This child’s family has not even made the first trip to Bulgaria yet.

I cannot say more.  I am attempting to contact Dr. L of the hospital in Sofia.

Please intercede for this child’s life.

“So far, our adoption journey has been far from exciting. Not much going on yet.

We don’t have many answers and everything is still up in the air. We know what [special needs adoption] and where [Bulgaria], but not when…or how…or who.

But we do know why.

We had discussed adoption years ago, but life got busy as the Lord blessed us with so many biological children. It wasn’t until recently that I learned that large families are often allowed to adopt. When we learned about the conditions for children with special needs in countries around the world, our eyes were opened to see something we weren’t aware of before. Children who need more help and support than typical children often get next to nothing. What they need can’t be provided by institutions and paid workers, what they need is real love provided in a family of their own.

As we learned more and saw many large families being able to adopt, we began to see it as a real possibility for our family. Yeah, we could do that. Being open to blessings and making room for one more comes naturally to us by now.

Do we see it as a calling? Sure, but not like a special word from the Lord just for us. All Christians are called to do something for the poor, the weak, the fatherless and the widows. Since our life is very family-focused we feel that welcoming a child into our family is something we can do.

Adopting also seems natural because of what the Lord has done for us. We have been saved from the desperate condition we once lived in. Even though we didn’t have anything to offer, even though we had many special needs, Christ saved us and welcomed us into the family of God. We now know what it means to live in love and security and peace. We now have a Father to care for us and also brothers and sisters. We don’t have to worry about our weaknesses or inadequacies or needs because we now rest in Christ. This Redemption Reality makes it easy to consider special needs adoption.”

~Sabrina, from her adoption blog I will go before you

Note from Susanna:  You probably know by now that Bulgaria is open to international adoptions by large families.  What you may not know, and may need to know, is that Bulgaria has no upper age limit for adoptive parents.  I know several moms in their fifties and sixties who are adopting children with special needs from Bulgaria.

[Note:  I promise that despite how it may appear, I'm not giving her swamp ooze.  Just pear puree thinned with green smoothie.]

She is precious beyond words.

The thick callouses on her wrists have nearly disappeared.  Did I ever tell you about the callouses?  They had formed on each wrist, where she chewed vigorously when she was upset.

The orphanage poison is eradicated from her body.  She is sweet inside and out, from head to toe.  Yes, even her morning breath is now sweet.

And every time I look at her small face, every time I lift her helpless body, labor to teach her what she should have learned a whole childhood ago, care for her needs, hear her cry in the night, gather her in my arms and watch delight cross her face, every time I lay her head on my chest and sing to her, every time I fill her up with hugs and kisses, I remember the person our Katie used to be.

How can I forget?

I can never forget.

Our Katerina is safe now, but I cannot go back and erase the pain of her history.  Nearly ten years of hurt.  I can never forget that when she was six years old, before she received her baba, she weighed seven pounds.  I can never forget that they thought she would not survive, and that a baba would be like hospice care, to give her some comfort before she died.  I can never forget that the volunteers were startled every time they came back to the orphanage and saw that she was still alive.

And every time I look at my precious new daughter, I see in her all the faces of the little ones she left behind her.  Tears for them lie just under the surface, and groans continually rise from my heart on their behalf.  Oh…LORD…please…

I can never forget that there are other little ones in the world who are far too tiny, and have been waiting far too long.

Waiting…waiting…waiting in Ukraine like tiny Kori waited for the first seven years of her life.  Kori’s mother Anna was an encouragement to me when I was in the PICU with Katie.  When Anna went to get Kori, she weighed sixteen pounds.  Like Katie, she wore a size one diaper and size twelve month clothing.  When I hear Anna tell Kori’s story, I hear in her words the cry that is in my own heart for the children left behind. “How long, O LORD, how long?”

Waiting…waiting…waiting in Russia like Nathan or Ekaterina.  Please, O LORD, send them families with courage not to make excuses, courage borne of pure love and faith in You, our great miracle-working God.

Tomorrow, three more of the children from Katie’s former orphanage will meet their new daddy or mommy.  Keith, Annie, and Lina.  Do you remember them?  They are safe, even if they don’t know that they have a hope and a future.

But I can never forget the others, the ones who don’t yet have families to love them.

How could I ever forget them?

I cannot.

They are the children Bulgarians would never adopt.  The children who will never be able to articulate why they need a family.  The children deemed so undesirable and unadoptable that the social services never bothered to list them with the MOJ.  This week, beginning in just a few hours now, our attorney will be right there at the orphanage with three adoptive parents.  They are constantly on my mind and I am fervently praying that God will use them to level more mountains.

Because when I look at my daughter’s face, I also see the power of God.

How can I forget what He has done for her?

I can never forget.

O LORD!  Help of the helpless!  Show Your mercy through Your mighty power!   How I pray that You will finish the good work that You have begun, bring the little ones out of this warehouse, and settle them in nurturing families!  Thank You, Father, for hearing and answering our prayers.  Amen.  

Please visit and check out the several pages of wonderful, donated items!

Shop for gifts there and you will be helping to save the lives of three vulnerable children from Katie’s former orphanage.  Noah, Moses, and Jacob–I held them in my arms.  They are three precious little boys who need to come home to their family, and start healing!

Thank you so much, friends!

P. S.  We would also be overjoyed to receive more donations!  It is NOT too late to list them for this auction! Please email Amy Rainey at hiddentreasuresauction@gmail.com.  Thank you from the bottom of my heart!

The simplest way for me to show you where her bone density is on the scale is to send you to this definition of standard deviation on Wikipedia.  Please look at the diagram of the bell curve in the top right-hand corner.

Anything that falls outside of a 3 in either direction of a bell curve is considered abnormal.  Someone whose level of bone density is -3 on the bell curve has osteoporosis.

Katie’s bone density is at -15.  For comparison, using a bell curve to measure her level of malnutrition, she fell at -11.

Dr. Strauss said that the process of rebuilding bone is very slow, and because she is starting at such an extreme deficit, it will take years for her bones to get to a healthy level of density.

We are continuing to take precautions to protect her bones from injury.  There are also several treatments to help her heal.

~Katie will be receiving a medical therapy which will require IV treatment for three days every three months for one year.   There’s a slight possibility this could be done at the Clinic; we pray it will be so!  ***Later note:  YES!  This can be done at the Clinic!  Thank the Lord!***

~And we will continue the nutritional therapy with bio-available vitamin D and calcium, as well as other nutrients that are building her overall health.

~She can begin using the stander!  This weight-bearing therapy will be a valuable help to build her bones.  God met this need in full before we had even begun to seriously research pediatric standers.   To realize the significance of this provision, please check out the prices of Squiggles Standers on this page.   The givers also sent some extra attachments, some of which cost into the hundreds of dollars each.  Wow.  Thank you, G family, and thank you, Lord!

Jesus loves Katie, this I know…

For the Bible tells me so…

Little Katie to Him belongs…

Katie is weak, but He is strong…

Yes, Jesus loves Katie…

Yes, Jesus loves Katie…

Yes, Jesus loves Katie…

The Bible tells me so…

I am writing to all who have kindly participated in past auctions at Hidden Treasures, or are interested in what we are doing.

Wonderful things are afoot for our next auction, which begins in two days on February 1st!

~This includes a custom redesign of the blog!  Additionally, we have worked to streamline the actual navigation of the auction listings.

~We have a button that you can share and post on your own websites and blogs!  Please help us spread the word!

~There is also a “child update” page now!  This will allow us to share the progress of the children that you have blessed in past auctions.

It’s not too late to donate!  Some of you have already contacted me about donations for our auction for the Archer boys.  If you have not, and wish to participate this time, we would love to have you!  Please let me know so that I can list your donated item(s) to be auctioned.  Email me at hiddentreasuresauction@gmail.com.

The 3 LuvBugs auction will run from Wednesday, February 1st to Tuesday, February 7th! 

If you would like to learn a bit more about the Archer family, visit us here:  Meet the 3 LuvBugs!   These three precious boys are very close to Susanna’s heart, because she had the privilege of holding each of them when she visited the orphanage last August.  They desperately need to come home to their daddy and mommy, so they can begin to heal emotionally, have their needs met, and learn the love of a family!

Many of you have a cottage industry from which you are donating items.  This might be handmade items, or a home-based business like Thirty One Gifts, Avon or Discovery Toys.  For this auction I plan to link to your website, if you have one, in the auction listings.

Finally, there will be a few changes to the function of the auction this time.  One notable change will be that we are going to only accept Paypal payments this time.  Paypal is secure and allows the money to go directly to the family, without anyone else needing to handle it.

If you want to join the fun and help the Archers go get their boys, please read How the Auction Works!  We hope to see you at the auction later this week! And please don’t forget to pray that God would bless the work and multiply the gifts greatly on behalf of these little ones!

Bless you, each and every one, for all that you have done for the sake of these precious children who carry the imprint of God’s image and are His unique design.  We may not be able to help all of the millions of orphans on this planet.  However, we can rescue a few from one of its very darkest corners.  It matters!  They matter!

Blessings,
Amy Rainey
Auction coordinator for the Hidden Treasures site
hiddentreasuresauction@gmail.com

Despite the fact that I would not have chosen to walk this journey in such a public manner, I have come to have a great affection for so many of you.  You have been far more to our family than mere blog readers!

You have supported us, encouraged us, instructed us, prayed for us, been tolerant of us, sent us pictures of your beautiful children with Down syndrome or other special needs, been used by God to supply many practical needs.  You have poured out your hearts toward us and into our lives.  Friends, you have truly helped us.  We have been so mightily upheld by your prayers and loving, life-giving words during some very difficult, stretching times, some of which you may never know about.

Our hearts are full as we contemplate how many of you have been part of the team God used to bring home our Katie-bird!  I wish there were words to express what is in our hearts toward you!

No, we’re not closing down the blog!

But…

…my quiet, private hours of pumping time are my quiet, private hours of writing time.

It may help you to understand at this point that it had become normal for me to sit down to pump several times a day and each time, find more than three dozen emails that required an answer, each one from a real person about whom I cared very much and could not brush off, even if I wanted to.  Many of the emails could not be answered quickly or easily.  Katie was doing well, but my work was nearly overwhelmingly hard because of the writing task.  As you know very well by now, we did not see this as a bad thing.  Hard is not bad!  I don’t believe that God’s big purpose for my life is to keep it manageable!  It was clear to us all that God had laid this work before me, and I loved it.

I caught up on emails and thank you notes while Joe was home during Christmas week by working every spare minute, and some minutes that weren’t spare.

[I think I caught up on thank you notes!  If I somehow missed yours, I beg you would please forgive me and know how greatly your gift was appreciated!]

As the New Year began, I cut out a pumping and still managed to keep up with computer work by staying up late as needed.  The emails continued to pour in, so I stayed up late most nights of the week.

Then almost two weeks ago, Daniel, our sixteen-year-old second-born son, began working part-time for Joe’s brother as he does every tax season.  This is in addition to his studies, piano practice, and need to put in driving hours on his driver’s permit.  In addition, he recently took on the bookkeeping of the family carpentry business during his day off.

He had formerly been my right-hand man, so this had an immediate practical effect on our family.

Another daily pumping had to go, right away…which of course meant cutting out another hour of computer time.  The emails continued coming in full force.

I love telling what God has done, love people, love writing, love helping others.  If I’m going to do it at all, whatever it is God has given me to do, I want to throw myself into it, and do it excellently.

We have also loved having a birds-eye view into the work God is doing in so many of your hearts and lives and families.  We have lost count now of how many families have written over the months to say that they have begun to pursue adoption of a child with special needs.  And that is just one kind of work God is doing!  Friends, we have so much hope in GOD!  He is active in powerful ways right now, and accomplishing what is not explainable in human terms, and we have had the privilege of a little glimpse of that!

By the end of this past week, it had become apparent that the pumping is going downhill fairly quickly.  I’m more grateful than I can say for the liquid gold that two of you have gifted to Katie, one of you on an ongoing basis!  And grateful for the little supply I am still able to pump on a decreasing basis. We still hope to be be able to give our little girls this valuable food until the end of flu season.  As the Lord wills.

But the timing is right for the whole household.  I will be extremely occupied with the needs of my family at least until tax season is over and Daniel is again able to lend a hand.

So…

We wanted you to know…

…that we have temporarily taken the Email Us button off our sidebar.

…that if you are currently waiting for an email reply from me, I will answer to the best of my ability, Lord willing, but it may be greatly delayed.

…that I will be blogging on a much more sporadic basis than I formerly had done, and the posts will be shorter.

…that we will miss you!

…that in spite of these necessary changes, we love and appreciate you no less!!! 

Katie enjoyed her first visit this week from a very special friend~

Among the many blessings God has poured out on me, one of the sweetest right now is an online group made up of a dozen women.  I am getting to watch other families go in to Katie’s former orphanage and claim their children, and that is priceless enough.

But these are Jesus-loving women!  What a beautiful thing to see their determined trust in His goodness during an agonizing waiting time.  I don’t think I would see it so clearly were I distracted by the suspense of our own adoption process.

Here are just a few stories of how God has been moving in answer to the concerted prayer of thousands of His people…

Last Wednesday, Grace was first to post her big news, and it came before the big meeting in Bulgaria was even underway!  Our family has had little Samantha’s picture on our refrigerator for many weeks, and had been praying for her lost file to be found.

In Grace’s words~

“God gave me an answer to a HUGE obstacle.  After waiting for about five months for Kami’s file, and being told that I may need to move on and consider other children before my paperwork became outdated, God miraculously brought that little girl’s file to the surface.

I read Daniel 10 over and over again, just as Steph suggested we should.  I also spent some time in 2 Kings 6. When I went to bed on Tuesday night, I was visualizing myself and my daughter in a war zone. I imagined us in a protective bubble, aware of the spiritual battle going on around us, but also completely trusting in the power and presence of God and His armies of angels. I fell asleep listening to “A Mighty Fortress is Our God” playing on repeat. I would wake up throughout the night, the song still playing, and tell God that I was trusting in Him for my daughter’s protection. And one hour after I awoke to pray, when I wasn’t expecting news for days, I received the e-mail titled, ‘We have the file!‘

Every time I try to relay this story to friends, I feel like I will never do it justice. I’m not sure anyone could. Because God did what was impossible. There were a couple times throughout this week of praying when doubt would rush over me, and almost squeeze the life out of me. And the father of lies would try to steal my hope. But just as quickly, the GOD OF PEACE would swoop in and restore my peace and trust. It was all so incredibly supernatural. I have never been so sure of God in my life.”

The Sousa-Brown family received their verbal referral for their four children including three from Katie’s former orphanage, Liliana, Sophia, and Butler!  We praise God that Sophia, whom I wrote about back in November, was finally registered with the MOJ, just before her time ran out!  The Sousa-Browns are now waiting for their written referral, so they can take their first trip to see their little ones!

The Burman family received their verbal referral for Kelten and Teagan!  They are also waiting for their written referral, and the next step will be their first trip!

Another family wrote that they were given the signature they needed to visit with their precious little girl for the first time.  Her daddy will be leaving to meet her in just a few days.  They have watched God meet need after need, and move mountain after mountain in their adoption journey, and once again God provided exactly what was needed!

To top it all off, on this same day, after a longer-than-average wait, the Archer family, adopting Teddy, Val and Steward, received a USCIS officer, and a few minutes later, their officer approved their I800-A application!  They will be able to send their dossier to Bulgaria with the next traveling family!

Yesterday, several of the waiting moms, including Stephanie Carpenter adopting Mary, received the exciting news that finally, the official picked up her pen and signed their written referrals!  Only two of the families in our little group are still waiting for that signature on their documents!

Friends, I cannot thank you enough for praying!  Thank you!  Thank you!  Praise our gracious God!!

“Therefore the LORD will wait, that He may be gracious to you; 
      And therefore He will be exalted, that He may have mercy on you. 
      For the LORD is a God of justice; 
      Blessed are all those who wait for Him. 

      You shall weep no more. 
      He will be very gracious to you at the sound of your cry; 
      When He hears it, He will answer you.” 

Answer:  If you and I were sitting in our living room chatting together, and I told you the following story, you would see my face flush and tears come to my eyes.  The emotion is still fresh, and it is anger.  Cheek-burning, blood pressure-elevating, heart-pounding, hyperventilating, suffocating, hold-back-the-tears anger.

A quick decision needed to be made.

The dentist said he wanted to clean up her teeth a bit so he could examine them better.  We were already in the right place, over an hour from home, and Katie had done remarkably well for her unsedated DEXA scan.

Sedating any child carries its own risk.

I decided to let him go ahead and try.

I sat on the dentist’s chair with Katie on my lap.  They reclined the seat until she and I were lying nearly flat on our backs, her head up on my right shoulder.

I looked up at the bright lights and murmured into her ear.  ”I know it is sooo scary, Katie.  Mama is here.  You’ll be okay…I know…I know…”

What if you went to visit a family you hadn’t seen for years, and when you got to their house, you found out that the parents had been keeping their children in their beds, away from the public eye, for years.

What if you found out that they valued their children so little that they had never so much as brushed their teeth, so that their children’s mouths were evil-smelling pits containing dark gray bacteria, coated thickly with discolored yellowish rock?  Swollen, bleeding gums?  Sores on their tongues?

The reeking, horrific condition of their mouths made them so unpleasant as to become socially unacceptable.  Stripped of basic human dignity.

Pronouncing their children unlovable, then causing them to become unlovely by failing to love them.

Is that okay?

No?

Would you feel angry?

How long did our little girl…

…our precious helpless little girl!…

…have to carry that foulness inside her mouth?

Why is it not okay for parents to treat their children that way, but it is “understandable” for orphanage workers not to find the time in nearly ten years to brush a child’s teeth??

I confess I have not felt so angry in a long time as I did when it all came off easily, using basic dental tools.

In fifteen minutes.

We’re the Mussers.

We have a small miracle living at our house.

All are alike before the Highest;

‘Tis easy to our God, we know,

To raise thee up though low thou liest,

To make the rich man poor and low;

True wonders still by Him are wrought

Who setteth up and brings to naught.

Amen.

…would like to learn more about adoption, please consider attending…

If You Were Mine Adoption Workshop 2012! 

Our energetic friends Merle and Kim Zimmerman, with others on Team 127 from their church, have put this workshop together.

P. S.  If you’re there for the panel discussion on Saturday morning, I would love to meet you!

~~~~~~~~~~~~~~

…are a big family, you are warmly invited to the 6th Annual PA Big Families and Friends Picnic!

Where:  Same place we met last year!  Please email for more information:  susanna@theblessingofverity.com

When:  11 am until dusk, Saturday, May 5th, 2012, with lunch at noon

[Yes, this is an earlier date than usual!  The pavilions are first-come, first-served beginning on January 2nd each year.  When I filled out our 2011 calendar, I forgot to write "Reserve park for BF & F picnic" on December 31st.  Without that note, I didn't remember to call until the 10th!  We hope this date will work for everyone who wants to come to the 2012 Picnic!]

