Orphans with Special Needs | Wide Awake Family

BeLOVE[d]

Posted on March 30, 2018 by kimnjed

I remember that night as clear as day. I remember the night we drove to the institution, knowing only that one little boy was dying and we had to do something about it.

He was new to the institution, having arrived the week before from the baby house. He was sick upon arrival and was quickly sent to the hospital. The hospital said there was nothing they could do for him: “His brain is dying”. So they promptly sent him back to the institution to die. We had seen him just the day before, and although we had never met before and had no baseline, we didn’t think he looked too concerning. I’m an RN with many years of experience and I never would have imagined that the next night he would be on his deathbed. He looked pale, stiff, eyes with circles under them from exhaustion, but many of our boys look like that and they are not actively dying. I thought he looked fragile, but I did not fear for his life.

The first day we met

I was wrong. Because now that I know this precious, precious boy I can look back and see how very ill he was that night. He was a shell of a boy. His body was there, but his soul was just barely hanging on. The boy we saw that day should have frightened the heck out of me. He was oh so sick. We just didn’t know.

Late at night, the day after we first met him I was contacted by some ministry friends who told me that he was dying and the nannies didn’t expect him to live through the night. I was shocked. What??? I just saw him! How can this be? A few of us from the team rushed to the institution late in the night to see if there was anything at all that could be done to save his life.

It was a fight. It was a battle I’ll never forget. I remember standing on the sidewalk outside the Isolation Hall. All around us was dark, save the moon above us, the four of us were discussing/arguing about what to do next. We were panicked and knew time was not on our side. In the end we had to pull connections at the very top of the Ukrainian government to get our boy to the hospital. But, God made the way and to the hospital he went. From the local hospital he went to a regional hospital, then to a hospital in Kyiv- creating waves at every stop.

His story reached many people all over Ukraine. Top Dogs in the Ukrainian government took a big interest in his story and a fight for life became no longer just about him- but he began to represent the thousands just like him: forgotten, neglected, deemed unworthy, deemed a waste of time and resources. News stories were broadcasted and people rose up in outrage. This little boy whose life was miraculously saved that night in a rural institution became a type of poster child for orphan reform. His life became a voice for the voiceless.

In the hospital in Kyiv

Eventually our little one, we’ll call him “Preston” was released from the hospital and went to live with a sweet family from our church- an older mom and her two adult daughters. The plan was that he would live with them for a short time while his birth mom decided what she wanted to do: take him home, or sign away her rights and release him for adoption (returning him to institutional care was never an option any of us considered). The weeks turned into months and the months turned into a year, and the family fell in love. Preston has become a member of the family and he loves them just as much as they treasure him. And oh, how he has thrived in the light of their love.

The time has now come- the time we anticipated and dreaded all at once. The time has come to find our Preston a forever family outside of Ukraine. Mom decided that she is just not able to give him the care that he needs and deserves and she has signed away her rights. Our sweet in-between family, as much as they adore Preston, recognize that he will never be able to live up to his full potential here in Ukraine. He needs therapy and medical attention that is simply unavailable here. They cry just talking about me writing this blog post, but they love him enough to let him go.

So, I’m turning to all of you, asking for help. The time has come to find the family that is perfectly suited for our boy. I am absolutely confident that they are out there.

Let me tell you more about Preston. He is 7 years old and has lived most of his life in family. He lived with his mother and father until they felt they couldn’t care for him anymore, and then he spent a year and a half in institutional care before moving to live with the family. Because of that, he does not have the institutional behaviors you see in our boys at Romaniv. He has endured trauma, there is no doubt about that, but he has also known the love of a family and has been very well-loved at that!

Preston has Cerebral Palsy and this is his great challenge. He is not able to sit up, stand, or walk independently- but he sure wants to! He tries to mimic people and say words, but does not speak fluently. He is not toilet trained at this time. His muscles just do not listen well to his brain, so his ability to feed himself or do much independently is limited. He is so smart. He understands everything and knows what he does and doesn’t want. Don’t let his disability trick you- he is fully alive in there and I can’t wait to see what he has to say once he is given more ways to communicate. Other than his CP diagnosis, he is a fairly healthy boy. He gets the occasional respiratory infection, but he is growing and developing in a healthy manner.

He wants to stand and walk so bad!

