Happy September!

We are five weeks into our new school year, and everyone is flowing along nicely.  Whew!

 

 

Amelia returned to her school as a great, big 3rd grader.  She was very nervous before school started, and after talking with her, I discovered she is already worried about the standardized testing that takes place at the end of the school year.  Amelia is a bright girl, and she will do just fine as long as she can keep that anxiety at bay.

Anna began in a new classroom this year.  It is a Pre-K class for deaf children, like she had last year, but this year, Anna is trying an oral classroom.  It seems a little ambitious right now because her hearing is still extremely limited, but her teacher knows the limitations she has and is working really hard with Anna.  She has made lots of progress in just five weeks -- things like letter formation, counting, sorting, sequencing - she's working at it.  Her teacher is convinced Anna is smart, which is what we believe, too.  I am excited to see how much learning we can cram into this year!

Lucy is back at her "little school" - a parent's day out program.  She is happy to stay home on home days and happy to go to school on school days.  Lucy is a bit of a homebody, so I will happily let her be at home as long as possible.  She still has two years until she is eligible for Kindergarten, so there's plenty of time.

After blistering summer days and a rather warm September, we are so ready for Fall -- cooler weather, pumpkins, warm beverages, sweaters...bring it on!

The Golden Days of Summer

Ah, how the time slips away when you are having fun!

We have been enjoying our summer from dawn to dusk, which leaves the Mama with precious little time to do things like update the blog.

What have we been doing? 

Bike riding.

 

 

Swimming.

 

Climbing.

Playing.

 

Putting on puppet shows.

Learning new things.

In the midst of it all, we celebrated the 4th of July, and the girls even rode on a float in our local parade to promote adoption.

 

 

We celebrated Anna's Forever Family Day -- one year since she walked into our lives in that scratchy yellow dress.  What a difference a year makes.  We never, ever could have foreseen the things this year would bring.  We may not know what the future holds, but we know the One who holds the future.  He had good plans then, and He has good plans now.  What joy Anna has brought to our lives.  How privileged we are that God has allowed us the blessing of Anna, the blessing of differences, the blessing of a new way of doing things.  We are growing and stretching and seeing more of the Father and His love for all of His children

 

 

Speaking of a new way of doing things...we participated in our first Deaf Vacation Bible school this summer.  A wonderful ministry visited our city and worked in coordination with a local Deaf congregation to bring VBS to Deaf children and their families.  It was so wonderful to see the Bible presented in American Sign Language, acting, crafts, and other methods purposely designed to reach deaf children and their families.  Anna made her church program debut as Mary, the mother of Jesus (complete with pink pacifier...artistic liberties, of course!)

 

 

 

Amelia danced her way through two local ballet summer workshops, which she loved.  The girl could dance all day long and turn around dance all night.  She also participated in her very first trip away from home (without mom) -- church camp!  She had a FABULOUS time.  I did have to laugh when it was reported to me that, on seeing the rather rustic cabins, Amelia commented that she thought the lodging would be a little nicer.  What can I say?  She enjoys a nice hotel!  While she grew spiritually this summer, she also grew up in other ways.  She ditched her training wheels and learned to ride a big girl bike.  She also had some big girl nights out - a movie night with Mom, dinner out with some friends, the theater with Papa...sometimes a big girl just needs to escape her little sisters.  Let me tell you, though, that Amelia is a fabulous big sister.  She is helpful, kind, patient (mostly!), and a great teacher. 

Anna has mastered her new bike, too.  It was time to move Lucy off her little tricycle and onto a small bike, and Anna was ready to move up a size, so we gave Anna's bike to Lucy, and I took Anna shopping for a new bike just her size.  No surprises when shopping with Anna -- if it is pink and girly, and especially if it has any kind of sparkle, Anna is all in.  She delightedly chose a princess bike.  However, when we got it home, she never wanted to ride it.  After lots of practice, her little string bean legs are strong enough to make the bike go, and she is finally happily riding the princess bike.  She also participated in a speech camp this summer, which she enjoyed.  Each night, we would do an activity and learn the vocabulary for the next day of camp.  Anna has not had as many experiences as the average American preschooler, so in many ways, we have to play catch-up to make sure she understands.  She is such a social little person....anything that involves friends and fun is something Anna will enjoy. 

