Best Case Scenario Girl

Tonite just before Lilly drifted off to dreamland, she leaned over for one more kiss for her mommy, and one more kiss for "Troy" and "Gabriella" (Zac Efron and Vanessa Hudgens whose High School Musical characters are on Lilly's pillow). A few minutes later I tiptoed out of her room, thankful yet again for my little blessing.

Exactly a week ago, we had just survived Lilly's surgery. As I wrote last week, we were terrified. It was the single scariest moment of my life by far. I was giving my little child over to have her heart fixed, with all the potential risks weighing heavy on my heart.

In theory it wasn't a complicated surgery; however, involved in it were doctors, residents, and nurses all of whom could have an off moment and mess something up. The hole could have been bigger than anticipated which would have led to open heart surgery. Lilly could have had a complication to the anesthesia, especially going into the operation with a cold.

We don't usually think worst case scenarios, but you have to understand. Lilly is just so lucky. All the time. She is actually our best case scenario little girl, and we don't take that for granted. She was a great baby, easy going and slept through the night from an early age. And she's turned into a wonderful little girl, with a funny little sense of humor, sweet but cheeky, and always knows when to give her mommy and daddy the perfect kisses and hugs. With all the worrying I've done in her little life, nothing ever actually goes wrong. She's had amazing experiences at school. She makes friends and enjoys every activity. She loves singing, dancing, and playing on the playground. She's an excellent traveler, and an incredible little companion.

You'd have to know Lilly to really understand, but every since she was really little, it's like she touches people in a special way. And everything always kind of falls into place even better than we could imagine. I'm almost starting to anticipate that whenever I have a worry about anything, it will resolve because anything Lilly-related always turns out well.

So you see, with such good karma, we were terrified. What if we were taking all this good luck for granted? What if we truly thought it was an "easy" operation and then the worst case scenario happened? So we freaked each other out. And at the same time, we did not take a single moment in that week before the surgery for granted; I was so nervous in the back of my mind that it might be the last time that we danced to a certain movie, or the last time she ate macaroni and cheese. I know it's morbid but I was so worried and couldn't see straight out of fear that I might lose my girl.

Last Wednesday night, Lilly and I gathered in my bed and watched Hannah Montana and American Idol. Then I tucked her into bed and said good night. And then I closed the door and sobbed, praying so hard that God would take care of my girl the next day.

Sometime during the night, Lilly ended up in our bed (which is very untypical for us) and on Thursday morning the three of us woke up at 6 am. When we left the house, we told Lilly should could carry one thing of comfort - I thought for certain she'd pick one of her baby dolls. Not our girl - she picked up her new Camp Rock dvd (which we only got a few days before but she'd watched it 3 days in a row) and proudly held it the entire carride. When we got out of the car, I again offered her "Baby," her favorite Cabbage Patch. But no, she threw down "Baby" and clutched that Camp Rock dvd and that was her prized possession the whole morning. (Note: there was no dvd player, she just wanted the dvd itself.) We were at the hospital at 7, and checked in. Then there was a mix-up with insurance and Jon and I freaked out. If the hospital couldn't figure out our insurance, how did they expect us to trust them with our child?! Two days earlier, at a doctor's appointment, the nurse checking Lilly in also got confused and started doing a "well child" visit instead of a "sick" visit, which made me again worry about stupid medical mix-ups. It all just seemed like a bad omen. On top of that, Lilly had a cough and a runny and stuffy nose, which is a bad thing when you're going under anesthesia.

One of my fears too is regarding residents - while I love the resident I am married to, and I know they all need training, I am very much against their training on my daughter. And Lilly was at a teaching hospital, which made me even more worried. We mentioned to the doctor 10 times before surgery that if it was ok, we'd like as little resident involvement as possible. So finally they took us to a pre-op room and I kid you not, there were at one point about 10 people in our room - residents, fellows, nurses, interns. Which multiplied my fear, and also, made Lilly a little overwhelmed herself, as she was getting poked and prodded by a bunch of different people. She kept running out of the room.

