Saturday, December 31, 2011


It's been a good year. We've been incredibly blessed this year. I got a lot of painting done around the house, Alyssa's friendships have grown in her new school, Olivia's blossomed in preschool and Tom's had a great year doing what he does.

Yes, I've had my moments of grouchiness, of petulance but all in all, it's been good.

I am hoping that 2012 brings even better things.

As I've read blogs and found posts about special needs, I've realized that we're so, so lucky to live here. We're lucky to have the support of our family, friends, schools, communities and society itself.

One of my resolutions for 2012 is to give back. I want to repay the cosmos for giving me Olivia and doing so here, in the USA where she can thrive right here in the love of her family.

I've found quite a few blogs that reference Reece's Rainbow, a ministry that raises money for families wishing to adopt special needs (mostly children with Down Syndrome) from eastern European countries.

In these countries, children born with special needs are considered unworthy of life. They're placed in orphanages and at the age of five, if they're not adopted, they're sent to institutions.

Olivia is five years old. Had she been born in one of those countries and we'd received her diagnosis close to birth, we'd have been pressured to leave her in an orphanage. And now, at over five years old, she'd be deemed unadoptable and be sent to an institution where she'd fail to grow, fail to thrive, fail to live.

That any child is sentenced to a life like that breaks my heart.

So 2012 is my year for giving back. Any extra money I have is going to those kids. It's going to those families who are so generous of their homes, their love that they choose to adopt.

We're not in a position to adopt. I know myself well enough to know that my own energies are already spread too thin but there are amazing people out there who can and want to adopt and so I want to help them bring their babies home.

That's my resolution for 2012. I want to spread our blessings, I want to give back to a world that has given me so much.

I want to help these amazing kids find their way home. I want to make their 2012 as great as our 2011 was.

Sometimes the resolutions we make aren't really about us at all.

Friday, December 30, 2011

Another First

We're having a guest tonight. For the first time Alyssa is having a friend spend the night with us.

I know it's really not that big a deal is. It's not just our first time having a non-relative overnight but it's also the friends first time spending the night at a non-relative's house so it's a big thing all the way around.

I told S's mom that no one will be offended if S decides she wants to go home. I get it.

I know that Alyssa would be nervous and might change her mind once bedtime rolls around. So I assured S's mom, in front of both S and A that it's okay if things don't work out this time. We'll try again.

So away we go...

We've already made cookies, the girls have had lunch, they're currently upstairs making messes and singing. I love it.

I love that Alyssa is moving into this whole new world of sleepovers (especially since they're here at our house, I know...that's probably a double standard but we're ready for this part of it, not sure about the part where SHE goes somewhere else...)

Yes, there are messes and more mouths to feed but it's fun.

And I appreciate how good both older girls are being to Olivia, who is right there in the middle of it, making messes with the best of them.

It's the beginning of a new chapter. We'll see if we get to turn the page or need to go back a few pages before the night is through.

Thursday, December 29, 2011

Getting It

Olivia’s class is working on rhyming these days. They’ve actually been working on it for the past month.

When Alyssa was three-ish, she and I would be driving down home or to my mom’s and we’d play a game. One of us would say, “Duck and luck, we rhyme.”

Then the other would come back with, “Car and star, we rhyme.”

She got it pretty quickly.

Olivia? It’s taken her a little longer. We’ve been doing the ‘we rhyme’ game with her ever since her teacher let us know they were working on rhyming.

At first, I’d say, “Mouse and house, we rhyme.” And Olivia would respond with, “Puke.”

And then, she got a little more creative. I’d say, “Love and dove, we rhyme.” She’d say, “Puke and poop, we rhyme.”

See, she was getting the cadence of the whole thing but not quite the rhyming part of it.

Then…about a week ago, I said to her, “Honey and bunny, we rhyme.”

She replied, “Comb and phone, we rhyme.”

She’s almost there! I clapped and praised her. Who cares if the endings weren’t quite right? It was close enough for this mama.

Last night at dinner I said, “Plate and late, we rhyme.”

She grinned at me and said, “Cat and hat, we rhyme.”

Then, as if to prove to me that that one wasn’t just a fluke, she went on to say, “Fish and dish, we rhyme.”

She’s getting it! My girl gets what it means for words to rhyme. Seriously, how cool is that?

She so desperately wants to read these days. She’s almost constantly bringing me something and asking me what it says. I will get down on her level, point to the words as I’m reading them to her and then have her tell me back what they say.

One of my new year’s resolutions this year is to read to Olivia more. I haven’t been doing that nearly enough in the past year and so my goal is to read to hear at least four times a week. She deserves the stimulation and we need that time together. I’m thinking it’s a better resolution that the usual of lose weight or exercise more. I like that it’s not so much about me.

I have another resolution, this one also not about me so much but that’s for another post entirely. For now, I’m going to bask in the fact that my girl can rhyme with the best of them.

Wednesday, December 28, 2011

Not a Baby

Olivia told me that yesterday. She climbed into my lap and informed me that she is not a baby. She’s a big girl.

And then she told me it was time to go upstairs and pack her bag for her overnight adventure at Gram’s house.

At the bottom of the stairs, she invited me to carry her because, big girl or not, why walk when you can ride?

As I packed clothes for the following day, she picked out which blanket would go to keep her warm. Purple blankie, for the record. She also turned down every toy I suggested she take, choosing instead to take only Layla, the lady bug pillow pet.

I asked her which jammies she wanted and she opted for a pair of non-sleeper pajamas. When Alyssa announced she was taking a sleeper, Olivia changed her mind, wanting to take a sleeper too.

I packed both, knowing that she sleeps better if her feet aren’t encased in a sleeper. A girl’s feet need to breathe, don’t you know?

We got to my mom’s at about 5:30 and Jaxon was already there. All three kids were thrilled to see each other, as if they hadn’t just seen each other two days ago.

But that’s the way of the under 10 set. They have short memories and even shorter attention spans. In the time I was there (about 45 minutes) they went from the Play-Doh dentist set to a short game of Whack-a-Mole and then to settling in on the floor for a little television chill-time.

I kissed both girls and the boy goodbye and told my mom to call me if O decided she needed me, no matter what the time.

I got home and tried to figure out what to do with a house that wasn’t filled with noise and racing children. I put a load of laundry in the drier and Tom and I watched the news.

I kept my phone next to me for the next three hours before heading to bed, phone still in my hand.

She didn’t call.

My girl isn’t a baby anymore. She doesn’t need me as much as she needed me even six months ago and I’m so thrilled for her independence. She needs this. She needs to know that she’s one of the kids, that she can have a sleep-over with Gram and that I’ll be back the next day.

And I will. Give me another two hours and I’ll be at the door, announcing that it’s time to go home. And I can guarantee I’ll be greeted with groans. I’m just lucky the groans are accompanied by grins and kisses.

I’m also lucky that even though they’re not babies anymore, those little girls let me baby them just a little every once in awhile. I have to remind them every so often that they’ll always be babies to me even as they spread their wings and learn to fly (or heck, sleep!) without me.

Tuesday, December 27, 2011

A Very Nerdy Christmas

My husband knows me so well. Okay, it helps that I send him links which allows him to know me so well.

But the best thing he got me for Christmas was seasons one and two of The Bionic Woman.

Can you even stand it? It’s seriously so awesome that I get to watch this show anytime I want.

We’re already through the first disk, which contained the five episodes of The Six Million Dollar Man (we can rebuild him, better, stronger, fast…) in which the bionic woman, aka Jaime Sommers, was introduced.

I love that Alyssa sits next to me and watches these sappy shows from the late 1970s. She’s in almost as much awe as I was way back when. Though she did mentioned at one point that perhaps Steve Austin should wear a shirt once in awhile. Ha!

I am lucky that I have a husband who indulges me in my nostalgia and who just shakes his head and smiles if he happens to walk through a room in which we’re enjoying an episode of one of my many nerdy favorites.

Monday, December 26, 2011

So Good

We are an incredibly blessed family.

