Friday, December 31, 2010

Happy New Year.

I feel as though sometimes, when so much happens, it's hard to even comment upon anything. But it was a busy week in Atlanta. Celebrating Christmas with family. A close family member in the hospital for half our trip, with a dozen visits back and forth - feeling much better now thankfully. Much laughter and a few tears. Much needed time with family and friends.

And at the end of the hectic rollar coaster of our week away, we ended the trip last night in my parents' living room, filled with extended family, guitars playing, songs sung loudly and happily. We were our version of Brady Bunch Christmas special indeed, but what a moment to enjoy with the grandparents down to the littlests.

And now we're back in the NYC in time for New Year's. Not that we have anything on the agenda for tonight, besides crashing exhaustedly at some point (hopefully soon, although Lilly and Jon are armed with sparkling cider).

And what a trooper my girl was today. Jon had left Atlanta a few days before us, so today it was just me and Lilly flying back. Which is not unusual for us to be flying alone together, but still, I always get a little nervous. Checking in: simple. Security: piece of cake, she even took off her coat and shoes, got her own bin and put them inside, and retrieved them and put them back on all by herself on the other side. A hop on the tram to the B gates, perfect. Waiting for the plane to take off: uh-oh, a delay. Delay after delay after delay, and suddenly we're almost 3 hours delayed. But Lilly was good. I amused her with everything in her backpack, she ate a bagel and drank milk, we played with stickers and read books (ok, I'll admit we read Us Weekly and People - which by the way, is her new favorite - but I did in fact have children's books with me, she just prefered my mags instead...). We walked around, went to the potty a few times, and entertained strangers with her signing and personality. We even watched all the bags get loaded on the plane. So the huge delay wasn't exactly fun, but Lilly totally made the best of it. So it wasn't bad at all.

And then we got on the plane. And she read the Delta Sky magazine, buckled her own seatbelt, and settled in for the flight. The flight was finally taking off, and as the plane rolled down the runway.... Lilly's eyes shut and she got a much needed nap. Perfect timing. And despite a couple restless moments (it's not totally comfortable sleeping on a plane, even if you can fold into a pretzel like my Lilly), she didn't actually wake up until after the wheels touched down at LaGuardia. Perfect trip. We waited our turn to get off the plane, she agreed to get in the stroller, and we went to baggage claim. Bags were out 15 minutes later, and we somehow made it outside with two huge suitcases and me also pushing Lilly in the stroller. Thankfully a guy in the 2 hour long taxi line felt sorry for me and decided to help us to the car service pick up area (which I felt slightly guilty about to the guy who headed back to the two hour taxi line, but hey - nice to plan ahead from my end!) and our car arrived a few minutes later. We arrived back to the apartment with Jon meeting us downstairs, a Sam Adams Light waiting for me upstairs, and a pizza on its way to be delivered, leading to the perfect evening - including watching Muppets Take Manhattan - a Lilly favorite.

I am so very grateful that Lilly is not just an great traveler, but such an easy companion for me. It certainly is helpful since we are on the road (or in the air, I guess) so often!

Happy New Year.

Monday, December 27, 2010

Life's tough (sometimes)

Occasionally, every now and then, there's a hard moment. Trust me: it's easy being Lilly's mom. Easy to love her, easy to care for her, easy to enjoy all the beautiful moments.

But sometimes, occasionally, a good friend will say the "R" word. Or someone close will, in "humor," make fun of someone with intellectual disabilities. Or a well-meaning parent will excessively brag about how smart their child is; how gifted they are; how ahead of the game.

These moments bring me back to square one, almost. All the efforts we make to ensure Lilly is included, appreciated, acknowledged for being her amazing self - are almost swept away by the realization that the world is somehow still running on the fast track, and we might get left behind.

We work so-damn-hard to give Lilly everything she needs in life - we teach her, we support her, we creatively think of a million ways to enhance her abilities so that she can survive and thrive in a world that is seemingly stacked against her. And she is doing so incredibly well, and we are so tremendously proud of our little girl for all her efforts.

And yet, randomly, she can be looked at and casually dismissed as not being good enough for not doing this that or the other yet. Or not saying this, or thinking that, or doing the other. Yet.

But, oh does she try so hard. And if sometimes she wants to get upset because something is too hard, how can I judge? Life is sometimes tough for a little girl who is constantly struggling to remain with the curve somehow.

And if I'm a little sensitive sometimes: let me. My girl is the most beautiful amazing person I've ever known, with such strength to keep trying in so many ways even when life is hard; and yet the world overall still just sees her deficits. The things she needs to work on, or can't do yet. Or sees her "limits" (whereas I just see potential...).

And yet, incredible gratitude. Not just for having our wonderful girl in our lives - that is a given. But that she has stretched our hearts and minds to places unimagined a few years ago.

But still. Sometimes, sometimes, it breaks my heart - just a little - that my girl might ever have to struggle, or not fit in easily. Or that she or others like her may be prejudged or mocked or laughed at - to their face or not - for no reason at all.

But don't worry. Because my worry, my fears, my occasional sadness - they are not "what is." What is, is that I have my precious little girl. That our little family will continue to appreciate the heck out of each other. That we'll spoil her - in time, energy, and especially in ways that involve giving money to the Disney corporation in some way or another. I just want to protect my girl from everything hard in life, in whatever ways I can. But I know, with her heart, and her soul, and her strength - she can deal with whatever comes her way.

Thursday, December 23, 2010

5 years ago today

5 years ago today Jon and I walked into our 3 month pregnancy doctor's appointment, cocky and excited. An hour later we left with news we hadn't anticipated, tear-stained cheeks, and black and white ultrasound pictures of the most adorable blob baby that would ever exist. Our bubble had been burst, we thought. We spent the next few hours contemplating what our future held, absorbing the news, and keeping the faith that we would make the best of any situation - all while going through airport security, surviving a 3 hour flight, and making our way through the Atlanta airport to see my parents on Christmas-eve-eve.

There were prayers that day - for when life hands you a curveball, I turn to God. The "less than 1 in 5 chance that your baby has Down syndrome" diagnosis on that day - we knew. We absolutely knew in our hearts it was our child definitely had "it."

And we didn't know what "it" was besides vague stereotypes.

We did not consider abortion, although it was pushed on us, and over 90 percent of people in our position go that route. As such, we did not even really consider an amnio - because we would not do anything with the information, why risk our precious daughter's life?

And a month later, we found out - it would be a daughter. A little girl I had always planned to name Lillian after my beloved grandmother - a girl who would grow up with her strength and her heart and her humor and her dance moves, for sure. (And she did.)

But on that day - 5 years ago today - our vision of our life was just a little broken and we quickly put it back together into a new beautiful picture.

And wow. The past 5 years have been AMAZING. I don't use that word lightly, although I do use it all-the-time when talking about my gorgeous daughter.

We knew it 5 years ago and I am certain to my core today: she is no accident. She is not a mistake. Her little body was created with an extra chromosome in such a purposeful way. I egotistically sometimes think it is to make my life so much brighter, but her purpose is so much greater than that: she was put on this earth to show the world how amazing God's love is. I feel certain that she walks closer to Him than most (even though she has a hard time sitting through mass!).

And along the way, it has been the greatest adventure of my life. The things she has opened my eyes to. What she notices, what she appreciates, what she learns, what she accomplishes. The hearts she touches, the places she loves, the people she reaches out to.