There were about a dozen moments that morning where we almost just walked out of the hospital because we just thought there were too many bad signs on this particular morning. At one point, everyone was surrounding us and we were talking about whether or not we should actually do the surgery or postpone it due to Lilly's cold. Anesthesia said they felt comfortable although the risks were higher. And I looked around at the ten new best friends that I had to trust with my daughter's life. "Did everyone get a good night's sleep last night?" I asked. They all said yes, and I thought - let's do it. So Lilly sat on the potty one last time, we put on her hospital gown, and gave her a little medicine to relax her (of which she spit all of it out, of course - and I almost thought it was another sign but at this point I didn't want to turn back).

A friend whose child had surgery before told me the day before that even though Lilly doesn't understand that she's having surgery, that I should explain it to her in these terms: that everything that was going to happen was to help her body, and to not be afraid and know that they are all doing something that will help her little body. So the whole morning I reassured her of this, and that everything would be ok. Jon, Lilly and I held each other and said a prayer, and then Jon walked out of the room holding my little girl. I was sobbing and so scared, and I just kept praying for the next 10 minutes. A nurse discretely brought in kleenex. I was just about to tell myself to get it together, that it would be ok, and then Jon came in - crying himself. I can't remember him ever crying like this before - and we both lost it.

Jon adds: I held the consent form for surgery in my hand and felt
paralyzed. I was so scared for Lilly. In getting over her cold, the anesthesia
attending stated that upon going to sleep she could go into laryngospasm
requiring her to get additional medications or even put fluid into her lungs. On
the other hand, nothing could happen and if we waited she could have a new cold
the next time we tried to do the procedure. With all the courage I could muster,
I signed the consent form and proceded to carry my little girl in to the Cath
Lab. She layed down on the table and immediately looked to the ceiling at the
collage of dinosaurs. She started to point at them as the doctors gave her the
medications to allow her to drift off the sleep. No coughing, no problems,
peaceful. She was such a good little trooper. I kissed her on the cheek and
could help but cry as I left her to join Cathleen in the waiting room. Leaving
her in that room was probably one of the hardest things I have ever had to do
(including GaTech, Med School, and now residency). I gave Cathleen the biggest
hug when I got back to the waiting room and completed my shedding of tears. The
hug made me feel much better.

Another friend told me, whose child had a similar surgery, that her advice is to not be on the phone with family and friends, but instead to do something mindless - a puzzle, or reading a magazine. We at first didn't follow this advice, as Jon called a family member and they asked so many questions that it made it 100 times harder. He hung up and we decided to hold off on talking to family until it was over. So we went downstairs to get coffee and some breakfast, and ran into one of Jon's friends, and we sat for the next 45 minutes discussing neurosurgery, real estate and jobs. Which is actually usually terribly boring, but on this morning it was exactly what we needed. The surgery was scheduled to be an hour and a half long, and after an hour we went back to sit in the room and wait in case they needed us.

As we walked back in, we saw Lilly's cardiologist standing there. When I saw him I didn't know if it was good news or bad news, but thank goodness it was good news - the surgery was over, and Lilly did fine. I think I exhaled for the first time in an hour. I wanted to hug him, but I moreso wanted to see my girl! We still had to wait a few more minutes, but while we waited he showed us a picture of her heart, and the catheter, and the device being placed inside. I joked that the picture would be on facebook within an hour. Actually it took two hours, because the hospital cell phone reception is so bad. :)

10 minutes later, after I read a magazine and Jon was sleeping (of course) we were able to go into recovery to see our girl. The number one rule of this surgery is that for the 4 hours following, she needed to keep her body straight so that the catheter site at the top of her leg would close easily. Well, as she was rolled in right as we walked in, she was already trying to climb off the table. *Sigh, that's our girl.* Jon and I took turns holding her. He held her for 20 minutes while she slept; and then I held her for 20 minutes while she was wide awake. She is exactly like each of her parents when she is with us. :) She got bored with us after awhile, and we let her watch her dvd player. An hour later, it was time to go up to her room, and as she sat on the gurney and was wheeled up - without clothes, I might mention, because she didn't like the gown, she watched her dvd player (whom she lovingly calls "Lala" I might add) the entire way - she made quite the sight.

