My thoughts on the word "albino"

Each day I venture out of the house I am faced with a new situation regarding Lily. She is unique and different and causes heads to turn. I don't mind the comments and looks as much as I first did. At least here in the States they are more accepting. One situation I am trying to figure out is the use of the word "albino."

Growing up, I had heard the term albino a few times. Mostly in reference to rats with beady red/pink eyes. I think this is the reason I cringe a bit whenever I hear it in reference to my daughter. One man in China, an American, asked me point blank if her eyes were pink. Another mom thought she was blind. These are issues that people associate with the word albino and they are not true.

This week a mom, who I run into often, brought her child by to meet Lily. She then informed her son, right in front of Lily and me, that Lily is what you call an "albino." I let it go and decided to not make an issue of it. The next day she introduced her other son to Lily. The same situation occurred. At this point, I decided to speak up. I do not want the kids in this situation telling others, "Look. There's Lily the albino."

Let me explain why by quoting from the book "Raising a Child with Albinism" by the Nation Organization for Albinism and Hypopigmentation.

"The term 'person with albinism' emerged after the Americans with Disability Act passed in 1990 and the country began to move toward person-centered terms. 'People with disabilities' replaced 'the disabled.' The rationale behind this person-centered language is to put the individual ahead of the condition. When you refer to someone as 'an epileptic' or 'a paraplegic,' you are essentially defining the whole person by his or her condition. The word albino reduces a person to one characteristic, whereas the term 'person with albinism' identifies the condition as an aspect of the individual."

Lily, first and foremost, is a sweet little girl. She is energetic, loving and fun. She is bright, chatty, and full of life. This is what I want others to see. Her condition of albinism is a very small part of who she is. It is not what defines her.

I will not always make a point of educating others. Those who we see often I will try and get them to not use the term "albino." With strangers, I will let it pass.

Rude Comments

Today I attended the wedding of an old neighbor of mine. We grew up and went to school together. I loved seeing his family again as they were like my family when I was young. Lily was taking a nap during the ceremony so I left her home with Jon.

Knowing that we had some time before the reception, I went home and picked Lily up. It was so much fun putting her in a cute little dress with a little flower clip in her hair. Admittedly, I enjoyed showing her off to those that I knew there. I'm proud of my sweet little miss.

During the reception, an older gentleman come up to me. The conversation went something like this-

Old man - "You have a very unique daughter."
Me - "Thank you"
Old man - "How is it that you have red hair and hers is so white? Where did she get that hair color?"
Me - "She is adopted."
Old man grabs my hands and seems pleased. He leans in because he is hard of hearing.
Old man - "Where is she from?"
Me - "We adopted her from China. She has albinism and lacks pigmentation."
Old man drops my hands.
Old man - "I'm sorry. I'm so sorry"
The old man turns and walks away from me in a hurry.

Perplexed, I stared after him. What the heck is he sorry for? Is he sorry for me? Is he sorry for Lily? She's not dying. Her life is not forever changed because of her albinism. Jon and I choose this sweet little girl. She was not forced on to us. Better yet, GOD choose this child for us. We are blessed to have her in our lives.

I'm now faced with the fact that this comment will be just one of many we will be dealing with. I need to prayerfully consider my response. I need to think about how much information I am going to give to complete strangers. How will I respond? I need to respond with grace and love. Hopefully, my responses will be so that Lily will grow up confident in who she is. She is God's creation and He does not make mistakes.

Life at Home

I can't believe that we have been home 10 days. It feels as if we have been home forever and yet it also feels as if we just got back yesterday. The travel back was brutal. Imagine over 24 hours of travel with a VERY active 16 month old. The brutal part was not the toddler, it was just being on a plane for so long. Lily was amazing. She was content to play on my lap and walk up and down the aisle a bit. She hardly ever cried. God had blessed us with two extra seats, so Lily and I were able to sprawl out a bit and even get some rest.

Arriving in San Francisco was awesome. It was great to be on U.S. soil again. I feel blessed to be an American. Getting through immigration was not pleasant. We stood in the wrong line for quite some time. I believe that we were one of the last few people through the process. And there were hundreds standing in line! I didn't even mind the fact that the immigration officer was grumpy. I was just thrilled that English was coming out of his mouth! At this point our daughter became an American citizen.

Family greeted us once we had our baggage. It was wonderful to see our family face to face after so many weeks. We then headed to my mother-in-laws for lunch. After not eating for 24 hours, I was ravenous! I downed three sandwiches in a matter of seconds! YUM. I was concerned about the drive back to Fresno. Lily had never been in a car seat before and she did scream from the airport to our first stop. It wasn't pretty. Fortunately, Lily slept all the way home. Whew!

