Yes! Finally some answers....

Here's the quick version of what we found out today.  GREAT doctor---pediatric/genetic retina specialist and prof.  He identified it right away and spent much time explaining the diagnosis to us.  They will be doing some genetic testing and some more testing on Wed under anesthesia.  I'll update more later...Jack is already sick of the hotel room and he is whining VERY loudly about getting out of here...going to find something to do.  See below for the diagnosis:

"Juvenile X-linked Retinoschisis" is a genetic disease of the retina and affects primarily boys and young men. It is estimated that retinoschisis affects one in 5,000 to 25,000 individuals, primarily young males. Affected males are usually identified in grade school, but occasionally are identified as young infants.

Retinoschisis is a disease of the nerve tissue in the eye. It affects the retinal cells in the macula (the central fixation point of vision at the back of the eye). Retinoschisis is technically a form of macular degeneration. However there are different types of macular degeneration and many people diagnosed with macular degeneration do not have retinoschisis.



Retinoschisis is a genetic eye disease that affects the vision of men who inherit the disease from their mothers. This condition frequently starts during childhood and is officially called Juvenile X-linked Retinoschisis. Affected men inherit this trait from their mothers who carry the condition but retain normal vision.

This Road I'm On

Gray and a bit cold, but absolutely no precipitation in view (or hiding on the road). I'm very happy to say that we are off to Detroit...with no bad weather! When you prepare for the worst, you are pleasantly surprised when things turn out fine :) With a trip full of uncertainty, I'm thankful that bad weather isn't a part of the journey.

In preparing for this 12-hour voyage, Jack packed his bags 3 days ago, stuffed full of Lego's, army guys, books, drawing paper, stuffed animals, a 1-inch packet of homework, and snacks of course...4 Reese's bars, 3 packs of gum, and who knows what else. I happened to find in the bottom of the suitcase...a bag of miniature marshmallows! (just in case?)

I'm sure a few people think we are wacky, but we opted to rent a car. We couldn't swing the Hummer, but did manage the sweet Cadillac crossover....thanks to the sweet agent guy at Budget. After hearing the purpose of our trip, our rental transformed from "yeah, I don't know what kind of car we'll have for you" to "oh yes, I see here that you'll be in the Cadillac...nice. It always helps to inquire and tell people what you want :) Seriously, not like we were renting just to drive around KC, traveling 1400 miles necessitates comfort and safety! And, crazy to trust the trip to our 10-12 year old, 200K mile vehicles, when you can have a 2010 with no issues for the price of a few dinners out.

After picking up the rental, Jack is officially on his way to find out why he can't see and to possibly have retina surgery.

Just like a kid, after a couple of hours outside of KC, Jason got bored and began messing around with all of the buttons and dials on the dash..."Hmm, what's this?" he says. Beep...and a silky, female voice says, "OnStar at your service." Me.."That's the OnStar button!" Him.."oh, what's this red one?" as he pushes it. The smooth voice again, "Connecting to OnStar Emergency." What!? Geez, he dialed 911. "This is OnStar, what's your emergency?" Gosh, what do you say? I was having flashbacks. Um sorry, we don't really have an emergency...unless you count that the 7 year-old has to use the restroom and we are in the middle of Missouri nowhere. We frantically pushed every button nearby, but couldn't figure out how to hang up. We apologized to the woman in the ceiling, explaining our rental situation! That kept us busy for the next hundred miles, deciding what types of emergencies that one could announce in their car....and also discussed how long it would take our kids to push that button if it were in the driveway longer than a few minutes ;) So far it took the Dad one hour to find it :)

Typical...

Am I surprised that our entire driving path to Detroit will be mauled by snow and ice, just as we are preparing to leave? I don't typically view myself as a pessimist; however, I have secretly known all along that this would happen. It is as I suspected...we will battle the weather in order to get Jack safely to his mysterious appointments. Sadly, not surprised at all :(

Joy in the Midst of 4 Year-Old Psychology

I have a love/ignore relationship with my kids when they are four years old. It is that time frame that they are budding with independence, are trying to figure out the world, and when their language is complex enough to really tell you about the profound thoughts in their mind.

