering

I’ve been sitting around lately, contemplating my parenting skills or, perhaps more likely, my lack of parenting skills.

See, I have been known to yell. Or even hiss something mean to one of my kids if they’ve pushed my last button and I’ve pulled out every last drop of patience and the reservoir has run dry.

I don’t want to be the mom who is mean to her kids.

That’s not to say I want to give in to them on every little thing. No. I want to be the mom who disciplines with love and kindness. The mom who says no with a smile to the request for candy before dinner.

I know I’m only human and I get tired and frustrated and irritable but sometimes I feel like I’m more tired, frustrated and irritable than your average mom. And I hate that about myself.

While at a gathering for my grandmother’s birthday this weekend, a cousin and his wife were there with their two kids. My cousin’s wife is a strict mom but I think she’s a kind one too. Her kids know they’re loved even though they have many rules and she is firm with them.

I am not this woman, I don’t have her temperament or her wardrobe but I want to be more like her as a mother.

I want even the frustrated moments to be drenched in kindness. I never, ever want my kids to think I don’t want them near me or that they’re a nuisance (even when they ARE being a nuisance because let’s face it, kids can do that sometimes.)

It’s not too late for me as a mother. I refuse to believe that I can’t change. But I do know it’s going to take work and a lot of thought and lots and lots of patience on my part, for myself and for my kids.

They deserve for me to try, at the very least. They deserve better than what I’ve given them so far.

Tuesday, October 29, 2013

For the Dogs

I have a confession to make. Ready? It’s a doozy…

I’m not a dog person.

I know. Go ahead and unfollow me.

I made several people gasp when I said this last weekend at a family gathering.

When I say I’m not a dog person, this doesn’t mean I don’t like dogs. It just means I don’t want a dog of my own. I never have. Dogs need a lot of attention.

After the gasps subsided, I explained, “Dogs are very needy creatures. I already have three creatures in my house that need everything I can give them. I don’t want or need one more thing that demands my attention.”

That seemed to soothe the feathers of the more strident dog lovers in my family.

I say, whatever!!

I also say, why does it matter to them if I’m a dog person or not? Shouldn’t they actually be applauding me and the fact that I know myself well enough to not have a dog since I know I wouldn’t give it the attention it would want and need? Isn’t it better to leave the dogs to people who can take care of them beyond feeding and watering them than to have one in my home for the sake of appearances (and because Alyssa would be so, so happy) but then leave the poor thing emotionally neglected?

I am glad there are people who love animals and who care about them and want them in their lives. I’m thrilled about that because it means there are good homes for these animals.

I’m just not one of those people and I’m not apologizing for that. I didn’t apologize at our family gathering either. Yes, I felt judged but I figured dog people simply cannot imagine not loving animals. I get that.

But I’m still not apologizing for not wanting one of my own. When Alyssa is all grown up and has her own house and her own vacuum cleaner, she can have all the dogs she wants. I’ll just ask her nicely not to bring them to our house.

See, we can all get along.

Monday, October 28, 2013

So Much Fun

It seems appropriate that my 1000th post be mostly pictures of my little vampiric cheerleaders. They were so cute (scary?) and had so much fun. Olivia loved the vampire make up and she carried her magnifying glass the entire evening as she followed her sister from house to house.

Life just keeps getting more and more fun with these two. I am so incredibly lucky.

Friday, October 25, 2013

Shades of Brad Pitt

I need a haircut.

I got about eight inches cut off my hair back in August. I haven't had a haircut since.

It's now long enough to brush the collars of my shirts and to separate. That means it's long enough to annoy me.

And, the worst part?

It fell into a center part a couple of days ago. I let it go and went about my day. At one point, I went to the restroom at work and caught a glimpse of myself in the mirror.

Yikes! I looked vaguely like Brad Pitt circa World War Z.

Not a good look, at least for a 42 year old mom.

So, yes. I either need a haircut or I need to suck it up and grow it past this point and never, ever part it in the middle and put both sides behind my ears.

Thursday, October 24, 2013

A Day with Kindergarteners

So Olivia’s still not eating lunch at school.

Seriously. She doesn’t eat a single thing during her lunch. She sits there and watches the other kids eat. I don’t know if she takes her food out of her lunchbox or not but her teacher reports (and the evidence of all her food being in her lunchbox when she gets home supports this) that she doesn’t eat during lunch.


Tomorrow I’m going to the school during her lunch to see if she’ll eat while I’m there. Of course, this won’t mean anything because I can’t be there every single day but we’re going to give it a try.

Then, after lunch, I’ll go home, gather supplies and head back to the school for the kindergarten Halloween party.