~~~~~~~~~~~~~~

…can recommend a home school evaluator who is qualified to work with the PA state requirements for special needs students.  If you can highly recommend one, that would be even better!  Thank you so much!

~~~~~~~~~~~~~~

…want to help with a local two-in-one fundraiser, please check out Linsey Smoker’s Valentines for Veronika website for details!

“What a blessing and great joy, for God to bring us together from all across the US and Canada in this group.  Then to connect us by faithful prayers.  He truly is our strength! 

WOW!  I don’t even have good enough words for what He has done!  I thank Him for connecting me to all of you, to see His wondrous works.  This is a day I don’t think any of us will forget!  I’m blessed to have gone through it with all of you!!”  ~Elizabeth Archer, who with her husband Tom is adopting 3 LuvBugs, Moses, Noah, and Jacob, from Katie’s former orphanage

I want you to know as much as possible about the answers He gave to our prayers yesterday, so I’m collecting stories from some of the other moms who are adopting from Katie’s orphanage.

In the meantime, I have something to ask of you and something to give to you.

Prayer is powerful and effective and avails much!  Jesus told us to keep on asking.  We don’t have to wonder whether it’s His will for us to pray for the little ones Katie left behind!

~There is a certain stack of documents sitting on a certain official’s desk in Bulgaria.  Until you hear that they have been signed, please pray for that official to pick up her pen and sign her name to those papers.  Each of those documents represents the life of a child!

~Until you hear that the last child with special needs from Katie’s former orphanage has officially been made available for adoption, could you please pray that every child’s file is listed with the MOJ as soon as possible?  Each of those files represents the life of a child!

~And could you please pray that God would pave the way for the hospital team to assess the at-risk children in Katie’s former orphanage?  Until you hear that this has occurred, assume that the enemy will throw up roadblocks, and please pray accordingly!  Pray for the life of each child as if he or she was your own flesh and blood!

Thank you, friends!  I am so grateful for every one of you who has been doing this hard work of praying so faithfully and fervently!  God is hearing and answering!  He can break up every log-jam!

And now, may I present the videos I promised you?

Ta-da!  Our determined Katie-bird has very cleverly come up with a way to say…

All our attorney’s news concerning this meeting was GOOD!!!

Now to Him who is able to do immeasurably more than all we ask or imagine,

according to His power that is at work within us,

to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!

Amen.

How best to describe the state of special-needs adoptions from Bulgaria right now?

Troubling.

Since the elections in Bulgaria were held, very little has been accomplished for any special-needs adoption from that country.  Multiple families have been waiting since the beginning of December for a single signature on their paperwork.  That’s all.  A signature.

There is more, and Oh.  How it makes my heart ache!  But it cannot be spoken here.

“…the maddening red tape and governmental inertia that the enemy loves to put to evil use once all the drama passes through town and things settle down to long, hard work.  He will not let these children escape his clutches without a fight.

The battle is far from over!  Satan hates the light!  He is angry, and is flexing his claws.  He wants to regain control over these children.  We are not ignorant of his devices!  Could you please help to pray him back into his dark, stinking hole?

Please, please pray that God would bring a greater good out of this battle!  We could work for the children from now to the end of time to no avail if God does not act for them.”   ~my words, written in this blog back in August

Let God arise…

O God!  I cry out to You, God Most High!  Arise!  Hear and act!   Show us your glory and your mighty hand, I pray!

Let His enemies be scattered;
Let those also who hate Him flee before Him.
As smoke is driven away,
So drive them away;
As wax melts before the fire,
Let the wicked perish at the presence of God.

May those who hate you be stopped in their plans!  Soften the hearts of those who have set themselves against You!  Have mercy on them, O LORD, and stop them!

But let the righteous be glad;
Let them rejoice before God;
Yes, let them rejoice exceedingly.

Sing to God, sing praises to His name;
Extol Him who rides on the clouds,
By His name YAH,
And rejoice before Him.

O LORD, I do rejoice before YOU!  I pray for our hard-working attorney and for every adoptive family who is enduring this nearly unendurable delay.  Give them Your strength in their weakness.  May they be glad and rejoice before YOU, O LORD!   

A father of the fatherless, a defender of widows,
Is God in His holy habitation.
God sets the solitary in families;

He brings out those who are bound into prosperity;
But the rebellious dwell in a dry land.

O LORD, You are LORD over this process!  You are stronger than maddening red tape and governmental inertia!  I plead with You to protect these little ones!  Bring them out from their bondage and set them in families!  I ask this for Your sake alone, O LORD, for Your glory!

“There is no wisdom or understanding or counsel against the LORD.” 

Tomorrow, at three o’clock in the afternoon Bulgaria time.  Eight o’clock in the morning Eastern Standard Time.

Please, pray. 

She feels completely comfortable in her home now, except for a few rooms she doesn’t go into very often.  She still reacts against unfamiliar places such as our closet, if I enter them while carrying her.

She is more tolerant of Verity, and of seeing me hold and care for Verity.  She was pretty jealous there for a while.

[Nearly all the matching clothing you see our little girls wear came from one person.  Thank you again, L!  So fun!]

“Girls, look outside!  Outside!”

“Pat, pat, pat Katie.”

What did Katie snag?

“Eeeeek!  Verity, watch where you are sitting!”

“I guess I will laugh about it with everyone else!”

She tolerates more and more touch, and just this past week began actually seeking out affection.  She has a certain look when she wants hugs and kisses, almost as if she has to psyche herself for it, but wants it in spite of the intensity.

She will now reach her arms out toward me to be picked up when I come to her and sign, “Come,” and say, “Katie, come to Mama!”

And she’s eating!

Do you remember that back in the beginning, Katie refused to take anything by mouth?  She would let it all drip back out.  If I persisted, she would turn her head away and cry.  She gave the same reaction whether I attempted to touch her lips with a spoon, cup, bottle nipple, or pacifier.

We gave her a complete break from eating by mouth from the time she received her gas-mask NG tube…

…until she’d been home for four days, when I began giving her all sorts of tasty tastes.

Over the next two weeks, she progressed from simply tasting the food to actually eating small amounts of it.

During this time, she also began reaching out for my hand as I gave her each bite with my finger.

From the very first time I detected that she had begun to pull my hand to her mouth, I required her to reach out and pull it in every time.  I got the bite of food ready on my finger, held it out in front of her, and waited.

My “feeding finger” was getting bruised and sore from her little sharp teeth, although she does not have an overactive bite reflex.  Then one evening several weeks ago, Joe noticed the grimace of pain that crossed my face with each bite I gave her.  He encouraged me to try the spoon again.

So we pulled our maroon spoon out, and in the midst of her feeding, without missing a beat, I smoothly switched to giving the bite of food with the spoon instead of my finger.  She thought about it for a short time, then decided not to make a fuss.  I continued the feeding using the spoon, and before the end of that meal, she was grabbing the handle of the spoon and pulling it to her mouth as she had previously grabbed onto my hand.

Before too long, she was so secure with her response to being fed, that I decided to try the feeding chair.

She eats up to a cup of food at each meal now.

Breakfast is generally egg yolk, cooked in oil, half a slice of toast or half a cup of oatmeal, and a mashed banana or about half of a Clementine, cut into small pieces.  She loves it when I mash a banana in with the oatmeal!

For her lunch and supper, she’s had quite a variety!  She’s enjoyed all the foods I’ve given her so far except roast beef.  Oh yes, and Subway veggie beef soup which admittedly tasted like over-salted canned potatoes.  Blech.  That doesn’t count as real food, anyway.

Now that she is eating significant amounts of food, and gives the same pleased reaction to green peas as she does to french toast with real maple syrup, I’m giving her considerably more nutritious table foods.  *health nuts may now heave a sigh of relief* 

In addition to the supplements prescribed for her by the doctor, I give her about a teaspoon of organic cold-pressed coconut oil every day.  She thinks this is the greatest treat!  I also add the contents of a ginkgo capsule to her breakfast milk, and several drops of grapefruit seed extract to each of her bottles.

She does not drink by mouth.  All thin liquids run right back out.  When we are ready to wean her from the NG tube, we will need to thicken her liquids with guar gum, to make it possible for her to eat them with a spoon.  When she is able to take all her solids and liquids by spoon, we will be able to remove her NG tube.  I am guessing that this day is not far in her future.

Dr. Strauss has made himself available to answer questions and concerns by email, including “how to make sure Katie doesn’t grow stout.”  So he is able to update her care plan, using information I send him, without the need for many office visits.  This has been a tremendous blessing to us!

During her next actual doctor visit at the end of the month, we should get some answers to our questions about her hormone levels.

We have Katie wearing Hip Helpers twenty-four hours a day now, except for public occasions such as visits from guests or photo shoots.  Hip Helpers are designed to help prevent excessive hip abduction, or “froggy legs,” in children with low muscle tone.  This causes more obstacles as they learn to move their bodies properly.

This hip abduction issue, like many others, is still being debated by some, but we have been impressed with the results of a similar treatment for Verity.  When Verity was an infant, and slept without something holding her legs in line with her hips, her legs would “frog” outward.  Now, when she sleeps without a Hip Helper, they never “frog.”  She is always either curled on her side or on her belly with her legs going nearly straight downward.  We still use Hip Helpers for Verity, because they give her the input she needs to help her crawl in a more organized fashion.

And we have already noticed good results in Katie.  Without her Hip Helpers, she scoots with both legs together and both hands together, pushing off with the inner sides of her knees.

With her Hip Helpers, she must work much harder, and she does!  We are so proud of how determined she is and how hard she works!  And with her Hip Helpers on, she is now scooting in a more correct fashion, pushing off with her feet, and pulling forward with one side or the other rather than with both sides equally.

We stopped using cloth diapers for Verity halfway through her first year when we realized that having all that bulk between her legs was working against the best interests of her hips.  We decided to wait until she was much bigger to switch back to using cloth, and in fact, we have just started using them for both girls this past week.

Katie after her bath, with her huge overnight cloth diaper and no Hip Helpers~

Katie with her huge overnight cloth diaper and her Hip Helpers~

Katie received an unsedated DEXA scan over a week ago, and we have not yet heard the results.  Once we get the okay for her to be in her Squiggles stander, Verity’s physical therapist has offered to fit it to her at no charge to us!  We’re so thankful for her kind offer!

Katie did well for her actual scan, but was traumatized by the very large waiting room full of strangers.  By “traumatized,” I mean looking about with fear and crying inconsolably with loud and terrified sobs.

The same day she got her DEXA scan, she also had an unsedated dental cleaning.  I plan to write more about that extremely emotional experience in a future post.

For now, suffice it to say, her teeth are clean!

They were healthy under all that junk!  The dentist said the thick mineral layer that coated her teeth actually acted as a protection against cavities!

The gray color of her teeth was a layer of foul-smelling bacteria.  It is now gone!  There is no more aura of garbage pail wafting about my child!

Amazingly, during the past month, her lower right lateral incisor sprouted!  It’s now halfway grown up in what used to be an empty spot!

She no longer drools!

She smells like one of my little children now.  She smells like my milk, our food, our baby bath, our laundry soap, our toothpaste, our environment, mixed with her own sweet Katie-scent.

Her cheeks are chubby for kissing big squishy kisses, and she loves big, squishy kisses!  She giggles and giggles when I give her slurberts.

She screamed bloody murder the first time I tried to bathe her in the bathtub, about mid-December.  Last night, I set her on Laura’s lap to watch Verity having fun in the bathtub.

“What happens if I do this?”  Hmmmm.  So I have to teach her not to throw her toys out of the bathtub just like I did with all my other children!

I supported Katie in a sitting position in the tub while Verity was still in there, and she tolerated it with little complaining noises for a minute or so before she commenced to cry.  I consider this progress!

Then I went ahead and gave her a sponge bath as usual.  This put her back into a very contented mood.  She loves a good sponge bath and coconut oil massage!  I take this opportunity to give her firm pressure input, as well as proprioceptive input.  Our proprioceptors are located in our joints, and I give proprioceptive input via a series of very gentle compressions to Katie’s joints.  This will help wake up her proprioceptors so that they can help her be aware of where her body is in space.  You are using your proprioceptors when you can close your eyes and know the position of all your appendages!  This skill is one of the components to coordination, as you may know if you are accident-prone!

Katie blowing raspberries~

Katie being goofy~

Happy girl~

Someone asked what our child training looks like with a child like Katie.  So far, it means gently guiding her in the direction she needs to go, rather than leaving her to her own devices, even if it is initially uncomfortable for her.  And even if it happens slowly over a very long period of time.

For example, I am teaching her to be aware of her, uh, her bodily functions.

***If you prefer not to read about this sort of thing, feel free to skip the next paragraph.***  

Before I change her wet diaper, I take one of her hands and have her pat the appropriate spot, saying, “Mama, I’m wet!”  Before I change a messy diaper, et cetera.  She is so regular, and sends such clear signals ahead of time, that I realized I could probably catch some of the stinks before they hit the diaper, and that has turned out to be true.  For the first couple of weeks, she fussed in a very whiny tone every time I held her over the appropriate location to do her business.  But I praised her to high heaven every time, and told her what she was doing, and that she was SO big to do that!  And just today, for the first time, she laughed and looked pleased when I praised her, instead of complaining.

Katie is a very expressive and interactive person.  She is showing us more and more that she wants to communicate with us.  She tries with all her might to speak, with the result that she is expanding her repertoire of vocalizations.

Just this past week, she added two skills.

She discovered that she likes to blow raspberries!  Sometimes she just blows without the raspberries~

I’m not going to tell you about the other skill yet!  It is exciting enough to deserve a post of its own, complete with a video demonstration!

We have learned to understand her body language and facial expressions.

When she’s especially happy about something, she has a sweet look~

This face makes me laugh!  It means, “I’m feeling mellow.  Everything’s cool.”  [The food in her teeth means, "I don't chew my food at all."  haha!]

Katie is generally cheerful, and isn’t easily disgruntled until after suppertime.  But she can be persuaded out of an ill humor with minimal difficulty.  She rarely chews on her wrist or clicks her hip joints in distress, as she used to do regularly.  She has learned to look at us and complain instead.

“I have an opinion about this, and it is not good!”

She gets bored easily now, and doesn’t tolerate boredom well.

“Tra la la.  This is so boring.”

And that is a healthy sign for Katie!  It is impossible to picture the new Katie lying alone in bed all day.  She would never stand for that now!  She is curious and loves to be right in the middle of the activity!

Katie exploring buttons.  Is this a choking hazard?

We want Katie to put things into her mouth, but that’s pretty far in her future.  The development of fine motor skills is very dependent on core strength and arm strength.  We won’t expect to see strength and coordination with Katie’s fine motor skills until she’s a good bit further advanced with her gross motor skills.

In the beginning, she couldn’t stand to have any pressure put on her hands, light or firm.  Objects within her reach tended to be seen as a challenge, and therefore just irritated her.  She still rarely grasps anything (except her spoon!), and when she does, it is nearly always to push the object out of her way.  She tends to drop items from her grasp quickly, and her grasp is weak.  Even her purposeful release is not normal–she shakes her hand back and forth to help the item work loose from her grasp.

When Katie began showing curiosity about objects (while we were still in CHOP and during the early days at home), she would explore them by patting them with the back of her hand.  You may remember the video of Katie activating her singing turtle by batting at it uncontrollably with the back of her hand.  We were nonetheless proud of her for actually interacting with a toy and figuring out the cause-and-effect!

She has progressed from there to being willing to pat or weakly push items in order to feel them.  Her other motivation for touching things is to make noise with them, as she did with the tube she was rolling around on the floor, or the dryer ball on her seat tray, or one of her battery-operated noise-making toys.

She increasingly tolerates me giving firm touch input to her hands, but still pushes away a light touch.  This makes sense when you know that deep pressure or firm touch is soothing, while light touch triggers a fight-or-flight reaction.

The button photos show that she has made HUGE progress just to be curious enough to scoot over and pat at the buttons!  It tells me she felt secure and happy.  Then she kept it up because it rewarded her with a noise she liked.

Katie enjoys toys that make noise, and will shake a very lightweight, stuffed rattle for a short period of time, after we model it for her.  She also mimics us when we pat something.  The fact that she so often tries to mimic us is a very hopeful sign of her learning potential.

She loves a good challenge, but only when she feels safe and comfortable in her environment.   Increasingly, as long as she hears the sound of our praise, and sees our joyous faces, she pushes herself to do that thing again, whatever it was.

Well, unless we ask her to support her own weight in an upright seated position!  No amount of praise reconciles her to this task yet!

“Oh pleeeeeeze!  Do I have to do this?  Haven’t I made it perfectly clear I do not approve?”  *sigh*

As is common for people with Down syndrome,  her receptive language skills are far ahead of her expressive language skills.  She demonstrates her understanding of many words I commonly use with her.

For instance, the word “outside,” stated several times, results in her turning her head to look out the window.  If we repeat the word “light,” she turns to look at a light.  When she hears “bed,” she turns to look at her crib.  The phrase “Hi, (person’s name)!” results in her turning toward the person in front of us.  She looks down when something drops and I say, “Uh-oh!”

[Thank you again, R, for this wonderful seat!]

Miss Julie tells me that I talk to Katie exactly as she would want me to.  Miss Julie has been Verity’s speech therapist for several months now.  She is sweet and easy to love.  When I asked her what she charged for private therapy sessions, she told me that in her soul she couldn’t bring herself to charge us for Katie, so she is offering us her services for free!  We praise God for this marvelous provision and for our new friend Miss Julie!!

So how do I talk to Katie?

I talk to her like she’s a nine-year-old child when she is keeping me company while I work.  ”Katie, did you know we’re going to have some visitors this afternoon?  They’re going to bring you a corner chair and you’re going to love it!”

I talk to her like she’s a toddler when I’m teaching her, using simple words and clear enunciation.  ”Katie, that’s a vacuum cleaner.  Vacuum cleaner.  Vrooooooom!  Vacuum cleaner!”  Being a natural-born teacher, this is my usual way of speaking to her, and it’s why she recognizes so many words now.

I talk to her like she’s a baby when I’m loving her up.

“Precious little Katie-bird.  Mama lovey-lovey-loves you.”  *Mmmmmm, smooch, smooch, smooch*

Length – 29 inches  29 1/2 inches 30 1/2 inches

Head circumference – 16 3/4 inches  17 inches 17 1/4 inches

Waist – 12 inches  14 inches 17 inches

Leg, hip to heel – 12 inches 12 1/4 inches 13 3/4 inches

Foot –  almost 4 inches  4 inches 4 3/8 inches

Upper thigh circumference – 5 inches  7 1/2 inches 9 3/4 inches

Ankle circumference – 3 inches  4 inches 4 3/4 inches

Arm, shoulder to fingertip – 10 inches  11 1/4 inches 11 3/4 inches

Upper arm circumference – 3 1/4 inches  4 3/4 inches 5 1/2 inches

Wrist circumference – 2 3/4 inches  3 1/2 inches 4 inches

Guess what, everybody?  I really like to eat!  Mama will tell you all about it in her very next post!

Labor.

I’ve only been through it eight times, despite my eleven children.

During every single labor, superseding the work and pain, I have had a constant, strong sense of dependency on the mercy of God.

I need His mercy on my laboring and giving birth.

I need His mercy on my mothering.

I need His mercy on my writing.

I need His mercy on my advocating.

I need His mercy on all the work I have to do.

Because I may labor, but only God gives life.

Less than three hours after I sent my first appeal (with photos of Katie) to Dr. L in Bulgaria, her reply~

“Thank you for your letter.  I am happy about the Katerina, that she is in a so good hands.  She has made remarkable progress.  Of course I would like to do something for these children.  Would you send me the address and telephone number.  I tried but they are many similar homes in this region.  I am looking forward to hear from you soon.” 

~~~~~~~~~~~~~~~~~~~

I had already given her the correct full title of the orphanage, but didn’t have the address and telephone number to give her.  Here there followed several days’ worth of wires crossing, dead ends, miscommunications, trying unsuccessfully to make connections between people, and feeling more and more like my hands were tied.

~~~~~~~~~~~~~~~~~~~

Yesterday morning, from a woman who works in the hospital’s marketing department~

“I am extremely happy that Katie’s condition is improving and that she receives now the love and care every child deserves. 

Here, at [the Bulgarian hospital], we are extremely concerned with the health condition Katie was admitted and alarmed by the possibility that other children could be in her state.  As Ass. Prof. L has already written to you, both Ass. Prof L, herself and our hospital are committed to do all that we can in order to improve the medical care the children need.  We would like to contact the orphanage without any delay and that is the reason why I would like to kindly ask you to let me know which institution Katie was adopted from.”

~~~~~~~~~~~~~~~~~~~

I still hadn’t been able to obtain the information the hospital was asking for!  Then my Bulgarian friend found some addresses and telephone numbers for me to pass along.

~~~~~~~~~~~~~~~~~~~

This morning, the answer~

“Ass. Prof. L has already contacted the…Institutions and hopefully, very soon, a medical team from [our hospital] will visit the institution.”

And one from Dr. L~

“Dear Susanna,

As soon as I have some news I will inform you.  Hope that we will find the appropriate way to help.

With my very best wishes!
M. L.”

~~~~~~~~~~~~~~~~~~~

Thank you, friends, for laboring in prayer!

Thank You, O LORD, for your mercy!

“Unless the LORD builds the house,
They labor in vain who build it;
Unless the LORD guards the city,
The watchman stays awake in vain.”
~King Solomon

Would you be willing to pray…

~For an important meeting that is to take place next Wednesday in Bulgaria at 8 am EST.  I cannot give out more details right now, but it could affect many children in need of families!  There are some individuals who will be fasting as well as praying.

~For the resolution of many delays in the adoptions of the children with special needs from Katie’s former orphanage.  Please pray that God will move for them!  Pray that He will fill hearts with His love for these precious little ones, all along their journey home!

~For medical help to reach the waiting children who need it, without delay.  There are exciting signs of action on this front.  Please pray for continued strong motivation on the parts of those who have offered to help, until the children are receiving the medical intervention they need!

Friends, as long as God is alive, there is hope!  Pray with hope in Him!  Pray with fresh fervency and great hope in the unlimited power of the living God!  He is working, and the enemy isn’t happy!  But the power of the enemy does not trump the power of God!  He might be angry, but God gets the last word!

And I will rejoice to tell you of the answers to your prayers!  Thank you so much, friends!!

The work of the enemy.  Katie on the day we picked her up from the baby house~

The work of God.  Katie two nights ago~

God will have the final word!!! 

A:  In order to free up more time, we recently decided to cut my pumping time from four sessions per day back to three, and moved my rising time back by another half an hour.  This way, only one of the pumping sessions directly impacts the rest of the family.

With the actual current needs of our household, I don’t need to be up much past 11 pm, or to rise earlier than 6 am.  But with my added responsibility of answering emails and blogging, especially when I fall behind, I am often at my writing late into the quiet hours of the night.

Replenishing my energy?  Physically, it helps me to catch up on sleep once a week.  Emotionally, truly the joy of the LORD is my strength.  If I allow discouragement or a complaining spirit to creep in, that saps way more energy than a week of late nights.

Anyway, I want to be like the P31 woman.  ”She riseth also while it is yet night, and…her candle goeth not out by night.”  See?  Biblical back-up.  *polite cough*

Q:  How on EARTH do you manage all of your children’s needs logistically without losing your patience or your mind?

A:   This is by far the most common question I have been fielding for years!