I think one of the biggest blessings is in the knowing how lucky we are. Olivia has already defied some pretty big odds and we know that.

I am thankful every single day for all that both my girls do. They amaze me.

Christmas this year wasn't so much about presents but about being grateful, being in the moment, taking it in and knowing how amazing it all is.

That pillow pet Olivia spied in the trunk of my car last week? It's her favorite present of all. Who'd have thought? This is the child who's fallen asleep holding a plastic measuring cup. She's never been much into stuffed animals. She's so so oral in the beginning that stuffed animals were useless to her because she couldn't put them in her mouth.

but now? She loves that lady bug so much. She took to Gram's yesterday, just in case she got tired. Her words, no mine.

Alyssa's favorite? Wow, it's a toss up. She loves the MP3 player, the remote controlled car my mom got her, the lava lamp Sante brought her, the jar of pickles my step dad gave her. She likes 'stuff.' And really, she's not quite nine, that's okay. She understands that sometimes the best part of the day is when I lay Olivia on the couch and Alyssa gets to climb on my lap where we'll sit and she'll read a Junie B. Jones book to me and we'll laugh until we cry.

It's those moments when I realize that all my fears about O's needs overshadowing A's needs are fruitless. Both my girls are special and I think I'm getting good at letting them both know it.

Family is so important and that's the best gift I can give my girls. Reminding them that time together, laughing, loving, sharing moments that are spontaneous and crazy, those are the memories we're building. In ten years, Alyssa might not remember what she got for Christmas but she will remember that laughter, that moment in time when she was the only thing on my mind.

And Olivia will remember me holding her, rubbing her back, lulling her to sleep in the warmth of her mom's softness, in the warmth of my love.

Merry Christmas to all, I hope you all got exactly what you wished for this magical season.

Saturday, December 24, 2011

Hey Santa...

I am incredibly blessed to not really have anything to ask Santa for this year. I've got so much.

I have two healthy daughters, a husband who works his butt off, a warm home, a good job.

Life is good and I feel greedy for asking for more.

One thing I might have asked for even a month ago was to have Olivia figure out the whole potty thing.

And...I hesitate to even write this but...we haven't had a potty accident in over three weeks. Okay, let me rephrase that. We haven't had a pee accident in over three weeks. She still prefers to poop in a pull-up. But get this, she comes and ASKS for a pull-up when she has to poop. I try putting her on the toilet at that time, but she can't relax, so a pull-up it is.

But the peeing? Is always in the potty.

As of January 3rd, when the girls go back to school, O will be wearing underwear to school instead of a pull-up. Because when she wears a pull-up? She pees in it. She knows she can. But she also knows that when she's wearing underwear, she needs to pee in the toilet.

The biggest obstacle she'll have at school is the fact that she'll have to actually talke to her teachers in order to use the bathroom there. Her teachers KNOW she can and does talk at home, so they're working on getting her to talk more at school. They use pictures and constantly tell her to use her words. We're going to give it the first week back and see how it goes. Obviously I'll be sending several outfits a day, just to be safe.

We'll see. But for now? Santa can concentrate on the other families this year. We're pretty darned lucky right this minute.

Friday, December 23, 2011


It's the day before Christmas Eve and I'm done shopping and wrapping. I know, right?

I'm never done this early. For those of you who are usually done with all this before Thanksgiving? Bite me.

I'm usually awake at 2am on Christmas morning, wrapping until my fingers ache. But this year? Not so much. Go me!! And, get this...I wrapped right there on the kitchen counter while the girls raced past me from the living room to the family room and back again. Every so often, Alyssa would stop and ask me who the present I was wrapping at that moment was for. I'd just tell her it was a surprise.

It helped that I was able to get the gifts into generic boxes while they were out of the room and I realize this plan of attack might not work in years to come. But that's okay. It worked this year and that's what counts.

So, day before Christmas Eve and...done. Whew.

Tomorrow? We're not going anywhere except to pick up the annual Christmas Eve pizza from Pizza Hut late in the afternoon. I might bake some cookies, I might do some laundry, I might change the sheets but nothing HAS to be done and that? Is what I call Christmas vacation. All I can say is I'm glad my husband's name isn't Clark.

Thursday, December 22, 2011

Sugar Rush

I took my last vacation day of the year today so I could help out at both Alyssa's and Olivia's class Christmas parties.

I'm lucky this year that O is in the morning preschool, which makes her parties happen at 9:30 to 10:45. Alyssa's class parties are always at 1:30, so I get to go to both.

These events are fun. Chaotic, but fun. The kids were all wired and hopped up on sugar and excitement.

For O's class I made sugar cookies and frosting. We gave the kids unfrosted cookies, plastic knives and let them at the frosting. We called it a fine motor activtity. Hey, we use every opportunity we can as a learning one.

For A's class I was asked to bring drinks. What's a Christmas party without red and green Hawaiian Punch?

We also made snowball cake pops. They turned out cute but I'm not a huge fan of white chocolate so I wouldn't want to eat more than one bite but the kids sure got a kick out of them.

I wish I could say that I'm one of those moms who takes on a project like baking cookies or making cake pops and I involve my girls in every step.

But...I'm not so much that mom. See, it's really just easier for me to do it myself. I know, I know!! They're never going to learn if I don't let them help but it can be so frustrating.

But I did have Alyssa roll out the sugar cookie dough and cut out the tree and stocking shapes. I also let her help me roll the cake dough into balls. She even got to dip a few of the frozen cake balls in the white chocolate. But in the end, we ran out of white chocolate so I made a 9pm run to Walmart and by the time I got back, she was sound asleep and I 'had' to finish the project myself. I know I shouldn't have been relieved but...I'm nothing if not honest here, so there you go. It's one of my major flaws. I don't let my girls help out nearly enough in the kitchen.

I'll work on that. Honest.

But for now? Here's a picture of the snowball cake pops. Cute, huh?

Wednesday, December 21, 2011


I love that Alyssa, just weeks short of being nine years old, still believes in the magic of Santa. I love that she gets excited at the thought of seeing him outside on Christmas Eve. I love that she knows that he manages to make all his stops because he’s magic.

Magic can be used to explain almost everything.

Magic doesn’t have to be logical or realistic. It’s magic.

And that’s what this season has been so far, magical. Even with having to put the tree up a second time, we’ve had so many magical moments.

One evening on the way home, the girls and I were looking at all the pretty lights our neighbors had hung. As we approached our house, I pointed out how pretty that house was.

Alyssa exclaimed, “That’s OUR house! Daddy put up lights!”

And he had. He’d put lights on our deck and along the front porch. It was so pretty. It was magical.

Alyssa asked me the other day if Santa stops at Grammy and Pawpaw’s house.

I told her that he probably didn’t. I explained that even though he’s got magic on his side, he probably needs to only stop at houses where kids live.

She liked that answer.

I hope to hold on to the magic for her a little longer. I want her to know magic, to appreciate it.

There is so much magic in this world. We just have to look for it. The rain falling from the sky, the sun shining down on us, each individual snowflake, all magical.

Friendships, family, love. Magic. Sugar cookies with sparkling frosting, little fingers sticky from ‘helping’ make those cookies. Magic is in the very dough that is used to make those cookies.

God, Jesus, his very birth, life, death and resurrection, the most important magic of all.

Maybe all it takes to make magic is to believe in it. If you don’t believe, it’s not there but if you do, wow, the things you get to see, the love you get to experience.

I hope this holiday season is magical for each and every one of you out there. Magic is there, waiting to be experienced, waiting to drench you in its effervescence.

Tuesday, December 20, 2011


I talked to my step-kids’ mom yesterday. I suppose I could say I talked to my husband’s first wife.

But we like to just call her the kids’ mom.

She’s a nice person. She wants the best for her kids and even though they’re grown, you can tell she worries about them. She’s a mother, no matter how old her kids get, she’s always going to worry.