Can you even stand it? It’s going to be death by overdose of cute. And, better still, kindergarteners don’t stink when they sweat so their classroom will still be pleasant even after they’d done the whole costume parade thing. Yay!!!

I was the mom in charge of the Halloween party this year. So…I hope it all goes well.

I’m excited for it.

I get to make a Jello brain tonight. That ought to be cool.

Olivia is so flipping excited to wear her cheerleading costume and her vampire makeup at school tomorrow. I’m excited for her.

I hope I remember to take the camera for photographic evidence that this all took place.

No promises, though.

Wednesday, October 23, 2013

Someetimes You Just Know

After watching an interview on Katie with Sam Berns and his parents, Dr. Scott Berns and Dr. Leslie Gordon, Katie asked Dr. Gordon, Sam’s mom, “When did you know something was wrong with Sam?” (Sam has Progeria but like Olivia is more than 5p- syndrome, Sam is so much more than Progeria.)

And the answer was something like, “Almost from the beginning.”

After Olivia’s rough start, I was so happy to get her home. Her eleven day NICU stay was tough but once it was over, I thought we were going to have only sunny skies ahead of us.

But then, just by mothering this amazing little girl day to day, I knew. I didn’t know what I knew, but I knew that there was something different about her.

Her doctor tried to tell me I was a nervous mother. He reminded me that I couldn’t compare her to her older sister, that every baby is different.


I knew all that. Just like I knew that Olivia was different in a way that wasn’t necessarily typical. When she was about three months old I started googling things like “symptoms of autism in infants” and “symptoms of cerebral palsy”.

There was no one thing I could pinpoint that made me worry but the worry was there, a niggling at the back of my mind, something telling me to keep an eye on this baby and remember everything.

I started rereading my copy of What to Expect in the First Year. Sure, I had already parented a child through the first year, so I knew a lot of what should have been happening but Alyssa did a lot of the gross motor things really early so I didn’t want to skew my expectations.

But…Olivia wasn’t meeting any of the milestones. She wasn’t making eye contact, she wasn’t smiling. She wasn’t pushing up when doing tummy time. She just laid there, like a lump. She was an adorable lump but still a lump.

When she did finally start smiling and response to something we actually did, there was much celebration in our house. When she started actually interacting, making eye contact, reaching and yes, even controlling her own head, I was thrilled but still…I knew that she was more than ‘delayed’ as her doctor put it.

I chased answers. I pushed and asked for referrals, all the while trying to find ways to treat the symptoms before we even knew what was causing those symptoms.

Because I knew.

Sometimes, you just know. Even when you aren’t sure what it is you know. You know there is something to know.

Tuesday, October 22, 2013


Regardless of the number of chromosomes in our cells, I truly believe that we all have endless possibilities ahead of us.

Each time I tell Olivia’s story, which is less frequently these days, I am asked, “Will she be able to get married? Will she have kids?”

My answer? Who knows?

Who knows where she’ll be, emotionally, intellectually, cognitively when she’s an adult.

These days, she’s doing so well. She’s holding her own in her kindergarten class, a class that is full of typical kids, kids who have all their chromosomes, kids who spent no time in the NICU, who probably walked by the time they were a year old.

But again, who cares when they walked or started talking?

I’ve met so many people in the 5p- community, people who weren’t diagnosed until adulthood and then, only because they had a child who was diagnosed. These people have full, rich lives. They’ve gone to college, gotten married, had children.

I feel a little freer being able to say I don’t know if Olivia will be able to do those things. Freer because by saying I don’t know, I’m not saying she won’t do those things.

We all have the potential for amazing things in our life. And everyone defines amazing differently.

We also all have the potential for tragedy. Just because I have all of my chromosomes doesn’t mean I won’t be in a life-altering accident and suddenly be dependent on others to care for me for the rest of my life.

Even before we had a diagnosis for Olivia, I’ve said I don’t want to limit her. I don’t want to tell her what she can and can’t do.

So when she tells me that someday, she’s going to get married and wear a beautiful white dress at her wedding, I smile and nod and ask her to tell me more about her dress. When she pretends to be a mommy to her dolls, I tell her she’s a fabulous mommy and I can’t wait to hold her babies for her.

When she asks me what she’s going to be when she grows up, where she’s going to work and where she’s going to live, I tell her that all of that is up to her. She can be whatever she wants, work where she wants, live where she wants.

I’m lucky that right now, she still wants to live with me forever.

I tell Olivia the same things I tell Alyssa, that they have big, beautiful, unlimited futures. What else can I say? Why live life as if there are limits?

