Tuesday, April 3, 2012


The past few weeks have been a whirlwind! St. Patrick's Day weekend, we headed down to Orlando, Florida, to help celebrate Kayli's birthday. She was granted a Make a Wish wish to spend the week in Orlando, having a parade for herself and other Trisomy 18 children. We weren't able to attend the parade, since that was our travel day, but the next day, we attended a celebration where twelve other children with varying chromosomal conditions, mainly Trisomy 18, gathered. The oldest, Tess, was 22!

That celebration warmed my heart! There were so many families, including those of angel babies, and so many precious children! Lily was amazing! When we first got there, she was so excited. It was as if she knew she was surrounded by children like herself and those who love them.

After the celebration, we headed to Tampa because that's where my best friend lives. Since we were in Florida and so close, it would have been a shame not to visit her! That visit was amazing! Not only did we see Yvonne and her family, but we also got to visit with her niece, Jackie. Jackie has a condition called Pallister-Killian Syndrome, a condition that is quiet rare. It seems that only about 200 children are diagnosed with this condition. Oh, what a sweet little baby! Another miracle to add to the list! My only regret is that the visit was not long enough.

We got back on Sunday evening, had Monday to settle and get things together, and then took off Tuesday for Philadelphia, where Dave had a conference to go to. That was quite an exhausting trip! Because of all of the equipment we had to take with us for Lily, there wasn't room for our double stroller, so I opted to use a hiker's backpack to carry Soleil around the city. Day one had the kids and I walking a lot downtown. Day two did not hold the adrenaline that day one held. I think we took a rest on day three. Day four held a visit to the Please Touch Museum, so I didn't have the backpack, but watching three children in a place packed with children was exhausting in itself. And the last day, a very cold day, found us driving around looking for a park for the kids to play in the majority of the afternoon.

In Philadelphia, we saw the Liberty Bell, played in Franklin Square and a few other smaller parks, went to the Reading Terminal Market, walked through Chinatown, visited the Please Touch Museum, ate Peking duck, went to a 76ers game, and had a Philly cheesesteak taste test. We walked a lot and all of the kids were champs! I am so proud at how well behaved and tolerating of our circumstances they were. On our last day, the kids and I were in a restaurant, and our waitress came up to me and told me that the lady beside me would like to pay for our meal! The waitress said, "She says you have a beautiful family." I cried over such a lovely gift. Such a high compliment and tender gesture! I wish I had made some business cards like I've been meaning to create to share with her about Lily. I wanted her to know about our family and how Lily helps make it beautiful despite her condition. (Not that my other four children don't make our family beautiful, for they surely do in their own unique ways!)

That was on Sunday, and soon after that episode, we headed to New York to visit Dave's parents. It was great seeing them! During that visit, we got a chance to go into the city. Unfortunately, it was really cold, so we drove and mainly stayed in the car. But Gabriel and Soleil got a chance to get out into Times Square, and Gabriel got to play for a few minutes in Central Park. Again, another short trip. We left Wednesday afternoon with the intentions of stopping overnight at a hotel, but then decided to make the drive overnight. We got home at 7:00 the next morning! The drive home was interesting because we were able to ride the ferry from Delaware to Maryland (I think).

And we're not done! We've got a few more scheduled visits out of town for the month of April!

I love it because I love, love, love that Lily gets to have these experiences! Sure, we take a risk sometimes, and she probably doesn't understand what's going on, but I believe that she feels the excitement in us that we get to share these experiences with her. And I believe she thrives on things like that.

And speaking of thriving. . .today, when I left the room, Lily was lying on the floor. When I came back in the room, she was sitting up, her legs underneath her. She had pushed herself up on her own!!! I have pictures, but it's late, and I'm too tired to post them. I'll try to do it tomorrow. There are a few special pictures from our trip and the picture of Lily sitting up that I'd love to share.

She's such an amazing little girl!

1 comment:

  1. She is an incredibly beautiful happy, thriving little girl. I am so glad you make these experience happen for her. What life our children have in them and it is for us to teach and let others learn of them and their potential. Thank you for sharing about your adventures.