Down syndrome is a part of her but I don't see it as a negative. I am proud of it, proud of her.

I wish 5 years ago that we hadn't shed a tear. I wish we had fast-forwarded a month to feel her dance in my belly, the same crazy moves as my grandma. I wish I could have seen how beautiful she was a year later on her first Christmas, and the way she looked into my soul when I held her. I wish I had understood that, while I formerly loved Disney, that I would LOVE Disney after watching her experience it through her eyes. I wish I had seen her living overseas like a true Kiwi, loving all the playgrounds on the beaches, and adjusting to the laid-back lifestyle. I wish I had seen her completely loved by the women of a remote Fijian village I wish I had seen how cute she looks in hats, and how her favorite color would be pink, hands down. I wish I had seen how adorable her hair would look braided, and when I do it in a special style, that she'd run to the mirror and give herself a look like "I know I'm hot stuff!" I wish I had seen her loving Broadway musicals more than any person ever has. I wish I had heard her contageous laughter, and her cheeky grin when she's trying to get away with something.

But after that day, I did get to appreciate all this. I've watched relationships grow with her cousins, true friendships develop with so many children, a strong bond with her daddy and her grandparents. I've watched her first ballet recital, and her ride a horse every week last year. I've seen her made-over at the Bippity Boppity Boutique and charm every princess at Disney World (but of course she prefers every prince). I've watched her learn complicated choreography and song lyrics for the purpose of performing Zac Efron's or Meryl Streep's latest movies. My girl is AMAZING.

But the best part of her - is not our wonderful adventures or her complete beauty or her passion for life. But it is instead, the 10 minutes we spend together every night before she falls asleep. When we lie in her room, talk about her day, discuss the next day's events, sing silly songs, hold each other's hands. When we say our goodnight prayers. When I sing "You are my sunshine" and Lilly belts out the lyrics loudly along with me. When we have our tender moments, me and my girl that I've raised since she was a little piece of nothing in my belly. And most nights, if I'm lucky, I wipe s0-grateful tears away during the process.

Lilly is amazing, and I am so very lucky. I wish I had read this, 5 years ago today.

Wednesday, December 22, 2010

In the kitchen.

In the spirit of creating beautiful childhood memories, baking Christmas cookies is definitely on the "to do" list.

We've made chocolate chip cookies a lot, and homemade pizza, and a variety of other things in the kitchen, but never tackled "Christmas cookies."

In fact, aside from baking with my mom when I was younger, I don't think I've single handedly made Christmas cookies even without Lilly.

So, time to learn. And by the way? Since we are temporarily in NYC and have only the items in our house that were gifted to us by my sister (which trust me, is a ton of stuff, but we don't have everything), we have no mixer. So, Miss Lilly has to improvise - we "mixed" with our hands! (Great occupational therapy, I'm thinking!)

Here is my girl with her fake "Glee" inspired smile: (The story behind the Glee smile is this: Lilly has a "cheese" smile that doesn't really show a good smile, plus she always looks away when she smiles that smile. But, she watches the show Glee regularly, and a few weeks ago "Rachel" was encouraging "Kurt" to smile during a performance and pointed to her mouth with a big smile, and then he did a huge smile while singing. Anyways, Lilly loves watching that and smiling the same way, so when I tell her to smile like "Glee" she does the below smile - still fake of course, but more genuine than that "cheese" business.)
And Mrs. Claus had an extra helper as my little elf was not that interested in rolling the dough:


Here are some of the cookies cut out:




And a certain little girl tasting the buttercream frosting as she was mixing:





Then we added red and green food coloring to the frosting. Lilly was in charge of "red" and it turned out more pink, but of course Lilly didn't want to add any additional red - pink is her favorite color.
Notice that there are way more green than red (pink) cookies: because Lilly was in charge of the "red" she ate most of her portion of the icing! That's my girl!
It was definitely a lot of fun baking with my girl. She is a great little helper, and we had a great night. She was on somewhat of a sugar high when it was time for bed, but she still managed to kneel next to me and say our nighttime prayers. I've wanted to get my girl into the habit of praying before bed - we usually say a little prayer, but I want her to be more involved. So last night she got on her knees beside me and I said our usual prayer "Dear God, thank You for mommy, daddy, and baby Lilly, thank you for Christmas cookies, and (can't remember what else I prayed for)" And then I said "Lilly, your turn" and she said "Dear God, thank You for mommy, daddy, and baby Lilly, thank you for Christmas cookies... " and when she finished she said a big "A-Men!" Love that girl!
And by the way: this week I discovered Trader Joe's. I've never lived near one, but they are great - so many cheap things, especially for New York City, where groceries are typically 3 times the price of "normal." Here is my favorite purchase the other day - a "guacamole kit." No strange powders, like a most grocery stores - just a box of a tomato, small onion, lime, jalapeno, two avacado's, and garlic - all for just $3 or so, plus the recipe. We ate it with our veggie flaxseed tortilla chips. A-ma-zing. Even if I have to ride the subway to ge there (I'm a total transportation snob), I will be back!




Tuesday, December 21, 2010

Spoke too soon

I had to gush about our weekend. About how insanely amazing Lilly is.

Apparently, Lilly read it. And said "mommy, I will keep you on your toes."

Yesterday she was crazy. Not all day: but our routine was disrupted. First, we had no electricity all day (due to the fire our building had last July after we moved in; so they were rewiring all the apartments). This didn't matter to Lilly because she went to school, but for me, I didn't really want to stay in a dark apartment all day. (I did it last Thursday when they were also rewiring - it was cold and dark and I couldn't get anything done.) And, another parent and I made plans to get the class gift for all the teachers in Lilly's class. So, since we were shopping on the West side, I decided to pick up Lilly. Lilly, by the way, is not a fan of the cold weather. So when I picked her up, she didn't want to walk home through Central Park (it's about a 30 minute walk and was about 30 degrees). So, we hopped in a taxi.

We got home and Lilly just vegged. She's not napping anymore most days, since school gets out at 2. But she is so super exhausted in the afternoon and evening. Her body honestly needs the rest, but the later in the day, the harder to nap. Plus, she has speech two days a week so there wouldn't be time to nap anyways.

Let me also mention that she went to bed late the night before, and woke up early yesterday morning. So my girl was exhausted. And, speech called and asked if she could come an hour later, at 4:30. Which is almost at her dinner time and she would be even more super exhausted.

Is that enough of a set up? So anyways, we spent the extra hour hanging out and Lilly watched Sesame Street. Then, it was time to go to speech. By this time she's exhausted, and she hates the cold, and it's a long cold walk to speech. I told her she could watch Mamma Mia when we got home, and she grudgingly got her coat on for speech.

When we get to speech, Lilly is happy usually, and today is no exception. She picked up a copy of the latest New Yorker magazine, got in a chair in the waiting room, and started "reading." 10 minutes later, she went into her therapy session.

When speech is over, I'm supposed to go back to the room and get her. Lilly was NOT happy. She didn't let me in; held the door shut. Then when I came into the room, she flung her body against the wall, hitting her head, crying "no mommy." (Can I also disclose here that I'm actually a good mommy, and Lilly actually typically likes me, despite this tantrum?) But, she was exhausted, and there is some kind of disconnect when it's time to leave speech, and it's clearly getting worse. Finally I picked her up, calmed her down a little, and carried her out to the waiting room. And in the hallway she starts flinging herself again, including into the doorway - hitting her head yet again.

