CURE's Kids Conquer Cancer One Day at a Time - 2017: Bailey M - CURE Childhood Cancer

CURE's Kids Conquer Cancer One Day at a Time - 2017: Bailey M - CURE Childhood Cancer

China Extras

Our trip to China is a wrap. There were a number of random things that didn’t really fit into another post, so I’m putting them here. Some because they are entertaining and others, because I don't want to forget any of the details. 

• A source of much hilarity for us and much stress for our girls were the squatty potties. Many countries have some version them, although I’d have to say that they make more sense to me in a less industrialized area. However, they seem to be the toilet of choice in China, especially in the smaller cities and more traditional settings. These were not the hole in the ground like you would find in other countries, but rather an actual flushing toilet nestled level with the floor. An added bonus is that you needed to bring your own toilet paper. The first time Emmy met up with a squatty potty, it drove her to tears. Then in her words, “Her pee was on the time change,” and she simply refused to go during the day. Bailey insisted that her “kneekle” on her amputated leg does not bend far enough, so she tried to avoid them as well. It was inevitable that at some point  they would have to use one…and now Emmy is traumatized for life. She has been beaten by a toilet. 

• The driving is insane. There are about 2,000,000 scooters on the road and an equal number of bikes. There don’t seem to be any rules. It is completely normal to see an elderly lady riding her bike through the middle of an intersection or a mom with a baby on a scooter weaving in and out of traffic. Pedestrians beware. You do not have the right of way and they will hit you. It is madness. 

Lady almost being hit by a van. 

• I ate these potato chips one day. I’m not proud, but I was desperate and there was no other choice. They were steak-flavored. They did not taste good, but the smell was even worse. (Luke informed me that he also saw roasted squid-flavored chips.)

• In a restaurant, the waiters only come to you if you call them. If you want service, you must constantly wave them to your table. Additionally, if you try to customize something on the menu when ordering, it sends them into complete confusion and panic. Something as simple as a cheeseburger with no cheese…it is too much to handle. 

• All over China you see recycling trash cans. There are also the long-standing traditions of Feng Shui and Yin and Yang. The Chinese are very concerned with the aesthetics of things. If there is a round building, they put a square one next to it. On a cold day, they drink warm water. The architecture is quite beautiful. And yet, almost every town has smoke stacks billowing pollution. There is horrible smog. This picture below was from Lexi's home town of Datong, which was filled with these. And most people in China smoke, which also seems contradictory. It feels a bit hypocritical and it was fairly obvious that the China the government wants you to see and the real China are two very different things

• Elevators - The doors close extremely fast. If you don't hop on in about four seconds, you miss it. 

• We came across some unusual and different things in our hotels. One was a window into the bathroom. The curtain was completely sheer and served no purpose. (You could see all the business that was happening.) 

• Another was a mirror in the shower. (Um...no thank you.)

• These were the double beds that the kids shared. Super cozy. 

• Children don’t ride in car seats in China, they typically just sit in someone’s lap. We actually drove by a car with a car seat. But the passenger sitting next to it was holding the baby in their lap and the car seat was empty. So Lexi has never been in a car seat, but upon arriving home will have to spend her life in one. That should be a fun adjustment. Said this mom, never. 

• Because of both the language barrier and inability to custom order at restaurants, Luke and Emmy existed (due to their anaphylactic food allergies) on these camping meals and various snacks. They packed a thermos in the morning and then always had something with them to eat. It worked pretty well, although by the end they were very tired of camping meals. We did have food allergy cards written in Mandarin, but many times we felt like we couldn't fully trust what they were telling us because they don't have to deal with food allergies in China. 

• There are several Wal-Marts in Guangzhou. They are very similar to Wal-Mart at home. Except, you can buy live turtles and other sea life…to take home for dinner. 

• All of the hotels had a breakfast buffet. There was quite a large selection of both Chinese food as well as choices from other countries. Most days it was our largest meal because we weren't certain when or what we would eat again. My breakfast usually consisted of bacon, a hard-boiled egg, steamed cabbage and rice noodles. There were a lot of fresh produce options as well, but we stayed away from those in an effort to avoid any chance of tummy yuckiness. 

• Everywhere we went, we were like celebrities or a freak show...depending on how you choose to look at it. There were so many people staring and taking pictures of the kids. We had to keep reminding ourselves it was a cultural thing. It was fun at first, but by the end of our time, the kids were tired of it and would hide behind Patrick. We had a lot of things the Chinese people found intriguing and different...a large family, two children with light hair and fair skin, and an African. On the last day, Bailey wore shorts and her prosthetic was visible, which drew some of the longest stares of all.