Preston enjoys cars and trucks and toys of all kinds. He needs some help to play with them, but he does like to play. He loves to watch cartoons and to color…he enjoys age-appropriate activities, he just needs help in order to engage. His arms move unpredictably and the spastic nature of his CP makes intentional movement extremely difficult. He absolutely needs consistent therapy. Preston is social and likes to be with people. He is firmly attached to his current family and it’s easy to see how he loves them. He prefers them over anyone else and cries when he is separated from them. He even sleeps in their arms! I told you he is well loved. 🙂

Preston is now available for international adoption and we are actively seeking a family. This adoption will be different than any other Ukrainian adoption I know of, because Preston will be adopted while living in his current family- not from an institution. The high-ups in the government who personally care about him have worked to make that exception possible. The adoptive family will be well-supported in Ukraine as many, many people have a very personal interest in Preston and his well-being. He is loved by many. The Ukrainian portion of the adoption will be well-supported by the government. The current family is an absolute wealth of knowledge and would love to be a support to the adoptive family in whatever ways the family wants. In other words, if you step off the ledge for this one you will not be alone. We are here for you and our love for Preston compels us to do anything and everything we can to make his adoption a success.

Saying yes to adopting Preston is no small decision. He will require a lot of care- especially in the beginning as he will be separated from everyone he loves. His care is physically demanding too. He’s getting to be a big boy and he can not care for himself at this point.

But, oh the joy. Oh.the.joy!

Out of the many thousands of children in institutions all over Ukraine, God chose this one. He plucked Preston from his deathbed in the dead of night from an institution in the middle of nowhere and saved his life. He was mere hours away from dying- this beautiful, amazing, smart, happy boy was almost lost to us. But no. God saw him and acted. God has used Preston’s life to be a voice for others and I believe He will continue to do that.

He is one special boy and I have no doubt that his adoptive family will be blessed beyond measure by his life.

Will you help share him with the world? Please share this post and please pray about your own response. Are you the family that is missing their son?

You can view Preston’s profile on an adoption advocacy site here.

If you have any questions about Ukrainian adoption in general, or more specific questions about Preston you can email me at kjohnson@wideawakeinternational.org and I will be happy to talk with you. Videos can be made available to interested families.

In Loving Memory

Posted on February 24, 2017 by kimnjed

I was sitting at the doctor with Vladik yesterday when I got the text.

Our sweet Dima had left this earth, gone to be with Jesus. He was twenty-seven years old and he was my love.

Dima had been ill and away in a special hospital for the past several months. We missed him desperately and couldn’t wait for him to get well and return to us. He did return last month, but to our dismay he looked terrible. He was so much worse, not at all healthy. He was thin and yellow and just so sick. After only a few days he was taken back to the hospital, several hours away. He died there a couple of days ago and was buried yesterday at the cemetery in the town of Romaniv. We went to see where his body was laid, surrounded by the graves of other boys gone before him.

We are shocked and just heartbroken. It wasn’t supposed to go like this. He was supposed to be with us. We were so excited for the day when Dima would come live with us at the homestead. We pictured him in our family forever. He was my special boy and I just knew that someday I would get to mother him the way my heart longed to mother him. I so desperately wanted to watch him blossom and grow and come to know the love of a family here on earth. But, God had another plan.

Can I tell you about my Dima? I want as many people as possible to know him and to see him for the precious, beautiful treasure that he was. He was amazing.

When we first started going to Romaniv we hardly noticed Dima. He was always tied to his bed because he wasn’t able to walk and was a fall risk. He usually looked drugged and out of it, and just wasn’t able to connect with other humans on pretty much any level. He was like a dead person. I’ve seen an old video of him from years ago and know that he wasn’t always like that, but somewhere along the way he was lost.

In the summer of 2014 we started taking a few boys at a time to the Sensory Room to get them into a quiet environment where we could try to connect with them one on one. I remember our team debating if we should even try to take Dima there. He couldn’t walk, but was long, awkward and heavy. One of the guys would have to carry him. Whenever we did take him there he would just sleep or zone out and it felt almost like a waste of time. There were so few hands available, shouldn’t we be focusing in on the boys who seem to enjoy our company, or at least seemed to benefit from it?

No, no, no. Dima had been passed over for his entire life. Drugged and left to sit in his own excrement for hours on end, his whole life he had been cast aside. Would we be the next in a long line of people who had passed over him and thought of him as unworthy? NO.

So, we kept taking him to the Sensory Room. And one day that summer, a miracle happened. Nina, one of our team members, was sitting on a bean bag with Dima in the Sensory Room. She was just sitting near him, being with him, when she picked up a little toy xylophone. She tapped tapped it next to his ear and he sat up! He looked at Nina with wide eyes, made some sounds and gave her the hugest smile. Our Dima was awake! Nina was crying and laughing. In amazement we all jumped up and ran over to see. I will never ever forget that beautiful moment.

How is it possible that after a lifetime of suffering, when Dima finally awoke, his first response was a smile? JOY. I can’t even comprehend it.