We spent the rest of the day taking it easy. By 1 pm she was eating a grilled cheese sandwich, and watched movies all day long. Jon and I felt so overwhelmingly thankful that once again, our "best case scenario" girl came out on top.

We thank everyone for their thoughts and prayers, because it meant so much to us.

A Prayer Request

Paralyzed with fear. I don't know a better way of putting it. My daughter, in a few short days, is having heart surgery and I am terrified. I'm going through the motions of each day, of course, doing the things I need to do for the normal routine: working, taking care of Lilly, interacting normally with friends and aquaintances, but inside I am freaking out. Lilly is having a hole in her heart repaired this Thursday. It's not open heart surgery, but a catheterization surgery which will permanently implant a device that will shut the hole forever. As far as heart stuff goes, it's not a huge deal, but as far as children go, it is surgery, and it is a 3 year old's little heart, and Lilly is my only daughter, the best thing about each and every one of my days. It is so hard to think about Jon and I giving her over to the surgeons in a few days, entrusting our precious little angel to their impersonal hands. They don't know her, they don't love her, and in some ways she is just another surgery, just another kid to heal and a surgery to check of their list and just another patient to teach the residents about. To us, to me and to Jon, she is our everything. I hope they realize that, that in every way that counts, our world did not begin until she was born, our lives did not have purpose, our own hearts did not understand what love was until she instilled that feeling upon us.

I know I sound dramatic but you have to understand: my daughter is having surgery. There are so many moments that we, as her parents, might put her in a situation that has risks. We drive with her every day knowing that we might get in a car accident. We fly with her regularly knowing that the plane may go down. But we are beside her, we know the risks and could carefully protect her if at all possible. On Thursday, we turn her over to doctors who I'm praying had a good night's sleep the night before and who I'm hoping did not just get in a fight with his wife. I'm relying on nurses who make the right decisions every day but on this day in particular I'm begging the Lord that they are particularly "on."

I'm a little wishy washy about prayer requests in general. Whenever I hear someone ask for a prayer request, I of course oblige but feel a little odd about it. Like they feel a little forced at times. Not that I don't regularly pray; prayer has been a big deal to me ever since I've understood how much God is important to me. So many times, I've asked God for help, prayed for Him to show me the way, thanked Him for the blessings He's given to me. But this time it's different, it's bigger.

We have a very sweet cleaning lady every other week, and last week I told her about Lilly's surgery. She started to cry, as I tried to assure her it was going to be ok (all the while hoping I was right). She said she would pray for Lilly, that she hasn't prayed in a long time, but this was going to be a "down on my knees" kind of prayer that she'd pray for my little girl. I understood exactly what she was saying. The only time I've ever felt that way before was when Lilly was born, and she was on oxygen, and we just prayed so hard that she would be ok and get to come home with us quickly and a healthy little girl. She was in the hospital for 2 weeks on oxygen, most of the time with us being unable to hold her but we stayed by her 24/7 nonetheless. I prayed as often as I could, as hard as I could. Most of the time I prayed the rosary, because sometimes it is easier not having to specifically state what you want God to do, but to put my entire faith in His plans. I can't even count the number of times I prayed the rosary over those two weeks, but I remember saying the prayers multiple times every morning, noon, night, and in the middle of the night. And if we left the room for a few minutes, we left the rosary in Lilly's hands, and my little baby, days old, clutched that rosary as if she knew how hard her mama needed her to be ok. God gave us both strength and shortly after she came home and got off her oxygen.