We loved our time in China and all of the new experiences it brought. We expected differences and we tried to be respectful and adaptable. But we are we are feeling very thankful to be home to what we know and what is familiar. 

God bless America. 

Home Sweet Home

We left our hotel in Guangzhou to head to the airport at 5:00am on Wednesday morning. The travel days are hard and we were braced for a long one. Our itinerary was Guangzhou to Shanghai to Detroit to Atlanta. It was going to be a tough day, even if all went smoothly.

Upon arriving at the ticket check-in counter in Guangzhou we found a very long line. At the front of this line was a large group of Chinese people yelling at the Shanghai Airlines employee working the desk. It was crazy. We were a little slow to catch on, but we should have quickly realized that our day was not off to a good start. The people in line already knew what we didn't, that our first flight wasn't happening.

This should have been our first clue that the day was headed downhill before it even began.

Our 7:30am flight was delayed until 9:50am. Then pushed even later. There was a maintenance issue and the plane wasn't even at the Guangzhou airport. The first delay caused us to miss our connecting flight and thus threw the entire day into chaos. Fortunately, I have a smart hubby who travels quite a bit. We quickly got the sense that this flight would never happen and waiting for it meant that we would not be leaving for home on Wednesday. We found a spot in Starbucks and camped there while Patrick frantically ran around the airport making things happen. It isn't like being at home where you can just call the airline and sort it out. We were flying a Chinese airline and no one spoke English. At one point Patrick was attempting to understand what was going on with our first plane and the employee began flapping and pointing to her arm saying, "The wing is broken." It was like a bad game of charades.

This was our sweet helper. We could not have so quickly changed our flights without her assistance.

Patrick finally found someone who was willing to help us sort out the mess. She took him through the process (although the charades continued because she didn't speak English either) and she even walked him step by step to various locations in the airport. We were ready to get home and another night in a hotel was not an option. We rebooked the entire trip. This time with long layovers and a less than ideal itinerary and seating plan. We were going from Guangzhou to Shanghai to Los Angeles to Atlanta. It was insane and left me in the airport Starbucks with five kids for hours while Patrick sprinted through the airport trying to make the changes...including the retrieval of all seven of our suitcases from the first plane to then carry them himself to be re-checked on our new plane.

By the time we boarded the plane to head to Shanghai, we had already been at the Guangzhou airport for six hours and gone nowhere. But finally, our forward motion had officially begun. So had the long day of sitting in airports waiting out layovers. We had five hours after the flight to Shanghai and seven in L.A. It certainly would not have been our choice to do it that way with five kids in town, but it turns out we made the right decision to reroute. As we were leaving Guangzhou, we saw on the monitor that our first flight, the one that was supposed to leave at 7:30am had been delayed to 5:00pm. Oh my.

The kids had a great attitude and handled it well...better than their mama. I was on the cusp of a complete meltdown. The day had already felt daunting with our first plan. Contemplating an additional 12 hours of travel almost sent me over the edge.  I think we were most disappointed that because our arrival time in Atlanta had changed from 6:30pm on Wednesday night to 6:00am on Thursday morning, it meant no airport greeting party. We were looking very forward to seeing our friends and having them meet Lexi at the airport, but 6am was above and beyond the call of duty, even for family.

Thankfully we had gotten Lexi her own seat, because she ended up sleeping much of the way.

It was a long day of flying and waiting and flying and waiting. Once we arrived in L.A. though, the burden finally felt lighter because we were able to relax in the Delta Sky Club and eat American food. It was a wonderful respite after spending the prior hours sprawled out on various airport benches,  struggling to find snacks and kill time. The other terrific gift was that Lexi traveled like a champ, sleeping much of the ten hours from China and four hours from L.A. It could have been completely awful, but because the kids were so terrific, it wasn't. 

Lexi's first nap in the Sky Club. 

Bailey doing homework. She was intent on not falling too far behind.

So thankful for my baby whisperers. 

Atlanta. So happy to see this on the flight screen. 

