Sunday, July 27, 2014

Esty and the TLSO

I witnessed bravery this week.

Cool, unadulterated bravery.

Courage, in another word.

It was not in myself, no…I am so far from that, my friends. But I would venture a guess that you can guess on whose face I saw the brave look of infinitesimal courage.

Esty. You are so right.

This week, she had to have her TSLO fitted. For those of you who are clueless as I was, that's slang for a Thorasic/Lumbar/Sacral Orthotic. In short, it's a suffocatingly tight piece of plastic that clamshells our girl in an effort to hold her present spinal curve so it doesn't increase.

We had the mold made a good 7 weeks ago. Don't get me started on why we're waiting so long. Sometimes, you pick your battles not only with your teenager, but your medical community!

When we went back this past week, I had attempted to prepare her for what was coming. HOW do you prepare a child who barely understands our culture that we are now subjecting her to painful, hot, plastic torture and she has to stay in this device for TWENTY HOURS a day for the next 3-5 years!?!!?

Well, you simply cannot.

So we mentioned it in some happier terms…like the butterfly pattern she chose for it. "Won't that be fun to see how it looks?" I cringe as I try to make SOMETHING fun in all of this.

Thank God for iPads. At least she can play on that while we wait.

The orthotist brings this MASSIVE thing in and has her put on a stocking that covers her from neck to knees. Then he has her lie back and does measurements on her and then makes markings on the brace. He disappears. We hear sawing.

This is not her brace, but an example to illustrate.
The next time he appears, it's considerably shorter. (So thankful!) He pries it open and it swallows her whole.

She winces.

I cringe.

He does some looking and removes it and calls in his colleague. He shows him her curve. They exchange "mmmhmmms" and I hear, "yes, that is quite unusual."

I don't ask.

He turns to me and explains, "I need to cut this appointment short. I want to send you over for an immediate Xray in the brace to see if it's holding her in the appropriate places. We cannot afford to make any mistakes."

Baby girl needed to cath, but instead, we ran across the city to her hospital where we raced against the clock to be able to return in the orthotist's time window to have him complete the fitting.

This brace getting clamped onto her torso and running out the door and into the car and over to the hospital…it would all feel so…scary! It was supposed to be a 2 hour appointment and then we would go to the horse barn to get Jensi. (Esty takes comfort in knowing how the day will run.) Instead, after only 30-45 minutes, we were leaving and it was under a sense of duress.

She never complained. She never cried. No tears even welled up, well, except in MY eyes.
When I asked her in the van how she was doing, she replied, "I'm fine, but this thing…it's not too comfortable."


That's courage, my friends.

We get all the paperwork done and learn she has to stand with her chest pressing hard against the glass of the X ray. She cannot stand there alone, this brace throws her completely off and walking with her walker was a tremendous difficulty. (I saw her eyes flicker a bit when she realized how this may be changing things, and the lump in my throat was the size of the Goodyear blimp.) 

We ended up leaving the brace and after the orthotist had a look at the X-rays, he informed me he must trash this one and make a new one. I appreciate his attention to detail, but am so heavy hearted that our girl will now get her TLSO the day before we go on vacation. 


I praise God that she can have FOUR hours out of it daily. You can bet that those hours we will use wisely! We will swim, play at the ocean and snuggle in fresh pajamas after a bath.

I don't know why this particular medical thing bothered me so much other than it's going to have SUCH an impact on her daily comfort level. And she cannot even understand why. (I have shown her a straight spine and the X-ray above, but how much that makes sense to her, I do not know.)

When I picked her up to get her in the van (regular things she has been doing suddenly became stiff and impossible) I couldn't get over the sense that we had gotten her out of the orphanage only to encase her in plastic body cage (feet and ankles in similar braces) in a foreign land…and force feed her cheese. (okay not really, but the girl hates her cheese and she's TRYING to live in America!!!) I got her into her seat and ran around to the driver's side trying to pull my emotions back into my lap.

I didn't feel this way about her AFO's. (Ankle/foot orthotics) They helped stabilize her feet so she can walk! This...this feels like nasty punishment.

And the kicker? Because she is tethered (meaning her spinal cord is caught in scar tissue) the brace may not even help hold the curve at the present degree. All this, and it very well could get WORSE and still require the surgery we are trying so hard to avoid or at least postpone. We won't know. 