And the past 3 and a half years have been amazing, which is why this surgery is throwing me for a loop. I'm not ready for the risks associated with it. I just want my girl to be happy and healthy for 100 more years, without the worry that something could go wrong. I know it's not in my hands, it's in God's, but you know that for the next week at least I'll be down on my knees praying that my little girl will be alright. Because she has to be, there is no other choice.

I don't have any cutesy stories or anectdotes for this blog entry. I am just a mother expressing her fears, a mommy begging that her little girl will be ok. I am just someone sleepwalking through the next 4 days until I entrust my child to some random doctor who supposedly will fix her little hole in her heart. I am hoping that by Thursday afternoon Jon and I will look at each other and say "That wasn't so bad, was it?" and forget how nervous we felt, the utter fear that we lived through this week prior.

But until then, we are enjoying every minute with our little ladybug. Today, Miss Lilly Lou woke up this morning and played with her Little People. By the time she opened her door, she was holding a sheep and a rabbi (part of her Little People Hanukkah set) and of course the rabbi was riding the sheep. The three of them got into the bathtub and by 9 am we were at morning church service. She actually sat through most of church, and when she went up for her communion blessing, she didn't want to walk about after she had been blessed - perhaps she felt she needed a second blessing this particular week. There just happened to be a dozen or so friars or monks or something at our church today, and Lilly had these serious guys kneeling down making faces at her and begging her for attention. Of course. Afterwards, we went to West Main, our favorite brunch spot. Lilly surprised us by not wanting to each much of her pancakes, but instead eating eggs and potatoes, both covered in ketchup. After her afternoon nap, she and daddy watched Enchanted, and parts of Grease, and then she and I made cookies and dinner. She was such an obedient little chef, and ate so much cookie dough, all while pretending that she wasn't. Tonite, instead of putting her straight to bed, she got to watch a little more tv - Hannah Montana - and she cracked up at all the appropriate times. She is such a funny little cheeky monkey, and we are so blessed that she is our little girl.

I ask any one who is reading this to please join me in prayer this week, that Lilly's surgery goes according to plan, that her little heart is healed, and that our normalcy is not interrupted too much - I'm hoping by next week at this time, we will be again baking cookies.

A Plane, A Bus, and a Ship

December 10: We got to the airport at 6:55, and started walking from the parking lot to the Airtran counter - not very far compared to some airports, but carrying 3 suitcases, 2 carryons, a stroller, Lilly, and my purse, plus two tired and cranky adults was not a fun walk. (Note to self: next time leave 5 minutes earlier and get a cart to carry it all.)

The positive part is that, after checking in at the Airtran counter, we never had to really worry about our luggage again. Disney must realize that we all hate lugging our bags all around, so after we checked it in at the airline counter in Richmond, it "magically" gets picked up at the Orlando airport and appears outside our room on the cruise. So after we happily turned in our luggage, we walked over to security... and then realized we left our passports at the Airtran counter.

After another quick squabble by two tired grown ups, Jon went back and luckily they were right there. 10 minutes later we were at the gate and they were already boarding! Which would have been perfect timing except... I still had my migraine from the day before. So my wonderful husband knew it would only get worse if I didn't have coffee and he went to get me a cup, and a few minutes after that we were in our seats on the plane and it was taking off!

Lilly has flown many times before so the flight was easy, except for the man next to me sleeping, and my migraine of course. But less than two hours later we were getting off the plane in Orlando! We were so happy the morning went smoothly because we were so nervous about potential flight delays and missing the cruise! We got off the plane and called my sister Christine (& husband Chris & son Matthew) who were staying at a nearby hotel and were going to meet us for the bus to Port Canaveral. We had arrived a few minutes early to the airport, but they were already on their way. While we waited, Lilly took some pictures with her favorite characters at the Disney store at the airport.

(By the way: Lilly's dress was actually my dress as a child, which was very cool to me. And she got so many compliments on it that day!)