You would think that our first stop in Fresno would be our own home. Nope. I wanted to see all of our friends. They had been with us on this journey and needed to meet our little miss. It was a precious moment to see them all standing in my friend's yard to greet us. We are so blessed to be a part of such a group of friends. They filled our fridge with food, have fed us every night for the last week and will continue to do so for another week, and mowed our lawn. What a gift. (I would add pictures here if I knew how to pull them off of facebook.)

Adjustment seems to be a word that keeps popping up in conversations that I have with people. How are we adjusting? I would say pretty darn well. Lily had no jet lag. That's right, none! Alex had a bit of a hard time the first few nights as well as Jon and I. That only lasted for a bit. We are all sleeping great now.

Lily is proof that God is in control. She fits into our family like a glove on a hand. I could not have picked such an outcome. She is full of personality and will be able to keep up with my wild boys. New words and tricks are cropping up every day or so. Her latest is pointing at the dog and saying "out!" It cracks me up.

Our lives have definitely changed. Home schooling with a toddler does present some challenges. I have learned to lower some of my expectations and to be flexible in my schedule. We started back up yesterday and so far things are running pretty smoothly. Basics are all that we are accomplishing and I am content with that. Over the next few days we will slowly add more.

Another change is how I spend my day. Before China, I was addicted to the internet. Constantly, I was checking for updates or seeing what others were doing with their days. Lily has changed that and I am thankful. The computer is now taking a back seat in my life. Now I spend my days pointing to noses, toes, and bellies. We sit on the trampoline and laugh. We cuddle with a bottle and dance to music. We grin and give kisses. We hold on to each other knowing that our lives are better together.

Thank you Lord for those 1,422 days of waiting. Lily was worth every day.

Last Post from China

Friday May 7th

This is my last post from China. Praise the Lord! I am so ready to be home. Three weeks is a long time to be away from home. I can’t wait to sleep in my own bed with my husband instead of a child.

Today we went to the zoo. It was pretty hot and humid, but we had a good time. I would add some pictures, but the camera cord is already packed. I finally got to see a panda. It was fun. I do think we were more of an attraction for the school field trips rather than the animals. They thought Lily was very cool with her sunglasses on. She was a huge hit!

Tomorrow is going to be a very long day. We fly 3 hours to Beijing. Then we have a 3 ½ hour layover before we fly 12 hours to San Francisco. After arriving in San Francisco we will drive three hours to Fresno. It is going to be brutal. Please pray for us as we head home.

For those of you who live close, I can’t wait for you to meet my sweet girl. She was worth every day of that almost 5 year wait. I wouldn’t change a thing.

Consulate Appointment

Thursday 5-5

Nothing to write home about today. We took an oath at the American consulate promising to raise Lily as our own. It was anticlimactic. Thirty-one families were herded into a room to take the oath. One hour of driving for a quick two minute procedure. Only one more full day here in GZ!

The Famous Red Couch

Wednesday May 5th

Seventeen days down and three to go! Whew, this trip has been much longer than I expected. Two weeks is about my max for a vacation. Anything longer really starts to drag and I can’t wait to be home. I apologize for whining about wanting to be home.

There isn’t much to report today. I have not been feeling well and stayed in the room dozing most of the day. We were scheduled to take the famous “red couch” picture around 4:30 this afternoon. Don’t worry if you haven’t ever heard of this before. I didn’t know about it either. Supposedly, every family that adopts from China comes to the White Swan Hotel and has their picture taken on the red couches here in the lobby. The babies are all dressed in traditional Chinese clothing and plopped down to smile, or cry, for the camera. I had to buy Lily a 2 piece outfit since her belly is too big to fit into the cute little dresses. Our pictures did not turn out so great, but I will still post them for you.

That evening we went on the Pearl River cruise. The food was . . . not good, but the view was beautiful. Almost every building was lit and the breeze was refreshing. The river by day is a little grungy, but at night it sparkles. It was very enjoyable

Coming home, the Grabowski clan started to unravel fast. The boys were fighting, I was tired, and we were all starting to lose patience. Please continue to pray for us. We need to last just a few more days.

Off the Island

Tuesday May 4th

Today started like any other morning here in GZ. We slept in and then headed of to the buffet for breakfast. The breakfasts here in China are so unlike anything you see in the States. There are so many choices. From typical breakfast foods to what you would have for dinner. You could easily eat enough there and then not eat again until dinner. I think I am getting rather spoiled in the breakfast department here at The White Swan Hotel.