Over the next two years we had the awesome privilege of watching Dima come more and more alive. He still had many days when his mind was somewhere else, not wanting to, or not able to engage with us, but he also had many days when he was funny and smiley and would babble your ear off. We all absolutely adored him. He learned to say “banana” and “Lala” (the Ukrainian word for a doll). Roma, one of our team members had a special love for Dima and was working to teach him to feed himself independently. Every time he was at Romaniv, Roma would make sure to pick up Dima and get him out of his bed. He would cuddle him on the couch and just enjoy being near him. Our baby.

12295320_553514264804450_2674355060624041058_n

I know that our grieving and mourning is more about us than about Dima. He is finally free. He’s definitely not grieving and he knows no pain. He is made whole. He can run! He can speak! He is healed and right now he knows the great love of the Father better than we can even begin to comprehend.

Still, we grieve. We miss our friend and we always will. My heart aches for the suffering he had to endure in this life. I wonder if he was alone when he died? Did he suffer? Was he in pain? Did anyone at that hospital far away truly care for him? Was he treated well? Did anyone see him for the treasure he was? My heart longed to show him every day that he was loved, even adored. I dreamed of how much he would blossom in the love of a family. I so wanted him to experience that joy and peace here on earth. Why was so much of his life spent waiting for life to begin? It’s hard to trust God’s ways in times like this.

But then I remember his joy that day, years ago in the Sensory Room. For many years humans had not been a positive thing in Dima’s life. Humans had hurt him and neglected him and cast him aside. But when awakened and faced with humans- he smiled. The only way that was possible was if God was near to him in a way that we couldn’t see. God promises in His Word to be a Father to the Fatherless, and we have to trust that He keeps his Word. We have to trust that God showed his love to Dima in the deepest places of his mind and soul. We have to trust that even if he seemed to live this life so alone and abandoned, his Father in heaven never left his side, even for one second.

It was the joy of the Lord that brought the smile to Dima’s face.

It was the peace of God that followed him when he traveled to the hospital far away.

And it was the goodness of God that allowed his suffering to end.

We will never forget our precious Dima. We will miss him forever. But may we never ever forget his joy in unimaginable circumstances. Please, learn from his life. Choose joy today.

Precious Dima, you were loved. You were treasured. You were longed for and wanted. We saw your beauty and we will never be the same because of you.

Run free, my love.

While the Light Remains

Posted on November 7, 2016 by kimnjed

About three weeks ago two new little loves arrived at our institution. We had been anticipating their arrival, wondering what they would be like. Our Ben had recently vacated his crib (YAY!), and while our hearts were broken, knowing his crib would soon be filled again, our hearts were also expectant, knowing two new lives would enter ours, and knowing we would love them instantly.

We were right. Love at first sight.

Sweet Baby A has been hospitalized almost continually since the transfer. We haven’t been able to get to know him yet, but we love him nonetheless, and right now we are just thankful that he is alive and on the mend.

Our other little love has us all smitten. We are goners, and I can guarantee you’ll be one too by the end of this post.

Meet baby “Kayden“.

COME.ON. How can cuteness like this exist? Especially in a mental institution out in the boonies???? He is out of control perfection. COME.TO.MAMA.

I introduced him to you on FB yesterday and so many people were instantly in love. We had let our kids name him “Sam”, after our friend Sam who just visited us last week. Boy was I surprised when I found out that he had already been listed on an orphan advocacy site, and there were already people who had been trying to find a family for him! They had named him “Kayden“, so we’ll just run with that. Sam=Kayden=bundle of love.

If you click on his profile on the advocacy site you will find a loooooong list of diagnoses. Many of them sound very scary and many of them sound just plain confusing. I get that. But for just one minute, forget that list and look at the child.

He is perfectly amazing. He is beautiful. He is pure sunshine. He is giggles and smiles and hilarious expressions. He is light in a dark place and HE DOES NOT BELONG THERE. No child belongs there, it’s true. But seriously, we have got to get this baby out, and we’ve got to do it quick.

The thing is, our institution ruins children. It is all sensory deprivation and neglect and ugliness. Little Kayden has a spark. He has life and light in his eyes and he doesn’t yet know that he has been sent to die. Did you know that when baby houses transfer boys to our institution that they expect them to be dead within 6 months? It’s true. I’ve heard it from directors’ mouths. Everyone knows that a mental institution is no place for a fragile piece of sunshine like this. How can a child thrive in a place like this? He can’t. A mental institution is a death sentence. It’s the end of the road.

Unless.

Unless one brave family looks at the child, and considers the diagnoses and decides to take a leap for the sake of a life.