We made a return trip to Los Angeles to be seen at the House Ear Institute for another mapping session in July. It was good to see our friends at House again.  They seem satisfied with her status -- she is making progress and responding to some sounds. It is a painfully slow process for people like me who like to see fast results (could this be why my diets continually fail?!).  We are all still working to get Anna's ABI at just the right levels to optimize her outcome. 

While we were in Los Angeles, we got to cross a picket line!  There were some Deaf protesters who were picketing at the House clinic.  It was so very interesting.  They were kind to us and simply handed us their literature.  Many d/Deaf people support families who pursue a listening/speaking outcome for their children; they only want parents to know that there are choices -- a Deaf community with rich language, history and opportunity.  It has never been our intention to remove Anna from that community or to refuse her a place alongside other d/Deaf people.  It has always been our heart to give Anna a full-range of all the options available to her in this time and this place.  While we were in Los Angeles, we visited Chinatown (love, love, love), and we met a lovely Asian Deaf woman who uses both spoken English and ASL fluently.  She is an ASL instructor at a college in New York.  I felt like a got a glimpse of the kind of future we want for Anna -- moving easily in both the hearing and Deaf worlds, able to communicate effectively in both languages, making a positive contribution to the world.  Thank you, Lord, for the encouragement You give us on the journey.

Lately, my heart has been a little heavy with the realization that I have not put an equal amount of resources and effort into teaching Anna to sign as I have in pursuing the ABI and related therapies.  I am still working on developing my signing, and we are making a concerted effort to make sure Anna can develop her signing skills alongside her hearing skills.  We have begun attending a Deaf church, which has been great for Anna, and even better for the rest of us. The warm and gentle people at the church have welcomed all of us with love and acceptance and a willingness to help us learn.  I have been going to the signing Sunday School class, and although I do miss a lot of the discussion, I also gain a lot, both in terms of spiritual truths and communicating in ASL.

 

Lucy.  What can I say about Lucy except that, well, she makes us laugh.  She is the tender-heart, the silly monkey, the comic relief in this family.  Lucy has at least 327,000 questions per day.  She has graduated from her tricycle, and she is a speed-maniac on her little bike.  She can go, go, go.  She would like a unicycle for her birthday.  Yes, that is what she asked for.  How crazy is it that I actually know someone who has an old on in her garage and has agreed to relinquish it to delight Lucy's heart?!  Lucy likes to do puzzles, play with the kitties, and take naps.  She has a very limited palate (read, she is an uber-picky eater!).  She sings about the moon ("when the moon's in the sky like a big pizza pie..."), thinks a costume-a-day is the way she should roll, and wants to know when she can go to big school like Ameeya.  She is signing up a storm and often serves as Anna's voice to the world.

 

 

And that, my friends, brings our family summer (almost) to an end.

Next week, it's Meet the Teacher night.  We have our gear and are ready to roll.

 

 

Gone Fishin'

It's our first official act of summer. 

 

Everyone caught a fish.

First, Lucy.

Then Amelia.

And at last, Anna.

And fun was had by all.  Even me, and I don't do worms.

End of School!

Put a fork in it....we're done.  We ended our school year with a bang!

When school started this year, we had no idea what the year would bring.  Anna had only been home two weeks when school began.  She was still adjusting to us, and we had not even had our first visit to the ENT or audiologist. 

We had no idea that this would be the year that Amelia would crawl out of her shell and transform herself into a young lady to be reckoned with.  She has had an incredible year!

We had no idea that Anna's journey would take us to mountains, to valleys, to Italy, to the world's leading engineers and surgeons, and to the very throne of the Father.  Miraculous is not too big a word for the year Anna has had.

We had no idea that Lucy Juniper would be....well....okay, we knew all about that one!  She is the one kid in the whole menagerie who is predictable.  And funny.  And full of a zillion questions.  And LOUD.   The Lucy we love now is the same Lucy who let off ear-splitting shrieks in the cabs of Taiwan, not because she was afraid, but because she thought it was funny.

