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Archive for the ‘Syndactyly’ Category

Back in 2008, I wrote an entry about Kara’s desire to learn to play the piano. She is a very determined girl, and I knew that if she wanted to play the piano, she would figure out a way to do so with her special hands. Unfortunately, some people have been skeptical about that and have even been so unkind as to say so to her, but I can tell you that Kara has never had any problems doing anything that any other kid her age can do.  In that post, I embedded a video of a young lady who is a concert pianist who not only has more issues with her hands than does Kara, but who also has mental challenges that Kara does not face.

Well, I must be honest in saying that we were not able to continue the piano lessons after a few months in 2008, but it had absolutely nothing to do with Kara’s hands, or ability to play, for that matter.  She was just too little to learn to read musical notation at that point in her life.  It was such a struggle for her that I decided it would be best to put the lessons aside until she was older. This past Christmas, Kara again asked me if she could try piano again, and since she has made so much progress in learning to read the printed word, I thought that she very possibly could be ready to read musical notation as well. So, she did start back up, and it has been soooo much easier this time!  She is doing extremely well and has not had any issues yet with her hands.  I know that the day will come when she will have to figure out her “own way” as the left hand chords get more involved, but I know that she can do it.

Anyway, today my sister-in-law shared another video with me that proves that with determination, playing the piano is achievable regardless of the obstacles that must be overcome.  This video is of a Chinese girl who plays beautifully despite the fact that she has no fingers on her right hand.  By the way, for those who don’t play the piano, the right hand usually plays the more technically difficult melody–so this girl is absolutely amazing!

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As I wrote in my last entry, while Kara was in surgery last week, I stayed in her hospital room to wait.  While there, I noticed the little bear that our church gave to Kara sitting on her bed with her glasses.  The message on the bear’s tummy said “Miracles Happen.”  I sat there and thought about that, and was reminded what a miracle Kara is.  God truly has done miraculous things in that girl’s life to bring her home and heal her body and spirit.  I thought about how far she has come and was moved with thanksgiving to the Great Physician for His healing power.  Today I put together this brief slideshow as a reminder of what a Great Savior we have.  I just can’t wait to see all that God has in store for my dear daughter!

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Please note:  Most of the information in this entry is accurate, but because Huang Min Cui’s history  is sketchy at best, some of the details (especially of the birth family) are speculative–how I like to think of them.

My story takes a break for this entry to make way for the amazing story of a little girl in China.   This background information is important to understand the miracles that I will explain in the next segments of my testimony.

On an unknown date in 2003 somewhere in or near Huangshan, Anhui Province, China, a baby girl was born.  Huangshan is a beautiful city known for Yellow Mountain and tourism.  To control it’s exploding population, China many years before 2003 had instituted its One Child Policy, which allowed families to raise only one child in most cases.  A preference for strong, healthy boys to pass on the family name quickly developed, and sometimes families who did not have a strong, healthy boy faced tough decisions.  Such was the case for this family in Huangshan.

This baby girl was beautiful, but not “perfect.”  Her hands were strangely shaped with fingers that were all fused together, as were many toes on her feet.  Most troubling of all, however, was a foot that curled in.  Despite the fact that this child had defects, the mother was smitten by the girl’s lovely almond eyes and hoped for a miracle to happen in the baby’s life.  She knew that she had no resources to help the little girl–she had only enough money to survive herself, she had no way of paying for medical intervention for her sweet baby.  Despite the pressure she faced to abandon the child immediately, the woman chose to keep and love her little girl for several months.  Her love for that child, however, eventually led her to consider options she never thought she would think about.  She knew that she herself could not provide for this baby’s needs, but she knew that the Social Welfare Institute in Huangshan took in babies with all kinds of problems and provided them with whatever medical care was needed.  It was a heartbreaking decision for her, but she decided that this facility gave her daughter the best chances for care and help.  So, on December 8, 2003, the mother bundled up her baby and placed her in a location where she knew the child would be found and taken in.