Following breakfast, we ran into some of the families from our group. They were all getting ready to go the pearl market. Our family had opted out considering we are not big shoppers. Yesterdays experience had been quite enough. However, I heard something that caused me to reconsider. All the moms were going and the dads were staying behind. Wait a minute, I could handle that! Asking Jon in front of everyone was probably a mean thing to do, but it got the intended result. I was free for the morning. Glorious!

In the afternoon we took a time machine back 100 years. What an experience. Remember that we are staying on an island. This island was built with more of a European feel and at one point the Chinese were not even allowed on the island. When you are here, you do not feel like you are in China. Crossing the bridge and entering the city of GZ brings you back to China.

Dragging our friends from North Dakota with us, we visited the local outdoor market. Braving the small alleyways, we walked backwards in time. The streets are only big enough to walk three across. Each cubicle held just one or two types of items. Nuts in one and spices in another. Turtles, frogs, and eels at the next. Our poor friends from North Dakota were feeling a little nervous and I think they were second guessing coming with us.

Most of the time I was focused on the things in front of me. I needed to make sure that I didn’t step on any of the frogs that were lying dead in my path. When I let my gaze go upwards, I realized these people live in these dark and dirty alleys. It’s hard to imagine people living in these conditions. They are gray and dreary. The bottom floor holds their supplies while they live in the top floor. My house is a mansion compared to this. I am truly blessed.

Monday 5-3

Today was out biggest shopping day. Yes, I actually spent some money. We each bought a piece of jade, a tea set, and a little painted screen thing. I also bought Lily a few pairs of the “famous” squeaky shoes. I have to admit that they are pretty cute. The squeaks, however, will not be in the shoes for long. They get pretty annoying.

While at the store, another adoptive dad from a different group asked me if Lily’s eyes were pink. I find that I am getting tired of everyone trying to figure her out. I know that people are just uninformed. Albinism is pretty uncommon in most areas. I think that before meeting Lily, I have only walked past one other person who had noticeable albinism in my entire life. I probably would be trying to figure her out as well if she was not mine. Choosing patience with others is going to be a constant battle for me. Albinism is not a scary or debilitating disability. People with this condition are not blind. They do not have red eyes. They can live a very normal life and be whatever they want. Driving is probably out of the picture, but that is not the end of the world. I have a whole new appreciation for those who appear different from the rest of the world in which they live.

Lily is still adjusting rather well. She definitely loves her mama. I can tell that she is going to pick up words quickly. Already she can say mama, papa, more (and sign it), and no. Her little voice is so fun to listen to. Sitting still is not her strong point. She is very active and curious. I am thankful that we do not have any stairs because she loves to go up and down them. Life is going to be fun at home! I can’t wait.

I’ll leave with a few random pictures. The night one is the view from our room.

A change of scenery

Saturday May 1- Sunday May 2

Saturday was our last day in ZZ. I am so thankful that we are moving on. The hotel is very hot and I am tired of not being able to put tp in the toilet. Most of this day was spent waiting to leave and traveling. Thankfully, with the help of some Dramamine, I made it through the flight without getting sick. Lily was a trouper! She fell asleep as soon as we took off and woke up right before we landed.

I am amazed at the difference between GZ and ZZ. I find myself staring at all of the foreigners. I am blown away that there is diversity here. For two weeks there have been no other foreigners except for ourselves. Growing up in Fresno, I am not used to this. I am accustomed to seeing every race around every corner. Being the only non Chinese has been such a different experience.

Upon entering Shamian Island, I am struck by the European feel of the city. Even at night when we entered the island, I could feel the difference. It is wonderful to find more people who speak English. It is so frustrating to not be able to communicate. At many of the restaurants we would have to resort to pointing and gesturing. Here, on the island, we have already run into shop owners who speak English very well. It is a breath of fresh air.

Lily had her medical examination today (Sunday). That girl does not like to be poked and prodded! She is one strong toddler. It would crack me up when she would try and shove the nurse’s arm away from her. The process went very quickly and we came back to our room for a much needed nap. I feel refreshed and encouraged that I might make it through this next week. After our last week, I wasn’t sure how we were going to survive 7 more days.

Lily is adjusting very well. She doesn’t cry much and sleeps really well. Since I have been carrying her around so much she is rather attached to me. She won’t go to anyone else these days but me. I don’t mind one bit. I am enjoying every moment of holding her.