Monday, November 14, 2011

When in Rome, or NYC, or wherever Lilly goes

It continues to blow me away how many life experiences Lilly has. We spent the weekend in New York City and New Jersey visiting family. Being back in Manhattan again was like coming home to Lilly - which is so funny to me. She's totally at home, hailing taxi's, seeing Broadway shows like it's no big deal, eating sweets at Dylan's Candy Bar at 10 o clock at night. The usual, for this little girl.

And then seeing her interact with her newborn baby cousin in New Jersey - loving him and feeding him and holding him and singing to him and telling him stories: "Hi baby. My mommy is beautiful and my daddy is a doctor. The end."

And going through two 5 hour car trips in a 48 hour weekend like it's no big deal; we didn't even bring snacks or drinks for her in the car. She played her iPad, listened to music, napped a bit, just a laid back little girl.

And then this morning, asked me: "Can I go on a ride with daddy?" And funny that I can respond: "Yes Lilly, we're going to Disney World in 3 weeks. Is that ok?" And a sigh from her, as she's thinking "I'd rather go today!" (Spoiled girl.)

And instead of hitting her favorite theme park, we drove to school. She happily greeted her friends, got in line (cutting in between her two favorite boys), and marched downstairs.

I've never met a kid (or adult!) with more adaptability, resilience, life experiences. Seeing her face in New York City Saturday night at almost 11 PM - glowing, excited to be there, huge smile as she took in the hustle and bustle, as still thinks of it as "home" - was so funny to see. Getting back last night, and being so excited to be in her DC "home" as she ate cantaloupe and cheese and crackers for dinner while we watched Lion King, then took a bath and went to bed. Ready and excited for her next adventure - and totally knowing it won't be too long before we go away again, this time on an airplane, her favorite mode of transportation.

We partially created this world for her, this normalcy in the excitement and adventures of life. But this is what she loves, what she thrives on. I certainly can't handle moving again, or handle new surprises around each corner, but she's ready and willing to do anything.

We keep looking at our pictures from our European adventure this summer, and I am blown away - not just by the places we went and the fun times we had - I mean, those were expected, planned in our itinerary. But what surprises me is how happy Lilly is everywhere. How much she ate up each experience, how she looked so at home in each foreign city. She is the epitome of a "When in Rome" kind of girl.

Her passion for life is one of the coolest things about my girl. And again, I am brought back to the false reality that 5-6 years ago I was thinking: "If my daughter has Down syndrome, will we be limited? Will we be tied down? Will life be hard?" The hardest thing is actually keeping up with her. She certainly has more energy, more drive, for endurance than her mommy. Thank God for that.

Monday, November 7, 2011

Monday morning

Typical Monday morning. The cleaning ladies were here (thank goodness; we have a tight budget but with both Jon and I working, it's one of those things that I can justify twice a month), so after dropping Lilly off at school, I had to be out of the house for the morning.

For the past 3 months I've felt nauseous, and am just now feeling like eating normal foods again. (Not that its stopped me from gaining 10 pounds in the first trimester, of course.) So, my grocery list was huge with all kinds of foods for recipes that we'd try out, now that I can stand the smell of food in my kitchen again. At first I stopped by Target - but found out they didn't have a Starbucks - so I quickly bought Lilly 6 pairs of socks and made my way to Harris Teeter.

Got my peppermint mocha (yes, the doctor said I can have one caffeine each day- although I wish I hadn't wasted it on that drink - next time, I'll stick to a regular mocha or plain coffee), and started walking down the aisles. I literally needed everything, and it was nice to shop for once without feeling like I'd get sick. I was debating the pros and cons between the store brand of fruit cocktail versus the name brand (the store brand doesn't have cherries, but it's cheaper, by the way) when I heard it.

This song makes me cry every time I hear it. And it came over the loudspeaker right after Cee Lo's "forget you" (which Lilly knows every word to, I'm not sure if I'm proud to say). The song was Natalie Merchant's "Wonder." It is such a beautiful song, and it just makes me emotional - and so proud - of Lilly.

