Tuesday, February 10, 2009

Did I mention...

Lilly doesn't have asthma anymore!

Maybe it's the intense humidity in New Zealand, or maybe it's just the fact that she (and her lungs) have grown up, but she hasn't needed the nebulizer or gotten sick at all (aside from that nasty Christmas stomach bug) in the past six months. Now THAT's something to celebrate. :)

Monday, February 9, 2009

Where the Magic Began

As I sit here planning our Disney World vacation for June, right when we get back to the US, I can't help but remember Lilly's first trip to Disney. And it wasn't the visit when she was a year old (although that trip is super memorable, as I remember thinking at the time "Disney was not truly a magical place until Miss Lilly Lou brought her own magic!") Yes, that was a wonderful magical fantastic time with my daughter, with her personality showing strong, where we witnessed it all through a child's eyes - and it was amazing. But I'm going back even further.

Jon and I were completely stressed. We needed a vacation - no, a Babymoon, as was the new term for it. A vacation for the soon-to-be mommy and daddy, to relax and unwind before the baby comes. But we weren't the typical expectant parents. The joy of our pregnancy was swiftly taken away and replaced with fear for the unknown. With the knowledge that our baby would probably have Down syndrome or Turner syndrome, that he or she was at a higher risk for a heart defect and could possibly have a variety of other more rare syndromes, we were, to put it mildly, stressed out and exhausted. We had made the decision not to do any more testing, and that we would have this baby and love it to pieces, but it was still so confusing. What made it even more tiring for me, was that medically there was something "wrong" or "different" about my baby and my pregnancy, and yet I knew without a doubt I loved this baby no matter what. But when a doctor worries, of course we all worry, and so the joy of the pregnancy was taken away just a bit.

So we planned our vacation, our babymoon, with the one week off that my husband gets every year. Fortunately and unfortunately, we had 2 free roundtrip tickets to go anywhere we wanted, thanks to a mishap in a Vegas airport a few months earlier, where my eye was nearly knocked out. The eye ended up being fine, and, well, we were excited about our free tickets! With the help of my wonderful cousins, we booked a room for 5 nights at the Wilderness Lodge at Disney World, and my parents decided they could meet us for 2 nights.

And there began Lilly's first trip to Disney. We arrived completely mentally drained, and emotionally and physically exhausted. We had shed many tears of confusion in the few weeks prior, but this was the trip that would change everything.

First, physically: since my pregnancy began, I couldn't breathe. It got worse as the pregnancy progressed. It was like my body couldn't get enough oxygen, and even to get from my car to my desk on the second floor of my building every morning, I had to drink a powerade just to make it. But that one week in Florida, all of a sudden I had the energy and stamina that I had always had. I walked miles every day, ran (much faster than Jon, in some cases) to catch buses, and was up from first thing in the morning until the parks closed at night. I felt amazing.

And emotionally: something changed on this trip regarding our daughter. We had found out two weeks earlier that they thought it might be a girl; and I was taking that answer and locking it in! Even though that particular ultrasound was only at 14 weeks pregnancy, and they said they didn't know for certain, I didn't care - this was the little girl I had dreamed of, that would be named Lillian after my grandma. And walking around Magic Kingdom, seeing everything princess, I was convinced that regardless of her chromosomes, she would be a perfect princess. At one point, there were beautiful parisols that you could get a name painted on. I pulled Jon over to them and picked out a pretty pink one and had them write Lillian. Jon questioned me on this one, since we didn't know the baby's gender for certain; but I knew, and I was getting that umbrella. So we decided that if it was a boy, he would also be named Lillian and carry a pink parisol. :)

We also decided on that trip, that our child would be spoiled, no matter what. Not spoiled in a bad way, but the little things. We went from country to country in Epcot, picking out Mickey characters from each country for out little angel. It would be her first stuffed animals, and the first things we ever bought for our sweet angel, and we were happy to have gotten these for her, to show her that we were thinking of her months before her birth.

One day early in the trip, we went on Its a Small World. In one of the rooms, I looked over at the characters and I swear this particular one looked like she had Down syndrome. I had never noticed this before, but when we got off the ride I told Jon what I had seen. I knew it was a sign: our child would in fact have DS, and it wouldn't be so bad after all. (A year later with Lilly, we went on the same ride and the character was gone/had never been there at all. But I know I saw it that day, somehow or another!)

Our mindsets changed on that trip. We spent a week laughing and having fun and enjoying each other's company. We talked about the what-ifs and the worries and the concerns; but the overriding feeling was that everything would be fine, no matter what. We grew closer as a couple, and as a family. We realized that our greatest pride, and most proud accomplishment, would be our new baby, and we would do everything we could throughout this child's life to encourage and support her, like every good parent does for their child. And from the moment she was born 4 months later, she was our Princess, and there was never another sad thought about her life or future - she was born perfect. Especially when the first feature I noticed about her was her huge Angelina Jolie lips!