Before I go on, it must be stated that beyond all our logical limitations and failures as parents, God is continually proving Himself palpably merciful to our family.  We see Him multiplying our efforts and filling in the gaps, providing wisdom and grace when we need it, working in our children’s lives far beyond the ability of any human parent.  Ultimately, we are pinning our hopes on Him, not on our own ability to get it right!

Other thoughts, none of them comprehensive~

If we had started out in our marriage with eleven children, two with special needs, now that would have been challenging!  But we didn’t.  God also hasn’t given us eleven toddlers all at once!  We have willingly adjusted our lives for each child as God sent him or her.

For years, God has been steadily raising the intensity for us, one notch at a time.  We see each assignment training us for the next, from losing an unborn baby, to months of bedrest, to infant twins with feeding difficulties, to the issues surrounding Verity’s Down syndrome.  He has especially been training me to release my death-grip on my own ideas of How Things Should Be, and find joy in knowing that He is choosing for me.

The lessons learned during all these years, through successes and failures, couldn’t have been more perfectly designed to prepare us to receive Katie, although of course we can only see that in retrospect.  At the end of October, 2010, shortly after telling our oldest sons that God had given us a desire to adopt a little one with Down syndrome from Eastern Europe, one of them responded, “Yes.  That fits.  It makes sense.”

I have often explained to inquirers that for us, rearing ten children is not like rearing two children times five.  We’re not attempting to duplicate the lives of the stereotypical modern US family with two kids, nor do we have any desire to do that.  Based on the reactions we have received, we wonder if others may sometimes take their life and multiply it in their minds to come up with their idea of ours.  But our mindset, approach, dynamics, and end goal are completely different.

This work of rearing and educating a large family is a team effort at our house.  Joe sees himself as the one who carries the final responsibility before God for the success or failure of our children’s education.  Since ideas have consequences, this view has a profound effect, a good one, on many levels of our family’s life.

Even in my childhood, I envisioned myself as the future mom of many.  I was the fourth of my parents’ nine children, and they educated me at home.  We were reared by our father not only to think outside the box, but to challenge the thinking inside the box.  But not on our own authority or out of our own store of wisdom.  From the time I was a small child, my father has also provided steady encouragement to me in the areas where God has gifted me.

My mom was an exceptional woman–godly, gracious, educated, intelligent, wise, thoughtful, relational, compassionate, positive, practical, hard-working, resourceful, feminine, skilled in rearing young children, and thoroughly and unapologetically maternal.  If God had not intervened in her life, she would have been a hard and even bitter woman.  Instead, she demonstrated to me the desirability and sweetness of giving up my own strong-willed way to a loving heavenly Father.  She modeled for me how to preach the truth to myself and encourage my heart in the Lord.  I can still hear her voice encouraging younger moms in their high calling.

She went home to heaven seventeen years ago after a fight with cancer, before we had much opportunity to get to know one another as adults.  Joe and I had been married for less than two years, and our oldest son was eleven months old.  Before she died, she wrote in her last letter to me, “You were ready for adulthood when the time came, and that was always our goal for you.”

God truly crafted the faithful, Scripture-centric teaching and training and example of my parents, as well as my childhood experience of the dynamics of a large family, to prepare me for the particulars of this life He has laid out for me.  My mom was not without flaws, but I received more of true value from her in twenty-two years than many women will receive from their moms in a long lifetime.  I miss her and can hardly wait to see her in heaven and give her a proper thank you.

…for everyone to whom much is given, from him much will be required… 

Q:  Do you have moments where you lose your patience?  Not your faith or trust, of course, but your humanly patience?  What does that look like, and how do you handle it in the moment?

A:  When I lose patience with people, it is invariably with someone I think should know better.  I have endless patience for little ones, because you see, they are still in the intensive training stage, that’s my job, I matter-of-factly expect it to last for years, and my mom modeled for me how to do it wisely and lovingly.

But as they turn into tall teenagers who tower over me both in stature and skill, I have equally tall expectations of them, but am more unsure of what my role is toward them when they, uh, demonstrate their character flaws for me.  With teenagers, Joe and I very often feel like we’re making it up, I mean learning as we go along!

When I realized that my impatience centers around my expectations that someone should know better by now, I was rebuked.  Do I know better, and do I still sin?  Sin is not a failure of the understanding, but a failure of the will to bend itself to God’s law.  Simply educating the mind is not enough to solve the problem of sin.

That feeling of frustration that rises up within me is more telling about what is inside of me than about what is inside my son or daughter.  So yes, I regularly need to apologize to my kids.  In our family, that means, “I was wrong for [sin stated in Biblical terms]; will you please forgive me?”

Q:  Now that you are home, what are your top ten priorities/goals/to-dos in regard to Katie, your family and future directions?

A:  Before I answer this question, I must explain that we are organic in our approach to family life.  It’s rarely laid out in neat rows with all the corners coming out square.

That doesn’t mean that chaos rules!

Have you ever seen the human heart in action?  There it is in all its lop-sided, messy, efficient glory, in constant motion, tissues flapping rhythmically.  Flubflub, flubflub, flubflub.  To the casual glance, it is notably unimpressive!  It doesn’t look like something that would work at all, let alone maintain life and enable it to thrive.  But when it’s healthy, it does, and better than any human invention that attempts to replace it.  We have discovered it’s very similar to the living organism called the Musser family.

For Katie, we are excited to watch her continue to progress, and can’t wait to see what this year holds for her!  Her remaining health issues aren’t urgent, so we are taking those in a paced manner, as per Dr. Strauss’s recommendation.  Her physical and emotional healing require what we are already giving her, and I’m addressing more of those specifics in the next blog post.

For the family as a whole, we are able to do more now than we were a year ago in many areas such as extra-curriculars and showing hospitality.  From all that we can currently see happening with Katie, we expect this expansion to continue, also in a paced manner, throughout the coming months.

I have been gradually re-organizing some areas of the household that were used hard but not replenished over the past months.  With the help of a new friend, our Table Time supplies were freshly ready when school started back up after the New Year.  Thank you, K!

We’d love to have more ideas for quiet, educational activities for children ages three to six, using commonly-available materials and a small amount of space.  Any good websites or other resources to recommend to us?

Q:  How is everyone adjusting??

A:  From five-year-old James, “I’m glad Katie is home!  Now she is safe!”

The other night at the supper table, fourteen-year-old Joshua asked,”Do you think we’ll adopt any more children after this?”  Dad:  ”God provided this time, and He could do it again.”  Mom:  ”As long as there are those kinds of places, we hope God lets us adopt again!”  Joshua:  ”Even if there aren’t any terrible orphanages left by then, there would still be children who shouldn’t be in orphanages.”

Eighteen-year-old man-on-a-mission Joseph rarely walks past Katie without stopping in his tracks and bending down to spend time talking with her.

Sixteen-year-old Daniel, “It didn’t take long for us to get used to Katie being here.  Now it would seem strange for her not to be here.”

And that about sums it up.  We never would have guessed how rapidly our life would settle back into a familiar and peaceful pattern.  Peaceful as in “drama-free,” you understand, not peaceful as in “nothing-to-do.”

Even the most intense transitional time was a calm and stable time for most of the family, since the older children are competent to keep the familiar routines going for the younger children.  The affectionate sibling relationships among the children also provided them with a sense of continuity and security, like strands woven together to form a nest.

Looking back, the upheaval was minimal and short-lived.  And I enjoyed making up for lost time with the children!

Now that the weather is cold, gray, and damp, but without the lure of snow, we are getting full use out of our secret playgarden room during the afternoons.

January and February can be comparatively slow for the carpentry business, so this is also the season for field trips and other fun outings.  Joe has been taking the children while I remain at home…

…with Katie, and usually Verity as well, since she still takes a fairly long afternoon nap.  The family is looking forward to watching the flag racing tomorrow at the Pennsylvania Farm Show.  We skipped that annual tradition last year.

Most of the time, the camera remains in the van, forgotten, but the following photos are courtesy of Laura.  Thank you, daughter, you did an excellent job!  

Next post will be a Katie-update, and it’s all good!

Hint of what is to come…

…but saving the best pictures for later…

Q:  Who has taught your children to play piano like that?  Do you have them all in lessons?

A:  The piano music you hear in the background of many videos we’ve posted is being played by our oldest son, eighteen-year-old Joseph.  He started out in 2004 with a teacher who was the answer to our prayers for an excellent piano teacher who 1) has high musical standards, 2) has a belief that we are responsible to develop our talents as far as we possibly can, in order to serve others and bring glory to God, 3) is affordable, and 4) is willing to give the lessons in our home, and every other week rather than every week.  After more than five years of lessons, this teacher saw that Joseph was ready for the guidance of a teacher for very advanced students.  He “happened” to overhear Dr. Maria Thompson Corley practicing at the community college where he takes classes.  Joseph has been studying and progressing under Dr. Corley since the spring of 2010.

[I found a link to a Youtube video of one of her concerts that some of the older children and I attended last year.  The videographer sat right in front of us from about the ten-minute mark onward.]

Daniel and Laura both began taking piano lessons from Joseph’s former piano teacher after Joseph moved on to Dr. Corley.  Joseph practices at least two hours, Daniel one, and Laura half an hour most days.

Q:  In the videos you posted, the music playing in the first one-what is it?  It’s beautiful!!!

A:  Keyboard Sonata, K. 517, by Domenico Scarlatti, originally written for harpsichord.  Joseph came across a recording of it on Youtube while looking up a different piece, and Dr. Corley assigned it to him.  He’s made a lot of progress on the piece during the last month since our home video of Katie was taken.  He was in the very beginning stages of learning it then.

This would be a good time to publicly thank Joseph for allowing me to post videos with his practicing in the background, knowing that his mistakes are going out into all the world, so to speak.  Thank you, Joseph.  I appreciate this!  And I’m thankful that your playing is an integral part of our family’s culture.

Question: You wrote that you didn’t put Verity in a walker, saucer, or bouncy seat during her first year.  What is the reason behind that?

Answer:  Primarily because it would not have been challenging enough for her particular needs.  It has become second nature to all of us to keep engaging her attention.  She does this for herself more readily now than she did back then.

In addition, a walker or exersaucer would not have strengthened the muscles where she was weakest (core strength and arm strength) or encouraged her to move her body in the ways her body needed to move.  She needed lots of tummy time when she wasn’t being held.

Comment:  You are again my hero now that I know that you live in a small house!  

Response:  No heroism involved!  Truly, there are so many benefits to living in a small house that I would not now choose to live in a large one.  Besides, it is all comparative.  When our family visited Daniel Boone’s homestead, we were impressed by how small a space they managed to live in while rearing their eleven children.

Okay, just one more!

Answer:  We are thankful to hear about godly single men or women who want to adopt children with special needs.

Question:  How did you know that He called you to adopt?  Can you try to explain what that looked or felt like for you?  Was it simply watching the video, feeling moved and horrified, and trusting that He would help you figure out how to bring a child home?

Answer:  On one hand, I prefer not to answer with old blog posts.  On the other hand, I’d rather answer that way than wait until I have time to re-state the old blog posts!

So here is the meat of it, all in one place~

Are you two out of your minds? 

Why?

How do you know?

Yes, you read that right!

An open letter

Counting the cost; facing the fear

We follow, not with fears

Comment:  I understand that it may be the case that the majority of adopting families are Christian, but my family is not…and we are adopting a child with special needs.  I don’t think it’s necessarily being a Christian that leads one to adopting a child with special needs, it’s having a special heart.

Response:  You are absolutely correct that simply being a Christian is not what leads people to adopting children with special needs, or there would be no orphans with special needs.

*We were told that the number of Christian congregations in the United States outnumbers the number of children in the US foster care system by three to one, so if one family from each congregation adopted one child from foster care, there would be no US foster care system.*

It is much more complex than that, more complex than I could do it full justice here.

A few brief thoughts~

God is the Father of the fatherless and brings orphans into families, whether the families give Him the credit or not.  He is not limited to only working with people who acknowledge Him, just like He holds the atoms together and the earth spinning on its axis on its orbit around the sun without most people being aware that they are seeing His power at work.  Although they benefit from what He does, they do not recognize Him in it or thank Him for it.  I explained more of this Biblical view in the recent post titled, “He rules the world with truth and grace.”  

That being said, the high value that the Judeo-Christian perspective places on human life is consistent with adoption of children with special needs, whereas under many other belief systems that type of adoption would be a logical absurdity.  It may help also to understand that not all Christians live consistently with a coherent Biblical worldview.  Polls have shown that most self-identified Christians in the United States today live off a belief system similar to the secular culture around them, with some religious activities and adornments added to their otherwise secular lives.  Sadly, even most of those who mentally assent to a Biblical worldview don’t make their daily decisions from that basis.  (By the way, a basic Biblical worldview can be identified and quantified for polling purposes without much difficulty.)

Someone (I’m sorry I cannot remember where I heard or read this) observed that most people in colonial America, Christians or not, lived their everyday lives from a Judeo-Christian worldview, and most people in modern America, Christians or not, live their everyday lives from a secular worldview.

Original source material from history (not edited by moderns for political agendas of their own) clearly shows that since Christ came, when most of the Christians in a given era have made their decisions from a Biblical belief system, they have made a major positive impact on the culture surrounding them.

In contrast, when most of the Christians in a given era were ignorant of the Bible, they subsequently lived like the surrounding culture, at times becoming indistinguishable from it in their lifestyle choices, with negative consequences for the wider culture.  We in the United States are, however, still living off borrowed capital from the past, from the results of the Biblical worldview of those who laid the foundation of and built on our culture.  Many people take that borrowed capital for granted, and even credit it to basic human decency, but that just shows an unawareness of the larger sweep of history, or of the true reality of thoroughly pagan cultures, which are of course made up of basic humans as well.

To illustrate the difference between simply claiming, and actually living out a Biblical worldview, a self-identified Christian of today could feel an emotional surge of compassion for an orphan with special needs, but because his worldview is secular, not take any actual steps toward adopting the child himself.  [Note what I did not just say!  I did not say that all reasons for not adopting are illegitimate or unBiblical!]

The desire to preserve one’s own best interests at the expense of helping those who are more needy is totally foreign to Biblical teaching, but it does fit neatly with a Darwinian, survival-of-the-fittest approach to the world.  The baba of one of the children in very poor shape in Katie’s former orphanage expressed her opinion that she should not be adopted, and that the parents who are adopting her should choose a child who was healthy instead.  This is entirely consistent with what she would have been taught to believe from an early age under Soviet tutelage.

In contrast to pagan thinking and practice, early Christians (for one of many examples) regularly rescued the infants who were thrown away with abandon by the ancient Romans, bringing the babies into their own homes and rearing them as their own children, without regard to whether the children would eventually vindicate their parents’ risky move, and prove to the naysayers that they were “valuable to society” by graduating with honors from Yale University. (Tee hee hee!)  There is also no evidence that the early Christians obsessed over whether or not they could provide a better life for the children than the one they would have after being left to die of exposure.  Understand that most of the early Christians did not come from the wealthy upper echelons of society.  They trusted in the Lord to take care of them and obeyed Him out of love.

It should be mentioned that even seemingly selfless acts can have selfish motivations, such as–but not limited to–being admired as heroes, satisfying some personal need to be needed, getting brownie points with God, or just fulfilling one’s own preferences, as in, “it’s my thing.”  We believe that motives are God’s territory, and that includes the purification of people’s motives.  We don’t trust in the goodness of our hearts, or see ourselves as special at all.  In fact, when I first realized that some people were going to admire us as heroes (I started out thinking we’d be seen as totally crazy!), I began to pray that God would continue to make and keep our motives totally pure.

This is a truly fascinating subject, and I would urge you to look into it further, with an open mind.  It’s hard to understand where we are as a culture today, or why we’re here, without learning what came before this time, and how we got here.  But modern revisionist historians cannot be trusted to help you understand this, because their belief system allows them to play fast and loose with the truth for the sake of their agenda.  They know that if they can convince people of their version of the story of the past, they can manipulate them to come to certain desirable-to-them conclusions in the here and now.  It works somewhat like skilled advertising.  Get them to accept certain assumptions and they will act in certain ways.

For honest, well-researched, comprehensive treatment of the subject, I’d recommend the author Rodney Stark, maybe his book “For the Glory of God,” or perhaps “The Victory of Reason.”  For an accessible, relatively quick and easy read, I’d recommend “How Christianity Changed the World,” by Alvin J. Schmidt.  The following is an excerpt from Schmidt to demonstrate why our family would not be considered unusually praise-worthy by other Christians for adopting Katie were we all making our decisions based on a profoundly Biblical worldview:

“It was this callous, compassionless [ancient Roman] culture that the Christians entered. Unlike the pagans, they showed compassion in caring for the weak, the sick, the downtrodden, and the dying, often risking their own lives in the process. One historian writes that the Christians ‘in the midst of manifold and malignant pestilences…did not hesitate to devote their services, and too often their lives to the sick.’ By putting their lives in jeopardy, they took seriously Christ’s command to visit and care for the sick. They understood what Jesus meant when he said, ‘Whatever you did not do for one of the least of these, you did not do for me’ (Matthew 25:45). They also understood another of Christ’s teachings: ‘Greater love has no man than this, that he lay down his life for his friends’ (John 15:13).”

This historical understanding is another part of the reason our family does not have inflated ideas of our own heroism, or consider that we have special hearts.

We are, however, thrilled to be allowed a glimpse of God moving among His people, breaking our hard, modern hearts, weaning us off of our diet of artificial substitutes for the real thing, giving us a hunger and thirst for His Word, and a steely determination to live it out.

Yes, Aslan is definitely on the move.

“If you take away the yoke from your midst,
The pointing of the finger, and speaking wickedness,
If you extend your soul to the hungry
And satisfy the afflicted soul,
Then your light shall dawn in the darkness,
And your darkness shall be as the noonday.
The LORD will guide you continually,
And satisfy your soul in drought,
And strengthen your bones;
You shall be like a watered garden,
And like a spring of water, whose waters do not fail.
Those from among you
Shall build the old waste places;
You shall raise up the foundations of many generations;
And you shall be called the Repairer of the Breach,
The Restorer of Streets to Dwell In.”

“In service which thy will appoints, there are no bonds for me;
My secret heart is taught the truth that makes thy children free:
A life of self-renouncing love is one of liberty.” 

We got to see our beloved Miss Marcia!  She has been a tremendous help and encouragement to me with Verity’s past feeding issues and current fine motor skill development.

Strength is built from the inside out, so the fine motor skills are dependent on the core strength.  Refined hand skills are dependent on core and arm strength.  So Miss Marcia has a lot of expertise in the area of physical therapy, as well as being a feeding specialist and occupational therapist.  She is an unusually gifted and compassionate therapist, and we love her!

We had missed her over the past two months, but Verity took to her again quickly.

Katie took to her, too, after sizing her up during Verity’s allotted hour.

At the end, while Miss Marcia wrote up her notes about Verity, Katie rolled toward her and giggled.

Miss Marcia asked us if we plan to start Katie’s therapy soon.  I explained that due to various considerations, we had decided to pursue private therapy rather than registering her with the special education department of our local public school district.  And that I needed to make phone calls to area therapists to collect more information.

She didn’t get the whole sentence out before she choked up.

“I would like to offer you my services for Katie at no cost.”

Something had happened to my voice, too, when I tried to answer her.

Praise JEHOVAH OUR PROVIDER!!!!!!

Q:  I watched the [Dark Side of Serbian Mental Institutions] video you linked to under “the beginning of Katerina’s story” and wondered if your Katie is the little 9-year-old named Katerina who has Down syndrome shown in the film.

A:  Thank you for asking.  I think this may have been a source of confusion for some folks.

The answer is no.  The Katerina you see on that Youtube video is from Serbia, and would be older than nine years by now, since that footage was released in 2008.

Our Katie is from Bulgaria, and her birth name was Veronika.

We named her “Katerina Hope.”  “Katerina” for that nine year old Serbian princess who broke our hearts for what these vulnerable little ones are suffering.  “Hope” because that is what we’ve placed in God for all the children we knew our girl would leave behind her when she came home.

Q:  What is being done for the children in [Katie's former orphanage] now?  Are they in the hospital?  

A:  Our Bulgarian attorney will not be able to obtain further information until she visits the orphanage again.  This won’t take place until the next adoptive family gets there for their first visit.  I am part of an active private yahoo group that was formed just for moms who have adopted (just me in this category, so far) or are adopting children from this orphanage.  Because of this I’m able to stay in close touch with their adoption processes and any other pertinent breaking news.  Several of them are hoping to take their first trip this month or next, and several of them also use our attorney.  So she, our Bulgarian adoption attorney, should be going back to the orphanage several times within the next month or so, and we hope to hear reports on the children and orphanage then.  (I hope this isn’t too confusing!)

We don’t expect to hear that the children have been moved to the hospital, although an appeal has been sent from Dr. Friedman to Dr. L, the Head of Pediatrics at the hospital where Katie was well cared for after she quit eating.  We hope that Dr. L, or possibly someone else, is able to help ensure that the children in the worst shape, like Katie, receive appropriate medical supervision during the critical time after they begin to receive better nutrition.

Q:  I am wondering if there are still more from her floor who need homes?

A:  Yes!

YES!!

YES!!!