She called so we could talk about J, my step-daughter, her daughter. J isn’t doing so well. She’s not done well for years. We all want what’s best for her but now that she’s almost 25 years old, her decisions are her own.

It makes us all sad.

Then the conversation moves from J onto more mundane things, like how my girls are doing, how the grandkids are doing, etc.

And…in another life, this woman and I might have been friends. She’s not a bad person. She’s quite lovely, actually.

Except for the little fact that she hates my husband with the burning passion of a thousand suns. She detests him. She can’t talk about him without getting angry.

I am glad that she and I can talk civilly about the kids she shares with Tom. I’m glad that I can be the filter through which communication goes from him to her.

J is still covered under my insurance, so really, her business is more with me than with Tom anyway.

But it can get awkward to be chatting with someone and suddenly have to dodge a hate-filled comment about one’s husband.

There was a time, back when J was seventeen and things were especially bad that I had to step back and tell Tom and his ex-wife that I was done being their go-between.

I came into his life five years after their divorce. I had nothing to do with their marriage or their divorce and I was so tired of the anger, the ugliness.

Things have calmed down over the years.

But she’s still angry and so is he at times. He does thank me for being the one to talk to her about insurance issues, so he gets credit for that. But since he’s the only husband I’ve ever had, he has no idea how awkward this can be. He doesn’t get that I don’t necessarily want to talk to the kids’ mom any more than he does.

But I’m less emotionally invested, so I deal with the awkwardness. I know that it’s what J needs right now and she is more important than my own comfort with these issues.

Tis the season to be merry, bright and to forgive and, well, maybe not forget.

Monday, December 19, 2011


Alyssa doesn’t like change. She hates it when the routine is messed up.

She likes to know what to expect, what’s coming next, that things are going to be the same tomorrow as they are today and were yesterday.

And because of this dislike of change, she had trouble falling asleep last night.

See, my mom isn’t feeling well. Olivia doesn’t have school on Mondays. I usually take O to my mom’s in the morning on my way to work.

This morning, though, Olivia stayed home with Tom. They’re having a Daddy Day, which includes non-stop snacking and all things princess, including dresses, movies and dolls. Yes, Tom does love Daddy Days, why do you ask?

Anyway, I figured that since O wasn’t going to be at my mom’s this afternoon, Alyssa could just get off the bus at home, which is right on the way for the very same bus that drops her off at my mom’s each afternoon. Easy, right?

Except Alyssa worried for HOURS last night (literally, hours…we went to bed at 8:30. She was still worrying at 11:00 about these things.)

First she worried that Cindy, the bus driver, might forget to stop at our house. What happens if she forgets?

I told her that if Tom saw her bus drive past our house without stopping to let her off, he’d pack Livie into the van and follow it to Gram’s house, where he’d get A and they’d all three go home.

But!! What if Daddy forgets to watch for the bus and the bus driver also forgets to stop?

Well, I’ll call Daddy at 3:00 to remind him to start watching for the bus.

Okay, but what if Alyssa forgets to watch for our stop at home?

The bus driver won’t forget to stop and she’ll remind Alyssa to get off the bus when she stops there.

It went on and on and on.

I wish I could say that I was patience personified. But…I wasn’t. I tried to calmly answer her worries with logic and patience but by 11:00 I was all, “Oh for Pete Sakes! Go to sleep already. No one is going to forget anything. Just get of the flipping bus when it stops at home!”

And this morning, she was crabby at Olivia because O was refreshed and chipper after her good night of sleep. Alyssa was not so chipper because she lost almost three hours of sleep to worry.

Poor kid.

But dealing with issues like this is good for her. It will show her that change isn’t always bad. That sometimes, you just have to roll with it and it all turns out in the end.

I do have a reminder in my email calendar that will pop up at 3:00 to tell me to call Tom and remind him to watch for the bus. I did, after all, patiently promise her that I’d do just that. That promise was made early on in the evening of worrying.

Sunday, December 18, 2011

A Whole Day at Home

So...I promised Alyssa that we'd spend an entire day at home.

And I kept that promise. Sort of.

She got to spend the entire day at home.

I? Did not.

Neither did Olivia.

Olivia has had a cold/snotty, sniffly nose for two weeks. As we all know, Tom's all about medical professionals telling us what to do for this sort of thing.

So O and I went to Urgent Care this morning so we could pay a doctor $30.00 to tell us that she's got a cold and we need to give it at least another week before we worry. And already, she seems a little less snotty than she was yesterday.

I will give credit where it's due, though and say that they did do a strep test because O's throat is very red. She's fine, though. No strep. Just a cold that has to run its course.

After Urgent Care we hit Walmart, again. I know. We needed peanut butter. What can I say?

Then we went to Kohl's and I feel lucky that O still prefers to ride in the strollers there because I was able to get her something with her right there with me.

We came home, I made chocolate covered cherry fudge and chocolate peppermint cookies and then I wrapped the chocolates we bought for the bus drivers. At that point I realized I was out of decent sized pieces of wrapping paper so Olivia once again had to go with me to the dollar store where we picked up three more rolls.

And then I did something stupid...I got something out of the trunk of my car with Olivia standing right there with me, not thinking about the fact that, duh, that child has eyes and she can see right into the trunk.

A half hour after coming into the house she came up to me and asked, "Mommy? Can I have that pillow pet thing that is in your trunk?"

D'oh! I told her that she has to wait until Christmas and she said, "Please..?"

And she's waiting. But she's not happy about it. I told her it's a Christmas present and I'm sorry she saw it. She grinnedat me and said, "Please?"

Still waiting and right this second, she's distracted by Clark Griswold and his Chrismast vacation.

Sometimes, even a day at home just, well, isn't.

Saturday, December 17, 2011

Mrs. Claus

I have a feeling that sweet, chunky Mrs. Claus doesn't get nearly the amount of credit she deserves.

We hear all about how Old St. Nick travels the world in a single night, bringing toys to all the good boys and girls.

The elves are the onese who get the credit for making the toys and probably even feeding the reindeer.

What do they say Mrs. Claus does?

She's the smiling face that greets Kris when he gets home after his long night of traveling hte world. She probably has a mug of cocoa and some warm slippers.

Except...I think she probably does so much more to prepare for Christmas than any of the tales tell us.

She's the sanity behind the insanity of preparing for this season.

She makes sure Santa eats so he stays jolly. She probably maintains the naughty and nice list because it's what we moms do and I have a feeling that Mrs. Claus has to act as the dorm mother to all those elves running around the place.

For all we know, she shops for the supplies that are used to build the toys. She probably keeps the workshops clean and still manages to greet her husband with a smile each evening.

Oh yes, Mrs. Claus doesn't get nearly enough credit. I'm just saying.

Friday, December 16, 2011

Teachable Moment

This morning Alyssa asked me to put her hair in a bun. No problem, Kiddo. First, though, we had to dry it because she took a bath first thing this morning and we washed her hair.

While the dryer was blowing her hair around her head, she asked me a question.

“Mom? Is another word for sibling ‘retard?’

I was speechless for a few seconds, wondering where she’d heard that word. We don’t use that word in our house.

I finally said, “Who says that word?”

She said that a friend of hers always calls her (the friend’s ) little brother a retard.

I told her, “Well, that’s a very ugly word. It doesn’t mean sibling. Most people think it means stupid.”

I went on to give her the background on the word, explaining that it really means late or slow.

I emphasized that it’s a horrible word and that I hope she never uses it because it’s really mean, really, really nasty.

She took everything I said very seriously and nodded wisely when I told her that she should never call anyone such an ugly word.

I hope neither Alyssa nor Olivia are ever faced with that word in a personal way. I pray that I can keep them both wrapped in our safe little bubble and that neither of them is ever hurt by that word.
But I know I can’t protect them from everything so I want to give them both the knowledge they might need to combat words like that.

Alyssa has mentioned that one of the kids in her class is ‘special needs.’ Those are her words, not mine. I need to ask her if she knows that that means. I want to do so gently.