It has lyrics like...

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

Oh, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

It just hits me. I made my way to the bathroom in the back of the store, and burst into tears. Not sad tears, but just emotional tears because Lilly is so amazing and I am so proud of her. The words: "Know this child will be able" and "With love with patience and with faith, she'll make her way" - She is gifted, she is able, she will make her way, and she has already. Lilly is a wonder, as all children are, I guess, but moreso because she faces challenges that other kids don't and she overcomes them so graciously. It's astounds me that so many people don't see the amazingness of people with Down syndrome - and other disabilities - when I know firsthand how much we can learn from them, how much they enrich our lives, how blessed they are. Lilly truly makes the world a better place, just by being in it.

Song ended, meltdown over, and I left the bathroom like nothing happened and continued shopping. Doesn't everyone cry in the bathroom over cheesy grocery store music?

Thursday, November 3, 2011

What's next

The cat's out of the bag, or the bun's in the oven, or whatever the expression should be. Lilly is expecting a little brother or sister, to be born in April.

We are overjoyed, and I am terrified, of course - we were thisclose to being done with everything dependent. Lilly's probably more independent that me and Jon at this point, so now we're hitting the "reset" button and going back to babyhood (along with miss independent preschooler??). Life will be different, I'm sure, and crazy at times, but welcoming this new baby into our lives will be amazing. Right?

Lilly will be a great big sister. She's been talking to my belly every night: "Hi baby. It's Lilly. I'm with mommy and daddy. Ok? Love you, baby. Ok, bye."

The other day, she said she needed to show baby something. I said ok, and she pulled out a pamphlet. Of a 5 star resort in Cancun (we get tons of junk mail that Lilly goes through). Lilly showed my belly button (the baby) the pictures of Mexico, the ocean, the beautiful resort, kids laughing, parents holding frozen drinks, and asked if baby wanted to go.

And I swear, I thought right then: "OMG, Lilly's right. We've never taken her to Mexico. We should go right after the baby's born."

And then, I thought to myself: "Are you kidding me? Stop it with the travel planning!" And I quickly dropped the idea... or, at least, placed it on the top shelf of my mind with the "someday we'll do it" plans.

It's weird, when Lilly was born, and we found out she had Down syndrome, one of my strongest thoughts was, this will not limit her. She will do everything she wants to do. She will be exposed to every experience, because she can. 5 years later, Lilly has done and seen more than most people I know. She's accomplished more and worked harder.

That's the weird thing, when I think about this next child. To have a child that doesn't have to struggle, but also won't know how to work as hard. To have a child who does things easily, but doesn't make the same impact on the world. I'm not trying to short change the child - I'm sure he or she will be amazing. But it's just such a difference than what we're used to. But that will not limit our family. We'll have two precious kids, with all their strengths and weaknesses. Maybe our next child won't have the magic of Lilly, but I know he or she will accomplish so much in whatever they take on - and who knows, maybe their inspiration will be their big sister.

I look forward mostly to seeing their relationship. To see Lilly "mommy" the baby when it's little, to see her teach the toddler as it grows, to watch them develop a friendship, a strong bond that will surely surpass even what we've built with Lilly. To watch our kids love each other and become true playmates and friends.

Will we slow down? Will we stop showing Lilly everything and giving Lilly (almost) everything? No. She still deserves to do everything under the moon, just because she can. Because she is not limited, by chromosomes or stereotypes. But our next child, they will do and see it all along with her.

Just today, I saw an article about the Great Wall of China. And it asked, how many of you have a goal to see this at some point in your life? And, I swear, I immediately thought: "Wow! I've never thought about it before, but we should definitely take the kids there in a few years!"

And this, from someone who has declared that she is sick and tired of traveling... But for my kid(s), the sky's the limit.