Then we walked down to check in for the bus to the cruise. Disney made it super easy and when we got to the Disney Cruise counter at the airport, they immediately checked us in for the cruise as well, which meant that we didn't have to check in at the port. The additional bonus was that we were given boarding pass numbers of 3, which meant that we were in one of the first groups to board once we arrived at Port Canaveral. (I think it goes 1 through 12 maybe? We actually boarded about 10 minutes after boarding pass level 1 so it was very nice.)

Christine, Chris and Matthew arrived and a few minutes later we all boarded the bus to the port! Jon and Lilly sat together and immediately fell asleep, of course. Within 45 minutes we arrived at the Port. Colleen, Lyndsey and Julianne were already there and checked in. Then we got in line for pictures with Mickey!

I absolutely loved all the Christmas decorations that were everywhere on the trip, even at the Port! Lilly loves Christmas trees.

Lilly also loves her cousins. :)

And finally we boarded the ship!

We went straight to lunch at Parrot Cay, which was a buffet lunch. Scott, Donna and Jacob arrived shortly after. A few characters were walking around. Lilly got to see Mickey again. :)

After lunch, we went to our rooms finally. Being on a cruise ship, they weren't huge, but it wasn't ridiculously small either. It reminded me of a motor home a little bit - they made use of every little space. We were in a category 11 room, which is the smallest room, and honestly it was fine for us. Some of our group had cat 9 or 8 rooms which have a window and a split bathroom, but honestly for the price I'd probably book a cat 11 room again. Our room had a bed/bedroom area, a living room area with the couch that flipped over into Lilly's bed (although see if she actually slept in it!), and a bathroom with a bath. The bath was important to note because apparently not all cruise lines have rooms with baths but I believe all of Disney's cruise rooms have a bath.

After settling in, we went to the farewell party which was fun, and by that time Jenn & Brian & Cassidy arrived. Then we all went to dinner. My migraine was really killing me at that point, and I sometimes feel nauseous with migraines, but it also might have been the ship so I took a Bonine. I never felt nauseous again the entire trip (and luckily the migraine was gone by the next day). After dinner we went to a lounge area that had dance music and the kids started dancing. Here is a funny picture of Lilly dancing with random stranger kids - I just think it's funny the way they're all doing the same weird move!

And here is the dancing queen...

So that is the end of day 1... It was fun and exhausting. :) My impression at the end of day 1 was that I was a little overwhelmed by the cruise experience because it was new to me, but I was very impressed by the cruise ship and the ease of how everything went so smoothly that first day between traveling and settling into the cruise.

The Princess and the Pea - a Bedding Story

Lilly has never liked blankets. When she was a tiny baby, she couldn't do anything about it, but from 6 months on, she refused to keep a blanket on herself while sleeping. Luckily we keep the house somewhat warm, and put her in cozy pj's, so she's done ok.

Then we moved to NZ, and there was no real heat. Most nights during their winter we were freezing - did I mention there was no insulation in our house in addition to no heat? So we had to buy really thick warm pajamas since Miss Lilly Lou wouldn't tolerate a blanket.

But at some point, a child needs a blanket, right? When we moved back here, we got Lilly her first big girl bed, which she absolutely loved. And on top of it, there was a new (to her, it was a hand me down from her cousins) blanket with the Disney princesses. She LOVED it. It was so pretty, and she LOVES Cinderella, Sleeping Beauty, Snow White, all of them really. She loved her new room, she loved her new bed, and she loved her new blanket. Except... she wouldn't keep it on at night. As soon as she got into bed, she peeled it down to the bottom of the bed and wouldn't even let it touch her feet. Even the sheets, she wouldn't keep on, it was too restricting. Which was fine, in the summer, but it does get cold here in Virginia (especially this winter!). Furthermore, when you have a big girl bed I just feel like you need to use the covers, or else why even have them?