To quote Aquamarine, “Why go through life unnoticed?”

I want the world to notice my two beautiful, amazing, limitless girls. I want those two girls to live a life without fear, without limits, without someone standing to the side and saying, “Oh, she can’t do that. She’s a girl/has a syndrome/whatever limit society/someone might want to put on them.”

I want them to laugh at boundaries and then jump right over them. I want that for both of them and right this second? I can’t see any reason not to raise them both as if their future is not bright, brilliant, limitless.

Monday, October 21, 2013

Dishing It Out

A few weeks ago I had dish soap on my list of things to by while at the grocery store. I usually buy Dawn dish soap. That day at the store, I saw some less expensive options and went with Great Value orange scented dish soap.

Big mistake. Huge!

It smelled awful. Every single time I put the soap in the dishwater the smell was overwhelming. It was not so much an orange smell as it was the smell of chemicals trying to smell like orange.

Seriously. It was horrible.

And every time I washed dishes, I complained.

In fact, last Friday, as I started washing the dishes, I once again, bitched about the smell of the dish soap. Tom was standing next to me and I said, “I am going to complain about this soap every time I do dishes until it’s gone.”

He replied, “I’m just glad you were the one who bought it instead of me. I’d never hear the end of it if I’d bought it.”

I laughed, “You’re still never going to hear the end of it even though I did buy it.”

The next morning as I was getting the girls ready to head out the door to go grocery shopping Tom grabbed my list and added something to it.

I took it from him and saw that he’d added dish soap to the bottom of my list. I told him, “But we still have over three quarters of a bottle of that disgusting orange soap.”

He said, “Yeah, but dish soap isn’t that expensive. I’ll use that stuff in the garage to wash my hands. Get some of the stuff you can stand to use.”

I bought some trust Dawn bleach alternative and doing dishes has been so much less disgusting.

He really is my hero.

Friday, October 18, 2013


On the way home from gymnastics, I stopped at our local KFC and got a bucket of original recipe chicken for the girls. They’re always starving after gymnastics and we don’t get home until 8:15 most Thursday nights and no one wants me to cook at 8:15. They were very grateful for the fast food stop.

Alyssa immediately dug into the chicken, pulling a drum stick out for herself.

Olivia waited a few seconds and demanded, “What about me?”

I told Alyssa to take a piece out for Olivia so it could cool a bit for her.

Alyssa said around a mouthful of chicken, “It’s not really that hot.”

I rolled my eyes in the dark car and said, “Then give your sister a piece!”

She did and much enthusiastic eating ensued.

As she worked her way through her second drumstick, Olivia asked, “How do they make the bones in chicken?”

I pondered this question. Do I answer honestly about how she’s actually eating the flesh of a once living animal or do I make something up, hedging the whole carnivore thing.

I went with the first option. I told her, “Well, the bones grow inside the chicken while it’s still alive.”

“But how does KFC get the chicken like this?” she wanted to know.

In for a dime, in for a dollar, right? I’d started down this path, why not make the whole journey?

I went on, “The chickens were once on a farm and when it was time for them to go to KFC, they first got their heads cut off, then the chickens were chopped up and their feathers were plucked off them. Then they were went to KFC where they were covered in flour and spices and fried to yummy goodness.”

She thought about this for a few seconds, licking her fingers thoughtfully.

Finally she replied, “Chickens are delicious when they’re chopped up.”

Yes. Yes they are.

Looking back, I probably didn’t have to be quite so graphic but hey, it was dark, we were driving home, the scent of fried chicken filled the car and I was tired. It was the best I could do.

And yes, I’m so glad that what she got from the gory details of my rendition of how chickens end up at KFC is that those chickens are delicious when they’re chopped up.

Thursday, October 17, 2013

Party Planning

Since Olivia’s second birthday, her parties have been held as a group party with Sabella and Jaxon. Sabella was born the year before Olivia and Jaxon was born the year after. They were all born in November with their birthdays just a few days apart.

So that first birthday together, J was one, O was two and S was three.

We’ve done it that way ever since.

Yet, Olivia has watched her sister have very different birthday parties in the past few years.

When Alyssa turned eight, we had a roller skating party. When she turned nine, she invited her entire class to our house (five of them came, which was a relief.) Last year for her tenth birthday, we had her party at the gym where the girls take gymnastics.

This past summer, Olivia spent much of her days watching PBS and there are commercials on our local (Fort Wayne) PBS that advertise a party place called Jungle George’s. These commercials tell the kids to “Have your birthday party here!”

And so that’s what Olivia decided she wanted to do.