The child eventually ended up at the Welfare Institute where they gave her the name Huang Min Cui.  Huang, the family name, was given to all children in that orphanage.  Min Cui means “green jade” and they thought it described this lovely gem of a girl.  They followed the usual protocol of posting an ad in the local newspaper in an attempt to locate her birth mother, but no response came.  So little Min Cui began her life in her new home.

The nannies gave Min Cui as normal of a life as possible.  They fed her, held her, and loved her.  They sought out advice to try to repair the physical deformities that she faced.  In the first three years at the Institute, she had several surgeries.  She had surgeries to separate out the fused fingers using skin grafts taken from Min Cui’s arm.  The foot was operated on several times, attempting to straighten the crooked foot that made the little girl so wobbly when she walked.  The wobbling caused her at one point to fall and cut her head open which required stitches to heal.  The hands healed properly.  Her fingers were separated, but it left one hand missing some fingers and the other hand with short, deformed fingers, but both hands were very functional, and Min Cui adapted in her ability to do any task without any difficulty.  Her foot, however, was not easily corrected.  Several attempts were surgically made, but it seemed that the foot only tightened into a more distinct curve with each surgery.

The nannies described Min Cui as being shy and introverted, but very lovable and spoiled.  She had one friend that she consistently played with:  an older boy named Anthony that had similar hand deformities as her own.  Her life transitioned back and forth between the orphanage and the hospital many times during those three years, which left her confused and frightened of medical personnel.  She was very bright and learned things at an earlier age than many of the other children at her “home.”

Such was the life of this lovely girl, Huang Min Cui.  As far as she or anyone else knew, her life would continue on in the expected course for a disabled orphan:  she’d grow up and be turned out to try to survive on her own, which would be very difficult for such a person.  She may be able to have a job someday, but more likely, she’d earn her living by begging people to help a “poor, crippled” girl.  The prospects of adoption were bleak at best because of her physical challenges and because of the fact that this Institute did not participate in the international adoption process in China.

The Father of Orphans, however, saw Huang Min Cui.  It was He who had led her to this place to receive such love and care.  He was guiding her each step of the way because He had a plan for her that no one would understand or even believe.

I am adding two slideshows to this entry.  The first shows beautiful scenery from Huangshan.  The second includes pictures of Huang Min Cui as she lived in the Huangshan Social Welfare Institute.

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Click to play this Smilebox slideshow: Huang Min Cui
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Lovely, isn’t it?!  Yesterday  I fell on my way into church and landed right on my hand.   I knew right away that I had injured my middle two fingers–and I was scheduled to play the piano for the morning service!  Believe it or not, I made it through that with a lot of cover from the organ!  😉

Anyway, those fingers are so swollen and sore today that they’re not good for much.  In fact, I can only type this entry with one hand hunting and pecking!  I am so thankful that it is my left and not my dominant right hand.  I’d be much less functional if that had been the case.   It sure makes me appreciate how well Kara gets along with her hands–she deals with missing fingers all of the time, and most people don’t even realize it because she manages so well!   Lesson learned:  go on as best as possible!  😉

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Yes, this is a Thanksgiving paper!  We are enough ahead of schedule, that we are pretty close to Thanksgiving in our schoolwork.

This week I am going to write about something that I really don’t notice much, but that does come up from time-to-time:  Kara’s hands.  Kara had multiple birth defects, some of which have been corrected, and some of which are permanent.  Her hands are permanent.  When she was born, her fingers on both hands were fused together ( a condition called syndactyly.)  In fact, she had quite a bit of syndactyly on her feet as well, although that didn’t cause her nearly as much trouble as her clubbed foot which we had corrected after her adoption.  She had already had surgery on her hands when we met her, so her fingers were already separated.  She was left with very functional hands, but with permanent deformity on both.  Her left hand is missing her thumb and one finger, and even though her right hand has all of the digits, they are all misformed and of differing sizes.  This really has not affected Kara in any way, and she functions so well that most people don’t even notice her hands!  So, on a day-to-day basis, it is not something that we think about much.

Every now and then, though, we are reminded.  Like when Kara was learning to tie shoes.  That was a trick!  She didn’t have enough fingers to tie them like I do, so we had to invent her own way–and it works just great!  Other times were when she learned to hold a pencil and began learning to play the piano.  She always manages to figure out how to get along and adapts accordingly.