We’ve explained to Alyssa in age-appropriate words that Olivia has special needs. I’ve mentioned 5p- and what it means. Alyssa’s been there for many a therapy session. She knows that O receives some therapy at school these days and she understands that Olivia isn’t as physically strong as kids her age and even younger. But Olivia is just her sister as far as Alyssa is concerned and that’s what I want for both of them.

I don’t want to make every single day about special needs or teachable moments or even 5p- but I will take those moments as they come and try to use them to make my girls more aware of the differences that exist in all of us, that make us all special and yet still so very ‘normal.’

Each day brings a new challenge and a new chance to be special for those of us with 42 chromosomes and those with more or less. It’s what we all make of each day that counts. Right?


Thursday, December 15, 2011

The Christmas Tree Cakes

The year Olivia was born was the first time I remember coming across the Little Debbie Christmas tree cakes.

They had the bigger, individually sold kind in the cafeteria of the hospital where O spent her first eleven days.

Each afternoon when I’d go back to the hospital to see Olivia, I’d take Alyssa with me and we always go to the cafeteria and get her a Christmas tree cake. We’d spend a few hours up in the NICU beside O’s isolette, Alyssa would color or play with whatever little toy she’d brought with her and I’d either bathe O or hold her or just look at her, humming to her, ‘petting’ her, letting her know I was there.

Then Alyssa and I would go home and Tom would head to the hospital for the night shift. I was always there first thing in the morning, leaving Alyssa home with the promise that she’d go back with me later in the day and that we’d for sure get her that Christmas tree cake.

The Sunday before Olivia was born, I put up our Christmas tree. But I only managed to put the lights on before needing to just rest.

By the time O came home, I’d still not found time to put ornaments on the tree. But Alyssa, little three year and ten months old Alyssa, had taken care of that for me. She’d decorated the tree with puzzle pieces, small horses, ribbons and bows.

It was beautiful and heartbreaking all at once for me.

Once Olivia came home, Alyssa missed those Christmas tree cakes but Tom, ever the hero, found them by the box at Walmart.

We now have a tradition that we always have a box of Little Debbie Christmas tree cakes in the house. Olivia loves them.

I had a tough day yesterday. I was tired and out of sorts. The girls and I were all in bed by 9:00 last night and yet, after a night of uninterrupted sleep (thank you, Olivia!) I was still grouchy and tired this morning.

In fact, my mood was so foul that Tom called me once the girls were on the bus to make sure everything was okay.

Huh. I started this post to talk about the Christmas tree cakes and how they make me smile to hand one to each of the girls or when I pack one in Alyssa’s lunch. I like to remember how important they were to her during those hospital visits.

But it occurs to me that my foul mood might have something to do with those very visits.

See, I’ve told myself for the past five years that I came through O’s NICU experience unscathed.

We got a happy ending, see? So I have no reason to have scars, no reason to look back on those days with anything but gratefulness and perhaps a sense of nostalgia.

But that’s not true, is it? Even though she was only in that hospital for eleven days, I hurt each and every one of those eleven days. She was never in any mortal danger during that hospital stay. I know that now and I think I knew it then, but that didn’t change the fact that I had to leave her every single day, with strangers to care for her until I could go back.

It also doesn’t change the fact that when I left Alyssa each morning, my heart broke because she wanted to be with me, no matter where I was going and I left her there with Tom so I could concentrate on Olivia for a few hours before going back to Alyssa for lunch and our return to the hospital.

Those Christmas tree cakes were symbolic to Alyssa. They let her know that, at the moment I was buying her that cake, she was important, she was the one I was thinking about.

That sad Christmas tree that year, the one with the puzzle pieces so lovingly placed on the tree by a little bitty girl who wasn’t even four years old, it breaks my heart even today. It makes me ache for all that we lost in those eleven days that O was in the hospital.

Yes, we have our happy ending. We are blessed beyond measure.

But I mourn those days, those weeks that Olivia was such a miserable baby. I mourn that little girl that was Alyssa, that little girl who decorated the Christmas tree because her mommy was too tired to do it with her. That little girl who waited all day long for a Christmas tree cake to show her that her mommy was still going to put her first at least once in awhile.

I hope that by acknowledging my anger, my residual sadness of those events, I can go home tonight with a lighter heart, a knowledge that we did come through to the other side, that we’re all here, we’re all healthy and this Christmas will be everything I wanted O’s first Christmas to be.

If not, at least I know where the moodiness is coming from and even if it’s not relieved by the acknowledgement, I can own it rather than bury it.

My pain may not be nearly as great as what so many others have suffered but it is mine and I can’t heal from it if I don’t let it out, let the sun shine on it and burn it away until it’s just so much ash to be blown away by the winds of laughter and happy endings.

Wednesday, December 14, 2011

A Christmas Program

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

Kindergarten year? No Christmas program.

First grade? Nope.

Second grade, new school? Still no program.

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

This year? We got our program.

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

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

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

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

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

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

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

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

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

Tuesday, December 13, 2011


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Olivia has 5p- syndrome.

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

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

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

But I wanted answers and I finally had them.

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

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

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

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

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

Monday, December 12, 2011

Define "Lucky"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, December 11, 2011

So Worth It

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

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

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

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

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

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

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

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

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

Saturday, December 10, 2011


That's me. Dumb.

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

Because I'm dumb.

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

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

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

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

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

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

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

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

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

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

Friday, December 9, 2011

That Was Close

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Indy, here we come.

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

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

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

Thank heaven for handy, loving husbands.

Thursday, December 8, 2011

When 'Nice' isn't Enough

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, December 7, 2011

Late, Late, Late

I hate being late. Before I had kids, I was almost never late. In fact, I was almost always early, probably to the annoyance of more than one hostess.

A baby changes everything. That’s saying, right? Well, Alyssa was five days old when my family threw us a baby shower. We were a half hour late to our own baby shower. I was near tears from the stress/trauma of it all.

I’ve lightened up a bit over the years. I’ve also learned a bit of time management. A bit, I said.

This morning, though, I didn’t manage very well. The alarm went off at the usual time of 5:50am. I almost got up then, but instead, hit the snooze. Olivia woke up three minutes later and as I picked her up I asked her if she wanted to just go in and take a bath or if she wanted to snuggle with me in my bed for a few minutes.

She buried her face in my neck and muttered, “Snuggle.”

So snuggle we did, through two more snoozes. We snuggled so thoroughly that she fell back to sleep and I slipped out of bed at 6:12 to shower.

Two minutes later, she was in the bathroom, looking all bed-headed and still sleepy. I took off her pull-up and she sat in front of the heat. I turned on the shower and she declared, “I want to take a bath.”

I’d told her the day before when she asked at a ridiculously late time that she could take one this morning. So I turned off my shower and started filling the tub for her. When her tub had enough water, I showered. By this point, I knew we were a little behind the schedule, but nothing we couldn’t make up.

Alyssa got up at 6:40 and joined Olivia in the tub. At 6:55, I declared they had to get out of the tub right this minute because we were on the verge of being late enough that we wouldn’t be able to make up the time.

I dried O’s hair while A got dressed. I then towel dried A’s hair and pulled it into a braid, hoping to fool Tom into thinking we were further ahead in our morning prep than we actually were.

We got downstairs for breakfast by 7:10. We’re usually down there by 6:50. Olivia was sucking her thumb and tugging her hair at this point, a great indication that she’s on the verge of starvation. She plowed through her blueberry waffle and Alyssa nibbled at her decrusted toast.

I packed Alyssa’s lunch while Tom kept watch over the breakfast. He was just getting up to toast O another waffle at 7:20 when I went upstairs to finish my own morning routine. I returned at 7:25 to the realization that I had forgotten to pack my own lunch as I was packing A’s. She was brushing her teach and Olivia was eating her second waffle heartily.

I gathered O’s coat, backpack, shoes and hat in front of the door and made sure A knew where all her things were and I left for work only three minutes behind schedule.