I try very hard to ignore the negative energy that radiates from their little bodies as they: flop on the floor and wail in the middle of a funeral visitation; scream in my face how they detest my lasagna; or holler at me from three stories away that they need assistance on the toilet.

But, I savor every moment of tenderness and LOVE it when they: wrap their whole little body around me like a monkey for me to carry around the house; greet me under the covers in the cold wintry darkness, while I punch the snooze for 30 more minutes; and (MOST of all) present me with fabulous attempts at language-play and "deep thoughts."

Ben is at that age now, and here are some of his most recent pondering...

He jumped into my bed a month ago, caressed my face, smoothed away my hair, and lay there quietly. Then, as if out of the blue (the most random color of blue you've ever seen) he says,

"Mom, do fish have eyebrows?"
Me: "Um...hmmm, no. Well maybe they have a brow bone; but no, not an actual eyebrow."

All the while, in my sleepy haze, I'm doubting myself. Well, DO they have eyebrows? I asked myself. I scanned all of the fish images in my gray matter storage...let's see...eyebrows would indicate hair....and finally made a confident conclusion that "no, they don't" (whew...a sigh!).

Then Ben takes it to the next step, "Well why do WE have eyebrows?"

As he waited for the answer, I realized that the response must be logical and yet somewhat exciting....the typical reply of: "to keep stuff out of our eyes," is just boring. So, I decided to give him the full explanation on facial expression and non-verbal communication....in four year-old language, "So that people can see our feelings better!" (That is actually true, by the way :)

He was VERY happy with that answer and lay there for another 10 minutes monologuing the fact that fish don't have feelings, so they don't need eyebrows...(smile) what reasoning :)

Tonight, he jumps into my face as I type....
"Mom, can you come look at my...um....my whack...I mean my whacker...I mean....Mom can you come look at my Wacko Mode."

It is SO hard to keep a straight face..."Your wacko mode?" I ask innocently (I want to say, "You mean the wacko mode that you displayed this morning when it was time to leave the house!?")

His sweet reply,
"Yes, come watch me...you take Buzz and you WHACK him,

and he flies across the kitchen floor. Come, I'll show you!"

Oh, so THAT is the noise I keep hearing down there! He says this while grabbing my face and pulling it close to his, until our eyes are a half inch apart...undivided attention, you know?

"LOVE relationship" moment with my four year-old!

Jack's Eyes: On the Road to Answers, Literally

When I was little, I used to imagine that the Earth was like a game board and we were the little playing pieces. I would picture God with the board all spread out, towering over it and reaching down with huge hands---adding this, removing that, adding people, moving people, or removing them...maybe swirling the oceans with his finger, just for fun. Sometimes, I even imagined Him swiping away the naughty people, or creating terrible scenes to make things interesting.

I know that sounds somewhat irreverent, but I don't mean it that way. Of course, I know that God doesn't manipulate us, torture us, or "wreck havoc" on our lives just for fun. But as a child, I truly felt sometimes that I was a game piece...things happening in my life that I couldn't control, and my job was to just do my part and "play the game." There is something about that image of God hovering over my experiences that always gave me some kind of comfort, creating a child-like picture of how He knows everything that is happening, can see it all, and is actually in control of it all.

This is no game of chance or strategy, though...it is my life, and at this point it is full of events that are beyond my control. Events that remind me again that my role is to play my part. I'm starting to feel again like a little game piece floating from place to place on the board.

To stick with the metaphor, the wheel on the Life game has spun and we have landed on the "your child is ill" space. Or to be more specific, "your 7 year-old can't see, go straight to the doctor." The next space we landed on read, "your doctor is getting you nowhere, find another doctor." The next space indicated, "you find a good doctor and beg them to see your child, pay $$$ in bribery fees" (just kidding). Next, "doctor sees your child, prepare for a long journey to Detroit" The next space is where we are currently, "wait here..."

So, this is where we are, waiting. In real terms, this is what we know. Jack has had blurry vision in only one eye since Sept-ish. Our Opthamologist referred us to a Retina Specialist, who was baffled and really didn't "listen" and concluded..."come back to see me in a month"...I really don't like that response. In the end, we had to ditch him...his practice was horribly swamped and he didn't really specialize in pediatrics. Finally found an outstanding pediatric doc (who is also a Professor at UMKC) who squeezed us in for an appt (after much pleading and stating our case).