At this point I'm frustrated. "Lilly! Calm down!" She is crying and completely beside herself. I don't think she even know what she was fighting at this point, but she was just a total nut. She relaxes a little, and I tell her we need to put on her coat. "No coat, mommy." But she puts it on. Then time for the hat, gloves, and scarves. It was absolute torture. I tried reasoning with her. Pleading with her. Threatening her. (Which involves "no Mamma Mia" and "no tv" - not actual horrible threats but usually things that make her get going.) I tell her the fun things we'll do when we get home. But she is not in a reasoning mood at this point.

Finally I get her winter-ed up, and into the stroller. And as she sits down, I look at her and say: "I am really disappointed in your behavior, Lilly." Which made her face break down and she started crying again. I told her I was sorry, and that I loved her, but she needs to be better behaved when we leave speech. We hugged and made the long cold walk back home.

Ugh. Hate tantrums. They are not that frequent, especially at this level. And I felt like such a bad mommy for Lilly being so sad, and I couldn't understand what was so wrong - besides the fact that she was just so tired.

Normally, it's fairly easy to get Lilly to make the right choices. A few months ago, we introduced time out. But it's a modified time out. Basically, Lilly doesn't like being told what to do. She likes choices. So the way time out is handled, is: if it's time for a bath, or time to go to the potty, or time to go to bed (all things she doesn't mind doing - but hates actually stopping what she's doing to go do these things), we give her a choice: "Lilly, do you want to go potty or do you want to go to time out?" We say it nicely, it's not a threat or a bad thing: it's actually just something that gives her an option. And she will most definitely pick "time out." So, we get a chair, put it at the front door, and she sits there for about 4 seconds, quietly. And then she gets up, and goes directly without a problem to whatever it is we had asked her to do. Basically, she needs to sit, regroup her thoughts, and decide for herself that she wants to go potty or to the bath. Of course, since I'm saying publicly that this works so well, of course Lilly will read this and decide tomorrow that she no longer likes this method and rebels.

But I think, for speech tomorrow, I might try this "time out" option when we leave. Hoping it will work!

By the way, Lilly was such an (exhausted) cutie when we got home. She was watching the movie Mamma Mia (of course) and when a certain song came on she sang along, loudly and clearly, looking directly at me: "Don't go wasting your emotions, lay all your love on me." Point taken, Lilly. :) And when her head hit the pillow last night at 7:30, my little tired girl fell sound asleep immediately, and didn't wake up until 7:30 this morning (when I finally had to wake her up for school).

Sunday, December 19, 2010

Just Your Average Sunday

Sometimes it's hard for me to write. Because most of the time I want to write about how Lilly is so amazing. About how she is magic. But it's somewhat redundant, I think. How many posts can be about Lilly's amazingness? And how do I put into words what I experience every day? The feeling like my heart will almost burst when I watch her do or say the absolute cutest things. The way she touches my soul with a certain look or when she says "Love you too, mommy." The way she appreciates the world in ways that I never knew possible.

Of course, nobody's perfect. Our Sunday started with Lilly being kind of obstinate. She didn't want to do what we asked. She didn't want to eat breakfast, sit at the table, get dressed. "Lilly, do you want to see Santa? Do you want to see Mamma Mia?" "No!" she would reply. It actually wasn't all that bad; she just had her opinion on what we were doing for the day, and it most definitely involved Elmo's Christmas and did not involve doing anything else. But instead we turned off the TV, ate a bowl of grapes, danced along to Christmas music, and got ready for our day.

Which included Santa at Bloomingdales. We walked the 13 blocks over to the store and took the elevator up to the 8th floor to see Santa. He started seeing guests at 11 am. We got there are 11:10. We waited an hour and a half to see him. It was insane. The line wasn't super long; but he was taking forever with each family! Which was nice, but not for the people waiting! Lilly was going crazy waiting, so she ran laps around the department store. Literally.

There was a family in front of us with a little girl, maybe age 3 or so, and a newborn (10 days old!). They were patiently waiting along with everyone else; the girl wandered around with her mom or dad just like Lilly did, while the other parent waited in line. Finally, it was their turn. The mom and dad picked up the little baby and went over to Santa. Meanwhile, little girl freaked out. Threw herself down on the floor. Cried and sulked and was mad and was a complete mess. She was so well behaved in line; but I guess a 90 minute wait can do that to you. They never did end up getting a good picture with Santa. Sad!

So then it was Lilly's turn. Witnessing the little angel who turned into a mess right before my eyes, we had no idea how Lilly would do. And of course, she likes "characters" and does well interacting with princesses, etc, but going over to Santa and sitting on his lap? No idea how this might turn out... But, here you go:

She was appropriately happy and excited, thank goodness. She knew it was important to suck up - I mean, be respectful - to Santa. She sat on his lap, told him what she wanted for Christmas: "Elmo" (not surprised, but the whole time she was in line she kept saying she wanted "a toy"). She let us get a ton of pictures, and gave good smiles. (The smiles are actually fake, but they look better than her alternate "cheese" smiles because she practices smiling good fake smiles because of Glee.)

So Santa? Success. Next on the agenda, a quick lunch. McDonald's. Another clear success. A chicken nugget Happy Meal for Lilly, a chicken salad for Jon, and french fries and a milkshake for me.


Then we walked 20 minutes across town to Broadway and 51st to... Mamma Mia! Along the way, we passed this and snapped a quick shot:


Lilly was THRILLED when she saw the Mamma Mia sign. My girl is by now quite familiar with Broadway and shows. She's loved Lion King, Mary Poppins, and Radio City Christmas Spectacular. She's always loved entertainment - live music, the circus, Disney on Ice, and Elmo Live - but Broadway has stretched her appreciation to new limits.
And she loves the movie Mamma Mia; she's memorized it. Loves Meryl Streep, loves Amanda Seyfried, loves the music and dancing. Here she is with huge anticipation, waiting for the show to start:

And it didn't disappoint. And neither did Lilly.
Here is the interesting Mamma Mia fact: Jon and I saw the play in Vegas 7 years ago. I loved the music, and thought the play was good. Not amazing, not the best thing ever, but good. Jon doesn't even remember seeing it, which shows how impressionable it was on him. Then two years ago, we saw the movie in the theatre in New Zealand. Again, we thought it was good but weren't blown away. (Part of the problem was the fact that the Kiwi's sitting next to us had a slightly different humour than we did: at parts when we were serious, they were cracking up - and vice versa.) But then we bought the movie and Lilly watched it on dvd for the first time: and she fell in love. And started singing Abba. And dancing like a... dancing queen, obviously. And this was when she was just 2 years old. And ever since, it's been in her movie rotation, of good movies that she gets so excited to see.
And then today, Jon and I saw the play, again. Lilly's first time seeing it. And we loved it. It was such an incredible experience. Watching Lilly's face light up. Listening to her sing along. Seeing her laugh at jokes, whether or not they were kid-appropriate. Hearing her add her own little commentary occasionally - at one point she said something funny loudly right after an actor did something - and the whole theater laughed at what Lilly said.
Lilly truly comes alive at times like these. Not that she doesn't in "ordinary" life but - you can see this is her passion. These are the times we realize how incredible her mind is; how deep is her joy for life. Lilly's little 5 year old friend came along with us. She liked it, but wasn't blown away like Lilly was. 20 minutes from the end, she was asking when it would be over. She was ready to go. Meanwhile, Lilly never wanted it to end. The people around us, even, were half watching Lilly's reactions to the show, because her expressions were priceless.
I'm not exaggerating. And I can't adequately describe Lilly's magic; but I've certainly tried to paint her portrait. Let's just say, while budget cuts are being made in our household, entertainment must continue to be a priority for us.