This week in school we had another “hand encounter.”  She was supposed to trace her hand to make a Thanksgiving turkey.  It didn’t even dawn on me that this would be different for Kara because of her fingers.  She is right-handed, so the video teacher said to hold her pencil in her right hand and trace her left hand.  She asked me if it was all right for her to hold her pencil in her left hand and trace her right.  I asked her why, not even thinking about the obvious!  She said that if she could do it her way, her turkey would have all of its feathers!  Of course, that was fine.  I told her if she could manage the pencil in her left hand, to go for it.  Well, as usual, it was no problem for her, and I think her turkey came out just adorable!  In fact, we have done several handprint art projects over the years, and I think her special hands make very cute projects!

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Ever since Kara has been in the Prairie Family, she has always shown a lot of interest in music–particularly in playing the piano.  At first I must admit that I wasn’t sure that she could learn to play the piano because of her hands that were born with syndactyly.  All of her fingers were fused together when she was born, and she had surgery prior to her adoption to separate her fingers.  She has excellent use of her hands, but she is missing fingers on one hand and has deformity on her other hand.  After living with Kara and seeing how well she functions, I decided to at least ask the orthopedists about the possibility of Kara learning to play the piano, and both Dr. G., who did her clubbed foot correction, and Dr. Benson, who has been her hand consultant, agreed that it would be great to let Kara try out lessons and see what she can do.

So, this summer I started both her and Luke on lessons, and both of them are just loving it!  Kara is quickly catching on to reading musical notation, and so far her hands have not slowed her down one bit!

Yesterday I saw the lady who taught me piano when I was a child.  In fact, I took lessons from her from the time I was in 3rd grade until I graduated from high school.  After I graduated from college, I returned to the high school that I graduated from and worked in the music department for several years, and this same lady became a colleague and friend during that time.  It had been awhile since I had seen her, so I went up to her in the store, and we had a nice visit.  I told her that I was beginning Kara in piano lessons, and her immediate response was that Kara would never be able to play!  That did make me a little upset, to tell you the truth! 

Our family never tells Kara that she “can’t” do things because of her special needs, and, you know what?  There really isn’t anything that we do that she doesn’t do too!  So, I just told myself that in a few years, I’ll just have to have Kara go play some songs for this lady!  I told my former piano teacher about Hee Ah Lee, who is a young woman from Korea that I have posted about before on this blog.  She was born with only four fingers, but guess what she does?  She is a CONCERT PIANIST, and she is completely AWESOME on the piano!  She is my inspiration for Kara, and I thank God for her.  For those who missed my first entry about Hee Ah Lee, here is another video of this amazing woman:

 

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I woke up this morning thinking about you.  I wondered who you are, where you live, what your life is like.  I wondered if you think about the day that you gave birth to a beautiful baby girl and the struggles that you faced trying to raise her.  I know that you wanted her–you kept your precious one for several weeks wondering how you could care for her.  Maybe it was a lack of resources, or just a sense of being overwhelmed trying to figure out how you would fix her special foot and hands.  I don’t know, but it must have been painful to leave her that cold November day in 2003. 

Do you think about your beautiful girl?  Do you wonder where she is?  Did you ever imagine that she would grow up in a land far away speaking a different language with different customs, different ways?  Do you try to picture how she is changing as she continues to grow up?

We have not forgotten you, and when your lovely girl is old enough to understand, we will be sure to tell her about you as well.  We want her to know that you gave us–and her–a very special gift.    We want you to know that although a few scars remain, her crooked foot is now straight.  Her once joined fingers are now separated, and she is normal in every way.  She is very happy and active.  She loves her brothers and sister and her new Mom and Dad.  One day she will love you too although she will probably never know who you are. 

So, thank you for being so brave.  I know the decision to give up your girl was probably one of the hardest things that you ever have done and that you may remember that day with tears.  But, know that we are grateful.  We thank the True Creator God for giving our daughter a chance for a new life.  May you be blessed knowing that she is healthy, happy, and loved.

In Humble Gratitude,

Your girl’s grateful new Mother.

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