We have been receiving increasingly large numbers of emails in the past few months, with questions, encouragement, advice, stories.  Some of you have brought me to tears by telling me of how passionately you desire to adopt a child with special needs.  Some of you have told me you are yearning to adopt a child in very poor shape, like Katie was.  This moving of hearts is one of the clearest proofs to us that God is still working miracles.

Knowing our God, we have full hope in Him that He will complete what He has begun.  That He will continue to break hearts and fill them with a desire to love these sinned-against children back to life and health as their own sons and daughters.  And we cannot wait to witness the end of the story as we have been privileged to witness its beginning!

Q:  How many other children are still waiting in her condition?

A:  I have inquired, and have not been able to obtain the exact number.  The total is under forty, though.

Currently, all the children who have been listed on Reece’s Rainbow from that specific orphanage already have families committed to them.

But there are more children coming!

Another adoptive mom who is the first to know when children from this orphanage are listed on Reece’s Rainbow has mercy on me and emails me as soon as a new child is listed!  And Lord willing, I will shout it from the rooftops each time!

You don’t have to wait to hear it from me!  To check for newly-listed children from Katie’s orphanage on Reece’s Rainbow, type #11 into the search bar at the top right-hand corner on the front page of Reece’s Rainbow.

We are pinning our hopes on the power of God to move the hearts of just the right families to snatch them up quickly, and to deliver them to their families safely and quickly.  International adoption?  Quickly?  It would take a miracle, but what else have we been watching God do??

Q:   Besides prayer, in what way can we help the children who are currently in Katie’s [former condition]?  Do the orphanages need financial help?  What can we do to help these poor children have a better life while they are waiting to be adopted?

A:  First, and I cannot stress this strongly enough, what the children need most is loving families of their own.  So as the rest of the children with special needs are listed for adoption one by one in the coming months, you can be ready to give financially to bring them home!

You can contribute to the Baba Programme, which can make such a difference in the lives of the children, like Katie, who have received a good one.  We are convinced that the dear woman who was Katie’s baba saved her from completely giving up!

There are exciting efforts afoot to get better training to the babas as well as better nutrition and sufficient supplies of diapers for the children.  God is right now opening various doors to some of the adoptive moms in the group, as they have been using their adoption waiting times to diligently seek out means to help the children!

For more information on how you can help, please email Stephanie Carpenter at nusker1@hotmail.com.

And…

Dare I say it?

Yes.

I love these precious little ones with all my heart, and I will say it, with tears!

Please consider being one of the families who will snatch them up as their chains fall off.

Q:  What is a baba?

A:  A baba is a local woman who is paid a small sum to spend one-on-one time with the child or children who are assigned to her.  In a very weak economy, such as exists in Bulgaria, this small sum can be a big help to an older woman.  Most of the babas are kindly but ignorant, and not well-trained.

Q: Do you ever foresee a team headed up to go to Katie’s former orphanage to minister to the children and workers on a short-term missions trip?

A:  There are already small numbers of volunteers from the United Kingdom who go in as teams on occasion.  I met a team of ten when I was there in August, and they were very nice young women.  Until I hear of a better option, I would encourage anyone who was seriously interested in volunteering to contact that organisation about the possibilities.  If I could choose to be anywhere in the world doing anything I wanted to, other than staying right here with my family, I would be in Katie’s former orphanage, taking care of the most needy children until their daddies and mamas come to get them.

Q:  Was Katie ever in a home?  Has she been in the same orphanage?

A:  Yes, she spent her whole life in that same orphanage.  She was placed in the orphanage in the town in which she was born, and entered that orphanage directly from the hospital after she was born.  The former director of her former orphanage was there since the Soviet era, which ended in 1989, so Katie and all the other children were under her supervision all their lives.

Q:  What should we specifically be praying for??

A:  This is a spiritual battle, and the best weapon we have is prayer!  The unprintable enemy hates adoption, hates godly, loving families, hates it when anyone values human life, and tries every way he can to delay and destroy what is good.  He’ll take anything he can get.  Joe and I experienced this intensely during our adoption process in ways we still have not told anyone.

Some months ago, I was shocked to learn that there are groups who believe that it’s more important for children to remain in their birth culture than to be adopted into loving families.  Guess who’s behind that thinking!?  It does not come from God!  I stumbled across one of their websites, which derisively mocked blogs like ours.  Did you know that some people actively work to halt international adoptions?  They were successful in Guatemala.

Please pray fervently…

~First, that the unprintable enemy would be bound, and be unable to touch the children, their families, or their adoption processes.

~That God would preserve the lives of the children as they begin to receive better nutrition.

~For our adoption attorney, who struggles with recurrent health issues, and on whom so much responsibility rests.

~For the MOJ to move the rest of the children’s files through quickly, including one little sweetie named “Kami” who desperately needs her loving home, but whose adoption process is being held up due to her file being lost.  I would love to see what happens when an army of Christians prays that all the children are home by the end of this year!

~For loving families to be eagerly waiting for every child as he or she is listed!  For God to move mountains before them as only He can!

Thank you, friends, for willingly taking this burden on.  Thank you for giving.  Thank you for persisting in prayer for the children.  God is working through your obedience.

Christian!  Do not seek repose;
Cast your dreams of ease away.
You are in the midst of foes;
“Watch and pray.”

Watch, as if on that alone
Hung the issue of the day.
Pray that vic’try shall be won!
“Watch and pray.” 

 ”…a bruised reed He will not break, and a smoldering wick He will not snuff out, until HE brings justice to victory!”

Katie after a week and a half home, refusing to play~

Katie after two weeks at home, with her turtle~

Katie after two weeks at home, eating~

Katie after one month at home, playing~

Thank you to every single friend who has served, prayed, given, encouraged, shared, written, helped, loved.

Bless you. We love you.

Answer:   Guess what?  Our faith wasn’t big enough to make an adoption happen, either.  We’re not sure it ever made it up to the size of a mustard seed.

In fact, it still isn’t big enough.  We’re reminded of that every single day.

But the size of our faith is really not the most important part of Katie’s story.  No matter how big our faith in God will grow, it will never be as great as God is.  We will never be able to give God the faith that His character and person deserve.

He has been working in us and through us in spite of that.  His favor, His help, His grace toward us isn’t something we “buy” with our faith.  We don’t have anything with which to bargain with the true and living God, because anything of value that we have is from Him, anyway.  Including our faith.

So you see, He isn’t needy toward us, we are needy toward Him.

What you are seeing when you read this blog and the blogs of other Jesus-loving families who are adopting children with special needs, is our desire to honor Him for what He does, and for who He is.  None of us would say, with the ancient pagan king, “By the strength of my hand I have done it, and by my wisdom: for I am prudent!”  We don’t welcome credit for what we know God has done, as kindly as it is given.  “Shall the ax boast itself against him who chops with it?  Or shall the saw exalt itself against him who saws with it?”

We have seen glimpses of His glory, through a glass darkly, and it gives us joy when He shines forth and is honored.

But God very often chooses to work His will through people who do not honor Him as God, and are not thankful to Him.  Many, many people adopt.  Some of them don’t acknowledge God at all, let alone honor Him.

In fact, from the beginning of time, most of what God has done has not brought Him greater honor from the people He has made.  This fact does not stop Him from carrying out His will.  He doesn’t need to be acknowledged in order to be the King.