Results....doc was very attentive and concerned. He saw a cyst on the retina of the good eye, which is interesting, because that eye sees clearly. And they are still uncertain of the bad eye, because the vision in that eye fluctuates from very poor to okay. SO, shock of shock, the doc is sending us to Detroit to a Retina Center to see specialists there. They want to determine the etiology of the haze in the retina of the blurry eye and determine if the "cyst" needs to be removed from the retina of the good eye.

We travel to Detroit from Feb 8-12, with possible surgery on the 10th. Flying is out, because you can't fly after eye surgery and our schedule may fluctuate...must drive...ugh! I'm voting to rent a huge 4x4 tank-like thing, maybe a Hummer (Michigan in February!). Jack's vote..."We are renting a car? Alright! Let's get a Mustang!" Sweet boy, we aren't going for the muscle-car cool factor, but a tough beast that will get us there and back... :)

I keep trying to convince myself that this is probably no big deal, maybe they will find nothing---that's what you want, right? But, the rational part of my brain knows that Dr's. don't just send you 700 miles away for "nothing." There must be "something." And, I do hope that we come home with some answers.

Sorry for the delay in the info, family...I know you have been wanting more details. This is all we know for now...will keep you posted. Pray for answers, successful procedures (if needed) and that I will be a strong Mommy....this part of the game is not fun.

Will I Make It Home?

Time to get back to the routine...but will I ever get there?! My bags are packed, hung out at the beach for a bit, collected some white sand for the kids...tonight hanging with Aunt Sue, munching seafood dip and sipping wine, scouring the weather channel.

For the last day of my "vacation" I had a near freak out. Aunt Sue insisted on driving me over to Sanibel. The several bridges to get over there are surrounded by the Gulf....one to two miles of bridges! I REALLY dislike bridges....I mean really. Going over to the island, I felt somewhat okay...couldn't enjoy the beautiful view because my aunt kept gawking out and veering across the lanes. "breathe, breathe, don't imagine yourself splashing off into the blue abyss," I told myself..."anything in this car to bust out the window if we go over?" nope.

On the island, the driving tour was short...drove by a friend's house and decided to return to Ft. Myers. As we approached the bridge to go over the causeway, it started. Feeling nauseous, sweaty, my ears started ringing, space turning dark and closing in...uh oh, panic attack! Breathe, relax, nothing I can do, enjoy the view (hey, that rhymes). Then I thought, "If I pass out on the bridge, Aunt Sue will SURELY lose control of the car! Fight the fear!"

Well, we made it over and are safe...whew!

Paranoia overcome :)

Love the water, but only if I'm safely on the shore :) Now to get the plane landed and my car across the snowy state...can I afford property in Costa Rica? Serious.

To Search or Not?

I just found a new yahoo group called Chongqing Sibling Find, for families who have adopted from the area (Fuling included). Here parents post pics and details about their child in hopes of finding any siblings/twins who have also been adopted.

I first went to the site in response to a plea from an acquaintance to look at some pics to id a baby. I went directly to the group, wondering if it would be a pic of Lydia...excitement, nervous, then disappointment...it wasn't her. But now the door is open and I'm wondering if I should walk through it.

If I post pictures, what will happen? Does she have a sister out there? If we find a sibling, then what? I'm sure there are many dynamics that surface from that. Am I ready for that...being connected to another family forever?

I'll think about it for a few days...it really can't hurt I guess. My best chances of finding a sib is to post her medical issues...am I ready to expose all of that to strangers with her pics? Geez, always so much, but could reveal such tremendous things...it would be so fruitful for Lydia. Nothing about having a little girl from China is easy, so might as well make everything even more exciting :) Stay tuned!

Is This Florida?

Well, I should have known. My chance to get to Florida and they are experiencing record lows! Lows are in the 30's and highs in the 50's. The orange and strawberry crops are suffering along with me.

Because I'm not basking on the beach, my aunt is fretting over how to entertain me. She has missed her calling, I think. She should have been a tour guide or activity director! I have taken the ultimate driving tour of South Florida, which has included every boutique, views of every condo/hotel and every beachfront restaurant, monstrous mansions, and every palm tree :) I smile and bear the "go go going..." but really want to convince her that I am even more content bundling up to walk the beach or just sit and stare out at the ocean. She insists that I must see every inch.

