Three years ago today, you entered this world and our lives were changed. You were so surrounded by love! We watched the clock as the seconds turned to minutes, and the minutes to hours, the hours to days, then months. Then a year. Before we knew it, a second year had passed us by.
And now a third.
I am in awe. I am so amazed by your strength, your courage, your determination. To not know, you know. You are so aware!
You are a big girl, now! You get to start school, and that terrifies me and excites me. Again, I am filled with these complex emotions that I struggle to deal with. This is not the trivial letting go of the bicycle that I'm dealing with here. I'm letting go of control over your well-being. I know you will be in good hands, but I'm still so very afraid.
You are beautiful and life-loving, and I feel so blessed and fortunate that you are a part of our family. And while it does have lots to do with the fact that you're still here despite statistics, it has more to do with the fact that you have taught us so much about loving life and appreciating it and being thankful for all those little things that tend to be overlooked. You have so much to teach the world! Not just about Trisomy 18, but about how life is supposed to be lived.
Thank you for teaching me so much. Thank you for fighting for yet another year. I am in deepest hopes of many more to come.
I love you, my little Lillikins!
Momma
Monday, April 30, 2012
Thursday, April 19, 2012
To answer Nana Robin's question. . .
Nana Robin left a comment on my last post, realizing that I asked that no gifts be given to Lily, but she did make a good point: it's hard for Southerners to not give a gift. She also made a wonderful suggestion:
How about a donation to Pattison's Academy?
Nana Robin, I think that would be a wonderful gift! Of course, you DO NOT have to do this, but if you do (which I know Southerners, and I know they can be hardheaded when it comes to things like this :) ), would you please go through Lily's OT's First Giving page for the Spin-a-thon? Here's the web address:
http://www.firstgiving.com/fundraiser/brenda-reagan/pedal4pattisons2012?fge=ask
I only ask that you go through her because if she raises $1000, she is guaranteed a bicycle in next year's spin-a-thon--and she has asked me to ride on her team, which I really want to do! If she doesn't raise that much (and she's not far from that amount), then she has to wait in line for a bike, and that means she might not get one. . .which also means I might not get to ride. There is a huge demand for these bikes!!!
That is such a great suggestion for a gift, that I cannot refuse! Not only does it benefit Lily, but it benefits a lot of children with special needs and gives them experiences you'd never dream a child with special needs would have. If I didn't believe that much in this school, I would never agree to accept such a gift.
How about a donation to Pattison's Academy?
Nana Robin, I think that would be a wonderful gift! Of course, you DO NOT have to do this, but if you do (which I know Southerners, and I know they can be hardheaded when it comes to things like this :) ), would you please go through Lily's OT's First Giving page for the Spin-a-thon? Here's the web address:
http://www.firstgiving.com/fundraiser/brenda-reagan/pedal4pattisons2012?fge=ask
I only ask that you go through her because if she raises $1000, she is guaranteed a bicycle in next year's spin-a-thon--and she has asked me to ride on her team, which I really want to do! If she doesn't raise that much (and she's not far from that amount), then she has to wait in line for a bike, and that means she might not get one. . .which also means I might not get to ride. There is a huge demand for these bikes!!!
That is such a great suggestion for a gift, that I cannot refuse! Not only does it benefit Lily, but it benefits a lot of children with special needs and gives them experiences you'd never dream a child with special needs would have. If I didn't believe that much in this school, I would never agree to accept such a gift.
Tuesday, April 17, 2012
Another Invitation
It is absolutely amazing to me--and something I never, ever expected--that we are planning yet another birthday party for Lily! So, yes, I do have another invitation, but before I share it, I'd like to tell the story behind it. It's truly amazing and such a blessing to Lily and us, but it reaches deep and shows the way that God works in others.
For the 4th of July, we went to a place called Peaceful Way to celebrate. It was a free event, but it was loaded with fun things for a family to do--land, a pond with water trampolines that look similar to the Wipeout course, a playground, horses to ride, helicopter rides, hay rides, a splash area, kayaks, and a jump castle/water slide. There was a dinner, and guests were asked to provide a vegetable and dessert, while the owner, Mr. Curtis Bostic, provided the meat. Once it got dark, a phenomenal fireworks display that could rival what our downtown firework show had to offer was put on. There was music and beauty and peace. Basically, it was a relaxing family event that left Dave saying it was one of the most memorable family events he's ever had.
At Thanksgiving, Mr. Bostic had a Thanksgiving event where basically all but the water activities and fireworks show were there for the guests' entertainment. There were candlemaking and pumpkin crafts, and some who attended were dressed as pilgrims. Again, there was a dinner, and the atmosphere was full of beauty and peace.
Fast forward to the end of March. . .Dave and I were beginning to talk about Lily's birthday. Truly, I had wanted to keep it small and simple, but Dave is bigger on birthdays than I am, so he talked me into going bigger. We had looked at a few options, but they just didn't seem like the right type of place to have a party for Lily. By the first week of April, we still hadn't decided on a place.