He doesn’t need to be believed in order to be the Truth.

~~~~~~~~~~~~

Dear questioner, when I read the wistfulness in your comment, my heart went out to you.  The fact that you are worrying over this is an evidence of God’s working in you, or you wouldn’t give a hoot.

This is what I would say to you if you were talking this over with me in my living room.  Please don’t confuse faith with emotions.  Faith in God is not a matter of having a certain emotion.  And please, don’t look at yourself, don’t look at your dad, don’t look around at other humans.  We are not where ultimate truth is to be found, and I don’t state this on my own authority.  Human beings have an enormous capacity for self-deception.

Jesus is the only one who is not ultimately a dead end, and He is the only one with whom you ultimately have to reckon.  You can be confident that He loves to give more faith to those who ask Him.  Thank Him for the faith that He has already given you, and ask Him to increase it.  Ask Him to reveal Himself to you in all His glory, no matter what may come of it.  I will be asking Him for the same thing.

Mama has lots of pictures and not many deep thoughts right now.  She told me it’s my turn to blog for a change.  I can’t talk yet, but I want to tell you the story of my first Christmas, so Mama’s going to write it down for me.

I stayed up waaaaaay too late on Christmas Eve.  No, my family didn’t keep me up past my bedtime!  Mama tucked me into my own bed as usual, and I listened to Bach cello suites.  I love that music!  I feel at home in my own crib now, and am ready to go there at eight o’clock every night.

That night I think it was all the excitement my family was spreading around the place.  I didn’t fall asleep until my biggest brothers went to bed.  That’s late!

So on Christmas Sunday morning, I stayed sound asleep when everyone else woke up, and my family let me sleep in.  They wanted me to be fresh and bright for my big outing.  Mama made sure I got some Christmas breakfast later.  I really like all the food Mama feeds me, but that was ‘specially good.

Did you know my sister Verity is eighteen months old now?  I don’t play with her much yet, because she’s such a busy girl, but I will.  Mama forgot to tell everyone what Verity learned to do right before Daddy and Mama came to get me last month!  On the very last day before they all said goodbye, Verity crawled up the stairs all by herself for the first time!  My family cheered for her just like they cheer for me!

Here is Verity, waiting patiently for her Christmas breakfast.  See her smile?  She’s a nice sister to me.

I’ve been loving my life with my family so much, and handling company so well, that they thought I was ready to go to a Sunday meeting.  (We’ve had a small but steady supply of company, just the way my family likes it, and I have even smiled at some of them.)

So anyway, they thought I was ready for an outing, but they were wrong!

Once I realized that Mama was not taking me right back out of that strange place full of strange people, I was very upset!

So we waited out the rest of the meeting in the little nursery room, Mama and I.  But even though Mama spoke calmly to me, and I heard big brother Joseph and big sister Laura’s familiar piano music over the intercom, I was barely holding it together.

Big sister Laura took this picture before we put coats on and went outside to our van.  I was still distressed, but I’m learning to talk to Mama about it instead of biting my wrist!

Finally!

Finally!

They got the point and brought me back HOME again!

Once I was sure that all the people who came in the house with me were MY people, I was happy again, like nothing had ever been wrong.  Even when Mama kept taking pictures of Verity and me before she changed us out of our special clothes.  [Thank you, L, they are beautiful!]

I love to be home with all my busy, noisy family around me.  I am happiest when I am right in the middle of everything!  Mama just told me that after we got home on Sunday, she realized that the only new place she’s ever taken me where I felt completely comfortable from the start was–my home!

Anyway, Daddy and Mama acted very silly, trying to get us both to smile at them at the same time!  And they think we’re a pair of characters!

After a while, they were laughing so hard at us falling over one way and then the other, and making funny faces, that Mama gave up trying to take our pictures and just kissed us instead!

After I was changed, Jane held me for a little while.  The other day, Jane said to Mama, “I can smell Katie in our room now.”  Mama asked if I needed a diaper change.  And Jane answered, “No, she has a sweet little Katie smell.”

Anyway, our house smelled very good, like roast beef, hazelnut creme coffee, Clementines, and homemade pecan sticky buns, and it was making us hungrier than ever!  I like the way our house smells!

Daddy read from Isaiah, and we all had our Christmas lunch.  It makes me so happy when all my family is together in one room.  I look around at all their faces and smile and laugh!

We listened to Handel’s Messiah while we ate.  I just love how much music there is in my home!

Then we gathered in the living room, all together.  Mama, Verity and I snuggled together on our rocking chair and watched everyone else.  It was past Verity’s nap time, and she was sleepy.

See this face?  This is Mama, enjoying the true reality.  Mama told me this afternoon that the only thing–the only thing–about adopting me that makes her heart sad is when people look at me and see a scary burden instead of the true reality.  They really think that if they had a child like me that they would be sorry instead of, well, like what you see on Mama’s face.  She wishes she could find the right words to help those people grasp the true reality, that the work and the joy occupy the same space, except that the joy is so huge that it makes the work joyful, too!  Mama loves to take care of me!  There is no drudgery when the love and joy are so huge!  She wants to know how to say this to get past the blocks in people’s minds, and she wants it so much it makes her cry sometimes.

My family gives individual gifts on birthdays, and shared gifts at Christmas time.  We don’t open all the gifts on Christmas Day.  So there are still enough gifts under our pretty tree to last the rest of the week.  Verity and I received some shared gifts–books and developmental toys that will encourage us to learn new skills!

Before we open gifts, we always sing some carols together first.  I love it when my family sings!  It sometimes seems to them like I am trying hard to sing with them.  All my family singing around me makes me feel like I am in heaven, and Mama sometimes has to calm me down because I am laughing so hard!

Here is some of my family getting ready to sing.

Laura always moves closer to Mama so she can learn the alto part.  Laura is a good sister to me!  She loves me soooo much, and said that when she grows up, she won’t marry any man unless he wants to adopt many children with special needs.

Daddy and Mommy always give the children small treasures in their stockings.  My four younger brothers liked their flashlights best.

A kind friend from our church fellowship blessed each of us with a gift.  John Michael received this animal puppet.  When Mama looks at this picture, she says the best kind of gift is the boy with the smile.  [And the nice haircut!  Thank you again, T!]

The shared gifts for my younger brothers are supplies for table time activities.  Our stock was running low and the boys have outgrown some of the ideas.  Mama plans to completely reorganize them before the New Year!  You can see my brothers working together to open that day’s gift.

I didn’t snuggle with Mama the whole time, you know.  She makes me work sometimes, too.  See me sitting and holding my head up?  When Daddy and Mama first got me, I refused to sit up, and pushed myself backward right away.  When Mama looks at this picture, her heart swells up with pride.  I’m her little Katie-bird, and she is proud of me!  And I know it!

Sometimes she asks me to do work that isn’t my favorite, but I am getting better at that, too.  Here she is giving input to my legs and feet.  You can see from my face how I feel about this, but I tolerate it longer and better than I used to.  She is telling me how well I am doing!

After a little Christmas supper, Daddy gave me one of my very favorite gifts!  He held me in his arms for a while before Mama took me upstairs to wash me up for bed!  I never, ever get tired of being with Daddy!  Daddy loves me!

So, everyone, if you read the story I just told you about my first Christmas Day with my family, now you know what I love best.  Mama wants me to tell you that to see how perfectly God matched me to my family, you should read what she wrote about our family way back last spring for the Ministry of Justice in my birth country.

This year, my family celebrated because God sent His Son Jesus to earth, and because He always does everything perfectly right.

Now it’s my turn to ask you a question.

Q:  Which of the following categories contains the true reality?

Things seen~

Sometimes I am wakened in the night by a knock on the door and Laura’s words, “Katie’s fussing.”  This is usually because she is sweaty and needs a lighter set of pajamas.

Sometimes the knock alerts me to the fact that Katie’s feeding pump is beeping, which necessitates an attempt to clear my sleep-fogged brain enough to troubleshoot.

Her dental condition is a disaster of the very costly sort.

Her breath still smells like garbage.  It’s overwhelmingly bad in the morning before her teeth are brushed.

Right now, she has some mild upper respiratory congestion.  This means that when I get her in the morning, her nose is caked with greenness.  If she has been rubbing at it, there is a thin crust all over her face.  She has plugged tear ducts, which means her eyes also have crusties in the corners.

The combined effect of the drooling, the mouth breathing, and the scurvy is that she leaves brown drool spots on her sheets and all around her mouth.

Sometimes when I go to get her in the morning, I find that the port of her tube came open and the pump slowly forced milk out onto her sheets, so that they must be changed and she must have a bath.

Sometimes I find that she has pulled her tube, which has the same effect on Katie and her sheets.  But of course, I also must then go through the process of putting the tube back down.

Her fingers fluttering around her mouth and hair means that her hands and hair smell like garbage shortly after washing said mouth, hands and hair.

I have to constantly be on the watch when I am feeding her, because her hand can move quickly from her food-y mouth to her hair.

Her skin is dry and tight as a result of long-term protein deprivation.  I massage it with coconut oil after I wash her and before I dress her.

She is adding considerably to the load of dirty diapers our family produces every day.

She is with me during the time that used to be my quiet thinking time.  She is with me and she needs interaction.

She has many odd behaviors.  She still has her little tongue-sucking and finger-fluttering habit.  She now plays with the tape and tube on her face, causing the need to replace the taping job frequently.  When she is upset, she still bites on her wrist.  At times when she is feeling calm and relaxed, she squinches up her eyes and face.  Sometimes, when she is overcome with happiness, her eyes widen and she stiffens and jerks her arms around.  She doesn’t regulate her emotions very well.

Her lifelong habit of pushing everything away from herself means that it is her first automatic response to anything that comes into her space, even if it is something she wants.

Katie will be either a therapist’s dream or a therapist’s nightmare, depending on whether or not they really like their work.  She doesn’t have many skills, but boy oh boy can she do those skills the wrong way!  She has a very long road ahead of her.

And it will be expensive.

Bringing her into our home means that we now have the equivalent of baby twins with special needs, one much more delayed than the other, but both still needing total care.

This child’s presence adds complications to our family’s life.

Some would look at that list and think that those are the cold, hard facts, and would conclude that the obvious true reality is that Katie is a burden on our family.

Things unseen~

It gives me an enormous, deep and pure joy, unlike any other I’ve experienced…

…to take care of Katie’s night needs.  For nearly ten years, she had nobody to care for her night needs in the orphanage.

…to fix her feeding pump in the night if necessary so that she can continue to receive nourishment while she sleeps.  This nourishment is healing her atrophic skin, her scurvy, her porous bones.

…to set the appointment for a consult with her dental surgeon.  When I came back from Bulgaria in August, I said emphatically to Joe, “When you see how bad her mouth is, you won’t mind whatever it costs to get it taken care of, it will bring such joy for her sake.”

…to see the incomparable sunshine of Katie’s delight when I walk into her room to get her out of bed in the morning.

…to gently brush the teeth of this child whose teeth were never brushed before we brought her into our family.  To rinse out her mouth and make it feel fresh.  To put strawberry Chapstick on her lips.

…to gently wash the crust from her eyes, nose, mouth, and face.  Cleaning her up would bring joy to my heart even if she didn’t smile and laugh the whole time.

…to wash her mattress and give her fresh sheets.  A vision of the soiled sheets in her orphanage bed rises before me; it was obviously not changed during the week I was there in August.

…to make her comfortable by giving her a sponge bath and washing her hair.  I love massaging coconut oil into her skin with warm and soothing hands.

…to keep this child in clean and dry diapers.  Triumphant satisfaction may be a better description for how I feel every single time I change her diaper.

…to see how she has learned to love my presence.  She is strongly bonding to her mama.  Out of this growing bond comes a growing ability to teach her what she didn’t know she could learn.

…to notice every time she ceases her repetitive behaviors.

…every time she smiles or laughs.  Her face is transformed and the giggles come rippling out of her.  We love to make Katie laugh!

…to see her slowly learn to stop herself from biting her wrist, and instead look up to my face and complain to get my attention when she is feeling upset.  This is as close as she can get to saying, “Mama!” when she is unhappy.  ”Mama!” is what I help her lips to say while I say it aloud, every time she cries and chews on her wrist.

…to watch her gradually learn to stop herself from pushing my hand away.

…to see the progress Katie has already made in her gross and fine motor skills.  We can hardly wait to see how far she will go as the right therapists train us in how to help her best.  That long road ahead of her is full of the joy of hard-won accomplishments, and we get to watch the miracle unfold.

…to see how God tenderly cares for every one of her needs.  The latest?  We had insisted on using some of Katie’s care fund to pay to ship all that adaptive equipment the 1500 miles to our home.  Only to hear a few days later that our friends’ boss had offered to ship it as a kindness to us!  They crated it all and it is on its way!

…to witness the unfolding of the relationship between Katie and her sister Verity.  To hear the older girls relate that they woke up to Verity standing up saying to Katie over and over in her cheerful little voice, “Hi Katie!  Hi Katie!” and hearing Katie’s giggles in response.

…to experience the wealth of complexity this intriguing human being adds to the already-complicated blend in our family.  We don’t hold simplicity as the highest goal of life.  It seems to be a cultural fad right now, fitting neatly with its desire for convenience, but we don’t see a Biblical mandate to keep everything as simple as possible.  Simplicity often plays a supporting role to the higher goal of loving obedience to Christ, but setting it as our highest goal would undeniably have kept us from that obedience.  And would have robbed us of the organic beauty of the complicated interplay of relationships within our family.

There is an indescribable joy in caring for a child who spent so many years not receiving proper care.  Katie is our precious reward from God and He has sent a whole host of gifts along with her.  That is the true reality.

Throughout her life, Katie will have many eyes on her.  We will have many eyes on our family.  From the outside, we may look like a large family with two “mistakes” trailing along at the end.  Period, end of story.

Most folks will be casual observers.

They will feel free to make unquestioned, unexamined assumptions about Katie, but won’t care enough to come closer and learn the truth about her and her story.  The truth which we are eager to share.

Some will be unfriendly.

They will be of the determined opinion that the very idea of her existence is an affront to decent society.

Some will be uncomfortable.

They will give her sidelong glances, look the other way, and hope we don’t bring her close enough to them that they feel obligated to interact with her.  When we are out of sight, they will quickly replace us with something more comfortable and familiar to their minds.

Some will be intrigued.

They will give her a closer look, and will not rest until their questions about her are fully answered, and they have learned the truth.  No matter how much it will stretch them.

And some will be immediately drawn to her.

They will give her a wholehearted love, and will be rewarded in return in ways they could not have foreseen.

Those who turn their faces away have chosen loss.

But did you know…

…that regardless of the responses of others to her, the true reality about Katie and her story will not change?

“And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’”

“For those who live according to the flesh set their minds on the things of the flesh, but those who live according to the Spirit set their minds on the things of the Spirit.  For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace.  For the mind that is set on the flesh is hostile to God, for it does not submit to God’s law; indeed, it cannot.”

“…while we do not look at the things which are seen, but at the things which are unseen.  For the things which are seen are temporary, but the things which are unseen are eternal.”

Some non-governmental groups were distressed by what I had posted on this blog after seeing the extremely poor condition and neglectful treatment of many of the special-needs children in Katie’s former orphanage.

Out of their distress, they began peppering our attorney with emails and phone calls.

No, I’m sorry to say their distress was not a result of broken hearts over the condition of the children there, and they weren’t emailing and calling our attorney to learn what they could do to help rescue them or bring about justice on their behalf.

At any given time, our attorney’s workload is heavy.  Since our visit to Katie’s former orphanage in August, it has only increased due to her diligent efforts on behalf of the children waiting there.  The multiple emails and phone calls were keeping her from her real work.

Because of this, she kindly asked if we could please temporarily remove some specific things from the blog.

We also began to receive scathing and threatening anonymous comments from individuals who mistakenly thought that we were calling people Satan.  For the record, we do believe that Satan exists, and we are not getting him confused with any human beings.

At the time we didn’t yet know that the MOJ, or Ministry of Justice, is eager to see the waiting children adopted, and that they get a lot of satisfaction out of helping those adoptions happen.  They like and respect our attorney.

Contrary to the panicked threats being flung about, the Bulgarian government is not even close to shutting down the special-needs adoption program.  It is one aspect of their laudable longer-term goal of closing Bulgarian orphanages and relocating the children via adoption, foster care, and very small group homes.  We continue to unhesitatingly recommend the Bulgaria special-needs adoption program to many other families!  It is an excellent, stable, trustworthy program.  We have truly enjoyed every aspect of the Bulgarian side of our adoption!

There was another reason for us to temporarily take down the “offending” blog posts, a reason that I have not written about here on the blog at all.

The very first day our attorney and I went to the orphanage and saw the effect of the neglectful treatment, she called an international human-rights group, the Helsinki Committee.  She and her contact in that group did a lot of talking over the next day and a half.

As soon as she and I got in the car that Wednesday morning in mid-August to head over to the orphanage to visit Katerina, she turned to me in great excitement and announced that the human-rights group had agreed to carry out an investigation of the orphanage.

In Bulgaria, directors of orphanages are required to be either pediatricians or family practice doctors.  It is very difficult to remove them from their posts once they are established.  The director of the Pleven baby house is not representative of the typical Bulgarian orphanage director!  Our attorney has been in orphanages all over Bulgaria, and has met many directors who care about the kids and do their best to get them the care they need!

The director of Katie’s former orphanage has been there for years, and is directly responsible for the condition of the children there.  The only way for her to be removed would be as a result of this type of investigation.

We had no idea how long this process might take, but we prayed.  Prayed and did not ask our attorney. We knew she would tell us what she could when she could.  We knew that she and her mom were working very hard to keep the pressure on where pressure was needed most.

It wasn’t until the November day that our attorney came to see Joe and me and Katie in our hotel room in Sofia, the afternoon before we flew Katie home to the States, that we learned the news.  She had not wanted to trust it to an email.

The investigation had already taken place.

A team from the human-rights group and the government of Bulgaria went in unannounced with permission to perform a search.

They found all we had seen and more.

Katie was named in the report.

They found horrible things.  

Deaths.

Attempts to cover up evidence.

Charges were being formulated against the director.

I wept to hear it!

It was real!  God was really doing it!

He was really setting the children free!

I also wept with relief to know that I wasn’t being an over-dramatic crazy woman after all.  I did question this at some low points during the long, silent wait, under outside pressure to keep it all pleasant.  I’ve learned that it’s acceptable to talk about ignorance, but evil?  Like some overheated religious fanatic?

This was more than ignorance.

They knew.

They knew.

They cared more about their own hides than about the little ones entrusted to their care.

On that Friday, our attorney also told us that the time was coming when we could “let the truth explode.”

Today that time has come.

In short, from our attorney~

“The orphanage director has been fired for systematic violations of the rules and failure to perform her duties! It is official!”

Shelley Bedford of the About A Child adoption agency stated in response, “That orphanage is NOT indicative of the level of care that most orphans in Bulgaria receive and the abuse that those children experienced directly conflicts with everything that the Bulgarian government is trying to do for the children in their care. Once they were made aware of what was happening to the children, they took immediate action and that director is GONE. Today we are thanking the Lord for those who saw the abuse and were brave enough to report it to the appropriate authorities (because many before had turned a blind eye) and that those in the Bulgarian government with the power to do so put actions behind their words and laws. I have said many times that Bulgaria’s adoption program, their policies in regards to orphan care and their pro-active government stance on adoption and orphan care is the one that all of Eastern Europe should model. There is no such thing as a “great” situation when a child is an orphan, but orphans CAN be taken proper care of while families are sought for them when those in charge DO THE RIGHT THING. Today, we rejoice that the children in this orphanage will finally start receiving the care that they deserve!!!!

Oh, friends!  There are truly no words to describe the rejoicing!

If God does not act, human work is all for naught!

God has acted!!

PRAISE HIM WITH US!!!

Coming up, “The Rest of the Story: Q & A”

What, crying about Katie’s new stander, Katie’s new pacer gait trainer, Katie’s new bath chair, Katie’s new Theratogs, and a bunch more tube feeding supplies?

Hannah’s mom reached out to me a year and a half ago when both our girls were in the midst of feeding and other struggles.

Since that time, Hannah has come so far!  She is walking now, and eating by mouth.

She no longer needs her tiny pink stander, her tiny pink pacer gait trainer, her bath chair, her Theratogs, or her tube feeding supplies.

My laughter is still bubbling up, and I am shaking my head.  So He had this up His sleeve the whole time.  Their need, their obedience, our need.  “I am so very excited that we can help Katie,” says Hannah’s mom.  “I can’t tell you how much it means to me to be able to.” 

Whoooosh.  Just like that.  He took it out of our hands.  That was nothing, He says.  Nothing is too hard for Me.

“So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’  For the pagans run after all these things, and your heavenly Father knows that you need them!  But seek first His kingdom and His righteousness, and all these things will be given to you as well!”

O LORD, we praise You!!!  Great is Your faithfulness!!!

A:  If you don’t see your comment appear, you probably clicked on one of the photos, and commented in response to it.  Every so often, when I check comments, I see that someone has replied to a photo.  The only way to see those comments is to click again on the photo.  So I get to read them, but nobody else does unless they click on that same photo.

Does that make sense?

Q:  Is Katie covered under your family’s medical insurance now that her adoption is finalized?

A:  Our family’s health care plan is not health insurance, it is our membership in Samaritan Ministries International, a Christian health care sharing program that is exempted under federal health care legislation.  We are legally considered self-pay patients.  There are layers and layers of story under this aspect of Katie’s adoption which I cannot yet tell here on the blog!

Katie was added to our family’s membership in Samaritan Ministries the moment she was added to our family.

We do all we can to eliminate unnecessary medical costs and pursue ways to lower legitimate medical costs.  We love our brothers and sisters in Christ who are helping us with our burdensome medical bills; we want to keep their burden as light as possible.

Our final trust is not in Samaritan, though, it is in God.  And at every turn, God has provided.

He has worked through many of you to help put together a care fund for Katie’s needs that are not shared by Samaritan.  We will stretch every penny of those funds, which will be used primarily for various therapeutic tools and equipment.  We are so thankful for each of you who have shared in this way!  We have used a little of the fund already to purchase supplies such as a used IV pole, interlocking foam matting, and an exercise ball.

We currently have well over a thousand dollars’ worth of medical supplies related to Katie’s feedings, all of which were given or loaned to us!

Because Katie is a patient at the Clinic for Special Children, we will receive a 70% self-pay discount on all services we receive from CHOP or DuPont.  The Clinic does not work with any type of insurance, and offers services at free or greatly reduced rates, although the doctors there are world-class.

We do not fear the future years of extra expenses.  Our God knows all about Katie’s needs and has taken them as His own responsibility.  We love trusting Him to provide, we love seeing Him work outside the usual boxes to do it, and we love telling other people how faithful He is!

Q:  The brittleness in her bones…what is the eventual treatment for that?  Can it be corrected or reversed?

A:  Yes, it can be corrected, but it will take a long time.  Her bones are in such bad shape that if she rolled off a bed, she would crush them.  Dr. Strauss explained that the three top remedies for her fragile, porous bones are as follows, in this order:

1.  Weight bearing.  We are looking into getting a stander for Katie, and are excited to see how God will provide for this need.  Dr. Strauss is researching whether there is a bone density threshold below which a stander would be contraindicated.  We may need to wait for the results of the DEXA scan.

2.  Vitamin D.  Katie’s vitamin D levels were tested at CHOP, and were precariously low.

3.  Calcium.

We are also considering a medical therapy to help build her bones, but this also needs to wait for the results of the DEXA scan.

As she rounds out, we will have to guard against the impression that she is less fragile.

Q:  What about the growth hormones?  Will her body ever reproduce them?  Will they give them to her artificially? Is there any need to do that?

A:  We don’t know the answers to these questions yet.  We should begin getting answers as the CHOP doctors get their reports to Dr. Strauss.

Q:  What does the malnutrition do to her body as she approaches puberty?  Will she bypass that?

A:  Good questions!  I’ll take them to Dr. Strauss!

Q:  Does she still have her baby teeth?  

A:  Yes, she still has her baby teeth.  We don’t yet know how her malnutrition has affected the development of her adult teeth.

Q:  Have her vision and hearing been checked as well?

A: Not yet, but they will!  All in good time, my friends!  Other than her initial visits with Dr. Strauss, we decided to let the non-urgent stuff wait until after the first of the new year.  The hearing testing can be done at no cost through the Clinic.  Her vision testing will be done by the same pediatric ophthalmologist who sees Verity.

Q:  I was wondering whether you bolus feed Katie, or do you have a pump?