Then I got behind a m-f’ing semi truck that took five freaking miles to get up to the speed of a mere 40 miles per hour. It took him another five miles to gather enough momentum to drive 50 miles.

No, I wasn’t late to work but it was a close call.

Tom informed me that for all my own frustrations with running late this morning, he bore the brunt of it. The girls’ bus comes anytime between 7:35 and 7:45. This morning? She was on the early side, pulling up in front of the house at 7:36. Olivia had just finished her waffle, got her shoes, coat and backpack on when they saw the bus at the corner. No tooth brushing for her this morning.


I told Tom we would be sure to brush her teeth even more strenuously tonight before bed to make up for it.

I also told him that hey, at least we know she wasn’t heading off to school hungry.

I don’t think he appreciated my bright and sunny outlook on this morning’s festivities. And he calls himself a morning person.

Tuesday, December 6, 2011

Protective Rivalry

Alyssa is a typical big sister. She can get outrageously annoyed by Olivia simply sitting her car seat humming, looking out her own window but in the next breath, she can be telling Olivia how much she loves her.

Olivia, too, is pretty typical when it comes to her little sister duties.

She takes her duty as a hero worshipper pretty seriously. For the first four and three quarters years of her life, Olivia has been content to let Alyssa call the shots.

And Alyssa’s been perfectly happy with that.

Imagine the level of annoyance Alyssa lives with these days as Olivia realizes that she has opinions and she has ways of sharing those opinions. And, worse yet, sometimes Olivia’s opinions differ from Alyssa’s.

Most importantly, Olivia doesn’t always agree with what Alyssa wants to watch on television. Ohh, the drama that ensues.

Alyssa can be bossy. See, in her own mind, she’s ruled our household since the day she was born. And yes, Tom and I are pretty indulgent. So now that she’s having to share tv time and egads, even some of her toys, she’s not enjoying it at all.

And yet, in the midst of all this, Olivia is fiercely protective of her big sister.

Some evenings at my mom’s when I’m trying to wrangle the girls and their stuff into a manageable pile so we can go home, I’ll get Olivia into her coat and hat and boots, with her backpack over my shoulder before Alyssa even has her shoes on. At that point, I’ll take O’s hand and say, “Let’s go, Livie. Lyssie can walk home.”

And then we’ll head out the door.

Alyssa doesn’t give a fig for what I’m saying. She knows darned well that I won’t leave without her.

Olivia, on the other hand, is very concerned that I might be serious. She drags her feet as I pull her out the door, calling out the entire time, “No, we’re not going to leave without Lyssie.”

And because I’m mean, I’ll tell her, “Yes, if we can get out there fast enough, we are going to leave without Lyssie.”

Then I try to move even faster toward the car. By this point, Alyssa has joined us outside, but she has to go the long way off my mom’s deck, because she’s evil. And so she continues to dawdle as I continue to tease Olivia.

By the time I get O into her car seat, A has joined us at the car, but she’s still in no hurry to actually get in the car. So I pretend to hurry, hoping we can still leave without her.

All this time, O is insisting that we aren’t leaving without her sister.

I’ve told Olivia on several occasions that I’d never really leave Lyssie. But she still gets so concerned and protective.

I hope she realizes, deep down, that it’s a game and that she’s just playing her part.

But I do sort of love the protectiveness that rises to the surface when Olivia feels like it’s them against me. I’m absolutely okay with them having a united front when faced with mean parents. That’s sort of the whole point of siblings, isn’t it?

Monday, December 5, 2011

My Big Girl

This weekend, Olivia told me she had to potty. This is actually nothing new these days. She has fewer accidents than she does successes as far as the potty goes. So yay!

So off we headed to the bathroom and obviously one of the other three people in the household had used that bathroom since the last time Olivia had because her Cushie Tushie (the padded ring that goes over the toilet seat to make it smaller and softer for tiny butts) was no longer sitting on the toilet.

She declared, “I don’t need my Cushie Tushie. I’m a big girl.” Then she pulled down her pants, climbed onto the toilet sans the Cushie Tushie. She also didn’t have to use her step stool to position herself on the toilet.

She went, wiped, climbed down, flushed and washed her hands, all without any prompting from me.

Big girl indeed.

This morning was a rarity for me. The alarm went off at 5:50 (not the rare part) and I woke to realize that Olivia hadn’t woken in the night and joined me in my bed where she usually proceeds to push and nudge and kick and elbow her way into owning two thirds of the bed. It was quite refreshing to have the bed to myself.

I got up and managed to be in the shower before anyone joined me in the bathroom. I called out, “Good morning!” to the intruder because that’s just how I am in the morning. Ha! Okay, not so much. But I did call out to her (knowing it had to be A or O.)

I got no response. I called out again. Again, nothing.

I opened the shower door and peeked out. I found a tiny naked butt staring back at me. Olivia had walked into the bathroom, taken off her pull-up, peed in the toilet and was preparing to flush when I looked out at her.

Oh yes, she’s definitely big.

Once I was out of the shower, I handed O her underwear. She always wears underwear on Mondays when she’s off to Gram’s house. She put them on without assistance.

I then tossed her socks at her and they were donned again, without fuss. I did help her with her pants because, well, I was dressed by then and yes, she’s a very easy child to baby.

But her independence streak is getting wider and wider and I couldn’t be prouder of the things my big girl is figuring out all by herself.

Sunday, December 4, 2011

Death By Water

A couple of summers ago I was on my way home from work and, as was the habit back when we were making a commute of 65 miles one way, I tried to call Tom on my way to let him know when to expect me.

Each call I attempted to make went unanswered.

I was relieved when I pulled into the driveway and found him in the garage. He was surprised to see me since I hadn't called to let him know I was on my way.

I informed him that I had called, over and over and over again.

He went on a treasure hunt, the treasure being his phone.

It was nowhere to be found.

Tom traced his steps and eventually found the charred remains of his phone in the burn barrel. When he'd leaned over to put something in there, his phone had fallen out of his shirt pocket and into the fire. It was beyond repair.

Last night he was again looking for his phone. I used my phone to call him. It went to his voice mail before any of us could even hear the ring in order to track it down.

He muttered something about it maybe being in his pants pocket.

The pants that had gone into the washing machine not ten minutes before.

I raced to the basement, opened the washer which was in the agitate cycle and drove my hand into the water, digging through clothes to the very bottom (of course) to find the pants he'd been wearing earlier in the day.

There it was.

I pulled the phone out of the pants' pocket, took it upstairs where Tom took it from me, took the battery and the sim card out and began the drying out process.

This morning, the phone did turn on and when he tried to call me, the call went through, but the little screen fogged up.

The phone, with the battery back out of it, is sitting by one of our registers. We're hoping this time it's salvagable. It could happen.

It appears, in this case anyway, that fire is more destructive than water. I wonder though if the phone had been allowed to go through the spin cycle if we'd be so lucky.

And yes, I did promise to check pockets from this point on when I'm doing laundry. Sigh.

Saturday, December 3, 2011

Then the Tree Fell Down

On the bright side, we get to decorate the Christmas tree for a second time this season. At least according to Alyssa, that's the bright side.

Yesterday evening when the girls and I got home, we were so glad that Friday evening had finally come. We all stomped in from the garage, ready for our weekend to start. I'm sure Tom is always so glad to hear the commotion of his family coming home from a long day.

I went upstairs for something. I don't remember what at this point because it doesn't matter.

While I was up there, I heard a bit of a crash and Tom asked loudly, "What were you doing?"

As I started down the stairs, Alyssa was heading up them.

Tom was attempting to pick up the fallen Christmas tree and Olivia was watching the entire spectacle in awe.

I asked them what happened.

Tom didn't know. He said that Alyssa was looking out the window behind the tree, the tree fell and she took off faster than...well, something really fast.

Alyssa shrugged. She said, "I touched one of the bulbs and then it fell."

Tom and I tried to put the leg of the tree stand back on but I announced it was broken. As in, not going to go back together.