Amelia ended the year on the "A" Honor Roll, earning top grades in reading, language arts, and math.  She won her classroom award for scholarship in technology, and she even surprised us all by winning her classroom spelling bee and moving on to compete at the second-grade spelling bee, earning a spot as one of the top ten spellers in the whole second grade.  Way to go, Amelia!  The award that most spoke to my heart, though, was that she was awarded her classroom's character award for "Most Kind."   So, so proud!  Add to that two beautiful year-end ballet performances and we are proud to say Amelia had a GREAT year.

 

 

Anna also ended her year showing incredible progress.  She won the "most improved" award for her class, in recognition of the leaps and bounds she has made this year.  She began school with virtually no language, and she is now able to recognize and sign all her letters, count to 10, identify her colors, identify numerous objects, animals, foods, and other things by name, write her first name, and sign in short phrases to express complete ideas. She did all this while missing six weeks of school and having brain surgery.  Have I mentioned that she has not even hit her "one year" mark of being in our family, being exposed to English, being exposed to sign language, or being exposed to holding pencil?  She also won a music award and a citizenship award.  The one that made me laugh the hardest, though, was the "Best Actress" award.  Her teacher said, "I know someday Anna will win an Academy Award, and I just want it to be known that I recognized her talent early."  Hahaha. 

 

 

Anna is beginning to recognize some speech sounds, and she is even turning her head to her name on a more consistent basis.  She can say several words and has added many new sounds that she is making with her voice.  We even had a back-gate neighbor comment that he used to hear the children playing outside, and one child's voice always sounded like baby-babble, but now he hears a marked difference in the sounds she makes.  What an encouraging comment!  I think Anna is going to be a pace-setter, and while I don't at all believe Anna is weak or foolish, I do believe she is going to be one of those things of the world that confound the wise.  Where the world says "it will never happen," God says "let me show off."

Lucy's little school did not have awards, but they did have a hot-dog party, complete with jumpy houses and sword balloons.   Lucy enjoyed the party, but she is not the least bit sad to leave school behind for the summer.  This girl plans to have a summer full of bicycle riding (the girl is a maniac on her new bike with training wheels), cartoon watching, and playing outside.

We will enjoy our summer respite, and when it's time for school to start again, we will be ready for another great year.

Touched by an Angel and Mother's Day Musings

I am SO overdue for an update!  So sorry, dear friends.  Please know I am truly thankful for your prayers and interest in the goings-on in our humble home.  It is sometimes very hard to get the thoughts and photos together for an update, but I have finally managed.

First, Happy Mother's Day!  To all of you who are mothers or who have loved a mother or who hope to someday be someone's mother - blessings.  Mother's Day is always filled with mixed emotions for me.  I love my mother, and if life were that simple, I might never know there was more to Mother's Day.  But now I am a mother.  Each of these three treasures is only in my life because of God's graciousness and because of the selflessness of the women who carried them and heard their first cries.  In countries where, in many cases, it is harder to choose life than to end it, I believe that these women, the first mothers, fought for life.   I may never meet these mothers in this lifetime, but it is my deepest prayer that someday, I will meet them in Heaven, and together, we will rejoice in the love we have shared for these children.  I rejoice because I get to parent the children of their bodies, but I weep because they don't get to know the incredible human beings that these children are - - how strong and smart and funny and resourceful and fragile and beautiful each child is, unique in her own way.  I want to ask these mothers so many questions, and I would love to just share with them a glimpse of who their daughters are becoming.  I want to tell Amelia's birthmom how brave she is becoming - how she took a part in a musical, even though she was afraid, and performed with such a sparkle!   I want to tell Anna's birthmom that the LORD has worked so many incredible miracles for her, and she is now learning to listen and speak! I want to tell Lucy's birthmom how insanely funny I think she is and how much pure joy she brings to our lives. I want them to know how much I love their girls - my girls.

Next, an update on Anna --  Anna and I traveled to Los Angeles, California, this week to meet with the clinical staff at House Ear Research Insititute.  The House Clinic is famous in the US.  They performed the first single-channel cochlear implant, and the doctors and engineers at House are the ones who invented the Auditory Brainstem Implant (ABI).  Yes, we met some of the very people who invented the technology that is now helping Anna.  We had to get an FDA exemption for Anna's mapping to happen here in the USA, but House got it, and Anna was seen there for her first post-activation mapping session.  In a mapping session, they stimulate each electrode in the implant, one by one, to see what Anna is hearing and then work on fine-tuning the equipment to maximize Anna's outcome. 