A:  She gets three bolus feeds during the day via syringe, and a continuous feed overnight via feeding pump.

Q:  You said you were feeding Katie little bits of tasty foods; what are you feeding her?

A:  *proceeding to scandalize every health nut out there*

Over the past week and a half I’ve given her tastes of banana, white chili, orange jello made with pineapple juice, with pineapple and shredded carrots, egg yolk from a fried egg with butter, red and blue jello with pear, Clementines, oatmeal with brown sugar, taco bake, homemade chocolate frosting, creamy natural peanut butter, homemade strawberry jam, bananas in orange juice, pizza sauce, soft spiced and sweetened apple from apple crisp in mama’s milk, decaf coffee with milk, oranges, barbecued chicken, twice-baked potato, ripe plum, Dove milk chocolate, mashed potatoes, chicken divan, ham, scrambled eggs with onion and ham, bits of wheat cinnamon rolls [thank you, H!  they were fabulous!] and baby food pears.  I might have missed some.

I use my finger to put the food into her mouth while I am giving her the bolus feed of fortified breastmilk, so that she associates eating with getting a full tummy.  She will only take food from my finger.  Spoons of any kind are anathema to Katie.  We wonder if it has to do with past associations?

What does she think of all this real food?

She approved of it all, and…

[please brace yourselves]

…she is eating.

She gradually showed more and more enthusiasm by opening her mouth wider, pulling my hand toward her mouth, chomping down on the finger that is feeding her, smiling and even laughing at each bite.

Behold~

By the end of this past week, she was eating as much as several tablespoons at a meal!  She is eating enough that we will have to adjust her diet to prevent her from gaining too much too fast!  We are praising God for this stunning progress!

Q:  I know you said that the doctors are thinking that she will need the tube for about a year (or more)… why are you not opting for a g-tube so she doesn’t have to have the tube down her throat?

A:  We knew beforehand that G-tube surgery might be unavoidable down the road, but after receiving strong encouragement and support from a doctor friend, we decided to give her a fighting chance to eat by mouth.  The type of feeding tube Katie is using is the same type we used for Verity.  It’s a thin, buttery-soft NJ tube being used as an NG tube and can be used long-term, being changed once a month.

We knew it could possibly interfere with her learning to eat, and we’re so thankful that it doesn’t seem to be hampering her desire or ability to take food by mouth.

Q:  What type of downs does Katie have? From her pictures she does not look like she has an extreme case? Is her diagnosis similar to Verity’s?

A:  I was so glad to see this question!  It provides me with a marvelous opportunity to dispel a few commonly-held myths!

I know my answer may look technical, and may tempt most eyes to glaze over, but if you are not already familiar with Down syndrome, I hope you take time at some point to digest this information.  If you do, thank you so much for being willing to learn!

~Down syndrome is like pregnancy in that you either have it or you don’t.  Most of us have the typical two copies of the twenty-first chromosome in every cell of our bodies.  Nearly all people with Down syndrome have three copies of their twenty-first chromosome in every cell of their bodies.  There is a relatively rare exception to this rule.  Mosaic Down syndrome affects some but not all the cells of the individual’s body.  Depending on which cells are affected, the individual could display very few characteristics of Down syndrome or, more commonly, be nearly indistinguishable from those with regular garden-variety Down syndrome.

~Not all people with Down syndrome have the same physical features.  There are distinctive physical features that are commonly present in individuals with Down syndrome.  But not all people with Down syndrome have every one of the features on that list.  And the features on that list can be found in the general population.  Katie’s karyotype, or the test which showed what her chromosomes look like, showed that she has Down syndrome.  Katie has some of the common features, but not all.

Verity’s karyotype showed that she has Down syndrome.  Verity also has some of the common features, but not all.

~There is a range of cognitive abilities among people with 47 chromosomes just like there is a range of cognitive abilities among people with 46 chromosomes.  The cognitive impairment of most people with Down syndrome will fall somewhere in the mild to moderate range.

~It is impossible to determine someone’s level of cognitive ability by the strength or weakness of their Down syndrome features.  The extent to which the common physical features are present in people with Down syndrome is entirely disconnected from their cognitive ability.  This means someone may have strong Down syndrome features and a mild cognitive impairment.  Someone else may have mild Down syndrome features with a moderate cognitive impairment.

It should go without saying, but unfortunately it cannot, that people with strong Down syndrome features and profound cognitive impairment have the same value in the eyes of their Creator as people with no Down syndrome features and gifted cognitive ability.

We think brains are overrated and love is underrated.

Just throwing that in there for good measure; we have no little experience with both.

Q:  Because she is so very tiny, do you know if she could have a form of dwarfism as well as Down syndrome?

A:  We know that she does not.

Katie’s condition was not caused by her special needs, it was caused by criminal neglect of her needs from the time of her birth.  She was placed in the orphanage and neglected because she was born with Down syndrome.

You may not have read enough of Katie’s story yet to know that there are other children in Katie’s former orphanage who are also very tiny due to lack of human contact and lack of sufficient nutrients, among other preventable causes.  Some of the other children have Down syndrome like Katie does, some have other diagnoses like cerebral palsy.  What they all have in common is not some rare diagnosis, it is the way they have been neglected.

One of the blog posts currently under construction will attempt to tread carefully through many more issues related to Katie’s former orphanage.

Q:  Have you found anything yet (besides music) that she seems interested in?

A:  Yes!  This will also be the subject of a future blog post, Lord willing!

She is unequivocably uninterested in Violet the talking puppy dog…

…and in her little pink, sparkly ball.

“Will someone please get this irritating thing…”

“…out of my sight?”

Suggestion:  I think you need to add to the name of your blog to include the blessings and joys of your little sparrow.

Response:  If we ever change the name of the blog, the new name is ready and waiting, and is very different from its current name.  But we’re not quite ready to do that.

Did you know that the word “verity” is actually an English word?  It means “truth.”

…the blessing of truth…

Suggestion:  Oh, and I realize you have your own ideas of what you want to do with her hair, but I am making a plug for the length and style it is now.

Response:  We agree with you for many reasons.

By the end of this past week, it moppishly needed a trim.

Unfortunately, I tried to trim it myself so Katie didn’t have to be subjected to a hair salon.  EEEEEK!!!  Oh the distress!  Oh the unspeakable dismay that filled my maternal heart when I surveyed the results of my depredations!  How I regret it!!!  NEVER AGAIN!!!!

My few small consolations are as follows:  1) Katie tolerates my efforts to cover it up with hood, hat or hairbow.  2)  Uh, it no longer looks moppish.  3)  Hair GROWS!!!

The following photo was taken in response to a request that I provide some perspective on her size in relation to a known object.

Oh, you thought you would see a photo of the havoc I wreaked?

Nope.

Katie with hood on full size bed I~

Katie with hood on full size bed II~    

Length – 29 inches  29 1/2 inches

Head circumference – 16 3/4 inches  17 inches

Waist – 12 inches  14 inches

Leg, hip to heel – 12 inches  12 1/4 inches

Foot –  almost 4 inches  4 inches

Upper thigh circumference – 5 inches  7 1/2 inches

Ankle circumference – 3 inches  4 inches

Arm, shoulder to fingertip – 10 inches  11 1/4 inches

Upper arm circumference – 3 1/4 inches  4 3/4 inches

Wrist circumference – 2 3/4 inches  3 1/2 inches

…I have permission to announce to you that sometime in 2012, this little girl…

…will learn that love and family and home are something to smile about.

Through a set of circumstances only God could have orchestrated, Kolina has a family!!!

Thanks be to God!!!!!!!

A:   This is an excellent question for several reasons, and one that is not easily answered.

I have been feeling very torn about how smoothly this transition has flowed for us.  I promised to tell you the truth about how it goes, and I have done so.  We’re not covering up some unmentionable struggles or other.  Katie has already exceeded our best expectations for her medical and emotional response to coming into our family and all that entails.

After an adoption fraught with extremes of emotion, we feel an enormous sense of grateful relief.  Relief like the relief a mother feels at the safe arrival of a baby after a tenuous high-risk pregnancy and delivery.  Relief that there is no more need to prove to everyone and their grandma that being loved and cared for as a child in our family would be better for Katie than languishing in her orphanage bed.  As we joked when an airport policeman gave Joe a prolonged evil eyeball, “Maybe he suspects us of attempting to smuggle a child with severe special needs out of the country?”

The greatest pressure on me has come from the ongoing responsibility that God has laid on me to blog and answer emails.  And of course, there’s the relentless pumping schedule.  Not complaining, not resenting, just relating this part of the story.

So why feel torn?  Why not simply gratitude for this mercy of God??

Why did I feel the same unease years ago after discovering that we were expecting twins?  There were really two babies growing and wiggling inside my body!  I had always hoped for twins!

So…torn?  Conflicted?  Uneasy?  Why?

The first announcement I made that day was to my father.  I knew he would be ecstatic with us!

There was another phone call I needed to make before more time went by.  I needed to tell her before she heard it from someone else.

How could I bring myself to dial my older sister’s number and tell her that although she had lost baby after baby–was it nine or ten by then?–that six months after John Michael was born, I had conceived two babies?

A few days ago, when I called to ask her permission to tell this story here, just relating this memory brought fresh emotions back to both of us.

And that is what I feel when I think of some of the adoptive families who may have stopped by our blog recently, families who have been laboring through intense, long-term post-adoptive struggles.

My feeling of being torn comes from the joy of seeing our daughter open up and respond to our love, mixed with the sorrow of knowing that our very public joy could intensify the distress of another adoptive family.  I did not foresee this when I committed to openness about our difficulties after we brought Katie home.

Furthermore…

There are two different types of stories on Reece’s Rainbow.

A large majority of the children you can see listed on Reece’s Rainbow are part of a story that will end in an adult mental institution if a family does not adopt them.  These children will grow and progress enough to learn to walk and talk and feed themselves, and often by the time they reach the age of transfer, they are toilet-trained.  They are independent and have formed their survival skills.

Katie’s story puts her in a minority.  She and the others on her floor never progressed to a point where they could have been transferred.  They continued to be treated as babies and toddlers, although some of them have even reached their teen years.

Ironically, prospective adoptive families might possibly consider the profiles of these two different types of children, and think, “Wow, I’m not sure I could handle a child like Katie.  The children in her condition would be so much more challenging, because she will need total care for the long term.  But these others, the healthy ones, they look like they would fit into our family much more effortlessly.  They can already do so much for themselves, so it will be less demanding of our time and attention than a more severely disabled child like Katie.”

It is ironic because now I look at the struggles of some of the other families with the behaviors and attachment issues of their bigger, healthier, stronger, more independent adopted children, and I think, “Wow, those children look so much more challenging than Katie.”

So to more directly answer your question, yes, we see many ways in which God especially equipped us for this particular child, just as He has for all the other children He has sent us.  God also especially equips other adoptive parents for their particular child or children.  In fact, the more adoptive families we meet, the more strikingly obvious this becomes to us.

Most of you do not know us in real life.  Most of you will never meet us or visit our home.  We would love it if you did, because if you have any lingering grandiose ideas about who we are, you would be properly underwhelmed by us and our house.  And once people grasp how very ordinary and unpolished and unsavvy we are, they can more clearly see what a great thing God has done.

It should also be reiterated that every child is an individual, so no other child will be exactly the same as Katie, not even the other very tiny and malnourished children who are still waiting on the top floor where she was.

That being said, we unhesitatingly believe that many of the nurturing families we know could do what we are doing.  We are truly blessed to know many families who have an abundance of what a little child with Katie’s history and health condition needs to blossom.

There are so many wonderful adoption resources that prospective adoptive parents should use to educate themselves–online articles, international adoption clinics, books, videos, and conferences.  The resources that have been most valuable to us so far overall have been the video course our home study agency required us to take, an online post-adoption parent support group, and the blogs of other adoptive families.

Medically, we would strongly suggest that other families adopting children like Katie use the services of an international adoption clinic like CHOPADOPT.  By the time we picked up Katie, we had been well prepared for many difficulties, and were ready to take them on.  We would love to speak by telephone with anyone who is seriously considering making the commitment to adopt a little child in Katie’s condition.

Q:  Can you explain the practical implications of parenting your fragile baby bird?

A:  Katie is very fragile, to the extent that if she rolled off the bed, many of her bones would be crushed.  We take extra precautions to protect her, and this awareness of her vulnerability is quickly becoming part of our family’s inner sense.  By the way, this inner sense will be of tremendous value to all seven boys in our family.

She is very weak.  She moves in slow motion.  She has behaviors from living in the institution, but they are all very pitiful and gentle repetitive movements of her fingers around her face and hair.  She also sucks on her tongue, which causes her to drool.  We have accepted that these habits could linger for months, if not years, and they don’t bother us in the least.  Why would they, unless we refused to understand or accept her history?  She is not injuring herself or others, or damaging property.  So…big ol’ hairy, scary deal.

Right now, she needs to be physically cared for like a baby.  There are very minimal practical differences at this point, mostly involving her need to be lifted from underneath and never pulled up using her arms, legs, or underarms.  I brush her teeth and feed her through a tube instead of by bottle.  Additionally, she is nine years old and does not nap, even if she is lying down next to me while I rest.

Her tube feeding and schedule is neither grueling, burdensome, nor hard.  It would be even simpler for a mom who was not pumping, as I am.  Replacing an NG tube after little fingers have pulled it out is easy and fun once you know how.  And it provides a neat opportunity for an older sibling to be a helpful nurse’s aide as well as to observe the proceedings.

Katie needs to thoroughly bond with me, so I keep her with me as much as possible, carrying her about, keeping her nearby while I work, curling up next to her if I lie down to take a nap.  We were told that the more dependent the child, the faster the bonding process typically happens, and from our experience, that is proving to be true, although of course it must be said that it does not guarantee anything for the other dependent children from her orphanage.  Katie is very sweet and responsive, and makes a pleasant little companion throughout the day.

She handles strangers well if there aren’t many of them at a time.  She also does better if they keep their distance and don’t face her directly or otherwise send her signals that they want her to interact with them.  She is making slow but detectable progress in this area.  I am staying home from the Sunday meeting for the time being, as we had previously planned, until we see that she can handle it.

We did not know that she would be so responsive to our affection.  It needs to be stated again that nobody can predict how the other children on her floor will respond to their families’ love.  We fully expected to be caring for a child who cried when she was moved or touched, not one who progressed quickly to curling up toward me and reaching out toward my face, laughing at little teasing voices and games, smiling at having her hair washed and combed and her teeth brushed, being delighted when she wakes up in the morning and mama comes to get her.  She is a pure joy.

Although we are used to her now, she truly is surreally tiny.  We try to remember to warn visitors ahead of time to prepare themselves for a shock.  She is tinier than she appears in photos.  There is another side effect of her shocking size you might not be aware of.  I have had countless opportunities to answer questions and tell her story while in public with her.  It is fascinating to witness reaction after reaction to her condition.  The reactions have ranged from utter shock to disbelief, professional politeness, pity, instant affection, curiosity, admiration, distaste, respect, awkwardness, and awe.  My personal favorite?  A genuine, ”How could this happen?”  I also had the comical experience more than once of waking on the other side of the hospital curtain, hearing other night nurses come in and take a peek at her while they thought I was sleeping, whispering, “Oh my word!  She’s so tiny!  She’s cute!”  We hadn’t foreseen this side of being Katie’s family, but we welcome every opportunity nonetheless.  We would urge other adoptive families to be ready with some statistics for interested people.

Babies who are born with special needs in the former Soviet bloc countries are placed in orphanages at birth.

Sometime between the ages of four and eight years old, depending on the child and the country, they are transferred to an adult mental institution.

Adult mental institutions in Eastern Europe are not fit places for any human beings, let alone the most vulnerable of all children.

Eighty percent of these little ones die within the first year of transfer.  If the child’s diagnosis is Down syndrome, that percentage rises to ninety-five percent.

The orphanage our child came from was not one of the better ones.  [The day I joyfully put my child into an orphanage is the day I have permission to say the words "good orphanage."]  Our child’s needs, including her need for human contact, were criminally neglected from the time of her birth, because she was born with a disability that is stigmatized in that culture.  Ideas have consequences.

Our culture is not morally superior.  Prejudice against those with disabilities is alive and well here, especially against those with cognitive delays combined with distinctive physical features.  Here we manifest our prejudice by hunting them down and destroying them before they’re born.  Did you know that for a prenatal diagnosis of Down syndrome, the abortion rate is over ninety percent?

Some children who are extremely neglected simply stop producing human growth hormone.  They stop growing.  In addition to this, our child was starving due to not receiving the nutrients she needed.  She is now healing from the damaging effects of severe, long-term protein-energy malnutrition.

Most people who see Katie in public will not see her through eyes of love as all of you do when looking through my camera lens with me.  Katie has very obvious special needs.  We are glad for our other children’s sake that they cannot now escape the startling realization that their sister, who will be written off by many others as severely disabled with nothing to offer the world, is actually a richly complex individual who has her own subtle ways of communicating and an enormous capacity to give and receive love and joy.  They will know this unique person closely, and be the wiser and wealthier for it.

Q:  What would you say to someone who asked you the best way to count the cost of special-needs adoption ahead of time?

A:  We would challenge you to educate yourself about the possible difficulties.  Look the difficulties full in the face.  Don’t ever shy away from the truth; the truth is your best friend if you will accept it.  It also has a way of separating the wheat from the chaff.

Adoption work is hard!

We joke about PTASD.  Post-Traumatic Adoption-Stress Disorder.  Ha.  I could say more here about intense spiritual battles with discouragement, fear, and other sulfurous poisons, but our mighty God won every time and that is what matters now.  We would never enter this battle if God didn’t go with us.

Adoption work takes time!

If we hadn’t adopted Katie, we would be doing other things with our time.  God decided that those other activities are not as valuable as the life of this child.

Adoption work is expensive!

I was reminding Jane of some of the miracles we’ve witnessed over the past year.  I explained that we’ve heard many reasons people give for why they can’t adopt a child, and that most of those reasons don’t impress us as much as they used to.  You see, we fit into nearly all the categories ourselves and probably more so than they do.

…we don’t have the time, it’s not a good time, we wouldn’t have the patience for unusual behavior problems, there are so many special needs that intimidate us because we don’t know anything about them, we don’t have health insurance, it looks like such a confusing and complicated process, we don’t have it all together all the time, we’re too busy with our other children, our house is too small, and above all, we couldn’t afford it…

Special-needs adoption created needs we never had before in our lives.  Using one means or another, God has continued to meet and exceed every need without exception.  As Jane said to me yesterday, “It would have been too expensive for us if we didn’t have God.”

Adoption work is life-changing.

Our family can attest to the fact that all the changes have been for the better.  Yes, harder, but we started with the mindset that hard is not bad.  Those of us who have the ability to assess it would say that this has been the hardest and best year of our lives so far.  We needed to experience in real life what our heads had known to be true all those years.  We needed our unbelief exposed and our view of God enlarged. We needed “life-changing.”

You see that there are difficulties.

Now look at the true and living God as He has revealed Himself in Scripture.

Which is bigger and stronger?

If the answer isn’t clear to you, look again at God.  Keep looking.  Keep looking.  He is why we have Katie and I am still in my right mind!

Bonus Q:  So ready to adopt!  Praying God will change either my heart or my husband’s.  Were you and Joe on the same page from the beginning?  Should I just pray and say nothing to my husband?

Hopefully a bonus A:  Yes, Joe and I were on the same adoption page from before the beginning, but knowing that fact truly doesn’t help someone in your shoes.  What does help is knowing the truth that God has His ways of moving people from where they are to where He wants them to be.  And that goes for our husbands, too.  I have marvelous tales to tell about that subject, one day.

For now, I urge you to do a few things.

Recognize God’s right to tell the story of your life as He pleases.   Ask Him to keep your heart soft and keep your YES receptors open to Him, no matter what He decides your story will be.  Just keep saying YES to Him.  You can have full confidence that He will lead you, and no mistake.

If you are drawn to a certain child on a photolisting site, print out two photos.

Hang one photo on your refrigerator or somewhere else you can’t miss seeing it many times a day.  Love that child with all your heart by praying fervently that God would send him or her a family.  You know enough now to be able to pray lots of other things for that child, too.

Fasten the other photo to a mason jar and set it right out in the middle of your family’s activity.  Collect all your loose change in it until it’s full, and send it off to that child’s fund, or to a family who could use the adoption fundraising help.  Better yet, tell your children that once they have filled the jar, you will match whatever they put in there, no matter how much it is.  Knowing that people will put their money where their hearts truly are, every gift to our adoption of Katie felt to us like a giant vote of confidence from the giver, and through them, from God.

I’m out of time, so more photos will have to wait.  But I want you to see two of the reasons I am having the time of my life!

…this…

…this…

…this…

…or this little person.

We signed up for this…

[Katie, adoption file photo]

…this…

[First day Mama met Katie, August 15, 2011]

…and this little person.

[Katie on Gotcha Day, November 14, 2011]

Stay tuned for Different kinds of hard: Adoption Q & A

Q:  Do you stay in touch with Katie’s Baba?

A:  We will be doing that through our missionary friends, the Blisses.  When Baba Donka has a computer and internet again, we plan to send photos.

Q:  Why was Katie able to get a Baba at the orphanage?  Was that something you paid for, or was she paid by the orphanage?

A:  Neither; the Baba Programme is being supported by a charity organisation.  We don’t know how certain children are chosen to receive a Baba, but most of the children in her former orphanage still do not have a Baba.

Q:  Can you tell us what is next medically for Katie?  I know she is getting feeds through her tube so that she can grow.  But what else is next?  Dental? Or?

A:  We know that there is more bloodwork in Katie’s future.  We will need recommendations for some specialists.  We need to look at the next dietary phase.

We should get a good start on a game plan this Friday afternoon with the help of Dr. Kevin A. Strauss, her pediatrician at The Clinic for Special Children.  Dr. Strauss has been Verity’s pediatrician for over a year now.  He’s a rare combination of genius doctor and compassionate human being, and we respect and like him very much for his humble spirit.  (Allergic as we are to doctors with a god complex.)  Actually, we appreciate everything about the Clinic, and consider ourselves blessed that it is only ten minutes from our home.

Q:  You have mentioned Katie’s dental condition, how is that going?  Has she lost most of her teeth?  Will she need a lot of dental work in the near future?

A:   Her top teeth are overcrowded, but in good condition.  Her bottom teeth are gray, and coated with a thick layer of calculus.  The dental specialist who examined her in the PICU said that she still has her baby teeth.  He also said they wouldn’t be able to tell us the true condition of her bottom teeth until her teeth were cleaned.  The cleaning will need to be done under anesthesia at some point.

Q:  Do you have a schedule that you and the children are on during the day?  I was wondering what a typical day (I guess “typical” is not a great word for it) in your household looks like with Katie home.

A:  Schedule?  No.  I’ve tried and tried, but alas, schedules and I don’t get along very well together.  One or the other of us begins feeling very whiny if we get too close to each other.  Just the thought of a schedule makes me want to draw a deep breath and think about starting a project.  But a good routine, with anchor times, is always my friend.

Speaking in very simplified terms to give you the general idea–certain things must be done by breakfast time, lunchtime, suppertime, and bedtime.

As far as our current routine, it is still being tweaked since we did not know until we came home with her what Katie’s care would involve.  We’re starting at survival mode, and we’ll be slowly moving toward adding in activities as our household can tolerate it.

Q:  How do you manage to keep your house so clean with 11 kids?

A:  My first reaction to this question?  ”What makes you think our house is so clean?”  Heh heh.  It is constantly a work in progress, as we live in a hundred-year-old 1300 square foot farmhouse with now 13 people.

Other thoughts, in random order…

We have older children who are quite competent, not just younger ones who are still learning to be competent.  We were there some years ago, and yes, it was hard and fulfilling work.  Now I even have an extra driver who only works part time and doesn’t mind running short errands in a pinch.

Now the challenge is to continue to allow the little ones to learn rather than having the big people handle it the quickest way.  But we discovered that it is a great motivation for older ones to teach younger ones a task, if they know that they will be passing the job down as soon as the younger one can do it well.

If there is a job that would take one person an hour to do alone, it takes six people only ten minutes to do it together.

On the other hand, I realized one day that I could keep all of us occupied cleaning something or other all of the time, and it would be up to me to draw the line, since we don’t believe that God called us to spend our lives keeping our house perfect.  So beyond a basic cleanliness, I have had to let some things go.