Lilly grudgingly left the theater 20 minutes after the show was over, promising the empty stage that she'd see it later and that she loved it.
As all goes well in Lilly's World, of course the next thing we encounter when walking down the street to catch a taxi is this:
Random Elmo? On a street corner? And we weren't even on "Sesame Street"! He was just a little creepy, but friendly enough, and happily took a picture with my little eager princess. Then we put two bucks in his stocking.
Then, still looking for cab's (it's crazy nuts in this area, complete tourist trap), we went down a street and stumbled upon Rockefeller Center. I saw the huge tree ahead, and told Lilly: "Look!
Can you stand here and take a picture in front of the big tree?"
Well, my Lilly gives all trees equal opportunity, so instead of posing in front of the famous tree, she finds a bush with lights and says "Cheese."

I then, again, pointed to the huge "official" tree and say - can you stand in front of that tree and say cheese? And she walked a few steps and found another potted bush and I took another picture in front of it. Oh well...
But then we managed to sweep her up, and trusted a man who joked about stealing our camera to take our family picture in front of the real big tree:


After this, we jumped in a cab and went down to Lombardi's, NY's first original pizza. It's like 100 years old or so, and we've wanted to try it for awhile. It was definitely good, but not amazing - I'm glad we tried it but probably wouldn't go all the way downtown again. But, we have lots of great pizza in our neighborhood as well. However I am definitely a fan of the history of pizza, so it was an important occasion.
We ended the day with a subway ride home. When we got in the Spring Street subway station, two guys were playing a guitar and a set of key's (literally) and singing (and asking for money). Lilly was dancing up a storm, and I gave Lilly 4 quarters and she put them in their box. During the next few minutes' wait for the train to come, they played "My girl" for Lilly.
The day ended with Lilly taking a bath, and crashing in her bed - deep sleep within minutes. Love watching my girl enjoy life to the fullest!

Monday, December 13, 2010

A real weekend

There are about 100 reasons that I am no longer working: they all amount to the main reason which is our quality of life. Sure, it is really nice to have a second salary: we could afford the vacations I seem to regularly crave; we could eat out a few nights a week. We didn't have to worry about sticking to a strict budget. But, our lives were chaos. Especially this year. Jon's crazy hours; Lilly's school situations; my hours extending into nights and weekends. We never had time to get anything accomplished. We were struggling for family time, struggling to get laundry done and the house organized. Jon would take Lilly out for a few hours by himself each Saturday and Sunday so I could work and get the house cleaned up. And I wanted to be part of it, wanted to enjoy family time with my family.

I woke up on this Monday morning and the house was a mess. Papers, toys, clothes everywhere. Total chaos. And I wondered, am I failing, now that it is my sole responsibility to get our lives under control?

But this past weekend, we had a weekend. The three of us hung out together, with my sister, brother in law, and nephew at their house in New Jersey. Jon didn't work. I didn't work. Lilly had lots of fun. We had family time and I shopped for inexpensive groceries at a New Jersey grocery store. (Because NYC groceries are outrageously expensive.) We came back last night exhausted and happy. We spent time with Lilly, she went to bed, and Jon and I read books and watched tv.

This is the quality of life that we were aiming for. Because I wasn't working until midnight last night. And Jon wasn't busy getting stuff done around the house, because he knows I'll take care of it this week. And Lilly was happy because her parents were happy. So waking up to a mess today: it wasn't exactly nice but knowing we had a great weekend, and knowing I can get things under control today was completely worth it.

I'm still somewhat sad about my early temporary self-imposed "retirement." Our situation led us here, and for Lilly and our family I would give up anything. I like being part of Jon and Lilly's weekend plans. I like that we are slowly but surely getting control back over our lives. I like that Lilly ate spinach not once but twice in the past week, because I had time to figure out how to sneak it in her food. This is what life is about, at least for the next 6 months... And just want to confirm: we do not yet have any idea where we will live come July 1st. But hoping we will find out soon!

Friday, December 10, 2010

The Best Morning.

Rewinding 2 months to a beautiful October day in Orlando.

It was the last full day of our Disney trip. Lilly had spent most of the week going to the parks with Jon, with my parents, with her cousins, while I worked during the day.

In the spirit of not taking precious time with my precious girl for granted (and the temptation of being at the happiest place on earth), Lilly and I planned a special morning for just the two of us at Magic Kingdom.

It actually requires little planning on our part. We've done it so many times now with me, Jon and Lilly that we could write our own Lilly's touring guide to Disney World. Put in the day, time of year, time of day, and theme park, and I'll tell you which attractions we do in which order, to experience the maximum fun potential.

But yet it's always so special each time.

If there is a free morning to spend at any of the theme parks, and we've spent time at all 4 already, I will hands down always pick Magic Kingdom. With a few caveats: we get there right before opening, and don't stay past noon or 1.

And so it began. Lilly and I woke up late, of course, and got ready quickly. We were staying off property for most of the trip (although Polynesian concierge for the first night - amazing as always), so we hopped in the car and raced over to Magic Kingdom, about a 15 minute drive door-to-door. We were running late, and the key to the whole experience is arriving at or before it opens.

We pulled into the Magic Kingdom parking lot at 10 minutes til opening (at 9). Which would be good except we still weren't close. From there we had to take a tram to the Ticket and Transportation center, and then either a monorail or boat to Magic Kingdom's front gates. So we hopped out of the car (at the very last spot in the row), ran to the tram and hopped on it. A few minutes later we were at the Ticket and Transportation Center, and in the excitement and craziness of hopping off the tram (with Lilly, our stroller, and our bag) my knee caught on something and started bleeding. A lot. Ouch! (Better me than Lilly though right?) But we kept moving, had to get to park entrance by 9! We ran up to the monorail, got on it, and 2 minutes later were arriving at Magic Kingdom entrance. We caught the opening show right as it was ending. We rushed through security, flashed our annual passes, and were in the gates.

We were a minute late, but not a big deal. And of course, Lilly loves excitement so when we are rushing and it's all crazy, the better for her. :)

It's at this point where we have to make a decision. Our usual touring plan includes Astro Orbiter as the number one priority of the morning. If you don't go on it first, the line gets crazy long. (Even though most people I know don't even know it's a ride, but there is always a huge slow line.) It is debatably one of Lilly's favorite rides - it spins around fast high above the park, with views of the Castle, Space Mountain, the Contemporary, the monorail... If we go first thing in the morning, there will be no line (although 15 minutes later it's a huge line); so either do it now or forget it. (That is the other theory behind our touring plans: lines are just not worth it - if a ride for a kid Lilly's age is 2 minutes long on average, what is the point in waiting a half hour to go on it?)

But, I made an executive decision. We NEVER go on Dumbo. Because we don't wait on lines. We tour smartly so we avoid the lines at all cost. And if you are not one of the first people in the park in the morning, Dumbo has a huge line. But, Lilly had been on Astro Orbiter earlier in the week with Jon, and hadn't been on Dumbo this trip. So, as a sacrifice for my daughter I figured we'd take the risk of waiting in line and go on Dumbo. Which meant this was really a special morning for us.