One night in October, Jon was out of town and Lilly had a little cold. (Can I take this moment by the way to thank God that she has been so healthy for the past year? Only a couple mild colds, it seems like the asthma thing has been relatively gone for 2 years now!) Since I'm a mommy and I freak out when my child has a runny nose, and also because I get a little lonely and nervous when Lilly and I are home alone (not to mention, I sleep like a rock so if the princess was to have a coughing fit, I wouldn't even wake up), I took my sleeping ladybug and put her in my bed. She curled up in the sheets and duvet and had a restful night's sleep. (OK one last interruption - can I sincerely thank God again for letting my little girl be such a good sleeper in general - rarely wakes up at night, and sleeps until 7 am no matter when she goes to bed.) I woke up in the morning and - to my shock - this little girl was cuddled into my down comforter. I did a double take. Was she really still covered by this blanket? For the first time in years did she actually stay warm from keeping her covers on? I was amazed.

Of course I shouldn't have been amazed if I had thought about it. Lilly is a princess. And therefore she is like the spoiled princess and the pea. She decided somewhere in her infancy that she would only sleep with a duvet and down comforter, and not some shabby little baby blanket. She deserved the best, and here was my hint to buy it for her.

I still wasn't totally sure. Maybe she slept with the cover on that night because she was sick, or because she was exhausted, or because she liked being next to me. (We rarely have her sleep in our room.) But I was willing to test my hypothesis. I began searching duvet covers and down comforters. I realized that with her theoretical asthma & breathing issues, down alternative might be better than a regular down comforter. Furthermore, it needed to be a washable down alternative comforter, which is not as common as you'd think - many are dry clean only, and for a little girl who at some point we'd like to cut the cord with the nightime pullups, I figure she's going to have an accident here or there, so it would be nice to throw it in the washing machine if necessary. Oddly enough, the only two places that I could find a down-alternative washable comforter was Pottery Barn Kids and K-Mart. PB Kids was back-ordered, and K-Mart's was cheaper (and on sale on top of that!) so there we go. Then I got her a very pretty understated girly pink duvet cover from Land of Nod - mostly plain except for a couple big fabric flowers. She absolutely LOVED it when it arrived, and was so excited to put it on her bed. (I also got the matching pink ruffly curtains which we both love as well, and some sheets that were on sale at Pottery Barn Kids that just happened to match perfectly - white with pale pink, green, and yellow tiny flowers, which I feel like remind me of bedding I used to have as a child.)

And it worked. For the past two months now she LOVES sleeping with her duvet & down (alternative) comforter. She pulls it up to her neck when she gets into bed, and even likes "playing bed" with me - having me pretend to put her to sleep just so she can cuddle with it. I guess if you know Lilly, this story shouldn't be a surprise - my girl likes the nice things in life. But still it always does make me think - she truly is a princess.

(This post was inspired by the fact that Jon the other night, after putting Lilly to sleep, came out of her room and said "Lilly's comforter is the most comfortable thing ever! No wonder why she loves it so much!")

Ready... Set... Go!

On December 9, we loaded up the car with 3 large suitcases, a carry-on, a Princess backpack, an overnight bag, a purse, a stroller, an excited Princess, and a sleepy doctor. At 8:30 PM we were on our way driving towards Richmond, where we would be spending the night before our early morning flight the next day. Of course, I was driving because even though I have bad night vision and had a horrible migraine, the other two people in the car either a) have narcolepsy when they drive at night or b) are too young to have a driver's license.