She’ll be seven this year. She’s done (for now) with group parties, thank you very much. She wants her own party at Jungle George’s.

I called and scheduled the party a couple of weeks ago and just days later, my cousin, Sabella’s mom, mentioned that we needed to start planning the November kids’ birthday party.

I had to break it to her that Olivia’s party is already scheduled and paid for. I explained that Olivia had her heart set on a Jungle George’s birthday party and after watching her sister have all these fun destination (ha!) parties, she wanted her turn.

My brother explained that Jaxon wanted his birthday party to be at their new house but he went on to say that if H wanted to have S’s party there with them, that was cool.

I’ve created the invitations for O’s party and will be sending them next week. She’s so excited she can’t even stand it. She says she can’t believe she gets to have her party at Jungle George’s. She’s cute when she’s excited.

Alyssa decided last weekend that she wants to have three friends over for a slumber party the weekend of her eleventh birthday. My first thought, “Yay! That’s way cheaper than a gymnastics party or a skating party.”

My second thought was, “Crap, how am I going to keep O out of Alyssa’s hair when Alyssa has three friends over and the older girls want to do their things and Olivia just wants to be included?”

Then I had a brilliant idea. I called my mom. She agreed that it was brilliant and was willing to do her part.

The night of A’s slumber party, Jaxon and Olivia will get to go to Gram’s for a slumber party of their own. Tom and I will settle into the living room and leave the family room to the four preteenage girls who will have probably eaten everything in our kitchen.

It’ll be awesome.

Wednesday, October 16, 2013

All the Difference

Yesterday morning was rough. I hit the snooze button one time too many which led to rushing through my shower and racing downstairs ten minutes later than usual to pack lunches, brush hair and teeth and get everyone out the door in time to get to the bus stop.

Add to all that that fact that Tom didn’t get breakfast on the table for the girls until ten minute to seven and I felt all out of control. Things were getting done. Things needed to get done. Ahhh, how are we ever going to get everything done?

As I brushed O’s hair yesterday, Tom casually mentioned that if I got downstairs each morning ten minutes earlier than I had that morning, I might feel better as I’m going about the morning routine.

Let me tell you that that comment didn’t sit well with me.

I don’t criticism well. I KNOW he didn’t mean it as criticism but I heard it as such and well, it’s all in the reception, right?


Anyway, last night before bed, I asked Tom what time he’d like to see me downstairs the next morning so we could make sure breakfast we being served and eaten before 6:50.

He shrugged, as if the whole timing of breakfast hadn’t occurred to him as the problem with the entire routine that morning.

When I got upstairs, I changed the time on my alarm to fifteen minutes earlier than usual. That would give me two snoozes without putting me ten minutes behind.

And what do you know? It worked.

I was in the kitchen at 6:28 this morning and both girls were already at the table eating their breakfast.

We weren’t rushing through brushing teeth and getting shoes and socks on.

We left for the bus stop at the usual time but there was no barking orders or rushing out the door.

It really is amazing that ten extra minutes can make all the difference in a person’s attitude at seven o’clock in the morning.

Tuesday, October 15, 2013

Worst Case Scenario

Lest anyone think that when Olivia wakes me up at 4am and makes near-constant demands for the next two hours that she and her demands are greeted with sunshine and roses and perpetual cheerfulness, let me assure you, that is not the case.

I am not pleasant at 4am, not even when the source of the demands are feverish.

Okay, sure, at first I’m all pleasant and soft and I coo thinks like, “Oh baby, that’s a horrible fever you’ve got. Let’s get you tucked in and get some medicine in you.”

But after the third demand for a warm washcloth (WARM! I said WARM, not cold, not tepid, WARM you stupid woman!) I’m on my last nerve and clinging to the hope of lying down and getting even fifteen more minutes of sleep.

So when she rolls over and tells me her back itches, I scratch but I do so begrudgingly and I tell her, “Okay, Livie, I’m only scratching for a minute because I’m tired and we need to sleep.”

Her next request/demand almost always received this response, “Okay, Liv, that’s enough. Settle down and go to sleep.”

At which point, she burrows beneath the blankets for a few minutes before testing me again.

I do not make middle of the night visits/requests/demands pleasant. I am not that mom who is all gentle and loving at 4am. I don’t know why my grumpiness is not more of a deterrent to her waking up as often as she does.

While at a conference a few weeks ago, I was the ‘worst case scenario’ mom. I was the mom others were sending the parents of infants to, the one everyone was telling them about when they said they couldn’t do sleep training on their seven month old. If they don’t do sleep training now, their kid will still be waking them up when she’s almost seven.

Yikes, huh?