Finally, 40 hours after we had arrived at the Guangzhou airport, we made it to Atlanta. And guess what we found waiting for us at the top of the escalator? A welcoming crew! These sweet and precious people had gotten up at 4:00am to come to the airport to meet us. We didn't expect anyone to be there and it was such a thoughtful surprise. We continue to be overwhelmed by the length that others go to love us well. Patrick and I are blessed with some amazing friends, but the really awesome part, is that so are our kids. They have parents who are teaching them how to do relationships well and our children reap the rewards of friends who are all in for the long haul. These folks have been praying for us and our baby girl and they will be the ones loving on her and walking with us in the years to come. After what we have experienced in the world of childhood cancer, we realize that life is short and precious. We are called to live and love big and doing life with these people is one of our greatest treasures.

We love our people. What a sweet surprise. 

We are so thankful to be home, in our own beds, eating American food, and finding some sense of routine. Well, I'm sleeping next to Lexi's crib, so I haven't exactly been in my own bed yet, but it's close enough. We are having a tough time adjusting to the time change, but hopefully in another few days we will all be feeling better. Our trip was incredible and we felt the hand of God protecting us the entire time. We were safe and healthy for two full weeks in China and all five kids handled everything much better than we expected. We are so glad that we decided to take them with us. Now that we are home, it is wonderful that Lexi has six familiar faces in her new environment, instead of just two.

Thank you for praying us through this journey. We continue to ask for prayer as we find our new normal as a family of seven and for Lexi, as she faces a long road to health ahead. As always, we are so thankful for this wonderful community that continues to walk with us through the valleys, mountaintops and everything in between.

Last Day in Guangzhou...and China

We just wrapped our last day in China. We had a relaxing time without anything on the itinerary. A late breakfast and walk through the park and koi pond at the hotel made for a peaceful morning. We spent the afternoon packing...which was so much less stressful than packing prior to the trip. This evening we had one last dinner with our travel group from Great Wall. What an amazing bunch of families and we will miss seeing them every day. 

Tomorrow morning we leave for the airport at the ridiculous time of 5:00am to head first to Shanghai, then to Detroit and finally home to Atlanta. We are all feeling a bit depressed about saying good-bye. This trip has been completely amazing and has exceeded our expectations on so many levels. The kids handled everything incredibly well...the time in airports, the appointments, the late nights...they were rockstars. We do miss some of the comforts of home, but our time here has been wonderful. The authentic answer is that going home scares me a little. We have essentially been on vacation for two weeks. Patrick has been here with me every day and there are no sports or activities or crazy busy-ness. At home, he will go back to work and I will be on my own. I was barely keeping this circus running before we left and I have no idea how to fit a baby who needs naps and early bedtimes into this life with big kids. And since we will be focussing on attachment, I will need to be responsible for meeting Lexi's needs, so leaving her with a sitter will not be an option for quite some time. While I'm sure we will sort it out, it causes a little anxiety. Finding any type of "new normal" usually hurts at least a little and I believe that's why I'm fearful. My prayer is that God will multiply time and resources and that He will fill in those gaps when I am not enough mother for these five little souls. 

Lexi had another great day.  Sweet baby girl is steadily improving. In the previous post I mentioned that we are seeing daily progress in many areas. She has been with us exactly one week today and the transformation is remarkable. She was on the floor playing with the kids this afternoon and was far more mobile than we have seen previously. She has been very quiet, but today we heard her laugh for the first time and she was also babbling. I suspect it will be a while before she makes the language transition, so we are working on some sign language to help ease her frustrations. In just a couple of days she has already learned to sign "more" and "all done." She continues to eat like a champ and she leaves us in awe of the food she can put away in a meal. Today she discovered ice cream and bubbles and I'm not sure who had more fun with that, Lexi...or us?!?

Children who have spent time in institutions or have gone through trauma come with mixed ages and developmental stages. While biologically they may be a certain age, if they haven't had someone loving them and meeting their needs through each milestone, their real or emotional age will not match. Most likely they will be in some combination of multiple ages and stages. For example, in many ways, Lexi is every bit an infant. She doesn't crawl yet and has trouble sitting up for long periods of time by herself. She is behind in her speech and also her fine motor skills. But she has a mouthful of teeth and can eat almost anything, she can drink from a sippy cup, she no longer puts toys in her mouth, she sleeps like a champ and her diaper changes are minimal...all typical traits of an almost two year old. Many times once in a family, kids will pass through the stages they have missed more quickly, but it is still important that they pass through them. You basically have to re-parent what they missed in order to help with healthy development in the long-term. 

Koi pond and garden on hotel grounds. 