For the record, Lilly is the best person in the world to go on vacation with. Before we even got to the good part of the vacation (cruise, Disney World, extended family time), she was just plain super excited about being in the car at night. She knew it was bedtime and she knew that there was a good reason for us to all be in the car after dark. We had been telling her about the vacation (a big boat, Mickey Mouse, Princess castle, etc) for weeks, but in a three year old's mind I'm not sure if she totally understood that we were going on a wonderful trip that night. But nonetheless she was so excited. We turned on Christmas music and after each song she shouted "Hooray!" and clapped and made us more excited as well. I thought she'd get tired in the car as she usually will fall asleep when we're driving at night, but every few minutes when I looked in the backseat she was wide awake and dancing. I then turned to my husband next to me to tell him "wow I can't believe she's still up!" but before I could get the words out I noticed he was sound asleep... :)


About 45 minutes into the car trip, Lilly was angry. She signed up for adventure and some Disney magic, and instead we were on a "long" (to her) car trip to a Richmond hotel. So, we decided to stop at Cheesecake Factory in Short Pump and get her a little dessert magic instead. Two coffees, a milk, and an oreo cheesecake later, we were back in the car a little after 10 pm. In another 20 minutes we pulled into our hotel - the Doubletree at the Richmond Airport.


Originally when I booked the flight, we planned on leaving first thing in the morning on Dec 10 to make our 7 AM flight - which means waking up and driving from Charlottesville at 4ish. It's what we typically do when we have an early morning flight, and none of us mind too much. But as the days got closer to the trip, I started worrying - this was no ordinary trip to Atlanta or weekend getaway. On Thursday we were to board a cruise ship that if we missed it (and there is only one flight a day to Orlando from Richmond), we would be out of luck on the cruise. The rest of my family got to Port Canaveral the day before so they wouldn't risk it - and we were still a flight away! Plus, I didn't want to be so exhausted at the beginning of the cruise from waking up in the middle of the night, when it was only a 3 night cruise. So I researched hotels near the airport and booked the Doubletree because of it's close proximity. WOW was I surprised when we pulled into the parking lot and it was not only closer than the "economy lots," but you could actually see the terminal from the hotel. Plus the bonus of free waters and hot cookies upon check in. The three of us were sound asleep by 11 pm, and had a 5:30 am wakeup call the next morning.


Next up... Would we wake up in time? Would we lose our passports at the airport? Would our flight be delayed? Would we make it to the cruise before the ship set sail? Would I lose my horrible migraine at some point? And would we have the best vacation ever...? Stay tuned.

Baby Jesus - Thank You

It's Christmas. As a Catholic, a Christian, it's the time of year to especially focus on God and on our Saviour, a little baby who was born thousands of years ago who taught and inspired and performed miracles, and who sacrificed his life to save ours. It oversimplifies things, but in the preschool world Lilly and I live in, playing with her "Little People" nativity scene, we see Baby Jesus and we sing "Happy Birthday" and say "Thank you." And then Lilly points out the sheep next to Him and she says "Baaaaaa!"

Aside from the fact that we are celebrating Jesus's birth this time of year, I have a much more personal reason to give thanks to Him this time of year. As I've mentioned before, exactly 4 years ago Jon and I were lost, or at least we felt that way. 3 months pregnant, armed with the news that our child was not "perfect," we were looking for somewhere to turn. We were in Atlanta for Christmas, announcing the news that we were expecting, hiding our tears and fears that there was something different about our child that others and perhaps even ourselves in some ways would find it hard to accept. We knew right away that we would have this child no matter what, and we knew that we would love this child completely and give her everything she needed. But yet we were sad, looking for a place to turn. I would have loved at the time to have talked to someone like myself, a mom who has been there are raised a child with Down syndrome who had a million and one positive things to say - but I would not meet other parents until after Lilly was born. I would have loved a book like "Gifts" and "Gifts II" which tell a hundred stories of real families living real lives, influenced by their wonderful gift of a child with Down syndrome. Yet those books would not be published for a couple more years. All the prior guides that I had used in my pregnancy that told me what not to eat, when to go to the doctor, etc, like the What to Expect book, were pretty bare when it came to "what to think about having a child with special needs."

We were in Atlanta. We were feeling sorry for ourselves, and wanting our baby to know she was loved, but unsure of what the next step was for us. How were we supposed to survive the next 6 months of pregnancy knowing that our child might be different? I was so protective of my child but I wondered and feared for her future - how others would react, what her life would be like. It was Christmas 4 years ago, dealing with these emotions, looking for inspiration. And then it pretty much smacked me on the head.