And yet, as unpleasant as I can be at four in the morning, I know that in another ten years, I won’t regret having been there for my kids in the middle of the night. As much as I usually just want O to go back to sleep instead of bed hopping and coming to find me in the middle of the night, someday, I might miss the snuggles in the dark, the bare butt being pressed up against me after she’s shed her pull up and jammies.


But guess what? I don’t miss that right now because I’m still in the middle of it. Still. My youngest child isn’t quite seven yet but she still wakes me up six out of seven nights a week.

I am the worst case scenario.

Monday, October 14, 2013

Cat Update

A day and a half after the start of the great cat experiment, Alyssa walked in from a visit to the garage and announced, “Orville loves me again.”

I asked her, “You didn’t hold him, did you?”

“Of course I did,” she replied. “He wanted me to.”

I shook my head. I knew she wouldn’t be able to hold out for two whole days. But even a day and a half helped her see that Orville is a brat who runs from her because she’s too affectionate and he’s too sure of her love.

But she can’t bring herself to ignore him completely, not for two whole days, even if she does see the brattiness of his behavior toward her.

So, we’re modifying the experiment. Instead of playing hard to get, she’s playing a little harder but not impossible to get. She won’t run out and be all, “Ohh, Orville, you’re so sweet. Dad, isn’t he so cute?”

Instead, she’ll got out, feed Orville, give him fresh water, pet his head and walk away and when he wraps himself around her feet, she’ll pick him up, give him some love and everyone, both human and feline, is happy.

In other news, Olivia woke me up this morning at 4:00. She was running a fever. I got up, got her some ibuprofen and tucked her back in bed. She sat up ten minutes later and declared she needed to take her pull up off. She proceeded to take of not just the pull up but also her pajamas. Once she was completely nude, she pulled the blankets back up and told me her arms hurt and presented them to me, in all their naked glory, for rubbing.

After I rubbed both her arms, she sat up again and told me she needed a tissue.

After the tissue had been used on one corner and wadded into a ball, she handed it back to me and told me she needed a warm washcloth instead, thank you very much.

She wiped her face with the washcloth, handed it to me and rolled over, presenting me with her back, which she said was itchy.

Sick kids can be so demanding. Whatever happened to the child who just sleeps off a fever? Is that a mythical creature or am I doing something wrong over here?

Friday, October 11, 2013

Passing It Down

Alyssa got her flute for fifth grade band last week. She’s so excited she can barely stand it. But band classes don’t start until next Monday and the new band director told the kids not to play their new instruments too much lest they develop bad habits.

So…instead of playing her new flute, Alyssa has been playing my old one. Ha! She got around that little order from her teacher, didn’t she?

I love that she’s so excited to play an instrument. I love that she’s excited to learn about music, to learn to make music, to be a part of something bigger.

I loved band. LOVED it. I was bad at it, but I still love is so, so much.

I hope she loves it as much as I did. I also hope she’s better at it than I was but honestly, as long as she loves it, who cares if she’s better than I was?

I was a proud band geek. I didn’t take my band geekiness to American Pie levels but I did enjoy band camp for one summer. I had to go because I’d recently been promoted to drum major of the marching band and I needed to learn to march. I know, the geekiness is enormous, isn’t it?

But I didn’t care. I didn’t care then and I don’t care now. I was doing something I enjoyed and I want that for Alyssa. I want her to find joy in making music with her friends and learning something that no everyone takes the time to learn and having fun at basketball games when she’s in the pep band or at football games when she’s in the marching band and yes, even at concerts where she has to get dressed up and play music she normally wouldn’t choose herself.

I loved all that and I want it for her.

But let me say here, if she comes to me next month and has decided that band isn’t for her, I’ll support that too. Just because I loved being a band geek and would love it if Alyssa decides she loves it too, I’m okay with her not following in my flute-playing marching steps. I really am.

But right now? I’m enjoying watching my girl put her flute together, play a few little tones, lovingly clean her flute and put it away before she learns any bad habits. I love watching her get antsy about when band classes will start. I love watching her walk away with her flute case in hand, off to conquer the world, on page of sheet music at a time.

Thursday, October 10, 2013

The Great Cat Experiment

“Orville hates me,” Alyssa sighed as she walked in from the garage where she’d gone to spend some time with Orville, her cat.

“He doesn’t hate you,” I told her. “He’s just really sure of your love.”

“Why does he run from me the minute I step outside?” she asked forlornly.

“Because he knows you’ll chase him,” I replied. “He knows you want him to let you hold him, he knows you’ll pet him, he knows you’ll give him treats and talk kindly to him.”