Understanding mapping -- It was explained to me like this: if you had a person who had been blind since birth, and all of the sudden, you turned on the brightest light and opened the window all the way to let the bright sunshine in, you would "blind" the person - or at least overload them - and sight would be painful and unpleasant.  But, if you open the window a little at a time, and just let a little bit of light in, so that the person can begin to perceive shape and shadows, and gradations of color, and if you continued that over time, then the person would gradually increase what he or she could see.  Instead of being painful, the person would want a little more light and a little more light.  In mapping, they are trying to 'crack the window' of sound for Anna.  They want her to have enough to hear, but not so much that hearing is unpleasant or so overwhelming that it has an  - ironically - deafening effect.  In the ABI world, I am learning that slow and steady is the way we walk.  Right now, Anna is responding to sounds on each electrode.  However, in some cases, her responses are inconsistent and hard to gauge.  Anna wants to perform well, so sometimes she "reacts" when there isn't any sound at all.  Other times, her reactions seem to be genuine responses to auditory input. 

This is a video from the session on Day 1.  We got better responses on Day 2, and I hope to be able to share some of that video soon.  Click here to see a few minutes of a mapping session:  http://youtu.be/EHWq3czZyrk

 

She's one-in-a-million -- I don't know the statistics, exactly, but I do know that the device manufacturer told us that there are only 7 children in the USA who have received the ABI implant. The child who is the furthest out from implantation has been implanted one year and is younger than Anna.  There is at least one other, older child in the US who has an ABI by a different manufacturer.  I think he is at least a few years post-surgery.  Basically, one of the challenges, is that in the USA, they don't have anyone to compare Anna to as far as assessing her progress.  Anna's age and lack of complicating conditions makes her different from most of the other children who were implanted.  On the one hand, it's hard to not know what to expect as far as milestones.  On the other hand, that means Anna can be the pace-setter.  The House experts are very guarded as far as their prognoses and hopes for Anna.  It can be discouraging at times.  However, there was a very bright spot in the mix.  One of the clinicians at House who regularly works with adult ABI patients reported to me that if he had an adult patient who was responding to as much as Anna was at this point, he would be - his word - "ecstatic."  The adult ABI patients are almost always people who have heard before, so it's a little like comparing apples to oranges, but still, since Anna's is older than the other kids being mapped, I felt like the adult ABI perspective was really hopeful.

Touched by an Angel -- On the plane home, I was thinking over the previous days, and honestly, feeling overwhelemed and a little discouraged by how far on this journey we still have ahead of us.  I was praying for Anna and just really wishing for some kind of roadmap.  When we got off the plane, Anna and I were riding on the tram to connect to another terminal.  An old American Airlines mechanic was on the tram, and he asked about Anna.  I gave him a brief overview, but I never mentioned prayer or miracles or any of the like.  He looked right into my eyes and said, "Ma'am, you just keep praying.  He hears our prayers.  And she's an orphan, so He really cares to answer prayers for her."  I was astonished.  He went on to share that he had a 26-year-old son with autism, and all his son wanted was to be able to drive.  He said his son prayed every day for two years for this, and now, his son drives.  He was just SO encouraging to my weary, traveling soul.  I know the tears spilled over in spite of the crowded tram.  When Anna and I got off the tram, we said good-bye, but I left feeling like my spirit had been touched by a messenger from Heaven - just a little nugget of encouragement to never give up in the prayer-fight for Anna.

Building one another up -- When I told a friend some of the discouraging parts of my trip to Los Angeles, my dear, wise friend reminded me that none of those people created Anna and none of those people hold in their heart the master plan for Anna - hearing or deaf or something in between, Anna will do what HE wants Anna to do in the perfect season of His planning. We just have to remain steadfast in faith and prayer, working to do our part to give Anna all the tools she needs, both in terms of sign language and in terms of access to hearing technology. Friends who remind me of these things and who encourage when the road seems long are truly precious to me!