Lilly was in the stroller and I RAN as fast as I could down Main Street, through the Castle, and on our way to Dumbo. It was 9:07(ish) and there as a 25 minute wait for Dumbo. And this is the shortest the line will be all day, so I looked at my beautiful girl and said "what the heck, let's do it."

The line ended up being a good 20 minutes or so, but Lilly was thrilled. The anticipation of Dumbo is almost as great as the ride itself. She was thrilled to get in her flying elephant finally, and we spun around for 2 minutes until it was over. Happy girl, she was.

I forgot to mention, I realized when we got on the tram a half hour earlier that my camera battery was dead. Ugh. So no pictures, but thankfully due to PhotoPass we do have pictures from the day with characters, etc. But I couldn't capture the day on my own camera.

So, once Dumbo was over we were at a crossroads. It was 9:30. Traditionally we stay in Fantasyland. I don't take Lilly on Snow White (Jon does sometimes, but it's too scary for me!). Peter Pan was on the other side of Fantasyland, and It's a Small World and the Teacups were closed. So, Winnie the Pooh it was. We waited in a 5 minute line. When Lilly saw the Pooh vehicle show up (they are yellow) she put her arm out and said "Taxi!" We jumped in and she loved the ride.

By this time it was 9:40-9:45ish. The next best part of our touring plan is always Toontown. Which opens between 9:45 and 10. It is again one of those places that you want to be right when it opens in order to experience little to no wait. We stood for 5 minutes at the front before the let everyone in - a huge crowd of people ran towards the Princess and Fairy meet and greet. They both usually have an hour or more wait, with the Fairies sometimes having 90 minutes or more. If Lilly cared about the fairies, we'd do them first; but she doesn't and the one time we met them was kind of anticlimactic. (She was actually kind of scared of the male fairy.) So, instead we ran to the Princess line. We were second in line, which made us really excited. We waited 5 or 10 minutes until the princesses themselves came to the front of the line to bring in the first guests of the morning. Exciting! (Note that while this was my first time this trip doing this with Lilly, Jon had taken her earlier this week to meet the princesses here - plus she had seen them at two character meals earlier in the week - so while this is most definitely my favorite day ever, it's just a normal magical princess meeting day to Miss Lilly. But she still loved it.)

First was Sleeping Beauty:



Then Cinderella, which is debatably her favorite.








And then Belle, another favorite. (And all favorites will be blown away later in the afternoon when she sees Snow White.)





The princesses are so amazing with kids. They make such a fuss over Lilly. She truly feels like she is a princess meeting a fellow princess; seeing an old friend again. They know just what to say to her, and she reacts accordingly with huge smiles. She tells them her name, how old she is, and while she is shy to their face, she is so super excited. So, a successful meeting.
Lilly was still grinning ear to ear when we walked across to Goofy's Barnstormer. It was about 10:10, and there was barely a line. (Again, another ride where there will be a huge line a half hour later.) So, we walked up, Lilly got measured, and we got on the ride without a wait. Lilly was thrilled. She loves roller coasters and this one is just the right speed and excitement for my little girl. It's actually faster than it looks, and is quite the thrill. Lilly was only ok with it being over because I promised we'd go on it again. We ran to the front, she got measured again by the same guy who measured her 5 minutes earlier, and we were back on the ride. Again she was thrilled and asked to go on it again. Why not? It's mommy and Lilly's special morning. So we ran to the front, this time the guy remembered us so she didn't have to get measured, and we waited in line. By this time, 10:20, the line was 10 minutes long. We went on the ride again but decided not to go on it a fourth time. Actually, I decided not to go on it a fourth time; Lilly was still trying to convince me a line is not a big deal. :) But instead we walked out of Toontown, stopping at the potty for Lilly on the way out.
Now, mommy had something up her sleeve. Lilly had seen so many princesses already; but she hadn't seen Tiana (on this trip). Tiana is another favorite. (They are all favorites, right?) We had only met Tiana in person on the Disney Cruise last December, and this was mommy and Lilly's special day, she had been on every possible ride earlier on this trip, and so our number one goal was meeting Tiana. We headed over to Liberty Square and asked a cast member when and where Tiana would appear. It turns out we just missed her, but she'd be back at 11:15 (or 11:30 or 11:45? Can't remember now. It was about a half hour away from the current time.). They recommended getting there early because they can only let so many people see her at a time.
So, we had about 20 minutes to kill. We walked towards the Castle as we heard music. It was the Castle show starting - Mickey and Minnie, the princesses, singing, dancing, fireworks - perfect. We never stopped to see this show before because we're always on our way rushing somewhere. But this was the perfect place and time to wait until Tiana. The show was great, Lilly loved it.
Then we ran over to the Tiana line - she was scheduled to appear 10 minutes later and we were about 10th in line. Turns out, if we were much later we wouldn't get to see her - they only let about 10 families in behind us. Finally it was our turn.
This was an even better treat because Tiana was there with Prince Naveen. And boy, does Lilly have a thing for Prince's. Again, I cannot say enough about the characters. They are so amazing. Tiana was so warm and sweet; but Naveen stole Lilly's heart. She was crushing hard. He made her feel comfortable and happy and gave her he biggest hug (twice!). I was originally going to hop in a picture with them but Lilly was so happy that I didn't want to steal her show.





At this point it was noon-ish and we needed to get a quick lunch and get back to the hotel for a nap. So, we took a couple pictures in front of the castle, then went to Cosmic Ray's. This is a huge counter service restaurant, and we got in line to order our food. Lilly saw people hula hooping nearby and asked to get out of her stroller. Sure, I said, as I ordered my veggie burger and her chicken and french fries. The food came up and I grabbed the tray, pushed the stroller with one hand, and tried to get Lilly away from the hula hooping. She was kind of resisting but coming with me and then a man walked by and bumped my tray off balance and my diet coke went flying. Seriously? I literally started to cry. But Disney World is an expert at making things ok. Literally in seconds three cast members were at my side. One took my tray, another started cleaning up, and a third went to get me another diet coke. The first walked Lilly and I to a table, and the third person ran over with my drink. Lilly meanwhile was saying "you ok, mommy?" Yes, Lilly, I really was ok, thanks to everyone helping us! I can't imagine what I would have done if everyone hadn't helped us out so quickly. Lilly and I ate our food quickly and efficiently without further chaos, and made our way out of the park.

What a great morning with my girl. She was back in the room asleep a half hour later, and when she woke up my parents took her to Epcot, where I joined them at 5:30 after work.
The biggest highlight from the night was meeting Snow White. Lilly was dressed in her Snow White dress, and we ran to Germany where we were literally the last people they allowed in line to meet her that night. We waited patiently, and finally it was our turn. Lilly was so happy to meet her (yes, another favorite). And Snow White was (again) so amazing with Lilly. I posted the video of them a few weeks ago. Best part ever was Snow White telling Lilly to never forget that she can accomplish all her dreams no matter what (or something like that) - I started crying, it was so touching. So glad I have it on video, Lilly loves watching it. Here are some pictures.






And then we saw Sleeping Beauty.





Disney World, thank you for creating such wonderful memories for our family.

Thursday, December 9, 2010

What is normal?

We are almost halfway through our New York City year, and the past 5 1/2 months have adjusted me fairly well to city life. I wouldn't say that I'm a real New Yorker, or that I love the city, but I've adapted, and I know how to live here now.

I think I'm having an identity crisis. Or not really that, but living in three completely different way-of-lives in the past 3 years has kind of messed up what I think is normal. Is living in the middle of the South Pacific in a little house on a cliff overlooking the water normal? Is living in a small university town in our white picket fence house normal? Is living in a high rise apartment building with a lobby and doormen normal?