Kayden is available for adoption, and adoption is what will save his life.

We have him in a room with our Isaiah where he will get good nanny attention, and that is good. That is necessary. He would most surely die if it weren’t for those special nannies. But even the best nanny can not provide what a mommy and daddy can give. Consider our little Ben! He is home with his family and is gaining weight like crazy! Our nannies could never get him to gain no matter how hard they tried. His mommy reports that he is starting to find his voice. With us he was practically silent. I’ve seen video of him smiling and laughing- that is not the boy we knew. Now he is known. Now he is loved. Now he has light in his eyes. Children were not made for institutions. Children were made for families. Our Vladik and little Ben are living proof of that.

Kayden still has light and hope. My heart longs for a family to scoop him up before we have to watch that light fade.

Kayden is five years old and weighs 19lbs. Right now he only drinks from a bottle, but our team is trying to teach him to eat from a spoon. He can sit up, but he does not crawl or walk. Would you please consider our boy? Would you please pause and ask God how He would like you to respond to this face? Would you please share Kayden’s face far and wide so that his mommy and daddy might see him as quickly as possible and come to him? Sharing works. That is how our boys are being found. We simply have to get their faces out there and then God does the rest. Let’s get this baby out while the light still remains. Ready, set, go!

If you would like more info about Kayden, please do not hestitate to contact me. You can comment here, or you can email me at kjohnson@wideawakeinternational.org. You can find more photos of him, and info about the adoption process in his country here.

The Front Lines

Posted on October 15, 2016 by kimnjed

Last night, in the middle of the night, we stood outside the orphanage, unsure of what to do. A young child lay dying inside and never had we felt so helpless. All the details of what transpired are for a later post, as a lot is still unresolved, but last night there was a fight for his life on all levels, and I will never ever forget it. For now, he lives.

Lately we have felt pressed on all sides. Lately it’s felt like the difficulties will never stop and the obstacles will just keep on coming without relief. Several times over the past couple of months we’ve said “Something’s gotta give.” Some days we felt like we just couldn’t take one more challenge. It all just feels like too much.

BUT

Then we remember the big picture. We are not simply fighting an injust system. We are not just battling passport officers and city administrators and higher-ups only looking to fill their pockets. This battle is not against flesh and blood.

We are fighting for lives. We are fighting for precious souls who have been discarded by the world. We are fighting for God’s Kingdom to come in a very dark place. We are fighting for glimpses of Heaven to break through. And we do not fight alone. God goes before us and this is HIS battle.

Right now our team is on the front lines and we are advancing. Look what God is doing!

Our sweet Stephan will have a family! Yes, a family has committed to adopting our little love. It’s a miracle. He will have a future. He will be saved. They are in the beginning stages of paperwork, but they love him and are fighting to get to him.

Two other families are still working hard to adopt Isaiah and Jonathan. They have hit many roadblocks along the way, but progress is being made and we are confident that God goes before them.

The new roof is going up on our Wide Awake property house. Every day brings us closer to bringing our boys out for good.

Next week our family will submit our documents for permanent residency. Once we get permission to stay here forever it will be much easier for us to register Wide Awake as a Ukrainian non-profit. That will be a big and necessary step toward getting our boys out.

Jed and Den, our pastor and board member, met with the Ukrainian Ombudsman for the Rights and Protection of children to discuss Wide Awake’s vision and plans. The President’s office is aware of our team and the work. Relationship is building there and who knows how God plans to use that?

All of this is thanks to God. He gets the glory for every single bit of it because there is NO WAY we could have strategized enough or worked hard enough for this kind of advancement. We certainly would have screwed it all up. God loves our Boys so very much and He is clearing the way for the freedom. HE is doing all of this, not us.

So, it is no wonder that we meet resistance. It’s no wonder that with all of this amazing stuff happening that we meet obstacles of every kind. It’s no wonder that our hearts get overwhelmed and we are hit with trial after trial. It’s no wonder that we get afraid and intimidated and distracted. The enemy will not give up his ground so easily.

Last night, standing in the cold, knowing death was near, we were on the very edge of the front line. We were in the line of fire. Never in your life can you be prepared for a moment like that. Never in your life could you imagine that you would need to convince medical professionals of the value and worth of a life.

Friends, we need prayer like never before. The battle is heating up and much is at stake. We need supernatural wisdom like never before. We need favor with government officials and orphanage administration. We need to know when to push and when to hold back. Most of all we just need Jesus. We need to have his heart and his eyes. We need to remain humble and small in our own eyes, that He might be lifted up. We need to simply say yes and give Him the control. He loves our boys more than we ever could.