Toward the end of that week, for some reason, I began thinking about our Peaceful Way experience. I went online to see if anything had been posted regarding this year's 4th of July celebration. We had such a great time that we'd like to go back to it. When I mentioned it to Dave, he suggested seeing if we could have her party out there.
Now, we knew that the land was available for organizations and certain events, but we didn't know the price. We didn't know any details regarding renting the place, actually. But finding out and expressing interest, could that hurt? We decided to contact the owner. Since we weren't affiliated with any organization, we told him about Lily and that Peaceful Way had the atmosphere we were hoping to provide for her party. After about a week and a half, we still hadn't heard from him. Last Thursday, I decided to try contacting him again, just in case my first message didn't go through. About five minutes later, I heard from his secretary! She had gotten my first message and emailed me the information, but apparently, it hadn't gone through! She stated that the land was available and that the owner usually didn't rent it for birthday parties, but Mr. Bostic was touched by Lily's story and he was willing to let us use it. He wanted to talk to us, though, before we sent in the contract information. (I should also add that the use of the property is free, but you have to pay for so many hosts per guests and lifeguards and horse handlers. We had the option as going as cheap as we could or to go all out with the pricing.)
I talked to Mr. Bostic the next day. This man is amazing! After asking me what I was expecting for the party, and my stumbling to tell him what of his amenities we wanted to use, he said, "I tell you what. Why don't you give me a wish list. Tell me what you'd like to have, regardless of how much it costs." I spouted off a list for him, and we discussed whether we should have water activities (we did wish to have kayaks available). At that point, he told me that it would be an honor for him to provide everything for us for free! No host fees, no lifeguard fees (we won't need lifeguards anyway), no horse handler fees. He went on to offer helium from his helium tank--I just need to provide the balloons--and snow cone syrup for his snow cone machine.
I told him that it wasn't our intention not to pay, that we'd like to give at least something. He then said--and if you thought the first part was amazing--, "Let's make a trade. You bring a tree for us to plant on our property, in honor of Lily, and we'll do this for you." I honestly cannot think of too many places that would be PERFECT to plant a tree in honor of Lily. This is one place that I would LOVE to do so! Dave and I were blown away by the beauty, family atmosphere, and peacefulness this place has to offer. These are qualities that we hope to surround Lily with. I am delighted to be planting a tree there in her honor. To even add to that, he asked if he could personally wish her a happy birthday!
I am blown away by the kindness and generosity of Mr. Bostic. Before my message to him, he didn't know us. Besides that message and a twenty minute phone call, he still doesn't really know us. Yet he is willing to break the rules of his policy to allow us to celebrate Lily's birthday on his property. He is willing to provide us with more than we would have asked for. And he is willing to honor our daughter, a little girl he's never met, by allowing us to plant a tree on his property. Obviously, Mr. Bostic has a good bit of money. That allows him to be this generous to us, but Mr. Bostic has his own testimony, his own story, to tell, with God as such a huge character in his story, and I believe THAT compels him to share with others what he has been blessed with.
And that adds to our blessings.
So without further ado. . .here is Lily's birthday invitation. So if you're in the Charleston area. . .
Saturday, April 28, 2012
12:00pm until 4:00pm
Peaceful Way
(Email me your RSVP and I'll give you the address and directions.)
We invite you and your family to come out to Peaceful Way and celebrate yet another year with Lily. Peaceful Way is a farm in Ravenel, South Carolina. Mr. Curtis Bostic, owner of Peaceful Way, has graciously donated his farm for the use of Lily's birthday party. There will be plenty of activities for all: a playground, jump castle, horse rides, kayaks, basketball, volleyball, horseshoes, ping pong. . .even a hayride!! Lunch will be provided, as well. So please feel free to join us for this family event where we celebrate life.
No gifts please. Your presence provides the greatest of presents.
Please RSVP via email at southerngirl72j@comcast.net as soon as possible. We need to give Mr. Bostic an estimate of how many people we expect to be there.
For the 4th of July, we went to a place called Peaceful Way to celebrate. It was a free event, but it was loaded with fun things for a family to do--land, a pond with water trampolines that look similar to the Wipeout course, a playground, horses to ride, helicopter rides, hay rides, a splash area, kayaks, and a jump castle/water slide. There was a dinner, and guests were asked to provide a vegetable and dessert, while the owner, Mr. Curtis Bostic, provided the meat. Once it got dark, a phenomenal fireworks display that could rival what our downtown firework show had to offer was put on. There was music and beauty and peace. Basically, it was a relaxing family event that left Dave saying it was one of the most memorable family events he's ever had.
At Thanksgiving, Mr. Bostic had a Thanksgiving event where basically all but the water activities and fireworks show were there for the guests' entertainment. There were candlemaking and pumpkin crafts, and some who attended were dressed as pilgrims. Again, there was a dinner, and the atmosphere was full of beauty and peace.
Fast forward to the end of March. . .Dave and I were beginning to talk about Lily's birthday. Truly, I had wanted to keep it small and simple, but Dave is bigger on birthdays than I am, so he talked me into going bigger. We had looked at a few options, but they just didn't seem like the right type of place to have a party for Lily. By the first week of April, we still hadn't decided on a place.