We took all of the ornaments off the tree as it leaned against a corner, looking for all the world like the Charlie Brown Christmas tree before the love of the Christmas Spirit brightened it.

This morning, Tom called me and told me to price Christmas trees at Walmart. Then he called about a half hour later and announced that he'd fixed the tree stand. We can wait until the trees go on clearance to get a new one.


I have since put another strand of lights on the tree and we'll be putting the ornaments back on this evening.

And better still? Jaxon will be here for the evening so his dad can go on a date. The girls love having that boy around and it will be that much more fun to have a third child to help put the ornaments on the tree. Maybe he'll pick one side and Olivia will pick another and we can have a bunch of ornaments on the lower third of the tree but this time, not just one one side.

See? There is a bright side to every story.

Friday, December 2, 2011

December Rules

Before I start this post, I want to thank Statia and Crazy Incognito for their thoughtful comments on my last post. I really appreciate your points of view and I am grateful that you both commented. I also want to say that I think that the school and the teachers make a HUGE difference when it comes to good versus bad experiences with preschool.

Olivia’s first experience with preschool, when she was three years old, was tough. She was small for her age, she was thrown into a class with larger, older kids who were very, very aggressive and there wasn’t a very good teacher to student ratio in that class. My mom was gracious enough to volunteer as the class Grammy so she could be in the class each day that Olivia was. If that hadn’t been possible, I’m not sure we’d have been comfortable sending Olivia to that class.

Her current class, though? Is so, so different. There are fewer kids, the kids themselves are much less aggressive and the ratio of teachers to students is so much more acceptable.

And Olivia loves school these days. She’s older, more mature and absolutely more willing to walk away from me and Tom and my mom and go off to class by herself. This is what she did on Tuesday, when I took her to school because I had to take in the snacks (which included a gallon of milk.) She showed me to her locker, put her backpack in there, got her folder out, hung up her coat, kissed me goodbye and walked away. It was awesome! So different from her class two years ago. We like this class so much we’ve decided that O is going to attend it another year before heading off to kindergarten.

I definitely agree with Statia in her thoughts that it’s much less fair to kids with special needs to thrust them into kindergarten without any sort of preschool to prepare them.

And little J? She absolutely doesn’t seem to be suffering during her time in preschool.

And back to our regularly scheduled programming:
November was kind of a wash when it comes to weight loss. I’ve decided to count it as a good month, though, even though I only lost one pound for the entire months because, well, that’s still a loss and a loss of one pound is better than a gain of one pound.

So I’m trying to be positive here.

I’m facing down December, the month of parties and festivities and celebrations and gifts and giving and love and joy and I’m seeing a lot of fattening foods to go along with all that joy.

But it doesn’t have to be a bad thing for my scale.

I’ve made up some new rules for myself for December.

On days when we have a party or a celebration of some kind, I am going to allow myself to enjoy the food being offered. I am not going to feel guilty for this either. I will eat chocolate and cake and pie. I will also enjoy some spinach dip with sweet bread, thank you very much.

But on regular days, days like today? I will be good. I will eat my breakfast bar, drink my water, have my salad for lunch and my turkey lettuce wraps for dinner. I will not obsess over those indulgent days but I also won’t allow those days to leak into every day of this month.

For now, it’s the best I can do.

Thursday, December 1, 2011


O’s preschool class is on a rotating schedule for snacks. Each child (parent!) receives a letter every eight weeks or so as a reminder that the following week is their turn to bring snacks. Our letter states that while there are ten kids in the class, only nine of them eat.

I guess it was a lucky coincidence that our snack week happened to fall in the same week I planned to take cupcakes for O’s birthday.

While there, I got to watch most of the kids devour their cupcakes. One little girl, though, had a cup of pudding. She was happily eating her pudding when Mrs. F. offered her a taste of the frosting from one of the cupcakes.

Poor little J, who can’t be much older than three years old, was not amused by the offer. She refused.

Mrs. F. tried to hide the yellow frosting in the vanilla pudding. J wasn’t fooled at all. Mrs. F tried to explain to J that her mommy wants her to try new things but J wasn’t impressed with that reasoning either.

I have a picky eater myself. Alyssa likes bologna, hotdogs, macaroni and cheese, corn, raw carrots and that’s about it unless you’re talking about snacks like chips and candy. Ugh!! It’s extremely frustrating. And now that she’s on the verge of nine years old, my patience is wearing thin with her dietary restrictions.

I told my mom about J’s refusal to even try the frosting and my mom wondered why a three year old has to be in school anyway. I pointed out that J has Down Syndrome and so she’s probably in school for therapies.

And it made me wonder. Why do the early intervention programs stop in-home therapies at three years old? This pushes the littlest and often most fragile of our kids out into the school atmosphere so early. We did send O to preschool when she turned three but my mom went with her. At the time, given the school she was attending, we weren’t comfortable sending her alone when she was so very little.

Most of the kids in that class were so much bigger than she was and more aggressive. At three years old, O had only been walking for seven months, so she was still a little wobbly.

These days, two whole years later, Olivia climbs on that bus all by herself and she can definitely hold her own with the kids in her class. She’s still not the biggest kid in the class but she’s not afraid of those who are bigger.

I realize that the social benefits of preschool are one of the driving points for getting kids in the classroom as young as three but I also think that parents need to be the ones who decide when their littlest ones are ready. I know that O wasn’t. Maybe J’s mom feels like J is ready for preschool and if so, I’m glad it’s available. But if she’s like I was two years ago and is only sending J because she knows she needs the therapies that are only available through the school system, it makes me sad.

It makes me think there needs to be some changes made in the early intervention programs that will allow parents a little more say in where their kids receive therapies once they hit three years old. Of course, I’m lazy, so I probably won’t do more than post my thoughts right here. If only I were a woman of action…

Wednesday, November 30, 2011

Breaking Bad Habits

This sleep thing is driving me nuts. (Did I just hear a chorus people say/think, "Oh dear Lord, not another post about sleep or the lack of sleep."?)

Let me say right here that I know this whole thing is my fault. I know. I do.

But something has to give. I’m so tired of waking up three, four, eleven times a night because I’m across the room instead of RIGHT BESIDE Olivia.

I mean, come on! Most parents aren’t even in the same room as their kids and those kids sleep fine, all night long (so I’m told.)

I know I respond too quickly. I always have. I make waking up and then waking ME up too pleasant and they like my presence. I know that.

But I’m tired. I’m so, so tired. I’ve been tired for going on nine years.

So last night I tried. I tried not to respond. When Olivia woke up for the first time at 9:45, I told her gently from the twin bed I was in, “I’m right here. Lay back down and go back to sleep.”

She looked at me with sleepy confusion. Usually, when she sits up, I go to her and lay down beside her and we snuggle up and she goes right back to sleep. But I don’t want to do that anymore. If she wakes up, I want her to roll over and go back to sleep without any help from me.

Consistency is the answer. I know that too.

See, I’m a good parent in my head. I know the right things to do. But then I get tired and I get annoyed and I just want them to go to sleep and leave me alone for seven hours. Just seven. At this point I’m not even trying to get the girls into their own room so much as I just want them both to sleep all night without needing comfort, scratching, snuggling from me.

They’re five and almost nine, for Pete Sakes! I really don’t think it’s asking a lot for them to go to sleep and STAY asleep, or at the very least, just go the heck back to sleep without calling out to me.

So last night, I told her to lay down and go back to sleep. She did so, but I could tell she wasn’t happy about this. And who can blame her? All these years, this soft, gentle mama was there at her beck and call and suddenly, mama doesn’t want to be there. I really don’t blame her for protesting.

However, I also just want to sleep. So she laid back down and closed her eyes, but she was restless.

She woke up again a half hour later. And again, I told her I was right there in the room and she needed to go back to sleep.

An hour after that, she woke up and didn’t just look around, she sat up and cried. I told her firmly, “Go back to sleep, Olivia.”

She cried harder.

I stood (laid?) firm, telling her, “Just lay down. I’m right here. You’re fine.”