It was Christmas. We were celebrating a mom giving birth to her special son. God came to her months before and told her something was different about her child, but to not be afraid. Her child might not be a "typical" child but he would save the world. Despite her fears, she was to stay strong. Her husband got a similar message, to stay by her and their family, and support them. Christmas Eve mass 4 years ago had a homily dedicated to Joseph. About what he was thinking and feeling, how he knew to support his new wife and their child, and to have faith that it would all be ok. I sobbed through the entire message.

I understood these parents, their fears and their love for their child. I understood Mary, young and pregnant and unsure of the future her new family would face. She was ready for the challenge, and suddenly so was I. She gave me the faith and courage that this would turn out just fine. While our baby was not God, it was a precious gift from God - children with Down syndrome are not accidents or mistakes. Lilly was entrusted to our care because God knew we were a perfect match - not only because we would be good parents to her, but that she would teach us so much as well.

4 years ago, I was uncertain but suddenly had faith that it would all turn out ok. And it did; my beautiful 3 year old is sleeping peacefully with her red snowman nightgown in her white big girl bed, and I am anxiously awaiting her to wake up (and Jon to get home from work this morning) so that we can run downstairs and see what Santa left for her. She certainly has been a good girl, and she's so excited about Christmas this year. We did a trial run with presents last night, as Jon's parents sent her lots of gifts that she loved tearing the wrapping paper off and appreciating each thing that was inside. And we baked cookies for Santa and I had her leave two cookies and three carrots and a cup of milk out for him underneath the chimney. And she promply ran off with both the cookies and ate one of the carrots and drank most of his milk before posing for a picture with Santa's snacks. My daughter is indeed perfect, and we are ever so grateful things turned out the way they did. She is a Christmas gift, our little miracle. So for so many reasons - "Baby Jesus, Thank You."

Disney... Again

We found out a few months ago that Lilly has a small hole in her heart, that needs to be repaired. Fixing it entails a catheterization procedure that brings a little device up to her heart that will permanently clamp the hole shut, and we've set it up for January. As far as heart surgeries go, it's a relatively minor deal - but it's my baby, and it's her heart, and it's scary. So upon hearing the news, it's obvious what we did next:

We planned a trip to Disney World.

Obviously. Because when we found out that our daughter would be born with a chromosome abnormality, we took a babymoon to Disney World. And when we found out she'd get her tonsils taken out at 13 months of age, we took her to Disney World. And when we moved to New Zealand, we went to Disneyland on the way out and Disney World on the way back. So to subside the guilt and anxiety over her upcoming procedure, we *had* to take her to the happiest place on earth. :)

But we just went to Disney World for a week in June - which was such a wonderful trip - so we wanted to do it differently. In June, we hit every character meal, every ride, every thing we could do to make it a magical trip for Lilly. With a week, we were able to relax, hit the pool each day, and really immerse ourselves in the Disney magic. And honestly, while I love Disney World, thinking about doing it that way again just 6 months later did not sound that exciting. So we decided to think outside the box.

How about a Disney Cruise? we decided. We had never been on a cruise, and I've heard so many wonderful things about Disney Cruises from my cousin Suzanne. In researching, I found that there were great deals for mid-December. We booked a 3 night cruise, and I was so excited that I mentioned it to my whole family. And suddenly, one by one... they all booked it too! So then we had me, Jon, Lilly, Jon's twin brother & his wife and their son, and my three sisters and their spouses and kids. 15 of us going on a Disney Cruise! And to top it off, we booked an additional 3 nights at the new Bay Lake Tower at the Contemporary with Jon's brother's family. I couldn't wait to see Walt Disney Resort's holiday decorations!

We just got back a few days ago... did we have a good time or was a big family vacation too much for us to handle? And would we get seasick on our first cruise? You'll have to wait and see...