“But why would that make him run?”

I don’t pretend to understand why cats work/think the way they do. Cats are weird. But I do tell her, “He’s a cat. Try this. Try ignoring him for two days. Feed him and give him fresh water each day like you normally would but don’t pick him up, don’t pet him. Don’t talk to him and definitely don’t chase him down. Do this for two days and see what happens.”

Orville loves people. He’s one of those few cats who actually does want attention but he knows attention from Alyssa is guaranteed and so he doesn’t have to work for her love.

He also knows that Olivia hates him. She loathes that cat and so he’s constantly in her face, at her feet, pouncing on her (claws retracted, never drawing blood) because he wants attention from the one who won’t give it.

Tom yells at him when he does things like claw the screens and so Orville loves him too. He stops right in front of Tom for belly rubs and follows him all around the yard.

I explained to Alyssa that if she makes Orville work for her love and attention he’ll want it that much more.

Today is the first day of The Great Cat experiment. Alyssa fed Orville like normal and gave him fresh water. But she didn’t pick him up, she didn’t coo at him about how cute he is. She just did what he needed for survival (though that cat doesn’t actually need her to feed him. He catches birds, mice and baby moles daily.) We’ll see if she can managed to do this for two whole days before giving in to her need to cuddle and baby him.

I just pray that I never have to have this conversation with her again, replacing the word ‘cat’ with the word ‘boy.’ Yikes!

Wednesday, October 9, 2013

Best Friends

I’ve been picking up my nephew the past few days and taking him to my mom’s house for the night. He’s a talker, that boy.

The minute we get in the car until we pull into the driveway, he talks.

This could be annoying but he usually has such sweet things to say.

The first day, he told me, “Hey, Tommie. I like playing tag with Livie. She always lets me catch her. Then she chases me and I let her tag me. She makes tag fun.”

He’s a year younger than Olivia. She’s half a foot taller and maybe five pounds heavier so they’re pretty evenly matched. He is definitely stronger, though. I don’t know if that’s a boy thing or a typical vs. 5p- thing. Who cares, right?

One evening last weekend, when Jaxon was spending the night with us, he and Olivia were at the kitchen table, playing school. Olivia was the teacher and she was being quite bossy as she instructed him in the formation of his letters. He finally sighed and said, “I wish I could have another teacher, one who isn’t named Miss Livie!”

When those two are together, they are almost always thinking up some new and inventive way to irritate Alyssa. She often has to lock them out of wherever she might be just to get a little peace.

J and O color together, they run, they crawl under the kitchen table and pretend it’s a cave or they climb into the bathtub and pretend they’re in a spaceship.

I’ve told my brother before how glad I am that his son was born. Not only is he Olivia’s best friend but he’s a pretty great kid all on his own.

He challenges Olivia. He doesn’t know that Olivia has a syndrome. He just sees his “Wibby”. He thinks she’s funny and she finds him to be hysterical. They complement each other in a way that warms my heart.

J walked before Olivia. When he was born, I had a feeling he’d reach most of those sorts of milestones before she did and I was right. But while I thought it would bother me, I was pleasantly surprised to find that it didn’t. She watched him, that tiny little boy, and she learned from him. I could almost see the thought bubble over her head as he walked when he was 13 months and she was 25 months. It said, “Well! If he can do it, so can I!” And four months later, there she went, toddling right after him.

And the challenges haven’t stopped. They’re both in kindergarten this year and while he’s a social butterfly who is teaching her how to make friends, she’s reminding him to sit still and read and practice writing his name.

I hope they continue to be there for each other, to challenge each other to do better, to be better, to just be themselves, not counting chromosomes, not seeing syndromes or ‘normalcy.’ Just loving, because that’s the most be best thing we can do for each other.

Tuesday, October 8, 2013


Alyssa started a trend at school a couple of years ago when she went mermaid blue for a summer and it the color didn’t fade by the time third grade started.

Since then she’s gone red at the ends and had temporary blue streaks put in for spirit week.

Several friends have followed this trend and have either turquoise ends or red streaks. It’s cool and fun and hey, it’s just hair, right?

But each time we’ve done Alyssa’s hair Tom has been a little surprised by the decision.

Back when I made O’s appointment with the doctor due to the painful pooing, Tom was voiced his frustration that I tend to do things without talking to him. Like, make doctor appointment and dye hair. He wasn’t so much mad as he was wondering why I never thought to just let him in on the decision process.

But look at me! I listen. I learn.

This past weekend, Alyssa and I approached Tom and asked his thoughts on putting purple streaks in Alyssa’s hair.