We do, however, believe our primary calling is toward building relationships, including relationships with our children.  If something has to go, we don’t want it to be relationships.  And constantly moving everyone onward to the next thing isn’t always conducive to sturdy relationships.

I do not like unnecessary stuff, and that is an understatement.  I attempt to teach my children to judge between trash and treasure.  ”And where does trash belong?”

At any given time, our house is more likely to be tidy than clean.  If you come to our back door unexpectedly, you will most likely look through a pattern of fingerprints into our kitchen.  Fresh fingerprints only take about thirty seconds, if that.  Furthermore, I have observed that messiness in big, new houses looks comfortable, but messiness in small, old houses looks squalid.  So decluttering is an ongoing event at our house.  One of the many things I love about living in a small house, though, is that it doesn’t take very long to put it in order if we all go at it with a will.

If everyone who knows me well in real life voted, it would be unanimous.  Susanna would only be improved if she would just relax more often.

And that, my friends, is that, for better or for worse.

Q:  Can a local person come and visit you and Katie?  Maybe help out for a day?  I would love to be “helping hands” to you sometime!  ~S.

A:  Depending on the helper, we would love to have occasional help!

S.~  I know you and would love to have you come help out!  Your offer made me choke up, knowing your connection with Mom.

Q:  What is Katie doing throughout the day, as your life goes on as normal with all of the other children?

A:  Truth be told, I can’t define exactly what normal is at this point.  I seem to have lost track of that somewhere along the line.

But I can tell you about the several options for our Katie-bird.  Usually, I hold her.  Sometimes I will allow Laura or Jane to hold her for brief periods, and Daddy loves to hold her when he’s home.  When she grows uncomfortable with being held, she either goes down onto the play mat or into her Nap Nanny, depending on which room she will be in and what other activity is going on there.  The Nap Nanny keeps her safe in high-traffic locations.  It has been the ideal, soft, portable place for her, holding her in a reclining position to keep the stress off her spine and enabling her to observe her busy family or be near me while I am pumping or showering.

Q:   I noticed she is in a seat for a lot of her pictures…  is that just because she feels more secure there?  Is “floor time” something you haven’t really started yet, or does it make her uncomfortable?

A:  It is simply because I am nearly always the photographer.  In real life, when the camera is not a part of it, I am usually holding her or she is close to me.  I do all her care myself.

Q:   She seems to be blossoming so well… did God just especially bless her with her ability to bond and receive love, despite her past, or is there something specific you’re doing?

A:  Random thoughts~

There are some parents who do everything right, and their adopted child refuses to accept their love.

We were told that the more care that the adopted child needs from the primary caregiver, usually the mom, the faster the bonding process occurs.  Katie is totally dependent on me for her care, and I believe she can sense that I am reveling in this “duty.”  I love being a mama, and this task is like mothering on steroids.

So many of you have been praying with us for Katie.

She had an unusually loving baba, very demonstrative.

We think her Down syndrome may be helping her out in this area.  This is not a guarantee of happiness or lovingness, though, despite common misconceptions.  She did get a full measure of stubbornness, which many associate with the extra chromosome.  Joe just says she’ll fit right into this family.

However it is, we are just grateful for her sake that she is opening up and soaking in the love.  We have so many years to make up for.

Q:  How do you walk the line between giving her enough interaction and overstimulating her… and how do you get your younger kids to?  (I don’t know the ages of your little ones other than Verity.)

A:  You have described it well.  There is a line, and it started out being razor thin.  But it is widening rapidly.

Our children fall into a neatly organized pattern of Big Boys, Big Girls, Little Boys, and Little Girls.  Joseph, Daniel, and Joshua are 18, 16, and 14 years old, Laura and Jane are 12 1/2 and nearly 10, John Michael, Peter, James, and Stephen are 6, 5 & 5 (today!), and 3, Verity is 17 months.  (Katie holds the distinction of being a Big Girl and a Little Girl at the same time.)

Our children can be a noisy, active bunch, but they are not out of control.  When the noise and activity reach reasonable limits for the occasion, we bring it back down.  If it is appropriate noise and activity for the occasion, and I can tell Katie has reached her limits, chances are that I will also appreciate backing off to a quiet place for a little while.

Q: How did Katie feel about that kiss on the forehead from her sister?  Does she allow others to hold her yet?    Have those orphanage coping behaviors stopped or are near stopping?

A:  Mama is #1 with Katie, Daddy takes second place, and Laura is in third.  That was the first kiss Laura ventured, and Katie received it well, as you can see from the photographs.  Katie also loves to hear Joseph play the piano, and lights up for either Joseph or Daniel when they enter the room.

Jane is working on making friends with her new sister, who is two months younger than she is.  She discovered that Katie laughs when she whistles~

Q:  What do Katie and Verity think of each other?

A:  They went from simply tolerating one another’s presence to being curious about each other.

Q:  What medications is Katie on?

A:  The same thyroid medication that Verity receives each morning to control hypothyroidism, as well as various vitamin and mineral supplements.

Q:  Why do they refer to her as a “medical curiosity?”

A:  There aren’t many people around who are this tiny at this age, resulting from profound neglect from the time of birth.  Even Hitler didn’t have nine years to experiment on people this way.  She may never encounter any physicians who had prior experience with a child in a similar condition.  For this reason, we believe it is wiser for physicians to approach her with a good measure of humility, and to some extent, to expect to learn from her.

Q:  Are you continuing to see Katie make progress, and if so in what ways?

A:  Yes!  She is reaching out and touching things more readily now.  I rarely saw her do that until the past few days.  When I am sitting next to her, she will reach out and touch my arm and hand for short periods of time.  She’s doing that right now, right next to me in the Nap Nanny, with my arm draped along the edge.  Truly amazing considering that not long ago, she was agitated by any object within her reach, and would cry if she was unable to push it away.

Katie has a line.  She can cross the line, but we cannot.  She is always completely aware of where we are in relation to her line.  Her line is definitely moving inward and getting fuzzier.  This means she allows more close interaction from more of us.  She more readily makes eye contact with me, and takes more pleasure in being touched and held.  This morning I grasped one of her feet, then the other, saying, “Foot,” and did this over and over.  She took it all in the first few times, then decided she liked it, and began to smile.

She is learning the language of praise.  We could tell at the beginning that our praise communicated nothing to her whatsoever.  Now she responds by smiling.

It can be uncomfortable and even scary to be in a place of need.  It has always been a very sensitive place for me, and I am still wary of folks if I sense that they would resent what they have given, or see it as a burden to help me or our family, or use their gift in manipulative ways.  Katie has come carefully to that uneasy place with me, and I feel it as an honor that she would trust me with her needs.

She has cried since coming home, a few times because she wanted me, and a few times because she was bored and wanted a change in position or scenery.  She begins to grow agitated at the same noise and chaos level where I begin to grow agitated, so we make a good pair of family barometers.

She is gaining in strength and getting more active.  She occasionally attempts to sit more upright on my lap and in the Nap Nanny.

She is gaining in feeling secure in her environment.  She has demonstrated that she will scoot on her belly (army crawl) to get closer to something she is curious about or to get closer to me.

She is beginning to show some ability to regulate her emotions.

She has a small noise she makes with her voice that she thinks is speech.  She will go back and forth with us in a conversation IF she is in the mood for it.  She is in the mood for it more often all the time.

She does her orphanage behaviors mostly when she is bored or sleepy, and we are able to distract or re-direct her from some of them.

I began giving her the merest tastes of tasty foods a couple of days ago.  She has received that well, pulling her lower lip inward rather than pushing the food out with her tongue.  If she was refusing it, she would push it out, as she did to the food we attempted to give her in the hotel in her native country.

And of course, she is continuing to grow at a prodigious rate.  I weighed her on our digital scales the evening we arrived home, to get a baseline for comparison.  She weighed 12 pounds 8 ounces then.  Last night she was 13 pounds 12 ounces, a gain of 1 1/4 pounds in 5 days, and an overall gain of approximately 3 pounds and 3 ounces in 3 weeks.  We think that part of the reason she is more willing to sit upright is that she actually has the beginnings of a seat-cushion there now, which was entirely absent before.

Q:  In what ways can you tell she is nine years old, and not a baby?

A:  I have tried repeatedly to put words to this, but they haven’t yet formed in ways that make sense to those on the outside.  The difference immediately became obvious to our older children as soon as we brought her home and she spent some time alongside Verity.  Some of the differences have to do with her interests (she despises toys in a queenly sort of way), her mannerisms, her extraordinary curiosity about what we are doing (also known as nosiness), her physical differences, and her level of social intelligence.

That nosiness, by the way, may end up being her biggest motivator when she starts physical therapy.

Q:  What specific prayer needs do you have right now?

A:  That Katie would continue to thrive without getting sick.

That the bad cough Verity has had since we were in Katie’s country would go away and not come back.

And that our family would continue to adjust with aplomb to our new normal of life with our little fragile bird.

To everyone who has been so faithfully and diligently praying for us, thank you.  We have needed the help of God, and His help has been unfailing.  I want to tell you more about God’s provision for our needs in some future post.

P. S.  I just remembered that I promised to email someone my post full of tips for traveling to Katie’s native country.  If you remember who you are, could you pretty please forgive me and clue me in?

P. P. S.  As I publish this, there are still 7 1/2 hours left of the Hidden Treasures auction.  Not too late to get a few more bids in!  Thank you for stopping in to check it out!

The eyes.

Sad.

Empty.

Hopeless.

She has been waiting for nine years in the orphanage where Katie waited [#11 on Reece's Rainbow].

But she doesn’t know she’s waiting.

She doesn’t understand about God being the Father of the fatherless.

She doesn’t know that the first miracle has already happened; she is alive.

She doesn’t know about another miracle.  Her picture will be seen by unnumbered people, and many of us will pray for her.

She doesn’t know, like we do, that He is powerful enough to put His pure love into someone’s heart and tell them to go get her.

And powerful enough to make it happen.

Her photo is going onto our refrigerator, and we will pray for her until her family finds her.

Oh, little one, God is doing it.  He’s really doing it! 

This is because I can’t always think of the questions others may have, but I often don’t have to do much thinking in order to answer them.  I can readily choose some questions from among the comments and emails, place them into a draft, answer them, and add some photos.  So if you have good questions, please know that they are a huge help to me and don’t hesitate to include them in your comments.

I have a big Q & A coming up next, Deo volente.  For now, what has been dominating life lately…

Question:  I’m sure there are needs and challenges you are facing now that you’re home…how can I pray for you, friend?

Answer:  Thank you so much for asking!  I’ve been miserably sick all day—chills and aches and fever—and my milk supply is super low.  I’m drinking a lot and pumping extra to attempt to bring it back.  I wasn’t able to rest today, but I might tomorrow.  Could you pray that our tiny bird would NOT catch it?  Nobody else here has had this fever.

And thank you, friend, you are sweet to ask.

(So grateful that this illness waited until I was home!)

Laura making friends with tiny bird, Saturday morning~

All the little boys came to see her on Sunday morning while Verity was drinking her breakfast bottle.  Katie’s belly was already full, so she was happy and cuddling up to me, but she was not sure about all these bodies so close to her personal space.  She’s already growing out of this size twelve month sleeper!

Tonight I was burning up so much I made both little girls sweaty while giving Katie her suppertime tube feeding.

I have saved the best pictures for the big update Q & A post.

Okay, maybe just one, from this afternoon.  She may be “severely disabled,” and be something of a “medical curiosity,” but to us she is just our sweet Katie-bird, and we can still hardly believe it’s all over and we have her safely home where she belongs.  

Precious tiny jewel.

[Thank you again, Joseph, for your help. One of these years I'll catch on! Happy 18th birthday, oldest son of mine. You bless my life.]

…our bedroom looks like a somewhat organized tornado went through it [but the rest of the house is clean and peacefully tidy]…

…I have about three dozen emails to answer that stretch back a couple of weeks [I am sorry, my friends!  I'm making progress!]…

…and the few photos we’ve gotten are lame, really lame…

BUT…!

Every time Katie awakes and she sees me and her surroundings, a priceless expression of pure delight crosses her face, as if to say, “Ooooh, look!  It’s still here!  It’s real!”

She hasn’t cried at all since leaving the hospital.

We noticed a few times that she was so absorbed in watching the family that she was forgetting to do her little orphanage behaviors.

She looks and looks and soaks it all in.  She loves to watch the activity and doesn’t mind the noise!

Last night during Family Night, she kept drawing our attention with her twinkling and smiling and laughing, basking comfortably and happily in my arms next to Verity [who, by the way, eventually realized that I am the same mama, and that I still love her very much indeed].

We prayed almost every night since we officially committed to Katie near the end of January, “Please prepare Katerina’s heart to bond with us.”

It is so hard to communicate the essence of what is happening now.  I wasn’t emotional about bringing her into the States, but bringing her into her new home?  This is why we adopted this child–because we loved her so much we longed to give her our home and our family.  

We didn’t know that if God answered “Yes,” to our prayer, that we would feel so humbled and honored that this nine-year-old child would love being loved by us!  She could have responded in many ways!  But she clearly loves being home with us as much as we love having her home with us!   It is a wondrous thing to behold!

It almost seems as if she had open receptors for Joe as her Daddy and me as her Mama, this family as her family, this home as her home.  She doesn’t know what any of these concepts really mean, but she is clearly communicating that the holes inside her are filling up with what we have to offer.  (Joe said she reminds him of the game I used to play when I was a child of her age!)

So yes, it is a challenging transitional time, as it would be for anyone bringing a new little one with special needs home from the hospital, finding our new normal, knowing there are many medical appointments ahead of us, but in the midst of all this, we are watching a miracle happen.

Thank You, Lord Jesus, for the priceless gift of this child’s joy and affection.  May we never get over the wonder of what we are witnessing.

Now for the lame photos, and I promise that if you were here, you would tell me to sit back down with the children and not worry about photos and computers~

P. S.  I forgot two important facts in the last update.  After starting at ten pounds, nine ounces, when she left the hospital, Katie had reached thirteen pounds.  (Her goal weight for her current length is eighteen pounds, which is Verity’s exact weight–they are the same length.)   Also, she has been consistently sleeping all night from 9 or 9:30 pm until 6:30 am.

A:  Until just after lunchtime TODAY.  Thank the Lord!!!!!!  We are readier than ready to GO HOME!!!!!!

Q:  Will Katie need a G-tube?

A:  No, at this point there isn’t a compelling reason to give her a G-tube.  She will go home with an NG tube and plans to receive continuous overnight feeds via feeding pump, with three bolus feeds during the day.  This will allow her to get the calories she needs to grow, while still allowing her to feel a normal hunger cycle during the day.  We can work with that hunger cycle as we teach her to eat.

Q:  Is she taking anything by mouth?

A:  No.  She has only unpleasant associations with being bottle-fed, as the method used to feed her was traumatic rather than comforting.  You may remember reading that she was fed using a heavy glass beer bottle with a long teat stretched over the top with a huge hole cut in the end.  She was fed flat on her back, and the bottle contents were poured down her throat in a matter of a few minutes, forcing her to gulp rapidly to keep up with it.  She did not close her lips around the nipple or lift her hands to the bottle, and she often did not finish her bottles.  Her belly was constantly grossly distended due to both the food and the feeding method.

This method of feeding is actually a current endangerment to the lives of any of the other children in her former orphanage who are still being fed in this way, due to the risk of choking, vomiting, aspirating, and asphyxiation.  This is only one of the reasons we are praying that God will preserve the lives of the little ones whose families are still months away from getting them.  We would love to see the children who are most at risk admitted to the Japanese-run hospital where we took Katie, so they can begin the process of rehabilitation under medical supervision while they await their families.  This would take a miracle, but what else has God been doing??  He can do this, too!

Katie willingly allows me to brush her teeth and swab out her mouth, wash around her mouth, and apply chapstick, so she is not generally orally defensive.  But she gives such a strong negative reaction to anything resembling a bottle nipple that we have decided to drop that completely, and work toward using a spoon and cup.  We expect it to be at least a year before she is able to take all she needs by mouth.

Q:  How are you holding up?  How is your milk supply?

A:  I have felt so well taken care of!  Several friends in this region continued to check on me, bring me various necessary items, and bless me with the warmth of their company!  And several faraway friends sent thoughtful care packages, including things like striped socks and reading material.

My milk supply had dropped during travel, but it bounced back after I settled in here, so I’ll be taking home a cooler full of frozen milk.

Q:  How are all the children holding up without mom around?  Especially Verity?

A:  By all accounts, they are doing quite well.  But I think I will be spending a good deal of the foreseeable future directing operations from the couch, surrounded by small warm bodies.  *satisfied sigh*

Q:  What did you decide to do about allowing publicity?

A:  Today before we leave, there is a possibility that we may be interviewed by a local newspaper, and we’ll see how that goes before making any further decisions.

NAQ:  This may sound strange, but what a blessing it is that she has Down syndrome!

A:  Katie’s Down syndrome has clearly benefited her in at least one area.  If it wasn’t for her hypotonia, or low muscle tone, the fact that she spent so long lying in a bed would most likely have caused hypertonia, also known as spasticity, or muscle tightness.

Q:  Regarding her bone strength- is this something that can improve with proper nutrition or will this be a permanent challenge for her?

A:  Katie will be getting a DEXA scan at some time in the near future, and we hope that results in more specific answers.  For now, we have been told that the process of bone remineralization will be a lengthy process, most likely taking more than a year.

Most of the damaging effects of her severe malnutrition will take a long time to heal; for instance, the gum damage caused by her scurvy will most likely take about nine months to heal.  She was a long time getting to where she is, and the recovery process will not be a quick one.  But we are happy to give her all the time she needs.

Q:  Does she laugh?

A:  Yes indeed, she smiles and laughs!  She is amazingly interactive, considering her social deprivation.  We think some of this must be credited to her loving baba, some is doubtless an answer to so many specific prayers, and we attribute some to her “Down syndrome advantage.”

Q:  Will she ever learn to walk?

A:  Nobody knows that but God, and He isn’t telling!  The rest of us get to wait and see!

Q:  Is she understanding any English?

A:  We think she is making appropriate associations with the words Katie, Daddy, ouch, and all done.  I have a video to show you by and by that will demonstrate her response to the word Daddy.

Q:  Do the doctors know if Katie will be able to eventually be at a “normal” weight and height?  Clearly, she is unable to walk or talk; is this because of her Down syndrome or because of the lack of help and development opportunities that she received in her orphange?

A:  Nobody knows what Katie’s long-term prognosis is, but it is not likely that she will ever completely “catch up.”  We will work hard with her, not pushing her, but gently stretching her to go past where she is most comfortable.  She has taken many years to get to this point, and we don’t feel impatient to see her progress in her skills.  And we are trusting in the Lord to take her as far as He intends for her to go, just as we do with all our other children.  We are just so full of gratitude that she can now begin to relax, learn what love and family mean, and bond with us.

And no, Down syndrome did NOT cause Katie’s condition; profound neglect of her needs on every level since her birth caused Katie’s condition.  I have stated this before on this blog, but it always bears repeating.  What has been done to her and the other little children in her former orphanage who are severely damaged by neglect was totally preventable.  We know a little girl with Down syndrome of Katie’s age who plays the piano, reads, climbs trees, has an excellent vocabulary…

Q:  How has your overall experience been at CHOP?

A:  We appreciated the cautious and conservative approach they took with Katie.  They were excellent at prioritizing the testing, and put off everything that could wait for later, and focused on getting her safely through the refeeding danger.  There were a few nurses, a resident, and a nutritionist whom Katie and I loved.  We also appreciated being able to stay in the private PICU room at the price of a room on the regular floor of the hospital from Monday until today.

Bonus Q:  When did you have time to think about the sign for on her bed?

A:  When I was collecting Thanksgiving decorations for the house, I realized that it might be fun to have a few of them in the PICU with Katie, so I packed them away.

Q4U:  Guess which smart, funny, sweet, happy, curious, affectionate, opinionated little person invited herself to Date Night on Tuesday?

A:

Amy Rainey has been working very hard on this auction for over a month now.  What a blessing she is!

This time all the auction proceeds will help bring tiny Lina home to Brian and Stephanie Carpenter and their three other beautiful daughters, Sasha from Russia, Ellianna from Taiwan, and Avi from the Philippines!

This precious girl is only five years old and is tiny like Katie, and malnourished.  From the facts that we have, we know that Lina’s life is at risk while she stays where she is in Katie’s former orphanage, and she needs to come out of there and be properly cared for.  Brian and Stephanie are trusting in the Lord to keep her safe while they work very hard to bring her home, and so far, God has been expediting her adoption in amazing ways!

We are privileged to know the Carpenter family in real life, and have a lot of respect for their passion for the voiceless.  We are thankful to know firsthand that Lina will be going home to a family with so much love to give, and we can’t wait to meet her once she gets here!  What a day that will be!

Would you please check out the newest Hidden Treasures auction and help Liberate Lina?

[P. S.  A big Q & A post is coming up next.]

They told us she couldn’t grow.

The child grows.  We are watching her grow.  There is soft roundness where two weeks ago she had thin, dry skin stretched over her bones.  Her legs were in such a shocking state that we kept them covered during the travel home so nobody would misread the situation, and report us to the authorities for child neglect.  Even if they thought that “She’s nine-and-a-half” meant months and not years.

Every day, she shows that she is feeling more secure.

Every day, she is more interactive with her environment…

…has more strength…

…and stamina…

…and curiosity.

Finally, after the tumultuous events of the last couple of days, a quiet moment.  An opportunity to re-connect with my tiny girl.

I lift her gently from her bed, tubes and wires trailing from her fragile body, and position her carefully on my lap.

She arches her body, twists in my arms, crying as loudly as her weak body will allow, clicking the joints of her hips, chewing on her own wrist in her rage.

My hand lies softly over her.  She pushes it away.

My tears overflow my eyes and drip onto the blanket that encircles her.

She wants to get away from the scary intensity, back to what she knows.  She wants her bed.

My heart throbs with the grief of seeing her pathetic attempts to comfort herself.

She herself is all she had for so many years.  Hands, fingers, feet, mouth, head, hair.

My heart longs to reach through her shell.

She doesn’t need to protect herself, medicate herself, comfort herself.

The law has been satisfied.  The ransom has been paid.  All has been done.  It is finished.  She now belongs to us.  We are making sure her needs are being met.  She has no need to fear.  She has never been more secure than she is right now.  I am here; I will be here.

I yearn for her to trust that I am staying put, and that my presence means that her needs will be met in full.

But she has no idea of all these realities.  She doesn’t yet know that she needs what I have to give.

She turns from the abundance I have to offer her, and goes back to her own pitiful obsessive efforts to make everything all better.  Fingers fluttering in her peripheral vision, tapping the sides of her head, over and over again, all day long, sucking her own tongue, chewing on the corners of her lips, tap, tap, tap, flutter, flutter, flutter, flutter, chew, chew, chew, overdosing on food, self-medicating with chocolate, Starbucks, and retail therapy, eat, eat, eat, shop, shop, shop, escaping into mind-numbing entertainment, reassuring oneself with the contents of one’s financial portfolio, tap, tap, tap, flutter, flutter, flutter…

She doesn’t yet understand how to live as a child who is free, safe, and loved.

I expected steps forward and steps backward.  I know that she will not be stuck here forever.  But it is hard to see.  It is heartbreaking to see, heartbreaking to know the reasons why.

And my heart breaks for her all over again.

Monday night, the 21st

She has figured out the routine.  She knows when someone approaches her if they like and value her or if they are just awkwardly gawking at what they consider a freakish curiosity.  Interestingly, she and I agree in our assessments, but my outward reactions are more civilized than hers.

She knows what the alcohol on the heel means, and responds appropriately, as she does to the electrocardiogram stickers, the diaper changes, and the approach of needles.

She is braced for pain, and doesn’t understand that it is necessary to accomplish a much greater good in her life.  The greatest good that has come into her life thus far.  This pain will not harm her; it is a good that will free her to grow and gain in strength and skills.

But she doesn’t know this, and resists it with every bone in her body, her cry growing louder each day as she gains energy.

She doesn’t have much energy left over for other interactions.

Tuesday night, the 22nd

She has been increasingly fussy due to the, uh, the deleterious digestive effects of her formula.  They start her on Colace.  I think, and eventually say–we didn’t have this problem last week.  Breastmilk works better.  She can tolerate a bolus of 5 cc’s of breastmilk if she can tolerate a bolus of 7.6 cc’s of Colace.

She is hyper-aware.  She doesn’t miss a thing.  She is having trouble falling and staying asleep, afraid of the results of a perceived loss of control.

Wednesday night, the 23rd

She has received a PICC line.  No more pain for Katie.  But she doesn’t realize this yet, and she fusses all day.  She definitely does not approve of the no-no, the wrap that protects her PICC line site and keeps her from messing with it.

She lifts it up stiffly and looks at it over and over…

I. do. not. approve. of. this. arrangement.