Toward the end of that week, for some reason, I began thinking about our Peaceful Way experience. I went online to see if anything had been posted regarding this year's 4th of July celebration. We had such a great time that we'd like to go back to it. When I mentioned it to Dave, he suggested seeing if we could have her party out there.
Now, we knew that the land was available for organizations and certain events, but we didn't know the price. We didn't know any details regarding renting the place, actually. But finding out and expressing interest, could that hurt? We decided to contact the owner. Since we weren't affiliated with any organization, we told him about Lily and that Peaceful Way had the atmosphere we were hoping to provide for her party. After about a week and a half, we still hadn't heard from him. Last Thursday, I decided to try contacting him again, just in case my first message didn't go through. About five minutes later, I heard from his secretary! She had gotten my first message and emailed me the information, but apparently, it hadn't gone through! She stated that the land was available and that the owner usually didn't rent it for birthday parties, but Mr. Bostic was touched by Lily's story and he was willing to let us use it. He wanted to talk to us, though, before we sent in the contract information. (I should also add that the use of the property is free, but you have to pay for so many hosts per guests and lifeguards and horse handlers. We had the option as going as cheap as we could or to go all out with the pricing.)
I talked to Mr. Bostic the next day. This man is amazing! After asking me what I was expecting for the party, and my stumbling to tell him what of his amenities we wanted to use, he said, "I tell you what. Why don't you give me a wish list. Tell me what you'd like to have, regardless of how much it costs." I spouted off a list for him, and we discussed whether we should have water activities (we did wish to have kayaks available). At that point, he told me that it would be an honor for him to provide everything for us for free! No host fees, no lifeguard fees (we won't need lifeguards anyway), no horse handler fees. He went on to offer helium from his helium tank--I just need to provide the balloons--and snow cone syrup for his snow cone machine.
I told him that it wasn't our intention not to pay, that we'd like to give at least something. He then said--and if you thought the first part was amazing--, "Let's make a trade. You bring a tree for us to plant on our property, in honor of Lily, and we'll do this for you." I honestly cannot think of too many places that would be PERFECT to plant a tree in honor of Lily. This is one place that I would LOVE to do so! Dave and I were blown away by the beauty, family atmosphere, and peacefulness this place has to offer. These are qualities that we hope to surround Lily with. I am delighted to be planting a tree there in her honor. To even add to that, he asked if he could personally wish her a happy birthday!
I am blown away by the kindness and generosity of Mr. Bostic. Before my message to him, he didn't know us. Besides that message and a twenty minute phone call, he still doesn't really know us. Yet he is willing to break the rules of his policy to allow us to celebrate Lily's birthday on his property. He is willing to provide us with more than we would have asked for. And he is willing to honor our daughter, a little girl he's never met, by allowing us to plant a tree on his property. Obviously, Mr. Bostic has a good bit of money. That allows him to be this generous to us, but Mr. Bostic has his own testimony, his own story, to tell, with God as such a huge character in his story, and I believe THAT compels him to share with others what he has been blessed with.
And that adds to our blessings.
So without further ado. . .here is Lily's birthday invitation. So if you're in the Charleston area. . .
Saturday, April 28, 2012
12:00pm until 4:00pm
Peaceful Way
(Email me your RSVP and I'll give you the address and directions.)
We invite you and your family to come out to Peaceful Way and celebrate yet another year with Lily. Peaceful Way is a farm in Ravenel, South Carolina. Mr. Curtis Bostic, owner of Peaceful Way, has graciously donated his farm for the use of Lily's birthday party. There will be plenty of activities for all: a playground, jump castle, horse rides, kayaks, basketball, volleyball, horseshoes, ping pong. . .even a hayride!! Lunch will be provided, as well. So please feel free to join us for this family event where we celebrate life.
No gifts please. Your presence provides the greatest of presents.
Please RSVP via email at southerngirl72j@comcast.net as soon as possible. We need to give Mr. Bostic an estimate of how many people we expect to be there.
Thursday, April 12, 2012
Saturday, April 7, 2012
Promised Pictures
Gabriel, Soleil, and Lily with the Easter bunny. It's hard to get three children to look at the camera at the same time!
Gabriel on the ferry from Delaware.
Lily on the ferry from Delaware.
Soleil loving on Lily at Grandma's house in New York. Such a sweet sister!
Soleil, Gabriel, and Lily at the Please Touch Museum in Philadelphia.
Gabriel drinking Jasmine tea at the restaurant where we had Peking duck.
Lily and Gabriel watching tv in the hotel in Philadelphia. Lily was sitting with her nice, straight back!
All the trisomy children at the Trisomy Celebration in Florida. Not all of them were Trisomy 18, but every single one of them was beautiful! Lily is in the blue shirt, bottom middle of photo.
Gabriel in Central Park.
Lily is sitting this way on her own! When I walked out of the room, she was lying on the floor. This is how I found her when I came back in the room. This is such an impressive feat for her--she pushed herself into this position! This is a first for her, and I'm so glad I was at least able to catch the result of her hard work!
Tuesday, April 3, 2012
Experiences
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!
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!
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