At first, he asked if they were temporary. They are not. Temporary color tends to leave hair crunchy and well, icky. It also stands out way more than the more permanent colors, which are softer and blend into the other, natural strands.

After some discussion, he agreed that it would be kind of cool, as long as we went with streaks under the top layer. That was the plan all along so everyone was happy.

He then asked if we were going to give Olivia purple streaks too. I hadn’t planned to do so because O’s hair is lighter than A’s and the color would be more obvious. But once the idea had been brought up, there was no getting out of it with Olivia. I just rinsed her hair a lot sooner than we did Alyssa’s.

So yes, my girls are sporting purple streaks in their hair. It’s cute, it’s cool. It blends unless they’re wearing their hair up or back. They think Tom and I are awesome parents.

You win some, you lose some. This time? We won.

Monday, October 7, 2013

Not Fair

I think it must be hard to be the older sibling of a child with a syndrome.

Alyssa is very much aware of our house rules.

For example, whatever Dad puts in front of her for breakfast, she eats. And let me say right here, he doesn’t give her things she doesn’t like. But he also know how much she needs to have a good start to the day and he doesn’t let her get away with not eating her breakfast.

Olivia, on the other hand, is a little less impressed by RULES. But then again, sometimes, the rules cannot be enforced for her. Not because she’s a brat or spoiled but because she can’t physically force herself to swallow another bite of what her dad might have just fed her.

It makes Alyssa nuts. It makes her feel like Olivia is a spoiled brat.

One specific morning, the girls were on their ends of the kitchen table. Tom was trying to get Olivia to finish the toast and berries he’d made for her. She was struggling with her breakfast.

Alyssa was on her end eating her Fruit Loops (I know, so very nutritious but we’re calling it iron fortified and letting it go.) She was fussing about the milk Tom has poured for her.

Olivia gagged and asked if she could spit out her toast. Tom told her she could. She came back from spitting out the toast and asked if she could be done. Tom asked her if she wanted cereal instead.

Alyssa gasped, “That’s not fair! I never get to change my mind after you’d made my food.”

Tom wasn’t in the mood to justify his parenting decision to his ten year old. He put O’s bowl of berries in front of Alyssa and said, “Since she can’t eat these you get to.”

Alyssa put her head on the table and cried. She cried real, frustrated tears.

I was at the counter, packing lunches. I called out, “Poor Lyssie.” There was no sarcasm in my tone. I knew Tom was joking about her eating O’s berries but I also knew that Alyssa didn’t know that.

Tom went back and moved the berries from her side of the table. He told her she didn’t have to eat the food her sister wouldn’t eat.

She got up and came to me for comfort. I hugged her and whispered that I know how frustrating it can all be.

By the time we were in the bathroom brushing teeth, Alyssa had dried her tears. But she was still bothered by the unfairness of it all.

I told her that she was right. It isn’t fair that sometimes it feels like there are two different sets of rules in our house. But then I went on and explained, “It also isn’t fair that Livie was born with a syndrome that makes things harder for her. It isn’t that she wouldn’t eat what Daddy made for her today. It’s that she couldn’t. She couldn’t force herself to swallow what she was eating. She’s not just being stubborn, she can’t do it. It’s like when she can’t force words out of her mouth. She wants to, you can see that in her eyes, but she just can’t.”

Alyssa nodded, as if she understood. But I know we’ll probably have this conversation a few more times over the years.

She sees Olivia as her little sister. The kid who can often be annoying but who is just always there, always just Olivia. She doesn’t see a child with a syndrome, a child with special needs, a child who needs the rules to be modified for her.

And I love that. I want that for both of them. I want them to have as normal a sibling relationship as possible. But I also think that at ten years old, Alyssa is old enough, mature enough to be told why sometimes, the rules are adjusted to meet her sister’s needs.
Life isn’t fair. We all know that. Sadly, the older we get, the more this is hammered home to us. It’s how we deal with the unfairness that shows what kind of people we are. I am trying really hard here to be raise my daughters to rise above the unfairness of it all and make the world a better place for everyone they encounter, including themselves.

Friday, October 4, 2013

Double Digits

Ten years ago today, Tom and I stood before friends and family and declared our love for each other. We promised to love, cherish and honor each other above all others.

We promised to care for each other in sickness and health and for richer and for poorer.

In the grand scheme of things, we’ve done pretty well. We weathered a 65 mile commute that pretty much had us under the same roof about three days a week for eight years.

We managed to survive the nightmare that was Olivia’s first six months of life when, as Tom put it, “We should be able to put her down for more than ten minutes without her screaming.”