Here is my brave girl sitting in the Xray waiting room after failed attempts at cathing due to the monstrous TLSO and giggling because she had decorated this fairy and taken a picture of her walker and now "the fairy, she is walking!!" Giggle giggle giggle.

What?!?! I'm about to melt into piles of tears for my girl and she is enamored with the camera feature on the iPad. 
Some may call it immaturity, but I call her brave.

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Thursday, July 17, 2014

Esty's Friend Branch Needs a Family

Something happened on the way to the hospital yesterday.

Esty opened up.

She had me in tears in minutes.

As soon as we dropped her sister off, she began to chatter. She had purpose. Something had been on her mind.

Up to this point, she has only answered questions I have asked in effort to learn more about her past. 

Yesterday was different. She had something to say.

"Mommy, I have a friend at my orphanage," she began in Mandarin. (We still speak in Chinese about matters of the heart as it's still easier for her.)

My ears perked up. I turned off the music.

"Tell me about your friend," I answered.

"I'm so worried about my friend, Mommy. I don't know if he is okay or not." And she began to pour out her heart. "He is in a wheelchair like me. He was my friend. So nice. But his legs cannot bend. They are stuck in a bent position. He sleeps in a ball, with his feet tucked under him. I don't know if he is sick or not, Mommy. I don't know if he has a fever. I'm worried if he doesn't get adopted like me, he will die in China. The doctors we have here are so good. The orphanage had two doctors, but they didn't do much. They didn't help me when I was so sick."

I was speechless.

She continued.

"I want him to get a family. I want him to be able to go to good doctors. I am so worried, if he stays in China he will die."

I had tears at this point.

She proceeded to tell me how he was in 2 different foster families, but both families only had a mother. 

Sweet boy. He has never had a father figure.

Oh my heart.

I asked her his name but she said, "Oh but Mommy, if I tell you his name, you won't know him."

I told her that I could ask my friend to see if she could find him. Find out if he has been adopted. Find out if he is okay.

She couldn't believe it.

She asked me how this was possible. I recounted the story about seeing HER picture posted…people were looking for her family to find her. 

And we did.

She was on the edge of her seat.

And in between doctor appointments, I emailed my dear Annie. I used Pinyin to write out the boy's name. In order to find a particular orphan, you need their Chinese name and date of birth. Esty knew he was 9, but had no idea when his birthday was. I hoped for the best.

I knew which orphanage to search in, his Chinese name, approximate age and special need...I felt hopeful!

Within 24 hours, I had an email back from dear Annie.


I showed Esty his picture. "That's HIM!!!! Oh Mommy, that's is really him!!! Is he okay? Does he have a fever?" 

(Interesting to hear her worry about him having a fever. This was the key symptom she presented when she had that severe kidney infection that went septic and would have died if we didn't get her proper medical treatment. She is aware. She wants the best for her friend!)

Of course I had to answer that this information did not tell us whether or not he had a fever. But it did give us his birthday and he is now 10 years old.

He is on the Shared List. 

If you haven't adopted from China that means that any agency at all can request his file and do his adoption paperwork. He is not locked in with any particular agency.

I have his file. What a precious soul.

It amazes me: his file was prepared precisely one year ago.

I have goosebumps. Do you?

As I read his file I love what I read.

"All nurturers and kids like him very much."


"He hopes to have his family with dad and mom."

How much more awesome to know that my Esty vouches for his delightful personality!

So friends, let's share this precious boy we are calling "Branch." Let's find his family!!!

If you want to more about Branch, please contact me. He has the same special need as Esty: spina bifida with lower limb paralysis. He also appears to have club feet. What a treasure!!!

Someone PLEASE go get Branch and we will meet up with you!! Esty wants to know that her friend can live a better life, have a daddy and not die in China unloved!!

How's that for a cause?? :)

Love my dear daughter! Who better to advocate for the orphan than the former orphan who knows both sides of the coin?

Let's get Branch a family.

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Sunday, July 13, 2014

The First 6 Months with Esty

This is our Esty...6 months as a daughter and sister, loved.

But let's go back...

