Thursday, July 22, 2010

Becoming a Princess

Becoming a princess is not easy! Here are the pictures of Lilly at the Bippity Boppity Boutique at Cinderella's Castle. I know it's slightly ridiculous but it was such an amazing time. She loved being made over (she is a sucker for makeup and nail polish) but the bigger deal was how much attention she got. She understood it was truly a special experience and it was definitely worth it.

Wednesday, July 21, 2010

Down Syndrome, Off the Clock

This is from Dave Hingsburger's blog

Down Syndrome, Off The Clock

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

Sunday, July 18, 2010

A few more Disney World pics from last month:

With a band in Liberty Square
Snow White!
After Lilly's hair cut on Main Street

Banging the drums in Epcot

Little Mermaid


Jasmine said "What's your name?" Lilly said "Lilly" and signed an "L"
Snow White! (again)

Thursday, July 15, 2010

The Truth About Down Syndrome

The misconception is that having a child with special needs is hard, or even a burden. I don't know about other special needs or other kids, but raising Lilly has been relatively easy. Sure, it hasn't been a cakewalk moving to New Zealand, moving back to Charlottesville, and moving to New York. Or being a single-parent many nights while my busy husband is working; or juggling my own full time job with daycare. But the reality is that Lilly's needs are not all that special.

Lilly is a child just like any other. Sometimes she's a good eater and sometimes she's picky. Sometimes she loves her bedtime routine and sometimes she's trying to manipulate one more Hannah Montana before shuteye. Sometimes she loves going to school to see her friends and sometimes she'd rather be home with her mommy.

Her quote "special needs" and the way they relate to her daily life are more like the special needs of any child. All parents are trying to teach their kids things; she's learning shapes and letters while other kids are learning to read - is that so special as to be burdensome? She learned to walk a year later than the average kid - but it was nice to have her not-as-mobile for a little longer, and since she was two she's been running nonstop. Lilly had heart surgery 6 months ago but instead of feeling like it was a hardship on our family, we were praying our hearts out that our little girl would mend 100% so she can live to 100 and bless our lives for a long time to come. Her needs, her differences and her similarities, are just a part of who she is, of our daily routines, and we don't think of her as being all that "special." Lilly is just our little girl.

But here is the little known fact: Down syndrome does have its burdens, but not as you'd think. What has been more of the issue is other people and their reactions. For some reason, people want to classify Lilly. They'd like to take her and analyze her and place her as being deficient in some category. The Down syndrome label, for some, seems to take away Lilly's abilities and makes certain people focus on what she can't do. They want Jon and I to be worn out as parents because of how hard the "special needs" make our lives.

It's just not our reality. Our lives are so much fun, and the reason is because of Lilly, not despite Lilly. Our world is bright and colorful in ways I never imagined pre-Lilly.

For typical children, people don't seek out what they can't do; they are more often taken at face value - they have strengths and weaknesses and mostly are just "kids." Lilly is just Lilly to us, she is not a problem to solve or an issue to analyze. Our hope is that the world will look at kids with special needs and realize that they are just as unique and normal as any other child.

That is our struggle, our burden, of having a child with Down syndrome. To have others look at our Lilly the way we do. We don't mind fighting this battle; Lilly deserves that basic respect. You don't need to worry about Lilly, she is fine. Now all we need to do is change the world.

Wednesday, July 7, 2010

Welcome to NY

Welcome to NY, home of my blog for the next year.

It's been busy couple weeks! We left Charlottesville two weeks ago, and headed to Disney World. Thank goodness for that mini vacation, it was wonderful to get away in between moving out and moving in. Yes, Florida was 100 degrees every day in June and the crowds were busy bordering on panic-attack mode at times, but we've perfected how to do a laid-back, get the maximum enjoyment out of each day at Disney-vacation. Favorite moments included Miss Lilly dance on stage at the Luau; watching my little girl get made over into a princess at the Bippiti Boppity Boutique (especially the look on HER face as she got made over); seeing Lilly's expression when she would meet a princess or Mary Poppins or Micky Mouse, etc; and especially relaxing on the beach at the Polynesian with a view of the castle, while Jon and Lilly played in the pool nearby. As always, I love our family vacations - not just because we're enjoying where we are and what we're doing, but because I love spending so much quality time with Jon and Lilly - time we don't usually get together in our daily busy lives.

Last Monday we got on a plane to New York City. It wasn't as nervewracking as getting on the flight to New Zealand two years ago; but there it was definitely comparable somewhat because we got on a plane with just a few suitcases to begin our new lives in a completely different city.

Last Tuesday we moved into our new apartment, and we settled in and explored our neighborhood for the next few days. Then over the weekend we went to New Jersey for the weekend with my whole family.

And then yesterday. Lilly started at her new school. Honestly my first impression was not so good for a variety of reasons but we're giving in another try: but for $25,000/year (which is standard for daycare in NYC) I'd like to be a little more impressed. I picked her up at noon, and she took a nap in the afternoon. My work schedule was a little chaotic since I'd taken so much time off to move, so Elmo was Lilly's babysitter as I struggled to get everything done. We ate dinner at 5:30, and by 6:30 I was feeling a little guilty that I had ignored Lilly all afternoon - I wanted her to get out of the apartment for a little bit. It was 100 degrees in the city, but Jon and I decided to take Lilly out - maybe walk around, find a playground, do something outside before bedtime.

So we left our apartment and walked down the hallway to the elevator, and the elevators were out. And the hallway smelled smokey. And we looked in the stairwell and it was solid white/gray smoke. Huh. Is our building on fire?

We live in a 36 story apartment building, and our apartment is on the 18th floor. We walked around the corner to another stairwell which was not smokey. We had no idea what was going on but decided to walk down the 18 flights to get out. Around the 6th floor stairs we ran into a lady who told us there was an electrical fire on the 24th floor. We got down to the lobby and it was solid smoke, with a bunch of firefighters. Huh. We ran through the smoke to get outside, and there were crowds of people with their clothes over their faces to not breathe in the smoke, and the doormen had their vests over their faces. More firemen, lots of firetrucks and ambulances. So yes, in fact, it was a good decision to evacuate the building!

We hopped in a cab to my sister's neighborhood, and hung out there for a few hours until our building said we could come back in. We took the cab back around 9:30 pm (Lilly fell asleep on the way back) and when we got inside our apartment, it was 100 degrees. Apparently the air conditioners and refridgerators were still broken, and half the building didn't have any power at all. *Sigh.* An hour later the power went out completely in our apartment and we started researching local hotels on our cell phones. But finally the power came back on around 11:30, including the air conditioning, so we got ready for bed and went to sleep. What an exhausting day!

So here we are today, hoping Lilly's second day of school will go better, and that there is no excitement or electrical fires today! It's going to be a nutty year, I'm thinking.