All in all, things are good.  We are very blessed.

One month update!

It's been one month since Anna's device was activated in Verona, Italy, and we have seen remarkable things.

First, Anna's babbling has changed.  She used to "babababa" all the time.  Now, she is quiet when the device is not on, and when she speaks, it seems more imitative of speech.  She likes wearing the device and asks for it in the mornings.

Before the surgery, Anna could say words like "papa" and "purple," but they came out as puffs of air
with very little voice behind them (even though, at other times, her voice was very strong).  Now, she says those same words with more voice behind them. 

Anna has also added "yellow" and "blue" to her spoken repertoire.  These are words she was attempting to imitate pre-surgery, but now she can say these words, or at least something close and recognizable as these words. 

In the past week, Anna has also mastered the "mmm" sound.  She could say "mmm" before at random, but never on command.  Now, she can say "mama" and "moo" (as in cow) when you ask her.  (Note:  If you are thinking about leaving a comment to highlight the irony of Anna's being able to say "mama" and "moo" during the same week, please don't....it's not lost on me, I promise.  A trip to Italy, stress, lack of self-control, and a well-documented weakness for kettle cooked salt and vinegar chips have caused this mama to be approximately the size of a well-fed heifer.  But hey...it's a small price to pay for "mama" and "moo.") 

Today, Anna added a new sound, "h," and a new word, "hot."  As Lucy was getting into the bath, she exclaimed that the water was "hot, hot hot!"  Anna had her back to Lucy, so she didn't see Lucy's mouth, but she still turned around, and repeated the word, "hot."  We know Anna can hear voice. It is often hard for her, especially in noisy environments, but she can definitely perceive and repeat certain voice sounds.

And so, I am left with some observations. Sometimes miracles come in big, sweeping events, as a family acquaintance personally observed when she witnessed a roomful of deaf children in another country receive instantaneous and miraculous healing of their ears in one incredible moment as the word of the Lord was shared. Oh, how my heart wished that for Anna!   But God's ways are not our ways, and He has many ways to heal.  Sometimes, His miracles come little by little -- a surgical intervention made available, funds to meet needs found, and one "m" or "h" sound conquered at a time.  No matter how healing comes, it comes by way of the miraculous intervention of a loving and merciful Father.  Thank you, Father, for every little moment that is the making of Anna's miracle.

Tragedy and Triumph

As the news waves were filled today with tragic images that caused us to bow our hearts before the Lord, we had another reason to bow today -- a beautiful, wonderful, joyful reason!  Today, Anna Joy XiaoChun heard her name called and turned her head for the first time EVER.   She even grinned and pointed at herself -- she KNEW it was her name.

Friends, you are the witnesses.  The medical establishment can give us all the technology in the world, and for that, we are more than grateful.  They made this day possible.  But in the end, only the LORD Himself can grant hearing to the deaf....sight to the blind....life to the dead.  HE is the mighty Healer, the only One who can redeem that which has been lost.  As it happens, my birthday is tomorrow, and in an humble way, I feel as if the Lord Himself has given me a birthday present that nobody else could have ever given - the gift of a child who turns her head to her name

 

 

 Tonight, the juxtaposition is so very poignant.  My eight-year-old was sobered when she heard another eight-year-old lost his life in an act of terror today.  How do you really explain to a child the epic battle of good versus evil....life versus death....God versus Satan?  It's the eternal war, and we still fight it every day.  The scriptures tell us in Ephesians, "For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places. Therefore, take up the full armor of God, so that you will be able to resist in the evil day, and having done everything, to stand firm."

Many, many days I have wondered when we will see clearly the tapestry that the Father is weaving.  I look at my three special treasures - each one, in her own way, a child for whom the world had assigned little value -- and I see them laughing and running and belonging. I see them eating ice cream and playing baseball. I see mended hearts. I see miracles.

Miracles still happen, friends.  They happen in the here and now.  They happen in the marvelous and in the mundane. They happen in every day life.  They happen even when our faith is small and our hearts feel faint. They happen because God Almighty is still at work.

 

 

In joy and in sorrow, on mountains and in valleys, we praise His name!
Amy