The Colace still hasn’t kicked in.  She is still uncomfortable.  Just cranky and uncomfortable all over.

She doesn’t sleep a wink all night long, and cries loudly at regular intervals, compulsively chewing on her wrist.  Sometimes she forgets about the no-no on her right arm, and bops herself in the face with it, trying to get her wrist to her teeth.  That left wrist is putting in overtime.

Every time, I gently draw her hand away and wipe her wrist dry.

Thursday night, the 24th 

This morning she sees the rest of her new family.  It is pretty much unanimous–she is tinier than the photos had led them to believe.

[I miss this Verity-cake something fierce, and a few hours was not enough to get my fill.]

Katie takes them all in, delighting Laura and Jane’s hearts by warming up to them right away and making her silly sniff-face.

“We’re your big sisters, Katerina!” 

She remembers Daddy and rolls toward him, giggling with happiness.

Today, Katie does much less fussing.  She finally begins to relax.  There has been only comfort for many hours now.  No pain.

She feels safe enough and strong enough to roll about and begin to explore her space.

Toward evening, she begins to show signs of boredom, and I hunt down a few more toy options.

She is beginning to feel the need for my presence, but at the same time she fears the intensity, fears the unknown, fears her loss of control.  She thinks she knows what she needs most, and she thinks that her pathetic little orphanage habits will fulfill those needs.  She pushes my hand away and flutters her tiny fingers softly at her head.  Just a little more, and I will feel better…

Yesterday and today, she tolerates being held on my lap, waiting, for about five minutes before she melts down.

Friday night, the 25th

Oh the joy–she fusses if I must go away from her bedside.

This morning, when the doctors make their rounds, and I leave her side to stand in the doorway, she keeps her eyes on me and cries loudly.  One of the doctors queries in surprise, “Is that her?”  The day we picked her up from the orphanage, her cry sounded like a little kitten’s mew.

Today she tolerates being held for twenty minutes before she begins to fuss.

Tonight she falls asleep with my face hovering next to her cheek, my breath falling on her face, her hands resting quietly.

Saturday evening, the 26th

I have spent every possible hour this week sitting next to her bed, simply being present.  If she needed care that a mama can give, I have given it to her.  I take special joy in giving her a clean [size one!] diaper, knowing that never again will she lie wet and dirty for hours, waiting for her daily diaper change.  If there has been pain this week, it was administered by another hand, and my face was there for her to look to for reassurance.  She has gradually tolerated more and more comforting from me throughout the week.

She is still wary of my hand, and still automatically pushes it away as soon as she deems it threatening her comfortable space.  She always knows exactly where it is.

[Just look at the beautiful roundness!  She is now 5 1/2 kg!]

On this morning, Katie relaxes when I brush her teeth and wash her hair.   She smiles and laughs when I give her a dry diaper, bathe her and dress her in a clean gown.

She sits quietly for thirty minutes before she begins to fuss for her bed.

This afternoon Katie and I receive some very welcome company.  I lift her gently from her bed, tubes and wires trailing from her fragile body, and position her carefully on my lap.

After two peaceful hours, it is past my pumping time, and I lay her back in her bed.

It is for freedom that Christ has set us free.

She will get there.

Someday she will come to me when she is distressed instead of turning to her own pathetic devices.

Someday she will know how to live as a child who is free, safe, and loved.

Due to the sporadic nature of the internet connection in Katie’s hospital room as well as Susanna’s need to stay near Katie during her waking hours (Katie’s sleeping 4-6 hours out of 24), it has been impossible for her to reply by email to your generous offers of support.  What little time Susanna does have at the computer (if it happens to be connected to the internet at those times) has been used to update the blog.

Thank you to those of you who have donated to Katie’s care fund–until it becomes possible to send you a real thank you note, please know that we are very grateful for what you have shared!

Thank you to those of you who have offered to help in any way–we are grateful for your willingness to serve!

Thank you for continuing your encouragement of Susanna.

Would you please consider calling her on her cell phone–it has a consistent signal and can be carried to Katie’s bedside.  If you call and she is unable to answer, she will call you back.  Click the “Email Us” link on the right side of the blog or send an email to susanna@theblessingofverity.com and ask for Susanna’s cell phone number–one of us at home will be happy to provide it for you.  She would love to hear from you and it would really minister to her.

Thanks,

Joe

PS. Our family had such an enjoyable Thanksgiving Day thanks to the Boroughs family who hosted us in their home for a delicious Thanksgiving dinner, Amy Peterson who stayed with Katie while Susanna was gone, and many ladies from Trish Jamison’s church who supplied us with an array of excellent desserts!  Thank you, Boroughs, we loved meeting you!

Thank You for the pure love by which You have redeemed her life.

Thank You for the preciousness of this person who is made in Your image.

Thank You for breaking our hearts with the truth of what was happening to Katie and all the other unwanted, voiceless, powerless ones.

Thank You for giving us a fierce love for her and telling us to go get her.

Thank You for proving Yourself to be who You claim to be.  Mighty, miracle-working God, Father of the Fatherless.

Thank You for providing the required ransom for Katerina’s life.

For giving our family favor in the eyes of so many authorities.

Thank You for every dear one who sacrificed something to help bring our Katie-bird home.

Thank You for sending her a special baba to love her while she waited for us.

Thank You for designing her with so many sweet spots to kiss.

Thank You that she lets her mama kiss them.

Thank You for preparing us to know how to help her with her special needs.

Thank You for her alertness and spunk.

Thank You that she can now relax those survival skills and learn to look to a mama and daddy for what she needs.

Thank You for the energy she is gaining and the progress she is already making.  For the contours that are appearing on her arms and legs.

Thank you for not allowing this rare and precious jewel to be lost.

Thank You most of all for the mercy You have shown to Katie and to our family.

Lord, this is Your doing, and it is marvelous in our eyes.

Thank You.

If the current internet access holds until tomorrow afternoon, I hope to catch up then on all the waiting emails!

Katie has gone from 5 to 20 mLs/hour of food continuously through her NG tube since Sunday, with the plan to increase by 5 mLs/hour per day until she reaches 45 mLs/hour.  Today she reached 25 mLs/hour, and all her labwork shows that she is handling the increase very well so far.

Some of you may be interested to know that her nutritionists are estimating that she was receiving about 600 calories per day on the diet that the orphanage was giving her, and it was severely deficient in many vital nutrients.  For instance, her gums are swollen, inflamed and bleeding due to a serious lack of vitamin C in her diet, and she is currently receiving doses of ascorbic acid three times a day through her NG tube.

When she reaches 30 mLs/hour, they will be adding 5 mLs of my milk every hour as an injection via syringe into her NG tube.  This injection of food into a feeding tube using a syringe is also known as a bolus feed.  This is how we fed Katie last week, and how we fed Verity last year during the weeks she had an NG tube.

Tomorrow, there will be an interruption to Katie’s progression toward more calories.  After midnight, she will receive only IV fluids until her PICC line is placed sometime during the day on Wednesday.  This is a procedure that will require her to be under anesthesia.

In order to enable the doctors to keep close watch over her electrolytes and blood sugar during this crucial time, as well as begin to rule out a long list of possible health issues, Katie has needed to have so many pricks and blood draws that she is quite speckled and bruised.  Her list of necessary blood work is so long, and her available blood supply so small, that this procedure will go on for some time to come.  The PICC line will provide comparatively safe access to her blood without traumatizing her every time.

A long succession of specialists have come to examine our rare treasure over the past three days.  The highlights I can think of right now~

Katie’s heart is perfectly normal.  Now is the time to tell you that we were aware that there was a possibility that she would need open heart surgery, so we are thankful to learn that her heart was better than her official medical report stated, and not worse.  This also reveals to us what we suspected–the unlikelihood that she was actually examined by a cardiologist annually or received an echo as her medical report claimed was the case.

Her bones are so porous due to malnutrition that they are like the bones of a little old lady with osteoporosis.  Her spine shows that she has had multiple compression fractures due to improper handling of her fragile bones.

Not surprisingly, during this hospitalization, Katie has regressed in her attachment process.  She was very cranky during all her waking hours on Tuesday.  I have so much more to write about this, but, uh, yep–it will have to wait as well.  Katie just needed her whole bed changed, I haven’t slept yet tonight, I need to put away the milk from the last pumping, wash bottles and pump parts, get myself ready for bed, it’s past 1:30 am, and 4 am is coming soon!  And she is beginning to fuss again.  As one of my new friends recently said, “This is the hardest work I’ve ever loved!”

That’s all I can think of that should be in this initial update, except to ask for prayer for all of us right now.  This tough time is temporary, and YES!!!  It is worth every difficulty!!!!  And we appreciate your prayers more than I can adequately say.  If I try to verbalize it, it comes out in tears instead of words.

My prayers these days are simple.  “Help!”

I am determined that my next blog post will be a joyful one.  But you are also welcome to put your questions into emails and comments for an upcoming Q & A.

Thank you, friends.  Bless you.

“He shall call upon me, and I will answer him; I will be with him in trouble…”

To sum up in simple terms…

They’re starting her out on a very small amount of higher-calorie food (significantly higher than breastmilk, so I’m back to pumping for the future) through her NG tube, with IV fluids keeping her hydrated.

At regular intervals, the amount of food is increased and IV fluids proportionately decreased.

As the amount of higher-calorie food is increased, her risk of developing re-feeding syndrome will also grow.  So she is being closely monitored to watch for any signs that she is trending in the wrong direction.

The head doctor here has said that the next few days will be the most critical.  We are eager for her to get past this critical point, and to be able to receive my milk again.

It is wonderful to know that so, so many people are praying for her.  Thank you for doing this work on her behalf.

A couple of you have asked for her address, so until Joseph can put it over there on the sidebar for me, it’s right here.  [When I asked the nurse for the correct address, she said that pretty much the only gifts not allowed in here with Katie are flowers or plants.]

Katerina Hope Musser
c/o Children’s Hospital of Philadelphia
34th St. and Civic Center Blvd.
Philadelphia, PA 19104-4399

But I want you all to know how God has been answering your prayers for our girl!

Our trip home went smoothly, with the help of many kind airline personnel along the way.

Katie handled the travel beautifully, with very little fussing.  The only part she really yelled and hollered about was having her diaper changed on the hard plastic pull-down changing “table” in the restroom on the airplane while there was turbulence.

Thank you to every one of you who have been praying for her during this very stressful week.

She’s an American citizen now.

She was admitted to critical care here in CHOP and is right now falling asleep under several warm blankets.

Best news of all?

In only four days with an NG tube, getting mama’s milk, she now weighs more than she ever did in her life before.  She began the week at 4.8 kilograms, and is now 5.1 kilograms.

Nurse Adam Boroughs keeping an eye on Katie’s vital signs during the flight~

Katie is a survivor.

Amy Peterson, nurse at CHOP, friend of the Boroughs, and adoptive mom, met us at the airport and drove us to CHOP.

Dr. Susan Friedman, Katie’s CHOPADOPT doctor, also met us at the airport with a big hug.  She didn’t sleep at all last night, waiting through the flight with us.  She has gone way above the line of duty and done a super job of coordinating every detail of Katie’s care plan.

<photo removed>

She brought some news that I cannot yet share publicly.  But I want you to know this much, friends.

<photo removed>

When you pray according to the known will of God, you can always pray boldly, with full hope and confidence.

Please keep praying for the little ones with special needs we left behind.  God has been moving for them.

God is still doing miracles.

Is that all?

Is that all we had to do?  All we had to give up?  All we had to pay?

It was not enough.

Monday

We woke at 3:30 am to get ready for our trip to Katie’s city with Team Two–our attorney’s cousin as facilitator, and her uncle as driver.

When we arrived at the orphanage, we were taken directly up to the top floor, Katie’s floor, to wait for her baba to bring her to us.  As soon as my eyes met the baba’s eyes, and we both began to weep, I realized that this visit needed to be for Baba Donka.  I thanked this special woman for what she has done for our daughter for the past couple of years.  She did all that I asked her to in August, including adding the name Katie to the end of her birth name.  Katie’s tolerance for being moved and touched has improved enormously during the past three months.  Enormously.

Katie’s typical posture when she is picked up is to put her arms above her head.  Despite how it appears, she wasn’t reaching for me in the photographs.  We do think she recognized me from August.  In any case, she is a very alert little person, and does not miss much that happens within her range of vision.

Baba Donka had crocheted little booties for Katie, and dressed her in the little pink sweater she had bought for her.  She had many final kisses and loving words for Katie.

We parted with one long, tight hug and promises on my part to send her pictures of Katie as she grows in her new family.

In contrast to the car ride Katie took in August to have her visa photo taken, she settled comfortably into her car seat, and proceeded to amaze us by smiling and laughing for most of the long trip to her capital city.

We went directly from the orphanage to a crowded police station in the capital city for Katie’s passport photo, and then to our hotel, the same hotel where I stayed for one night in August.  Remember the courteous waiter with semi-broken English (“Here is delicious bread for you,”) whom I had misunderstood and failed to tip?  Yes, that hotel, famous among our attorney’s adoptive families for its very helpful staff and delectable food.

We could hardly believe how wonderfully Katie tolerated all this activity, and how little fussing she did.  We settled into our hotel room, ready to relax with her for the next few days.  We didn’t have any further appointments until Thursday morning.

When I hit the Publish button on Monday’s gotcha post, it was time to feed Katie her supper.  The orphanage had sent two bottles with her, both typical nine-ounce plastic baby bottles rather than the heavy glass beer bottles, but with a huge hole cut in the nipple, just as she had been accustomed to.

The bottles contained her next two meals, which she drank during the trip at 10:30 am and 1:30 pm.  She didn’t completely finish either bottle, but we already knew about this habit of hers and were not alarmed.

But now we had come to the first bottle made by the hotel staff, and Katie refused to have anything to do with it, pushing it away, turning her head, and making sure that any drips which reached her mouth did not enter there.  Well, I thought, surely she will be hungry enough at her 8:30 pm feeding to help her overcome her resistance.  Again she refused every approach of that bottle.  I set it aside for later, thinking that I could offer it in the night if she were to waken.

Tuesday

I woke at 3:13 am to the crooning sound she makes when putting herself to sleep, and I realized that her diaper was messy for the fourth time since we had reached the hotel room.  I made her comfortable, and was concerned at the signs of dehydration that I was seeing, including thick, sticky saliva, very dry, cracked lips, and a sunken fontanel.  [No, her fontanel has never closed.] 

She again refused even a drop of the bottle, although her system was completely empty by that point.  I realized that the situation was only going in one direction, and woke Joe.   The child has no reserves.  It was clear to us that she needed intervention without delay.  We packed up some necessaries and asked for prayer.

Our attorney gave us the name of a nearby hospital, but after the cab driver had dropped us off and driven away, we learned that the doors were locked.  Our ringing and knocking produced a very sleepy and puzzled gentleman who allowed us to enter what seemed to be a darkened and deserted building.  ”Does anyone here speak English?” we asked.  His answer was clearly negative.  He pointed us to the delivery ward, and we took the elevator.  The delivery ward seemed to be deserted except for four newborns who were unattended and screaming vociferously.  By and by a very groggy woman came padding out, only to tell us, “No doctor.  No English.”

At that point, I remembered that our friend Sasha Bliss had pointed out an enormous building as they drove us about their city.  She informed me that it was a hospital run by the Japanese, and that they take their own children to that hospital clinic when they are sick.  She further mentioned that they are always meticulously cared for.  I couldn’t remember the name she had told me, but our facilitator did.  The groggy woman called for a taxi, and we sped along to the second hospital to ask for a naso-gastric tube.

This time there was an emergency room and a kind ER nurse who could speak some English and was very willing to interpret for us.

Imagine for a moment that you were in their position.  Imagine having a couple who does not speak your language show up in the wee hours, carrying a skeletal child the size of a toddler that they are claiming is nine years old, and asking over and over again, with gestures, for a naso-gastric tube.  We laugh about it now.

We spent no little time convincing someone [the head nurse?  the ER doctor?] that no, we did not need to travel to a third hospital to see a neurologic specialist because this was not about Down syndrome, it was about a severely malnourished child who was dehydrated, refusing to eat, and needed a naso-gastric tube.  Somewhere during this conversation, my face grew warm and my tears flowed.  But she relented, called the third hospital back to let them know that we would not be coming, and sent us up to Pediatrics.

I immediately trusted the pediatrician who was on call.  I could see that she was competent and trustworthy.

We hadn’t been in Pediatrics long before it began to dawn on us why God had timed this incident to arrive before Adam did.

Katie, all 29 inches and 10 pounds 9 ounces of her emaciated nine-year-old little self, just spent a day under the care of the Head of Pediatrics in the largest and most famous hospital in Katie’s country.  If we had simply taken her home, none of the pediatricians or nurses who were shocked by her condition would know what they do now–about the other children in Katie’s former orphanage.

Wednesday

We were released by noon on this day, and had all afternoon and evening to settle back in to our hotel room, figure out Katie’s feeding plan, and enjoy getting to know Adam Boroughs a little better.  More on Adam later in this post.

By the time Katie was released, a day and a half after she began to receive IV fluids, we realized that she had been dehydrated when we picked her up from the orphanage.  This knowledge, as well as many other things we have learned along the way, will have implications for other very malnourished children who will be leaving this orphanage with their families in months to come.

When our waiter [the very courteous, slim young gentleman with glasses, for those of you who have stayed here yourselves] brought Joe’s, Adam’s, and my dinner up to our room last night, he asked if our baby was doing well.  We asked him if he’d like to come in and see our baby, so he did, telling us that he had already seen her on Facebook.  [He also said he had worked in America for a while, and wants to go back again.]  And we made sure he received the tip he’d earned back in August.

Thursday

Today we left the hotel around 10:30 am with our facilitator to go to the Polyclinic appointment and US Embassy exit interview.  At the Polyclinic, Katie was very briefly seen by an ear, nose and throat specialist, ophthalmologist, and pediatrician.  The pediatrician mentioned that she was very malnourished, and also that he was from the same city Katie is from.  Our facilitator stayed behind to wait for some papers while we waited for her in the van.   When she returned, she said that the pediatrician had seen the date “2009″ on Katie’s paperwork, and mistakenly thought it was her birth year.  The whole time he was examining her, he thought she was a malnourished two year old.  Our facilitator made sure he heard that there were other children in similar condition in the baby house back in his home town.

Our facilitator (our attorney’s cousin, who has been a wonderful help to us this week, with many, many hours of work added to her usual duties) also told us that the US Embassy exit interview would be a long one.  We would arrive at 1 pm, be seen around 1:30, and not be able to leave until around 3 pm.  When we walked out at 2 pm, she said that it was the fastest exit interview she had ever seen, and she has been working for our attorney for many years.

We appeared before the vice-consul, which some of you may recall is the gentleman who unexpectedly challenged our paperwork in September.  Today he told us that our child is already looking better than her visa photo.  And moved us through quickly.

Thank You, Lord, for showing us Your love and power~

We had Tuesday and Wednesday “free,” but it was imperative for our adoption process for Katie to be at today’s appointments at the Polyclinic and US Embassy exit interview.  The whole hospital episode fit into that time slot perfectly.

The tests that were run on Katie during her hospital stay answered many vital questions about her medical status.  This information is immensely valuable as a baseline for her care during the remainder of our time here and in the future.  She is doing remarkably well, and we think she will surprise many specialists in the weeks and months ahead.

We also think that the hospital experience accelerated Katie’s progress toward looking to me for comfort.  She went very quickly from the atmosphere that was familiar to her for nearly ten years, to being in completely new surroundings with many strangers coming and going.  My face was the only somewhat familiar constant in her world for the past few days, and every time the strangers leaned over her to carry out their procedures, she would crane her neck around until she found my face.  I spent a lot of the time lying on her bed next to her, and over the course of both days, she gradually grew more relaxed, until now if I lie down next to her as she is going off to sleep, she curls up toward me and flings one foot over to touch me.  We think this is remarkable considering the state she was in three months ago.  Remember?  She liked to be in her bed.  She did not like to be touched or moved.  At all.

It’s been neat to see that Katie is also growing very relaxed with her daddy, and the fact that I’m a pumping mom means that he has more opportunity to take care of her than he otherwise might.

We were grateful that we were already at the hospital when Adam arrived, because in his jet-lagged state, he was able to know that Katie was being cared for while he caught a good nights’ sleep.

Before we left the hospital, the very helpful ER nurse who translated for us in the wee hours of Tuesday morning stepped onto the elevator with Joe and asked him how our daughter was doing.  Joe was grateful for the opportunity to thank him for the help he had given us, as he had melted away unnoticed in the confusion surrounding Katie’s admission.

The Head of Pediatrics at the hospital here in the capital city spent time at CHOP some years ago.  Did you get that?  She spent time at CHOP, where Katie is headed next.  She is now in touch with Dr. Friedman, Katie’s doctor at CHOP.  There is talk of setting supports in place for the other families who will be adopting very medically-fragile children from Katie’s orphanage.

We were told by several, uh, natives, that the hospital was very expensive.  Katie’s whole two-day hospital stay cost about $860 in a package rate.  Just one of the ultrasounds Katie received would cost more than that in the States.  And they waived a couple of extra fees and upgraded us to a private hospital room at no extra cost.

Katerina, 9 years~

After about one and one-half to two hours of crying…

…Katie decided to ignore the NG tube, and resigned herself to having her arms snuggled under her clothing to prevent her from pulling out her tube.

We were told she was 30 inches long, but it turns out she is only 29 inches long.  But then, we didn’t measure her hair.

Everyone at the hospital was extremely gentle and tender to Katie, and more than once we saw someone leave the room with emotion.  We were very impressed with the level of care she received.  We were also charmed by the whimsical paintings that lined the hallways.

The special WHO formula from France was supposed to arrive here at the hotel on Tuesday.  Current estimates now put its delivery at next Monday, missing us neatly, and leaving us with the “next best” option – my milk.  Katie has been receiving my milk through her NG tube since it was placed at noontime on Tuesday.  Katie is getting my milk.  My milk.

That I have any sort of milk supply is at this point nothing short of a miracle.  Due to one thing or another, I have been getting far less sleep and food than I should.  I will probably receive a mild scolding for finishing this blog post instead of sleeping this afternoon, ahem.  So this praise also serves as a prayer request.

The WHO formula will be picked up by missionaries David and Sasha Bliss, to be available for the next child in Katie’s condition to come through this city on their way home.

Our friends David and Sasha Bliss have displayed true servants’ hearts throughout this week, again laying aside their own plans in order to serve us in many ways, from bringing us edible food while we were at the hospital, to loaning us their cell phone, to running to the store for other items.  And since the converter for the breastpump burned out, it burns through batteries so fast that a set doesn’t last through one pumping session, and one of the hand pumps is now next to useless, we will take Sasha up on her offer to give us the old one she’s been hanging on to without knowing why.

We just may get to see our adoption attorney tomorrow when she drops off another adoptive family!  For many reasons, I felt like I could hardly bear to be right here in her city and not get to see her at all.  And you will remember that Joe had not met her at all.

Katie’s private nurse, Adam Boroughs, could not be more well suited for the needs of this situation if we had filled out an order form.  Not only is he sensitive and loving to Katie, he is medically perfectly qualified, we are learning a lot from him about adoption, he loves the Lord with all his heart, and is loads of fun to be with.  Katie feels safe with him, too.  See for yourself.

She is warming up to us more every day, snuggling up to us, accepting more and more touch, even kisses, with pleasure.  Clearly, God has kept Katie in the palm of His hand, preparing her to give and receive love, just as we and many others have been praying for her.

Via Skype, we got to witness the first reaction of our firstborn to seeing Katie in our arms on Monday.  He said, with emotion in his voice, “We really have her.  She’s really ours.”

And that sums up how we feel about this tiny rare treasure.

We are utterly enamored.

We can hardly believe we really have the enormous privilege of caring for this remarkable child.

You have heard it said that life is cheap.

Don’t you believe it for one second.

All the months of hard work, the piles and loads of documents, the painful lessons learned, the extra financial expenses, the painful loss of privacy, the loss of many hours of rest and sleep, the pain of being misjudged, the excruciating waiting times, the unnumbered intense spiritual battles with the accuser of the brethren, the heart-stopping drama that God decided to heap on thickly…

…the difficulties we know are still ahead of us…

…the cost.

Adoption should be hard.  We are glad it is hard.  And no matter how hard, how painful, how steep the cost…

It doesn’t come close to the value of the life of this one precious human being.

Waiting for the pediatrician like such a good little girl~

Back home from the speedy US Embassy exit interview, where cell phones and cameras were prohibited~

So sweet, little person~

Mmmmmmmmmmmm, croons Katie, chewing on the side of her lip, as is her habit when putting herself to sleep~

On Monday, she wouldn’t let us touch her legs or feet.  Today, I massaged them with soothing lotion, and she sighed and giggled with pleasure.

Not much is more beautiful to us in this world than the first pair of brown eyes in the Musser family.

Thank You, Lord, for the life of this child.