Then? Well, she continued to cry and I got petulant. At my five year old. I’m not proud. I told her, “Livie, I don’t want to come over there. I want to stay here and sleep. Please go back to sleep.”

And she continued to cry. So I got up and I stomped around the foot of the bed and I laid down next other and rolled over and pretended she wasn’t sniffling next to me. I was a brat.

But I also didn’t want to make my presence too pleasant for her. See, I want her to not need me next to her for her to go back to sleep. And I reasoned, in my bratty, sleepy state of mind, that if I just laid there but didn’t rub her back or hold her, then sure, I was THERE but I wasn’t so much present.
Make sense?


Not to me either. I was just tired and if feels like I’m always tired and so I did what I thought I had to do so we could all get some sleep.

I’ll try again tonight. I hope to be more patient and less petulant. I hope the be the firm mom instead of the bratty mom. I hope we can all just sleep, comfortably, soundly, uninterrupted.

I tell myself it will take consistency. I have to keep working at it. They won’t need me in the same room/bed when they’re 18 and 22, right? Please tell me I’m right about this. Please.

Tuesday, November 29, 2011


I love going to the school and seeing how my girls spend their days in a place where I am rarely there.

I took cupcakes to O’s class today to celebrate her birthday. They were mini cupcakes because the kids in her class are on the mini side. I had enough for each kid to have two, though, just in case. There were cupcakes with pink frosting and some with yellow frosting.

I was surprised when every single kid in the class requested a pink cupcake. Why was I surprised that the boys also preferred pink to yellow? I don’t know. Perhaps my own gender issues are so deeply ingrained that I expected four and five year old boys to scoff at being offered a cupcake with pink frosting.

The surprise was pleasant though. I love it when kids surprise me.

I’d told O I was coming to her class but you know how five year old memories are. Well, O’s memory, anyway, can be iffy. So she was pleasantly surprised when I showed up with a container full of cupcakes. And then, to her further delight, I STAYED with her in her class until it was time to go home. Wheee!! Mom’s here! She let me take her potty, her let me help her put her boots and coat on and she even offered to let me carry her to the car. That one didn’t happen. But she tried, I’ll give her points for that.

I know we’re lucky to still live in an area where homemade foods are allowed to be taken to school. We’re also lucky to have teachers who are willing to let a parent sit in on the class for 45 minutes. While there, I found out when the Christmas party is and was given the task of bringing cookies for the kids to decorate. Fine motor skills activity! Yay.

As O and I were leaving we saw A in the hall. She grinned and waved, another bonus to being in a small school. Third graders and preschoolers have classrooms next door to each other. I love that.

I wish I were able to be the mom who volunteers for classroom activities on a weekly basis but we’ll take what we can get. I always save a vacation day for the end of the year when the school parties are coming up. I’m lucky I can do that too.

I do realize how very lucky, over all, that I am. Even for all my bitching, I know I have it pretty darned good.

Monday, November 28, 2011

He Can't Say I Didn't Warn Him

I can’t explain just how excited I was when I saw that Fear Factor is coming back to television. The fact that Joe Rogan is still hosting the show is just the icing on the cake.

When he first saw the preview, Tom’s response wasn’t quite as positive at my own. I believe his words were, “I never did like that show.”

I grinned at him and replied, “I did. I loved that stupid show! And I can’t wait to watch it again.”

He left the room not so much in disgust as in resignation.

But! To that I say, I warned him. See, once upon a time I joined a dating website and Tom did the same and he found my profile, emailed me and we started communicating. (I have mentioned before that Tom and I met online, right? No? I don’t remember and am lazy, so, yeah, we met online.)

And right from the start, I told him I love to watch television. I told him I also love movies and reading and long walks on the beach (okay, maybe not that last one.)

Of course, I also warned him from the beginning that, upon reading his own profile, I saw that he was divorced with three teenage kids and if he wasn’t willing/able to have more kids, he shouldn’t waste my time.

Obviously, he was willing and able to have more children and here we are today. And yet, somehow, he seems to think that being married with children might have changed my television viewing habits.

Poor dear, so delusional, so disappointed. Though I say he should count himself lucky that I’ve never watched The Bachelor/ette series. Not because I don’t think it would be entertaining but it’s never really caught my attention like other fluff shows like America’s Next Top Model, Fear Factor (yay!), The Amazing Race, etc. So many shows, so few hours of awake time…

Sunday, November 27, 2011

Counting Our Blessings

Olivia has been enchanted by all the Christmas decorations we've placed around the house. She gazes in awe at the Christmas tree and asks constantly if she can blow out the candles I've lit throughout the house.

We have this snowman shaped jar in which we've put some tiny red and gold bulbs. She loves to carry this thing around, taking the 'hat' off the snowman every so often and pouring out the bulbs only to put them back in again.

A month ago, I asked Olivia to count something for me. There were six of whatever she was counting. She counted them to six and then went back to to start of the items and continued with seven, eight and nine.

Last night she was playing with the bulbs again and I asked her to hand me five of them.

And she did. She counted out exactly five and then handed them to me. I told her to take three back. She did. I then asked her how many I had left and she looked at the ones in my hand and said, "Two." She did this several times with several different amounts of bulbs.

It amazes me what a month can do for a kid Olivia's age. Five is huge.

Speaking of FIVE! Olivia is officially five today. This is the last year she will be able to count her age on one hand. She's counting, she's on the verge of reading (she can site read more words than I can count) and she's working on the projection of her voice.

Of course, when you're the youngest child in your family, you'll always be the baby and O is very easy to baby. But now she's five. She might decide this year that she's tired of being the baby. Then again, now that she can count with deliberation, she may decide to milk this last year of being one hand worth of fingers old for all it's worth.

I can't say I'd blame her at all.

Saturday, November 26, 2011


Yeah, okay, not so much with the shopping. I'm not a Black Friday shopper. I never feel like I get enough sleep, as is evidenced by probably one too many posts here. I am absolulely not willing to lose sleep in order to get up early and go to stores to fight groups of mostly insane people to get things I probably don't even need.

But my husband? He's almost always up at 4am anyway, so off he went on Friday. Luckily, he didn't have to fight a major crowd. He hit our local Pamida and got a new television for our family room. And what do you know? We actually needed it.

Today Olivia and I had to go to Walmart to buy some groceries. While in town, we went ot Menards too. My mom had mentioned that Menards had lava lamps on sale for $4.99. I got two of them, one with red wax and clear oil and the other with white wax and blue oil.

At this point, I have purchased three whole Christmas presents.

And I'm okay with that. There are still 29 days left until Chrismas. Plenty of time to get everything on my list.

How about you? Do you enjoy the competition of Black Friday shopping or are you more like me, willing to give up the 'deals' in exchange for one more day to sleep in. Ahh, yes. Sleep is absolutely my precious.

Friday, November 25, 2011

More Than We Ever Dreamed

We put up the Christmas tree today. The girls went from the tree to the end tables to the counter tops, decorating every flat surface in the house.

As I was draping lights on the tree, Olivia exclaimed over and over, "It's going to be so gorgeous."

And in the end, it is.

This was the first year she was truly able to help hang ornaments from the tree branches. She loved it. She oohed and ahhhed over every single bulb that went on that tree.

Both girls stood anxiously at the door to the garage, waiting for me to bring in each new box filled with Christmas goodness.

And even though we were faced with not one but two dead mice at the bottoms of a couple of boxes of decorations, we plowed through. I lit candles to help cover the smell of death and instead, we inhaled artificial pine and pepperment scents as we continued to turn our home into a Christmas wonderland.

In the end, Olivia gasped, "It's better than we even dreamed."

Alyssa, on the other hand, declared, "We have the smallest Christmas tree in the whole world." This came after visiting Gram's house, where a very large, very bright Christmas tree greeted us from her front window.

Ahhh, Lyssie...someday, you too, can have a huge Christmas tree. Until then? Our small little dream will have to do.

