Orphans with Arthrogryposis

There are kids with Arthrogryposis all over the world who wait for a family to call their own. Every child should have a Mama and Papa to love them. Sadly many kids will never know the love of a family as they will live out their shortened lives in institutions. The children posted here are from Reecesrainbow.com If you can't adopt, you can donate to their grants on reecesrainbow.com Don't leave them to die in institutions.

Sunday, May 6, 2012

Our time with Alexis

The day we walked into Orphanage 39 in January of this year, it was freezing cold.  We were bundled up and snow was all over us.  I remember walking down the hallway, wondering how long it would be before we saw our daughter.  In fact, I didn’t see any kids. 

We met with the Director, the attorney, the social worker, and everyone else.  Finally, we could go meet our daughter. 

Down the long hallway, our footsteps echoing on the cold tile floor.

Turn right into the groupa door.  Make our way through the playroom, down the hall with the beautiful mural, past two bedrooms with 10 or so beds each, past a bathroom, into another little room, with a tv, and a table.

A table where four little girls were sitting around in wheelchairs, coloring and cutting with scissors and doing schoolwork. 

One of those was turned around- it was our daughter.  A beautiful, incredible, perfect little girl who is now in our home, laughing and talking in English and learning to crawl and do everything little six year old girls do. 

But one of those other little girls at the table- she’s the one that I’m here to talk about today.

Hi, I’m Renee. I blog over at http://butbygraceitcouldbeme.blogspot.com   Back in January and February of this year, we were in EE to adopt our amazing daughter, Emma Grace.  In the process of our adoption, God opened doors for us to meet around seventy other children, many of whom asked us to find them a family.

Alexis was one of them.  Except she didn’t just ask us to find her a family, she pleaded.  She cried.  She sobbed and begged and did everything she could to get us to promise that someone would come back for her.  But I digress…..


That day, in the groupa, meeting our Emma for the first time, I almost didn’t recognize her.  Our daughter looked really different than her picture that we had seen. 

But I immediately recognized Alexis.  How could I not?  She has eyes that are as expressive as any supermodel’s ever dreamed of being.  They were nearly always lit with this spark of enjoyment, of happiness, of joy.  Her expression that day was of curiosity.  She was subtle, watching us discreetly, trying not to stare, but clearly eager to observe this new phenomenon- strangers coming from America to adopt kids that Eastern Europe didn’t want- kids who couldn’t walk, kids whose arms and legs were twisted and frail, kids who society said were worthless. 

Alexis watched our whole first meeting.  She saw me kneel down before Emma’s wheelchair.  She saw us give Emma gifts.  She saw our tears and laughter and smiles that split our faces in half and left our jaw muscles aching and our cheeks quivering.  She saw the first moment when we lifted Emma from the wheelchair and sat her in our laps.  She watched as we caressed Emma’s hair, kissed her forehead, gently rubbed her tiny fingers.  She heard the facilitator ask if we were sure we wanted to adopt Emma, and as the facilitator translated to Emma that yes, we wanted her.  She heard the facilitator ask Emma if she wanted to be adopted by us, and Emma’s immediate “Da, a America a Mama ee Papa!!!”

And through my joyful tears, I saw Alexis’ face. 

In that second, those beautiful expressive dark eyes were filled with longing.  Deep, to the soul, longing.  Her mouth was slightly open as though she wanted to call out “me too, please, me too, I want a mama and a papa!”  She was leaning forward, hanging on every word.

And I caught her eyes.  She blinked and I saw all that hope, that longing, disappear, replaced by a look of resignation.  She looked to the girl on her right, one I call “Cassie” on my blog, also another older girl in a wheelchair, and shrugged.  Cassie shook her head side to side a bit, as though saying “you knew they wouldn’t come for you, we’re too old, too broken”. 

I vaguely remember the psychologist encouraging us to come to her office to finish our meeting.  I know I caught her eyes as the facilitator was translating, and knew she had seen Alexis and Cassie’s nonverbal exchange.  Sure enough, the facilitator translated to us that the psychologist was worried about the other girls, the ones NOT chosen. 

Like Alexis.


I didn’t understand it then.  Over the next couple of weeks, we got to know Alexis really well.  She would come in and play with us during the breaks between classes.  She’s hilarious- a real fun loving, entertaining young lady.  She’s a jokester, and often participated with the other kids in the wheelchair races and games in the hallways.  She has arthrogryposis, and it may impair her ability to walk, but it sure doesn’t impair her ability to have fun and enjoy life. 