Drove down to Naples yesterday. Alot of people like to gawk at houses the size of hotels (lived in by two persons, I'm sure), but I find it rather sad and wasteful. It is terrible that many people find their self-worth in how huge their house is or making sure that their yacht is bigger than the neighbor's. Also sad, is seeing women who have nothing better in life to do than meet at the club, "do lunch," or entertain on their boat. This is what I saw in Naples...I'm not impressed by that kind of thing. I sound harsh don't I? Hey, I love beautiful things (who doesn't) and I also love leisure; but, I also like my typical (read, not extravagent) life! I love to meet people that are so humble and charitable that you would NEVER know that they are absolute millionaires...they earn my admiration :)

Almost time to leave the ocean. It is the one place on Earth that takes my breath away and somehow speaks to my soul. It is so beautiful and fun, yet so vast and dangerous. In fact, I'm really not sure why I wasn't born in La Jolla or Newport Beach or someplace salty like that...it's not fair! I miss Cali!

Back to the family soon. I'm ready (I think). Starting to get anxious about all that I need to do, making it difficult to relax and enjoy. When that starts to happen, you know it's time to go home :) Be home soon to 5 degrees...hope my car starts at the airport...it's just not right :(((

Saltwater Therapy

Every mommy needs a break...but this mommy needs a serious dose of saltwater therapy in order to maintain sanity. In fact, a bit of white sand and palm trees doesn't hurt either. So, that is exactly where I am.

We are all missing my Uncle this holiday, as he passed away in November. My aunt is a determined woman, and is showing herself strong. I am so thankful to have the opportunity to go with her on the annual winter getaway to Florida. We have had such a wonderful time being together and as she says, "we both need to relax".

So, here I am spending the new year in Florida, with my dear aunt, who is more like a grandmother to me. Years of having babies and raising little ones has kept our time together infrequent. I'm so happy for the chance to help her adjust to her time here without my uncle and renew our relationship.

I find that we are very much alike! Sand lover, spunky, fun, determined, and independent. (I guess that can also read: bossy, hard-headed, busybody, and micro-manager :)) Aunt Sue has taught me much about fashion, classiness, etiquette, and poise ever since I was a little girl. I haven't always modeled her advice; but as it goes, now as an adult I can appreciate her influence in my life so much more.

It is wonderful spending time together and helping her set up the house for the season. We have had a great time doing absolutely nothing! Laughing, catching up, lounging on the beach, shopping for unique jewelry and bargains, painting our nails, talking over coffee and wine...it doesn't get any better than this :)

The funniest adventure so far has been our treasure hunting on the streets of the neighborhood before trash day---she always has an eye for great finds, especially items that other people think are un-useful, but are perfectly good with a little TLC and know-how.

Yesterday on our way to run errands, we spotted a beautiful (and heavy!) dark wooden wicker sofa sitting out for the garbage. I said, "Wow, that looks perfectly good!" Her response, "Well it does! Let's stop....." and then, "You know, we just have to get it!" Well, she has a huge old Lincoln (or something) and there was NO way it would fit in her car. But, with the house just around the block, she fetched the neighbor, he slid HALF of the long sofa into the trunk and pronounced, "No it won't work" my reply..."Start driving, I'll carry the other end" and I carried half of it home while he drove the other end in the car. We laughed the whole way! The things you do for people you love. Packing around kids for a living does have its benefits....it weighed a ton. I think that I lost some feeling in my ring fingers...I was never so happy to get around a block in my life. But, the whole time I was thinking that she just HAD to have this piece of junk, how we could make it look brand new, and thinking of the resourcefulness that I had learned from her :))

I miss my kiddos, but I've learned that in order for me to be a good Mommy I need to do things for myself (even if that means escaping for 10 days!). And, I'm learning that I can't let my life become so busy that I don't have time for relationships. Here's to improving both of these aspects, self-care and relationship-building, in 2010!

Happy New Year from Ft. Myers Beach!