It was exactly 6 months ago today that we entered that Chinese orphanage in the early dawn January hours and were ushered into a huge, cold meeting room. We waited well over an hour for them to bring our new daughter into view.

We signed papers, we nervously hugged, always eyeing the doorway. Waiting.

And then that moment arrived when they actually wheeled her into our presence. "Here is your family!"

I remember the exchange of pleasantries and then the seemingly endless gifts.

They gifted her everything she would need to open her tea business in America. Seriously, some of the stuff I don't even know how to use! Their intent was that since she cannot attend school, cannot walk, this would be a possible line of work for her. However, I cannot get Esty to make tea for me. She wants nothing to do with the "art of making tea."

Why, I am not sure. She's not telling me yet. But I might guess.

This is a child who had been ill-treated in a foster family for 8 years. Left day in and day out in her bedroom to watch TV while the other children of the house attended school. 

A child who has the marks on her body of abuse.

A child who never felt wanted, loved and was never hugged.

A child who was punished by denial of food for days on end. 

This is a child who was for some reason returned to the orphanage after 8 years. A child who there sat in her wheelchair. A child still denied the privilege of going to school.

A child who was one of 6 who were wheelchair bound. She has told me tales of the others in the institution who would steal, lie and hit you when they were upset. 

A child who nearly died in our care that first week, due to an untreated kidney infection that went septic. If you want to read more about that go HERE.

This child is one whom they thought no one would want to adopt and did not even prepare her file for 5 years. This was her first picture taken, even though she had been in care since she was a 10 month old baby.

I find it an overwhelming sum up the past 6 months.

Truly, much of my silence has been that things have been flat out HARD. Older child adoption is not a cake walk. 

We do not adopt for us. We adopt out of obedience. Out of love. And it's not a fluffy man-made love, it's a holy love that comes from JESUS alone. Cuz I PROMISE YOU, I could never have done this.

It is love that takes her to and from appointments. When it's a level 3 snow emergency. When we've already driven that hour-long trip 4 times already that week. When I'm tired and do not feel like sitting in yet another doctor office.

It is love that deals with another fecal mess.

It is love that carries her in and out of the car through the long months of snow.

It is love that learns about urogential health and teaches her to self-catheterize.

It is love that daily follows her around with a bottle of water and encourages her to drink to flush her system.

It is love that teaches her to swallow the six pills she must each day. It is love that gets up every morning and sets them out and encourages her to really take them.

It is love that forgives her for hiding them in her pockets, under the rug or in between the couch cushions.

It is love that teaches her about hygiene and the critical part it plays in staying healthy. (When you have never been to school and you don't come from a clean-obsessed culture, it's totally acceptable to not wash your hands after using the restroom and completely fine to cut your apple on the floor.)

It is love that allows her to hang on me and monopolize my time for the early days home.

It is love that rocks her in a rocking chair like a baby and listens to her talk about her former life.

It is love that speaks Chinese with her and tries to bridge the world she knew with the world she has been thrust into.

It is love that forgives when she repeats orphanage behaviors like lying and stealing. Again. And again. And again.

It is love that believes she will become more than "that child in the wheelchair."

It is love that buys her a walker. And challenges her to use it.

It is love that buys her floral patterned quad canes and follows her around all day with them reminding her to walk. (She finds scooting on her bum far faster and easier, thank you very much!)

It is love that makes her slices of pizza without cheese.

It is love that encourages siblings to ease their jealous hearts and to see her as God sees her.

It is love that smiles and grace that covers us as people tell me that she must be "the easiest adoption ever" because all I ever post on Instagram and Facebook are the highlights. The victories. 

And I am quick to correct, "no, it is not all rainbows and puppy dogs. It is stinking hard work."

It is love that does these things. Not me. I am absolutely convinced there is not a bone in my body that would do the above things for someone else without the love of Jesus flowing through me.

And the hard truth is that even WITH that in me, I struggle. I struggle with wanting more "me time" more quiet, more sleep, etc.

Nothing in all my life has been as hard as the past six months of parenting these 7 children and trying to get Esty to a place of equilibrium.

There has been a spiritual battle waging against us. Against our minds. Against our marriage. Trying at all turns to tear us apart.

And we have fought it--hard. 

We have some battle scars from the past months, but we emerge brighter, stronger and more committed because Jesus is our Triumphant Victor!! He called us to this life, and He provides.