None of these are normal, to be honest, from the couple who grew up most of their lives in the suburbs of Atlanta. We are used to traffic, big shopping malls, spacious houses, lots of friends and family nearby; but since we moved to Charlottesville 8 years ago we've had to adjust. And that change was hard enough, I thought, in living in a small town (which was made oh-so-easier once we got the Target 4 years ago). We figured out how to live without chain restaurants and department stores, we discovered it was actually nice to walk on the Downtown Mall and run into people who know our family. Life without traffic definitely had it's charm, as long as you knew not to drive around town during UVA football Saturdays.

And New Zealand threw everything off. We no longer had conveniences like working heat and air conditioning, and our dryer took 3 hours per load of laundry. Everything was super expensive, and our lives were (literally) upside down. But we adjusted, we met great people and saw beautiful sights and even got used to driving on the "wrong" side of the road. We learned to order a flat white instead of a coffee with cream, and Lilly enjoyed her "fluffy." And we adjusted our internal clocks to a more laid-back lifestyle.

And right when we were finally getting used to things, we were back to Charlottesville, which reset our "normal" meters. Work, daycare, friends on the weekends. Getting back to the "luxuries" like our beautiful Charlottesville house, the pool in our neighborhood, and of course, our local Target. Having a washer and dryer which actually worked instead of taking hours and hours per load. Driving to Whole Foods and Harris Teeter to pick up anything we needed. Little Gym, ballet class, and horsebackriding for Miss Lilly. Friendly faces, family life, university town.

And reset again. New York City. I wouldn't say it's the most unfriendly place ever because that's not exactly accurate; we've encountered people who are perfectly nice. And it's not exactly "cold" (although the weather is). I think the thing about New York is that it's hard to live here, generally - it's crowded and busy and cold, people are living in small spaces and not having the normal conveniences of a non-New York City life. So I can see why people quickly walk down the street with a frown on their face, not making eye contact, and ready to go off at the first person who gets in their way. Because New York is dirty, it's hectic, it's expensive, it's cold (did I mention that?), and it's exhausting.

But so many people live here and love it, overlooking those things. Because you can order any kind of food to be delivered to your house at any time of the day or night. You can go to the most spectacular shows in the world, with the most talented singers, dancers, actors. You can see people from all over the world, both living here and as tourists. You can witness the beauty of the Christmas tree at Rockefeller Center, and while we're not in Virginia, we can experience trees and horses in Central Park.

So, like in New Zealand, and again back in Virginia, we are now experiencing sensory overload in Manhattan. Lilly has reprogrammed her normal meter so that if I tell her we're going in a car she shouts "Yay, a car!!!" because it is so not a normal thing to her anymore. But walking a couple blocks in any direction to a playground is normal. Living in a hotel-like atmosphere with doormen to greet her when she walks through the door is normal. It's not normal to have a backyard or walk across the street to her friend's house, but it is her new normal to push the elevator button ("eighteen!" she says). And this year, it is sadly normal to her to not have a real Christmas tree in her apartment, but instead to have a huge Christmas tree and Hanukkah display in her lobby. Which we visit every day, so she can get her holiday fill.

So, we are adjusted/adjusting to our new normal of this year. We don't have Christmas lights or my company breakfast with Santa, but she did have her Radio City Christmas Spectacular with the Rockettes and today is on a field trip with school to the Rockefeller Christmas Tree. We don't have a subdivision to drive though to look at Christmas lights, but we do have lots of holiday lights throughout the city streets. It's even odder to think that two years ago at this time, we were celebrating Christmas in the New Zealand "summer," wearing sundresses and shorts in the warm weather. I guess some things will never feel "normal."

Wednesday, December 8, 2010

A New Day

We've never done this before. It's a completely new experience for me and Lilly. A little girl who's had every experience in the book - living overseas, Broadway musicals, dinners with princesses - did something I never imagined she'd do, and I am so completely proud. This is what not-working is all about.

She got up this morning. And played with new "color cards" that I made for her. (Matching colors with the written color names.) And then she sat at the table and ate breakfast. While we listened to Christmas music. And then she went on the potty, got dressed, and we got her stuff ready for school. I did her hair in pigtails. She put on her coat and we went downstairs to wait for the bus.

What is the amazing part, you're asking? We do all that every morning, right?

It's what I didn't mention. No word about turning on Elmo or Zac Efron's version of Hairspray. No Grease or Glee or Play with Me Sesame.

My girl did her whole morning routine without the tv. Wow!

Not that she's a tv addict, but her morning tv is a what usually assists us through the routine. Usually we have about 45 minutes to get up, get dressed, eat breakfast, and get out the door. In the morning Lilly is not a fan of "getting things done" so TV is usually the bribe or the distraction to get everything else accomplished. "Eat your breakfast, Lilly, mommy will turn on Sesame Street." But not today.

Lilly and I talked. She colored with markers. She asked to go to the bathroom. She told me she hated her new backpack and we went back to the huge oversized one that is way too big for her. We negotiated that she would put on the warmer coat that I wanted instead of the not-as-warm coat that she prefers (because it's pink). She put her milk in the fridge when she was done.

I won't say that I broke the girl of her Elmo's Christmas fixation or that we'll never watch Camp Rock again in the morning. But it would be nice to have more mornings like today, where a mommy and little girl do their daily routine without a crutch. Because it would be easier to turn on the tv, let Lilly get fixated, easily get her dressed, and check my email and drink my coffee while my girl eats her bagel. But much more rewarding for Lilly and I to be active participants in our day.

Thursday, December 2, 2010

Two weeks

Two weeks since my last day of work. Two weeks since I last had a computer. I turned my company laptop back in, and Jon was out of town in Montreal. Then he came back for a day then back away again to St. Louis. Then back the night before we headed to Atlanta for Thanksgiving. We got back to NYC Saturday, and by that night he had downloaded a virus and the computer headed to the Geek Squad at Best Buy.

And... we're back.

I've realized, first, that I can totally be fine without a computer. As far as the daily life goes. The past few days of not working has led me to clean and organize (a little - we're still "moving in" in some ways even though we've been here 5 months, because we never had time to truly settle), to cook and shop, and to nurture my little girl and spend time sitting next to my husband on the couch at night.

It's been nice. It's like, I've not only lost the daily stresses of work, but I've lost the distractions that random internet-ing has brought me. I've focused on what's important to us, and appreciating the little things.

But, what I haven't done, is blogged, organized pictures online, ordered our Christmas cards, researched recipes, and downloaded the audio to Lilly's new Tag Junior. So, glad to have the computer back.

I have a lot to say, now that I have the time to think. So I'm hoping I'll take the creative energy and time and actually put my thoughts out there more frequently.

But the biggest thing that I've noticed in the recent days is, wow I love my daughter.

When it comes down to it, however much my job was getting round the clock stressful, and however much our school situation had changed and our lives were getting chaotic, the overall reason that I left my job is that I needed to not take work out on Lilly anymore. NY had given us too much to handle, and Lilly is 4 years old once. I could no longer brush her aside for work. It wasn't fair to her.