Christmas in Indiana

Happy to spend time with my family in Indiana...the kids were excited about the French Lick Springs Resort. Me too, actually :)


I have admired this historic hotel since I was a little girl and of course never stayed there because we always bunked up with family. Now, we have the chance...and managed to snag a superb room---so big that 12 of us could have stayed in there! However, I'm sure my sister and her family were just as content to have us down the hall :)



http://frenchlick.com/hotels/index.jsp









The kids relaxing in bed, waiting for Santa.














Pizza and bowling in the hotel on Christmas Eve.

Lydia playing in the water

40 degrees outside, so we snuck out to the hot tub :)

Kids loved the dolphin fountain

Sam, Grayson, Ben, Jack, Lydia, Emma, and Raina

The girls having fun, leaping across the beds!

The boys goofing around

Cousins, catching up and acting loud, I'm sure. We only had one complaint...a grumpy old man, who yelled at the kids for running down the hallway to my sister's room. Grinch....on Christmas Eve...really?

Christmas at Whitefield

Jack at the program standing next to sweet Ruby Jane---they have been known to secretly hold hands on occasion in Kindergarten :) His class did an entertaining rendition of Luke 2. They had memorized the entire piece...wonderful!

Sam's class, in learning their Latin and the architecture of castles, went to Holy Trinity Episcopal Church downtown for a field trip....what a marvelous place! I got to go along and drive some of the boys. The church is built with huge thick stone walls, with absolutely beautiful stained glass and a gigantic pipe organ. Their music instructor came along and they performed for the music director of the church (he was an interesting old guy) and of course, he LOVED to hear them sing. Their sweet voices echoed through those walls and it was magical :)

He Can See!

A failed vision screening, then to Dr. Cibis, then to find an optical center that takes our insurance. FINALLY, after a bit of hassle, Sam has his new glasses. I'd like to plug Brookside Optical for their outstanding service (helpful, friendly guys) and tons of super cool glasses to choose from!

http://www.brooksideoptical.com/

Sam didn't go for anything outlandish; however, he did consider bright blue or green. He was logical about it though, and reasoned that a more traditional color would be more acceptable with his friends. I agreed, and mentioned that lime green seems a bit girlie and would clash with the school uniform....he hastily took them off and told Jeff (our trendy optical guy) that the other choices were too weird; he would take the brown frames.

Doesn't he look handsome and exceptionally intelligent? :)

Welcome Lilah Ruth!

I have a new niece!

Lilah Ruth arrived after much waiting and waiting, making 10 grandchildren now from my side of the family. Despite the frigid temps and beginning of a cold, I wrapped up, gargled tons of Listerine to kill threatening germs, and went down to the Plaza to give her a big squeeze :)

She is absolutely beautiful and a sweet little peach. The boys say that I am a baby hog and won't let them hold her....I counter that with a reminder that little ones need experienced consoling and she needs to learn her aunt's voice and special cooing and bouncing :)

Lydia's Chinese Dance

At age three, I'm not really sure what I was doing to foster my experiences in the arts. It probably amounted to culinary arts consisting of mud pie creations, such as evergreen/rock stew with a mud sludge base. Perhaps I was doing the Hokey Pokey or Disco Duck out in my yard? Not really sure, but I do know that I was never very interested in dance or gymnastics. Primarily because I knew that dancing was equivalent to "performing", meaning that at sometime or other, I would have to get up in front of people and prance around in some silly way...that seemed ridiculous to me.

Shyness and lack of confidence kept me from doing a lot of things---piano lessons for instance. But, I was a twirler in 1st grade. Does that count for girlie ambition? I think the enthusiasm ended after the first parade, when I dropped my baton several times in a University Homecoming parade (and, oh yes....my little skirt came unbuttoned and fell off on the main street ). That ended my girlie performer days!

So, what is my 3 year-old doing? Just exactly what I never had the interest (or courage) to do....she is taking dance classes :) And, not just any dance, she has the opportunity to take dance from a Chinese native, who was a professional dancer in Beijing and traveled throughout China (and now the US) performing traditional Chinese dance. Ms. Lily Zhang is her teacher and is a joy to watch and be around! She teaches them poise, respect, courage and self-confidence...and in between dance poses, shares with them the tidbits of their heritage. Mandarin phrases and Chinese culture are sprinkled in with her "Chinese instructor" personality. She is full of hugs and love for the girls, but also is stern and no-nonsense (love that), encouraging discipline and proper technique.