Our hearts are feeling a bit heavy as we take Lexi from her birth country. There is such a long and amazing history in China and she is losing not only that, but everything she has known to this point. But there is no hope for her here. You rarely see disabilities or people who look different in China. There are both societal pressures and a lack of accessible healthcare that make life very difficult for those with challenges. In the condition we found her, she would have been lucky to have survived. So while we are sad that it must be this way, it also feels very much like we are rescuing a wounded soldier out of a war zone. Instead of having to fight to survive, she will grow up in a family and community where she will be able to thrive. Instead of feeling discarded and neglected, she will be loved and treasured every day of her life. But the changes are not one-sided. By pouring into her, she will transform the rest of our family as well. Adoption isn't just for the good of the orphan. It changes for the better the lives of everyone involved.

We have a LONG travel day tomorrow and we covet your prayers for safety, patience and that we love each other well along the way.

Dinner with some of the Great Wall kiddos. 

Good-bye Guangzhou

U.S. Consulate and Shamian Island (Monday)

We have had so many wonderful days here in China that, other than the day we got Alexis, it is difficult to choose my favorite. I thought I would feel so ready to come home after two weeks away, but we are not in a hurry to leave. Having the kids here has been wonderful and was absolutely the right decision for us. Instead of missing them and longing to be home, we have been able to enjoy every second of this trip and we have some incredibly special memories to cherish forever.

U.S. Consulate

Today we finished the last piece of adoption business here in China with a visit to the U.S. Consulate. Lexi now has her Visa and is ready to come home with us. There will be re-adoption paperwork upon returning home, so that we can get her a U.S. birth certificate and social security card, but we need to celebrate this victory for now. Patrick has always been in charge of our paperwork and he has done a fabulous job figuring out the impossible labyrinth that is a Hague adoption. Caleb and Lexi were his paper pregnancies and he is doing the happy dance to have finally delivered his babies. ;)  For the record, he did everything perfectly without an error...so I am very thankful for him!

We took an afternoon trip to Shamian Island. This is a beautiful, peaceful area that was once a British and French settlement in the mid to late 1800s during the Opium War. It looks nothing like the rest of China and it felt as though we were spending the day in Charleston, SC. We had a very American lunch at Lucy's on the island and Luke was thrilled to finally get his real hamburger.

Lunch at Lucy's

A happy boy with a hamburger. 

Lexi ate this grilled cheese, only after eating an entire burger patty.

Shaman Island...so similar to Charleston. 

There are many Starbucks here in Guangzhou.

We did some souvenir shopping on the island and thoroughly enjoyed the mid-70s temperature and sunshine. It was a delightful day. Tuesday is our last full day here and we don't have much on the calendar. We are hoping to relax and begin packing for the long trip home.

Chen Temple and Shopping (Sunday in Guangzhou)

Chan Temple

It is Sunday in Guangzhou. This morning we toured the Chen Temple. It is a beautiful building that was built for the worship of family ancestors (which is a significant thing in China). I am continually amazed by the architecture. These building are hundreds of years old, and yet the detail is so beautiful and ornate. It seems impossible. We have had amazing opportunities to learn about the culture here and even now with a little one in tow, it still feels very much like a vacation.

Caleb's new Chinese BFF, Noah

Lexi is doing wonderfully. She is so tiny and delayed, but we are all incredibly smitten with this beautiful princess. She came to us weak and listless. She could hardly sit up. She was so lifeless that she wasn’t able to raise her arms and could barely muster a cry. Our main goal has been to keep her belly full and at this point, she is eating like a grown man. There is no off button and she will eat as long as you’ll keep feeding her and she never get sicks. She was starving. Each day she comes alive a bit more…more smiles, more movement, and more joy. Initially, she couldn’t even lift her arms to feed herself, but last night at dinner she polished off a whole plate of snacks on her own. The other thing we noticed is that the first few nights she stayed completely still in her crib and would wake up in the same position in which she fell asleep. Now, she is all over the place and wakes up completely sideways and shoved to the top of the crib…which is much more typical for a child this age. During play time on the floor last night she was so much more active and mobile than we had seen yet. Every day there is a little bit more life and it leaves us feeling hopeful. Of course, she has a very long way to go, but the speedy and noticeable progress, after less than a week, is encouraging. 

We had dinner tonight at an Irish Pub because well, we simply cannot do any more Chinese food. Then it was off to bed because we have an early appointment at the U.S. Consulate on Monday morning. 

Almost done! 

Today I had my first Starbucks of the trip.

Finally, we are getting some smiles.