There were some rough patches. I tell new moms with a smile not to make any decisions about their marriage/relationship during the first year of their baby’s life because things get better. They really do get better. But that first year? It’s tough. It’s tough on both parents and it’s tough on the relationship.

But we’ve weathered the birth of two children, the purchase of two houses, a brief stay in the NICU with a sick baby, the eventual diagnosis of a genetic disorder for that same sick baby. We’ve managed to get through therapies, IEP meetings, a sometimes surly but more often loving ten year old.

I have high hopes for us surviving two teenage girls and growing old together.

These days are the best ones yet. We laugh, we talk, we love.

We’re lucky and we’ve been very, very blessed. These things I know.

Thursday, October 3, 2013


Olivia likes to write. She loves holding a pencil/crayon/pen/marker and making marks on paper, or her arms, or the table, or yes, even the wall.

These days, she’s better about only writing on paper but she’s not allowed to have markers unless a parent/caregiver is sitting next to her, supervising so as to ensure that no skin is marked in the making of art.

When I’m helping her with her homework (read: keeping her on task) I often have to remind her not to embellish her work. I remind her several times exactly what her teachers want on the homework page and tell her not to do more than is asked.

She loves to dot the i’s in her name with little squiggles instead of just a miniscule dot. I remind her that it’s a dot, not a squiggle. She giggles at the word ‘squiggle.’

One day she came home from school with some work she’d done in the class. Her teacher wrote this note on her work:

“We are encouraging Olivia to do her classwork on the front page of handouts and to use the back page for her squiggles.”

I love that they use the same word we do for O’s embellishments. I also love that they are trying to encourage her enthusiasm for ‘writing’ while also helping to keep her actual school work embellishment free.

Olivia can be a lot of work, but she’s also a whole lot of fun. I hope her teachers are having as much fun with her as we do at home even as they help to channel her creativity while keeping her on task to get her actual work done.

I admire kindergarten teachers. I really do. I especially admire Olivia's kindergarten teachers. So far, they're doing a great job of bringing my girl out of her shell and giving her ways to be herself.

Tuesday, October 1, 2013


During one of the breaks I had during my conference this weekend, I went to the hotel gift shop in hopes of finding something, anything, to take home to A and O.

I knew things would be expensive in there but I also kind of knew they wouldn’t be any more expensive than gifts from the airport and I didn’t have time to go anywhere else to even look for souvenirs . So the hotel gift shop it was.

I walked past the shot glasses (inappropriate for a ten year old and a six year old, unless I’m a big old prude…which, if so, so be it.) I also ignored the coffee mugs.

I finally found the stuffed animals. This is a great gift for Alyssa. She loves stuffed animals. Olivia, on the other hand, thinks stuffed animals are stupid and hasn’t a clue as to what she’s supposed to do with them.

But, aha! I saw a plush panda that was riding inside a purse that was shaped like a panda head. Perfect! I would buy it, snip the little plastic thing that held the panda inside the purse, give the panda to Alyssa and the purse to Olivia. Two gifts for the price of one.

Brilliant. That’s what I am.

But wait. My eye is caught by something pink and sparkly. Yes, there it is, the perfect, absolutely perfect gift for Olivia. It’s a sparkly pink elephant on a ring. She loves pink. She loves sparkle, she loves rings.

But if I get the panda purse stuffed with a panda AND the pink elephant ring, that will mean O gets to presents and A gets only one. And that can’t happen.

I can’t not get the elephant ring. It’s too perfect.

So I hold the panda in its purse and the elephant ring and keep looking. What would be perfect for Alyssa? Some sun glasses that have “FBI AGENT” printed on the lenses? No, not even close.

A T-shirt? No.

A bracelet. Ha. Hahahaha. No.

What is that over there? What is that?!? An absurdly large pencil with real lead and a real, giant eraser? Oh my goodness! Yes, that is the perfect gift for Alyssa. It will remind her of the big fork from an iCarly episode.

So that’s what I got them.

And I was right. (I’m a mom, aren’t I usually right when it comes to my kids? Just don’t ask me to plan and schedule your travel arrangements and I’m good.)

Alyssa loved her absurdly large pencil. She thought it was seriously awesome.

And as Olivia opened the tiny box that held her sparkly pink elephant ring she actually gasped with wonder as she pulled it off the cotton that padded the box.

Later she asked, “Did you know this was just the right present for me the minute you saw it?”

I told her I did know.

She continued, “Because it was so gorgeous, right?”

Yep, I told her. Because I knew she’d love the gorgeous ring as much as her sister loves that giant pencil. Sometimes, it feels really good to be right after such an enormous moment of being so very wrong.