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.
Lilly's first day in the preschool class.