And for the record, we were never sad about Lilly. I regret a single tear I ever cried for the news that she might have Down syndrome during the pregnancy; but in our defense it was presented in such a bad manner and actualities of who my daughter would become was never brought up. There are so many myths and outdated stereotypes of what DS is. I almost thought I would become a caretaker to a child instead of a mother to a beautiful baby. The reality is, I have been raising a princess who every day surprises me with her accomplishments and abilities. I love how last night, while watching Beauty and the Beast, she insisted on wearing her Belle dress while we danced around, and even tried to put it back on after I took it off her. She is a true Princess in every way, and will eagerly admit it to you.

A few days ago, Jon was at the playground with Lilly, and a 10 year old girl walked up to them. She asked Jon, "Does your daughter have special needs?" Jon said he only thought about the question for a brief moment, before coming to his conclusion: "No, she doesn't."

Honestly, when you think about it, we all have needs that are more or less "special" or different than other people. Jon's ability to fall asleep anywhere at any time, for example. Or my obsessive compulsive planning. Lilly's most special need at this point in her life is that she's much more used to stimulating experiences that the average kid, and has a clear prefererance for 5 star hotels (and she gives bonus points for a concierge floor). My latest special need has been wanting to plan the perfect Disney trip for my perfect daughter. Because it's not just a vacation destination to us anymore; it is the place where we realized our dreams really would come true.

Friday, February 6, 2009

18 Reasons

18 Reasons Why Lilly is the Best Little Girl in the World

  1. Because when you ask Lilly if she is a Princess, she gives a very enthusiastic "yeah" and nods her head up and down, with a big smile and her eyes lighting up wide and bright. Because obviously, she is.
  2. Because she watched (and loved) parts of Dirty Dancing and Beauty and the Beast this week. And LOVED American Idol last night, and tolerated Lost.
  3. Because we discovered, not only does she know lots of the music and choreography to Annie and High School Musical 1, 2 & 3, but we witnessed that there is nothing cuter than when we're watching Annie and Lilly copies the suggestive dance moves of Carol Burnett, or pretends to be a chorus girl and kick in the song "Let's Go to the Movies" in Annie. And when she acts out "Never Fully Dressed without a Smile." And that she has so many o fthe moves and words memorized. (Even though she always wants to be "annie" and makes me be "daddy warbucks" in the last song.)
  4. Because no one can pull off a french braid the way Lilly can.
  5. Because she gives the BEST huge hugs and the BEST perfect princess kisses. And knows when you need one; when I hit my head yesterday she gave me a huge hug and always remembers to pat your back when you need a little extra love.
  6. Because she holds our hands when we go somewhere together, even within the house. And she listens to and follows directions so well.
  7. Because she knows how to do EVERYTHING these days - she will open the fridge to get her own drink, open the cabinet to get her crackers, and get the correct remote to turn on the tv or dvd player.
  8. Because she is such a good eater now; last night she ate pizza AND salad, the night before noodles AND vegetables, and the night before that, grilled cheese AND raw veggies (with ranch dip, of course). And because she LOVES fruit, and will always make room for canteloupe.
  9. Because when an elderly couple approached us a few days ago, to tell us that their grandchild has DS as well, Lilly immediately jumped in the lady's arms and gave her a huge hug for about 5 minutes. (And Lilly doesn't usually go to strangers.)
  10. Because Lilly is so good at "organizing" things - from laundry, to toys, to books - although, it's not always necessarily helpful - most of the time we have to "reorganize" right after her.
  11. Because at a restaurant, she insists on having her own menu, and insists on handing it directly to the waitress when we order.
  12. Because she can be bribed with cookies. Or crackers, or cantaloupe, or m&m's.
  13. Because of her passion for life, her intuitiveness, her joy and excitement, her love for attention and acknowledgement, and her beautiful laugh (which she now "signs" laugh when she laughs, in case we didn't know!).
  14. Because she appreciates live performances; she knows to sit still and watch quietly, and knows how to applaud ferociously at the end of each song/act. She loved the show at Waitangi in Bay of Islands two weeks ago, and the circus last week.
  15. Because she's pooping on the potty instead of in her diaper 95% of the time, which is much more enjoyable to clean up.
  16. Because she brushes her teeth well, and makes an excellent attempt at spitting in the sink when she's done.
  17. Because she loves putting lotion on herself, or on us, and it is so adorable when she's rubbing the lotion onto her little hand on her arm or leg.
  18. Because she is the most beautiful girl in the world, and because she makes me tear up knowing what an amazing blessing I have sitting right next to me.