She would hook her hands, twisted at the wrists, over the back of Tyler’s wheelchair, and Tyler would get their chairs going super fast down the hallway.  He would pull her all over and they would laugh and have the best time.  Sometimes, she and another little girl, who I called “Lindsey” on my blog, would hang on to the back of the boys’ wheelchairs while they went very fast in the hallways.  The boys would stop and sling the girls in their chairs to slide down the hall.  They were just everyday, normal kids, having a good time.
Alexis always had us laughing- she could be counted on to mimic our English greetings with a huge smile.  She was definitely the comedienne of the bunch!  When she wanted to get our attention, she would sing loudly, even rapping, eager to make eye contact and get her usual hug from us.  She positively radiated joy, happy for the attention.  She was tender with little Patti, who looked up to her for guidance and care.  Alexis is well loved by the staff and other kids, but she craved the love of parents and family.


One day, when we had been there several weeks, we found out something that literally sent us home in tears. 

The closer it came for time for us to go to court, the more anxious everyone seemed to get.  Finally, the big day came, and we were pronounced the forever mama and papa of Emma Grace.  We carried a cake and lots of sweets and fruit and new DVDs to the groupa, eager to share our celebration.

But Alexis, like some of the others, seemed only somewhat excited about the treats.  Instead, she looked anxious.  Quickly, in her machine-gun style rapid speech, she interrogated our facilitator, who shook her head side to side and responded.  We questioned what was said, and our facilitator responded that the kids and staff wanted to know how much longer it would be before we left and took Emma with us.

They wanted a countdown of how much time they had left with their friend, and with the resident “Mama and Papa”- us. 


I still didn’t get it, not really.  Then came the day we were set to leave.  We brought in tons of gifts, individual gift bags for each girl with all kinds of special things- jewelry and toys and books and candy and personal items and socks and hair clips and purses.  Dollhouse furniture and more movies and puzzles and games and cakes and treats galore. 

And the girls were happy, but also, they were sad.  Somber almost.  Anxious. 

Some of the kids were calmer than others.  The ones who were there as “boarders,” who had families that lived nearby that came to visit, they were relaxed.  A bit sad to see Emma go of course, but not overly emotional.

But a few of the girls, not all of whom were available for international adoption, they were upset.

Alexis was one of those girls.

See, a year ago, our facilitator had appeared to do an adoption there at Orphanage 39.  There had only been four adoptions before ours in the past fifteen years at this orphanage.  It was a rare, rare thing.  No one in that EE country wanted to adopt an orphan with severe physical special needs.  They knew what their lives would consist of from the moment they were old enough to understand that they were special needs orphans- a life in an orphanage, and if they never learned to walk well, followed by transfer to an adult mental institution.  Because in Eastern Europe, crippled or twisted or missing limbs is seen as proof that your brain is defective and that you will never be able to live a normal life. 

It just is what it is.  There’s just no hope. 

But then, last year, in the spring, a family came to EE to adopt a little boy.  And when they got there, they found out he had an older brother, who just happened to have been transferred to Orphanage 39.  So he left, but before he did, the facilitator was able to meet with the Director and find out which children were available for international adoption.  The Director went around and asked those children which ones wanted a family, and wanted to be adopted. 

Emma was the first one to raise her hand.  Alexis was seconds behind her.  Patti and Erin did as well.

So one year ago, the facilitator took the pictures of more than a half dozen of the waiting orphans at Orphanage 39, all older children with spina bifida, cerebral palsy, or arthrogryposis.  She knew the likelihood wasn’t high that potential families would jump to adopt older kids.  Most adoptive families want young, cuddly, cute babies and toddlers.  But she followed her heart and listed them, knowing she was literally the only hope that they would have to find families. 

Alexis saw us come in, and like some of the others who had their pictures made the year before, suddenly saw that their perception of the world was wrong.  Suddenly, when we came through the door, when we chose and accepted a child who could not walk, there was hope for ALL of the orphans waiting in Orphanage 39.

As long as we were there, there was hope.  As long as Alexis could see us, she could believe that maybe, just maybe, someone would look beyond her twisted and shriveled feet and hands, her stiff elbows and knees, to see her precious heart, her intelligent mind, her witty sense of humor, her never-ending ability to love.  While we were there, I believe she could dream that someday, a Mama and Papa would want her.

No wonder she panicked when she realized we were soon to leave forever, taking Emma, and leaving all the other kids behind.


The last day at Orphanage 39 was one of the hardest days of my life.  Alexis clung closely to Emma.  She was gentle and encouraging and funny and sweet, as always.  We met with the whole groupa, took some pictures, shared our gifts, laughed and talked.  The girls all gave Emma instructions to be nice and work hard and obey us and cheered her on about going to America on the plane with her new Mama and Papa. 

Then one girl started crying. 

And Alexis fell apart. 

We were leaving, walking out to the hallway, and Alexis was sobbing, heartwrenching, from the gut sobs.  Her face was soaked, she was clutching desperately at the hands of our facilitator, grasping at her dress, pleading in the fastest Russian I’ve ever heard, her face broken and full of despair and longing and hopelessness.  They went back and forth for what seemed like forever, before Alexis let go with a sob, and buried her head in her arms sobbing.  