Thursday, November 24, 2011


Today is the day that we Americans give thanks for our blessings. I have so many blessings that I can't possibly list them all.

I am thankful for little girls who announce, "I'm a pretty as a princess." And then, five minutes later are outside playing in the mud.

I am thankful for a husband who toasts me an English muffin each morning just before I walk out the door and then, on one of my few days off, takes care of the above little girls while I sleep for an extra hour.

I am thankful for my mother, who is the best grammy and mother anyone could ask for. She retired when O was a year old so that the therapists didn't have to go to a daycare to work with O.

I am thankful for friends I've known forever who still manage to love me anyway and for new friends who have found their way into our lives.

I am thankful for our home, the one I worked so hard to buy last year. We are so incredibly lucky to be here, in this place at this time.

I am thankful for teachers who are understanding and who have my girls' best interests at heart.

Our lives are so full, so blessed. On this day I want to stop for a minute and think about everything I've been given, everything I've achieved, everything I'm not even sure I deserve. I am just so thankful for this life.

Wednesday, November 23, 2011

My Inner Meanie

I could learn a thing or two from those very kind young women I talked about in the last post. I am not nearly as kind, as nice, as generous as they are.

In fact, I often have very mean thoughts.

For example, I recently read a post on Facebook that was basically a list of things this person had to do before hosting a group of people for Thanksgiving. After mentioning she needed to clean her house, this person went on to say, “But since I just cleaned top to bottom, there’s not much left to do.”

And I instantly thought, “Yeah, you don’t work outside the home, of course you just cleaned top to bottom.”

See, that’s not very nice. I do know that mothers who are home with their children are often very, very busy and that they do, indeed, work, even if they’re not paid for their work.

But the post came across (to my mean brain) as so self-congratulatory that I couldn’t help but sneer a little.

What makes me so mean? Is it envy? Probably a little. But I think that even if I were a stay-at-home mom too, I’d still be a little snarky about a post like that. I’m all for using Facebook as a means to keep people updated on happenings in our lives. That’s what it’s for, right? Heck, I’ve been known to be all braggy about something the girls might have done. But…see, the meanness is coming out again. I have a hard time with the whole, “I’m so good at this and my life is so wonderful and blah blah blah.”

But just because I don’t use social media for that (my blog is obviously proof that I’m not all sunshine and roses even though there are plenty of wonderful things about which I post) it doesn’t mean others shouldn’t. It’s their space.

And yet I’m so mean about it in my own head. Now, I’ll give myself a little credit. I don’t comment on posts like that telling the poster what a jerk I think they are. That would be more than mean, it would be rude. But I also don’t bother ‘liking’ those kinds of posts. I wouldn’t want to encourage the very things that make me the meanest.

Tomorrow I promise to be grateful, to ruminate on all for which I’m thankful. I just needed to get the mean out of my system.

Tuesday, November 22, 2011

The Nicest People

While it’s evident from my last post that I’d give up dance marathons if it would give O back the missing part of her chromosome, since that’s not going to happen, I’m going to gush about some of the most amazing college students I’ve ever met.

And see, I WENT to college, so I’ve met quite a few college students in my day. Heck, some of the college students I met back when I was a college student are still my very best friends.

But these students? The ones who put their hearts and souls into raising money for Riley Hospital for Children and putting on the best party a five year old and an eight year old have ever been invited to, those college students are amazing.

Two in particular have made a lasting impression on A and O. Ally at Indiana University and Hayli at Purdue University.

These two young women made it their goal during the weekends we were on their campuses to ensure that Alyssa and Olivia had fun. They were amazing. They put aside their very busy schedules and spend every minute we were at their respective dance marathons with us, making sure we were fed, were entertained, were first in line at the bathroom.

Seriously, it is amazing to me that they are so selfless.

Now, I know that there are a lot of amazing 18 -22 year olds out there but there are also a lot of selfish ones. We just got really, really lucky to meet both Ally and Hayli.

Not only did they get Olivia gift bags, they made sure Alyssa was included. That warms my heart more than you can know. To make sure the sibling of the Riley kid feels special too goes above and beyond. They didn’t have to be told that sometimes it’s hard to be the ‘typical’ sibling of a ‘special’ child. That sometimes, the typical kids feel left out when everyone is gushing over the special one. They seemed to know instinctively that all eight year olds want to be noticed too and they did that. They did more than notice Alyssa, they pulled her in and made her special too.

I will be forever grateful to these two young women who danced with Olivia, found other students to do cartwheels with Alyssa, who brought us water and found us pancakes when O was so hungry she was reverting to sucking her thumb.

All of the students who do the dance marathons are wonderful. I watch the others play with the other Riley kids and I’m warmed by the generosity of the human heart.

The ever lovely Julie likes to say that you can always tell the families who are new to dance marathons because they’re the ones who still watch their own kids. The families who have been there a few times know that the college students are there to entertain the kids.

And it’s true. Well, unless you’ve got kids like mine, who want to be able to see Mom at all times. But most kids are happy to let their parents go off somewhere because these other, younger people are there to take care of them.

Ally and Hayli do for us what Riley hospital itself does. They care for the entire family, not just the patient.

Alyssa asked me last night if Ally was going to be ‘our girl’ again next year when we go back to Bloomington. I told her that Ally is graduating this year and heading off to New York.

Alyssa was a little sad but perked up when I reminded her that with Ally starting her new job and new life, it opened the door for someone new to get to know her (Alyssa) and Olivia and how great is it that we get to make another new friend?

She did ask if Hayli would be ‘our girl’ at Purdue and I said maybe so. Hayli is a freshman this year, which gives us a chance to see her for another three years. If she wants.

I’m hoping all this exposure to the love, the generosity of others inspires my girls to give back as much as they’ve been given. Of course, like Julie, I also want them to actually attend class when they’re in college. Dance marathons take a lot out of the students. I just hope they give back to them too.

(Yes, look at me, assuming O will someday be in college. It is not outside the realm of possible. I’m just saying.)

Monday, November 21, 2011

I Lied

After I shared Olivia’s story of becoming a Riley kid at the dance marathon this weekend, one of the college students who puts their heart and soul into planning and executing the amazing events that are the dance marathons came up to me and thanked me for sharing our story.

I told him I loved doing it. I nodded at Olivia, who was spinning and dancing around the room in her Barbie Princess Charm School dress and thanked him for all that he does and how he and his fellow planners manage to make the weekend about kids like Olivia.

He told me that it was Olivia and all the other Riley kids who inspire him and the work he does.

I asked him what his major is and it is pre-med. I told him I wasn’t surprised.

He went on to say that he wants to go into research so he can continue to help people.

I pointed out that when your child is diagnosed with a genetic disorder as Olivia was, there’s no cure but that having an answer is sometimes all you need.

Then I lied to him. I said, “I wouldn’t change her anyway.”

That’s a lie. I’ve written before that if I could give O the part of her chromosome that is missing I would. In a heartbeat, I’d give it back to her.

See, we were all caught up in the love that dance marathons inspire. We were being all philosophical and dreamy and isn’t life grand and how lucky are we to have this opportunity to change lives?

But…in the everyday scheme of things? I’d give it back to her. I’d take away the challenges she faces. I’d take away the low muscle tone and her soft voice. I’d give her a strong, loud voice and muscles that do what she wants them to do without so much effort.
I do not think that the missing part of O’s fifth chromosome makes her who she is. I don’t think it would change the essence of who she is if she had all of her chromosomes intact.

Olivia is the girliest girly girl who ever twirled. And she’d be that same twirly girly girl even if she had all of that fifth chromosome. She’d probably just be more twirly, more steady on her feet, louder when she sings Taylor Swift songs.

She might not be a Riley kid and we might not get to go to all these amazing events where she and her sister are treated like celebrities but you know what? I’d trade those things in an instant if I could give O back her complete independence, her fullest potential.

I know that her potential is already pretty good but she has already faced a few challenges and will face more in her life. I’d take those away. I’d ‘fix’ her, if I could. I just would.