He provides friends and family who love ENDLESSLY. Praying endlessly.

He provides new avenues of rest--a solitary weekend away, art classes, date nights.

He provides His Spirit to gently show us how we need to change.

He gives me Truth in His word to hold on to. He helps change my complaining heart into one that praises Him for who He is, not based on anything circumstantial. 

This passage from Isaiah 49 recently helped me as I feel the weight of daily of housework, laundry, medical care and cooking for nine that are so endless and ongoing:

"He said to me, "You are my servant, Israel (Amy), and you will bring Me glory."
I replied, "But my work seems so useless! I have spent my strength for nothing and to no purpose.
Yet I leave it all in the Lord's hand; I will trust God for my reward."

This teaches me to keep on sweeping up Cheerios, making food, dishing out the prescriptions (15 across 7 kids), picking up discarded socks and allowing the next wave of messes to pile. Because I can leave it all in the Lord's hand. I trust Him for the result. Him for the reward.

and then I read on:

"And now The Lord speaks--the One who formed me in my mother's womb to be His servant, who commissioned me to bring Israel back to Him. The Lord has honored me, and my God has given me strength.
He says, "You will do more than restore the people of Israel to Me, I will make you a light to the Gentiles, and you will bring my salvation to the ends of the earth."

And I am amazed. I don't really know how that will be personalized to my life yet, but I understand the message, "You are doing more than just cleaning, you are raising up warriors for the kingdom."

And I take heart. It has not been an easy six months, but it has been a good one. And I am so very thankful for the front row seat I have to the amazing AMAZING miracles that God is doing in Esty's life:

Let's just look back:

*Her adoption was fully funded before we ever left for China.

*We got all our approvals in perfect timing to get her to proper medical care in the NICK of time so she did not die of blood poisoning. Literally one more week and she would have been dead.

* She is out of her wheelchair daily. In fact, she is only using her chair when we are away from home when we must go distances, say like at the zoo.

*She is loved and calls us "Mommy and Daddy" with ease. I love that.

*She daily wears AFO's (ankle/foot orthotics) to give her lower limbs support and is walking better and better with quad canes.

*She initiaties hugs, kisses and spontaneously tells me, "I love you, Mommy."

*She reminded ME this morning that she needed to take her meds!

*She self catheterizes every three hours BY HERSELF and sometimes without reminders!!

*She can still speak Chinese but gets along well in English. (A feat she thought was impossible when she first came home!)

*She got the news that she no longer has kidney reflux AT ALL (was at stage 4 on both sides!) due to the medicines and daily catheterizing.

*She got an IEP for the next year and a full ride scholarship to Sara's Garden!

*She has learned to tell the truth. Even when it means admitting she is wrong.

*She has learned to give forgiveness and seek it…and say the difficult words, "I'm sorry."

*She learned to propel a bicycle on her own last night! Tying her feet to the pedals with zip ties and using training wheels, she rode up and down on our driveway last night on a REAL BIKE!!!

*She has been awarded a full grant for a hand cycle from Athletes Helping Athletes. A bubble gum pink, custom built hand bike with 7 speeds is being built for her as we speak! Praying it comes in time for vacation!

*She has stopped her overt orphanage behaviors. Oh this brings me great relief!

*She has offered to pray at meals!

*She just now walked by me with her quad canes...without her AFO's on! Her body has gotten so strong in 6 months! When we met, she couldn't bear any weight at all.

*She loves to be held, responds incredibly well to praise and is learning to play a role in our family: she is attaching.

The change from 6 months ago, with us but still so scared, sick and tentative:

To now, loved, confident and having accomplished so much:

I praise God for the front row seat that the hard work earns me in her life. I am convinced that this is exactly where we all need to be.

My husband has encouraged me time and time again that God is doing something massive in me personally, as I serve. Tearing me down, to rebuild something beautiful in it's place. It is beyond my comprehension, but he sees it and has the faith for it, so I'm going with it! 

And so, we continue to move forward with the life we are called to, parenting these gifts from God. I  want to THANK each and every person who helped us financially to bring this dear daughter into our family. I can only daydream what the future may hold for our dear Esty. Thankful to God for orchestrating this adoption and changing her life!!!!

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