Well, Lydia was not that eager on her first day. I gushed about her little dance clothes and hairstyle for days, but because Grandma had to take her, she was hesitant that this adventure would be fun. Grandma's report: emotions were high...hair had been curled, tights and little twirly skirt were donned; but things went sour when another little girl began to cry and Lydia realized that this activity was questionable. She cried the rest of the session.

Week 2 & 3, Ms. Lily was so gracious to let me come into the studio and act as Lydia's shadow, helping her do the little moves. She is the youngest in the class, and so I am the puppeteer and Lydia is the little marionette puppet, as I twist her little arms and body this way and that. I think we are Ms. Lily's comic relief for the day:) She sits in the front, giggling and says, "ah girls, look at mama, she has good form! Look at her..back straight head up!" she commands them. They all look back at me and sit up an extra 2 inches, chin tilted more up to the ceiling. I sit back there feeling like a student as well, trying to look as poised and dancer-like as possible!

So, we'll see what happens for the first performance at the Nelson-Atkins Chinese New Year celebration next month. Lydia is going to freak out for sure, but the performance will be superb! A troupe of little Chinese girls dancing together brings joy to my heart and I'm so thrilled that Lydia can be a part of it. We even met a girlie in her class that is from her orphanage in Fuling :)

Now, I will need to make SURE that her costume is duct-taped on during the performance, to avoid potential humiliation and long-term scarring, of course, if her skirt happens to feel like detaching! Performance must be positive and fun :))

Feasts and Thanks

November was an absolute blur of activity and responsibilities. It is at this point in the semester that I begin to freak out a bit and think that things aren't going to get done...then I realize that the 4th grade teacher has announced a new project to be done over the weekend!

Just as I write that on the planner, I realize that same week, I've scheduled an exam, am committed to reviewing student research papers, have to meet with 15+ students, and...oh yes, my 1st grader is depressed that I can't come to his Thanksgiving Feast, because I will be gone to a convention in New Orleans! AND, while I'm gone, Lydia starts her new dance class :( Ugh!!! The problem is that I am partially over committed from my own doing, and partially from things that can't be avoided...that's my life. Jason says he's going to start saying "no" for me. But, in retrospect over this past year, I think that I have really made progress in that area :) You wouldn't know it by looking at my calendar, but it's working.

This "full-time working mom" gig is not for the faint of heart for sure. By Friday night, I flop down in a chair or hide in my office upstairs and sit staring at the wall, wondering how I made it through the week, and how in the world I am going to make next week work out. But, by God's grace everything gets done and we scrape through. By the end of the week, everyone is still alive, my boys have clean uniforms on most days, homework gets done, book reports get written, and we even are able to make pretty decent projects----but, not without a lot of struggle and tears (theirs and mine :)



Sam's class has been studying the Middle Ages in November, thus the assignment of a castle....to be planned and created in 5 days (what!?). Only a few moments of arguing and stomping because Dad wouldn't let him have full reign of the spray painting, and we got it completed the night before my flight....I was frantically packing bags while giving last minute instructions for how to make the outside look cool---Dad and son did not take all of my advice, like the realistic- looking flags and banners, garden area, and pool/fountain that I suggested? :)



Thanksgiving is a special occasion at Whitefield. Sam (4th grade) has been studying the Middle Ages, thus their feast revolved around castles, knights, lords, and kings. He was to dress as Lord Thomas, so add that to the list of things needed before my flight...a costume! With Grandma's help, we pulled together some rich-looking Lord duds, complete with silk jacket, silver medallion, money bag of gold, and a feather in his hat.





Jack's 1st grade does the traditional Pilgrims and Indians. I was sorry to miss the Feast (and felt guilty that I didn't volunteer to send in food...see, saying "no" I guess? but I thought you are supposed to feel empowered by that, not guilt). Dad managed to get in some face time at both feasts, and even took some pics for me. Reminder to self....make SURE that I'm not out of town next year when Jack is a Pilgrim.

Being thankful that I'm still swimming and not sinking ;)