So in the week I've had to truly appreciate my little gift, it's been better than I've imagined. Sure, she's devious, a little nuts, tricky, cheeky, and mischievious. If I ever had to be in charge of a war against another country, I'd have Lilly be my number one general, as she is so good at assessing the enemy (aka, me and Jon and bedtime, usually), knowing the strengths and weaknesses, and going all out warfare against us - and not in a horrible way, but in a "I'm going to win at all costs, and you won't even know it's coming." And then she goes to be late yet again, and I'm struggling to wake her up at 7:30 am while she pulls a teenage ducking-head-under-the-covers move...

But that's not where I'm going with this. She is as clever as can be when she "needs" to be, but the real beauty of Lilly is the majority of the time when she is just incredible to watch. I can't tell you how many times in the past two weeks that I've thanked God with tears in my eyes for the experience to live with this girl and witness everything she has to show to the world. Truly amazing. I love that I get to be there for her through her happy and funny and sad and angry (don't mess with "Elmo's Christmas" on dvd, she will truly show you a different side of her!).

I love my girl. But I especially love now having the time to really appreciate every part of who she is.

Thursday, November 18, 2010

Money and monkeys

Lilly's two favorite things: money and monkeys. She loves all kinds of money: coins, dollars, and credit cards. And she definitely loves her Curious George monkey.



(Lilly doesn't usually sit in a carseat in the middle of the living room - but we had an extra one here for a few days, and in a small NYC apartment we decided to make it a piece of furniture since there was no where to store it.)


My favorite thing about Lilly loving money and monkeys is when she mixes up the words and says that she "needs monkey" when really she wants a dollar bill; or when she wants to dance with her "money" instead of her monkey. Her monkey, by the way, is her favorite dance partner when reenacting Dancing with the Stars or Sound of Music. And he's great at kissing scenes.




Oddly enough, she's never seen the show Curious George and rarely reads one of his books. But I think it's just the fact that he's the right size to be a prop for her. And trust me, it's fun to hear her say: "Where's my monkey?" all the time. (And sometimes "Where's my money?")

Regarding the other favorite, money, Lilly is a huge fan of holding it, talking about it, paying for things, swiping cards, wanting to go to atms, and holding purses which must contain a little money. With her newfound interest comes my interest in making it somewhat educational. So last night, we took a cup of coins and dumped it on the ground. We sorted through it, looking for quarters. Lilly would see a quarter and say "quarter." Then we went to pennies, and again she says a good "penny." Then I'd hold a quarter and a penny and she'd name which is which. Then we made lines with them, and an "L" out of quarters for Lilly. Finally, I showed her how to put them on a piece of paper and pick it up and slide the coins into her cup. She loved it.






Wednesday, November 17, 2010

Radio City Christmas Spectacular











Lilly's face lit up like a Christmas tree - her smile shining huge, her eyes bright with excitement. After every song, enthusiastic clapping, glancing over at Jon and I to make sure we found it as breathtaking as she did.

Lilly should be in a commercial for everything she does. Her passion for appreciating things overflows.

We got tickets for the Radio City Music Hall Christmas Spectacular, thinking it would be something fun to do while we're living in Manhattan. Lilly loves the theater, she loves the music and the dancing and the energy of it all, so we knew she'd have a good time. She proved that she's theater-worthy when she saw Lion King and Mary Poppins both on Broadway. And I knew she'd like the Rockettes because she loves the scene in Annie when she's at the theater watching them dance. But still, it surprises even me when Lilly surpasses my high expectations.

It helped that there were other children sitting around us, asking for snacks and if it was time to go yet, pretending that they had to go potty so that they could take a break from the show. It proved once again that Lilly's passion for live performances is not to be taken for granted; this is a four year old who really appreciates it.

The commercial for the show is a little girl beaming, with the Rockettes dancing behind her. It is cheesy, for sure; but Lilly was the image of that little girl. The show itself was really good; I even teared up as the live camels and sheep led the shepherds and wise men to Baby Jesus, as Lilly watched on, wide-eyed. And she loved the scenes with Santa - especially when he flew across the stage. But the Rockettes, with their syncronized dancing, and all the songs - captivated my little girl.

Afterwards we walked through Central Park and ate waffles at a sidewalk stand. Magical morning.

Monday, November 8, 2010

A Sunday Afternoon

Lilly has a new friend. She and Lilly became friends on the playground and Jon and her dad did too; so now Lilly has an occasional little playmate for an afternoon out on the weekends. Yesterday they went to the Metropolitan Museum of Art (of course - where else do little city girls go for a playdate?). This little girl is 5 years old, attends one of the best private schools, is learning three foreign languages, is enrolled in classes at an elite ballet school, and is Lilly's new best friend.

There is pressure in Manhattan, according to the dad, to do everything and expose your kid to everything - it sets them up to then attend the best high school and attend the best ivy league university. Which will get them an amazing career and life, I'm sure.

These are the pressures in New York, and possibly everywhere, although not to this extent. Which is why the better schools we looked at for Lilly were not accepting in NY - they looked at a little girl with Down syndrome to be the black ink on their white party dress. And this is why the ballet class we looked into denied Lilly access because, as the teacher explained, the other parents would be mad because Lilly would ruin their recital if she didn't perform perfectly. From our limited exposure to the NY education system, at the preschool level, it's all about setting the bar high - and in turn weeding out those who can't keep up with the crazy pace. Integration for kids with varying needs does not exist here; kids like my Lilly are bussed off to special education schools - separate but equal, right?

I sound bitter, but I'm not. New York isn't for us, on a long-term basis, and we made our peace with that months ago when the system started unraveling on us. A little girl who had incredible experiences in normal preschools prior to this year was suddenly categorized as needing to be in a highly structured special education class in New York - it's not Lilly, it's the system here. And don't get me wrong, I like Lilly's new school, the teachers, the principal - but for Lilly at her age with her abilities, it's not appropriate.

(Side note: When we brought up the point during Lilly's IEP meeting that she's always done great in regular classes and had great results in evaluations until this year in NY, a professional said something along the lines of: "Well, kids aren't as smart in the South." Really, said the neurosurgeon and lawyer, both from Atlanta...)

So it is what it is, for the next 7 months, but it's definitely interesting as a cultural study. I think everyone in New York is under intense pressure. The parents are all working stressful jobs to afford everything they can possibly provide to their kids so that their kids can get into the right schools and become high power people with high pressure jobs.

Jon said to me last night, that the dad of Lilly's friend was talking about the pressures to have his daughter in all the right things, and it sounded to me a little bit like creating the perfect resume - but again, she's 5, so it sounds slightly ridiculous to know that she's fluent in Mandarin, Spanish, and Greek. Right?

And then there's Jon and I, merely struggling to find a decent school in New York where she wouldn't get physically assaulted and bullied (again), a school that believes that Lilly is a valued member of the classroom and has every right to be there.

In some ways, we have it easier. I don't know what we would have been like as parents if we didn't have a child with Down syndrome. (Note the distinction, that I'm not saying I don't know what Lilly would have been like if she didn't have Down syndrome - that is a thought path we've never gone down, for good reason - Lilly is every bit the person she was intended to be, and even now typing this I couldn't begin to imagine her even slightly different than the beautiful amazing little person she is, and I wouldn't want to anyhow.) But back to the point: for Jon and I, if we had been parents to, say, ourselves - would we have fallen into the trap of overachieving our child before he or she was even tall enough to ride a roller coaster? Would we be contemplating the most prestigious colleges before he or she were even born?