Our facilitator was shaken- she was crying as we walked out the door.  We begged her to tell us what Alexis said, and she couldn’t get it out at first. When she did, we sobbed too.

Alexis was begging her for a family.  Begging us and her to find her mama and papa, to send them back.  Pleading to understand why Emma was chosen and she was not, did they not both have their pictures taken the same day?  Has she not been waiting too?  Where was her family?  Where was her happy future?

The facilitator could make no promises.  She could not say “sure, your family will come” because she knew the hard cold truth- Alexis had been listed for a solid year and no one had any interest in her.  The likelihood of her getting a family was very very low. 

I guess Alexis saw it in the facilitator’s face, that hopelessness- their eyes glued to each other’s, how could she not? 

And that last moment, when Alexis let go and flung her head into her arms, she told the facilitator she knew that she wouldn’t be back.  She knew no one would ever come for her, she was too broken, too old, no one would want her.  She accepted the fate that she believed life had dealt her- a broken body, and a lifetime of rejection and pain, both physical and emotional.  Rejected by her birth family, warehoused in an orphanage out of sight by the government, she truly believed no one would ever want her.


Twelve years old, and believes she’s worthless. 

Twelve years old, and believes her twisted hands and feet make her deserving of rejection and abandonment.

Twelve years old, and she didn’t have anyone to call her own.

It’s just wrong.


So we hit the blog.  From our tiny, dark seventh floor apartment in EE, we begged someone to hear Alexis’ story, to look in her pictures and see if they recognized their daughter.

And a family, one I knew quite well, stepped forward, almost immediately.  They were in progress when we were.  In fact, they’re in the middle of their adoption of their son from the same EE country right now, finishing up their first adoption for this year. And within just the next few weeks, their paperwork will be going over to reserve their spot to claim Alexis. 

They’re trying to hurry.  Why?  Well, it’s not because they have tons of money to fling around and just love flying around the world twenty times a year, that’s for sure.

No, they’re trying to get there as quickly as possible, for Alexis. 

Because they know the three older teens that were listed, all three photographed by the facilitator for the first time THIS year (not last year when Alexis was listed) will have families arrive this summer to claim them.

And they don’t want their sweet girl, precious Alexis, to sit any longer than absolutely necessary, wondering if someone is coming for her.

Because, see, Alexis won’t be told she has a family until the family arrives in the country.  They can’t tell her someone is coming, that they love her already, that they want her to be their own daughter, forever.

So right now, Alexis is waiting, still believing there’s no hope.


I don’t know a lot about arthrogryposis.  I was asked to come here and blog today because I do know about Alexis.  I couldn’t tell you what medical treatments Alexis has had or will have.  I can’t tell you anything about that.

I can tell you I love her.  And that God loves her.  And that I believe every child, every baby, every adult, is fearfully and wonderfully made by our Creator, and every one of us desires and needs to be loved and cherished. 

Alexis needs her family, as soon as possible.   No child should have to go through life believing they aren’t wanted or needed.  No child should look at their hands and feet and think “I’m broken, no one can love me.”


It’s been a little over two months since I saw Alexis, that last glimpse of her tear-soaked face buried in her sleeve, the sounds of her heartbroken, helpless and hopeless sobs echoing behind me as I walked out the door. 

Two months, suffering, believing she has been passed over for love. 


I want Alexis to have hope again- that spark of joy and hope that I saw that day that she realized that we had come for Emma, a child who may never walk. 

I remember the hope I felt when I realized that God wanted me as His own child- me, broken, sinful, a mess.   That feeling of being claimed, despite recognizing my own weaknesses and issues, knowing that Someone loved me beyond my limitations and my perceived flaws, that Someone thought I was exactly what I was meant to be, wonderful enough to be His own, oh my goodness, the hope that I felt.

I want Alexis to feel that hope.

And she will, when she feels her mama and papa hold her tightly, whispering “I love you” in her ear. 


Their paperwork is nearly done. 

The only obstacle in their path is one that should be easy for us to overcome- money. 

$8500- the cost of the airfare, the document fees, the immigration fees

$8500 stands between Alexis and her family

$8500 stands between Alexis and hope and joy


If you want to know true joy in your own heart, join us and be a part of bringing a family to Alexis:  http://reecesrainbow.org/34963/sponsorduval-2 

This picture was taken the last day we were there.  See her eyes glistening?  This was just a few minutes before the tears started flowing.  The smile you see is a mixture of happiness for our daughter and grief of her own. 

I can’t wait to see the pictures taken by the Duvals on the day they meet their daughter, can you?


  1. she 'is' so very beautiful!
    Praying for her speedy deliverance to her forever family

  2. This comment has been removed by a blog administrator.