I don't know. Lilly set the standards for parenting pretty high for us, and her priorities include making sure that she is happy, super loved, and has the best of everything - meaning great family and friends, fun vacations, tons of laughing. I wouldn't say that we haven't gone overboard the same way these NY parents have in our own way - Lilly's been in her share of extracurricular classes - music, ballet, gymnastics, sign language, horseback riding - and she's definitely been spoiled in the travel department.

But I think the difference is, all we want for Lilly is for Lilly to be Lilly's best Lilly. (You can read that twice - I think it does actually make sense.) I will encourage Lilly in her dreams, pave the way, provide the assistance and resources, and be her biggest fan. But it's on her terms. And that, my friends, is the most beautiful part of the journey. The beauty of watching her blossom. The pride she has when she does something (these days, everything) by herself. She is life's greatest gift, and most important lesson.

So Jon and his dad friend watched Lilly and her best friend at the museum, and at the playground. They explored books and exhibits together, they went on the swings and the slide, and ran around laughing. They held hands walking together down the street.

A 5 year old little girl with all the pressures of the world on her shoulders, who someday, if her parents push her enough and society grooms her well, will be at that Ivy League school, probably with a Master's or Doctorate in something. And a 4 year old little girl who, contrary to society's limitations, will thrive and teach the world more than they could ever learn in books. Hand in hand, enjoying the city together on a Sunday afternoon, each appreciating the best in each other. Unaware that they have just made the case for the importance of inclusion.

Friday, November 5, 2010

Mamma's Girl

Lilly's never had a "bad" age, but 4 is definitely my favorite so far. She is just so much fun!

She is talking so much. My favorite is when I say "I love you" and she says "I love you too!" Or when I give her a kiss and she spontaneously says "Love you!" The. Best. Ever. She's also so inquisitive - "What you doin, mommy?" And "Where's my daddy?" My favorite thing to do is, when I put her to sleep, we have a nice long chat about her day and it is such a sweet conversation. And I especially love the spontaneous things she says - "I want Lion King." (The broadway version, which she saw with Jon last month.) I reply: "Do you want me to take you to Lion King?" And she says: "No, I want daddy Lion King." (Daddy is her favorite, still.)

She is the perfect little four year old companion, too. Lately we've been cooking a lot (1 because we're on a new budget and 2 because I want Lilly to see what it's like to have family meals/cooking etc). And Lilly loves to help, especially if it's baking. She made delicious pumpkin bread last week, and cheese biscuits this week. And she made excellent pizza last week. She doesn't want any help with what she's doing. She wants to pour the ingredients in the bowl, stir it, etc. And she has such pride in what she does. I'm proud too!

Lilly is still the alphabet queen, and loves telling me what words begin with different letters, and says each letter she sees. She likes singing the alphabet and saying the alphabet and signing the alphabet and writing "L's" and "I's" and occasionally "Y's" (which are all important in Lilly's name, obviously).

She's still opinionated about what we do (i.e., bossy) but I've realized she wants to be in charge and make decisions, so we now give her lots of choices. Instead of telling her to put on her coat to go outside (which she won't want to do), I ask her if she wants her pink coat or her green coat. She picks pink, happily puts it on, and bops outside. If she really doesn't want to do something, the option is: "Do you want a bath or just go to bed?" She'll always pick the option that isn't going to bed. But she's good about bedtime too "Do you want to do stickers or read a book before you go to bed?" And we'll do the stickers (which she LOVES) and then off to bed easily. We're in a phase where she's not taking naps as frequently but we get a super early bedtime. Her new school gets out at 2 pm so it's much later if she actually was to nap. The only downside is that she's exhausted around 5pm, but we'll see how it goes. Without a nap, she's in bed at 7, which in theory is nice, but it makes me sad to not have a companion to watch Dancing with the Stars with me.

Miss Independent still loves her purse, and money, and on Tuesday I put $5 in her purse and we went down to the little gourmet grocery store around the corner and she walked the whole way, knew she was going to get milk, picked out which milk she wanted (with a little direction, she originally wanted whole milk because it was red - which is close to pink - but I convinced her we needed 1% instead, even though it was blue). We took it to pay for it, she gave the man her money, got the change, and she happily walked home, proud of herself.

She also continues to hail taxi's nonstop. Which is great when we need one, but when we're just taking a walk and she puts her arm up and says "taxi!" and one stops for us, it's a little embarassing. Spoiled little NYC girl! (She does like the subway as well, but moreso with her father. We can pretty much walk everywhere we want to go, which is good under our new budget.)

And her school adjustment: she's doing ok. She has separation issues so she's sad when I leave her at school, but I think she likes school when she's actually there and doing fun things. Unfortunately her class only has 2 other girls, but a few of the boys are very friendly so I think she's making friends. I can't say that I would hand pick this school out of every school I've ever seen, but it's definitely the best school that we saw in NY (actually I liked one better but they didn't have a spot). Lilly's previous schools in C-ville and New Zealand were definitely my favorites though; hoping we can find a school in our next city that is just as good. But I like Lilly's teachers and the principal and they do fun age appropriate things, and I think Lilly will have a good rest of the year here. She just started taking the bus this week - it's a mile and a half to walk to school, through Central Park, and I loved the walk, but with the cold winter weather and rain and snow, it's impractical to have Lilly out in that weather every day. So, she's getting on a school bus all by herself now - which breaks my heart a little - but she likes it, I think. She likes it less in the morning, but she really likes it in the afternoon and is proud of herself. In the morning, I've been putting High School Musical stickers on her shoes to make her happy and keep her busy while she's on the bus - she can look at "Troy" and "Gabriella" and smile.

And that's my Lilly. :)

Sunday, October 31, 2010

Happy Halloween 2010

Lilly celebrated Halloween this year New York style - which means walking the streets, collecting candy from random stores and down the halls of tall apartment buildings.

We started out with Lilly's aunt and cousins; but Lilly didn't want a costume. We picked out Snow White for her (who she absolutely loves) but she wasn't impressed. Probably because it's a costume in her everyday costume trunk so it's not special; besides she had just worn it recently at Disney World. So, she walked the halls of her cousin's apartment building just wearing her winter coat, but still got tons of candy. Highlight was hanging with 3rd graders who hooked her up with extra candy. She managed to pose with a random mask along the way.



We headed back uptown to our apartment, where there was more trick or treating in our building. Here's how it works: you get a list when you go into the building of which apartments are accepting trick or treaters. In our building of 36 floors, most of the floors had at least one apartment participating. I was determined that Lilly would actually wear a costume this year. So, when we got home, I sifted through Lilly's costume trunk and picked out a pink fairy (from New Zealand) and a pirate costume (from our Disney cruise last year for Pirate night, but Lilly never actually wore it). At first Lilly didn't want a costume but when I gave her a choice, she picked the pirate and we threw it on her with a big bow and at 6:30 on Halloween night, Lilly's costume was chosen. But she was adorable!

She loved trick or treating, especially knocking on doors and collecting candy. Best treat of the night was definitely the pencil she collected early on. She was thrilled.











After walking 36 floors, she and Jon returned and we ate pasta and salad for dinner, she watched part of Camp Rock 2, and she had a nice relaxing bath - all without touching a piece of candy. Not to be a horrible mom, I decided to let her have at the candy. She sorted through each piece, and I wondered if she really appreciated that all this was her sugar, ready for her to sample a piece or two. Yet my girl didn't let me down - 79 pieces into her hunt, she found a Hershey's milk chocolate nugget and went to town. This girl is patient but she got what she wanted.
All in all, a successful Halloween.