Please pray for our new little one who is so sick. I will give details as I am able. Thank you!

From Darkness Into Light

Posted on September 26, 2016 by kimnjed

One month ago the most miraculous thing happened. I didn’t realize that basically I’d been holding my breath since January. I didn’t realize it until one month ago when our team finally breathed a collective sigh of relief.

He made it. He survived. He made it out. His family took him out forever, never to return.

Our baby Ben was saved.

I think we all hoped with all of our hearts that it would happen, but until I watched Ben’s mommy and grandma walk him out of the Isolation Hall, down the sidewalk, and actually get into the van with him, I’m not sure I believed it would really happen. It was just too good to be true. FREEDOM!!!!

Ben is at home with his loving daddy and mommy and two brothers. He is doing amazing. He is a survivor and he beat the odds. And now he has a future! It’s what we want for every single one of our boys. It’s the perfect end to a beautiful love story…actually I guess it’s the perfect beginning, because only now does Ben’s life truly begin.

Freedom. It’s what we want for every single boy and man within the walls of the institution. That’s why we moved here. That’s why we purchased the land. That’s why Jed spoke in Switzerland yesterday and in Germany today. Many, many people need to know about our boys because it will take many, many people to help set them all free.

Almost all of our boys are trapped in the cycle of institutions forever unless we get them out into group homes. They are too old to be adopted or their parents still maintain their rights. They are stuck.

BUT Stephan. Stephan is not stuck. He is one of the very few who is available for adoption. His fate doesn’t have to be the same as the others. He could have the freedom and love that Ben now knows- and he could have it soon! All that is needed is one loving family to step forward and claim their son.

Stephan is such a tiny little love. He’s thirteen years old but about the size of our 6 year old, Seth. If you didn’t know his age you’d swear he’s 6 or 7. Years of neglect, physical and emotional, have stunted his growth. He loves to eat, and eats well, but he’s still so tiny.

I’ll tell you what, Stephan is all boy! There is nothing he likes more than to be spun around and around and to sit on a walker or in a wheelchair and be pushed FAST. The faster the better for our boy. He loves to play rough and he loves tickles. See, the thing is, our sweet Stephan is blind. To be in darkness in that place, oh my heart can’t even comprehend. The institution is a rush to all of your senses. The smells, the sounds, the sights, all of it rushes you like a freight train upon entering, but when I think about hearing and smelling all of that and not being able to see? Yeah, I get a little panicky just thinking of it, and I’m a grown woman! No person should have to sleep one night there, let alone spend years there in darkness. It’s just too much. Too much. Someone please get him out of there.

I’ve been wanting to hardcore advocate for Stephen for a long time. There was just one major detail that kept me from it. We knew that he was blind, but then several nannies told us that he was also deaf! This was news to us because deafness was not in his medical file. Yet several insisted that yes, he was deaf. I did not believe it, but I needed to be 100% sure before I could ask a family to come for him and be confident on that very big detail.

You might be thinking “How could you NOT know if a child is deaf or not? Wouldn’t it be obvious?” In a typically developing child in a safe environment, yes I guess it would be fairly easy to detect if there was a problem, but at our institution it is not. I told you before that the your senses are assaulted upon entering, right? I don’t even know how to fully explain to you what it is like there. It is loud: screeches, screams, some laughter, crying, yelling. During the day the noise is just about constant. And then there is the lack of stimulus. There is just nothing there. Unless the interns or a team is there, the Isolation Hall is just pure nothingness. No books, no toys, no music, nothing. Years of pure nothingness, lack of stimuli, has left our boys with many inappropriate behaviors and responses. Pure nothingness leads them to self-harming behaviors and autistic-type behaviors. Now imagine that nothingness coupled with darkness? Yeah, horrible. Stephan, like many of the other boys, does not respond appropriately much of the time. He has learned to tune out the world around him. It’s survival.

A few weeks ago I was sitting on a bed with our Vitya, cuddling him to sleep because he had a horrible toothache. Stephan came and was sitting at the other end of the bed. I sat quietly and just observed him, hoping to get my questions answered about his hearing. I called his name, no response. He sat quietly twirling his sock in front of his face, twirling and twirling. Then a nanny came in and saw that his socks were off. “Stephan, why are your socks off? Give me your foot” He stuck his foot out. “Now give me your other foot.” He stuck out his other foot. She wasn’t touching his feet, she was only speaking, and he listened and obeyed. Question answered. He hears. I told that nanny what others had said about him being deaf. Her reply “Maybe he doesn’t want to listen all the time, but of course he hears!” Haha. Sounds like a typical kiddo to me!

Stephan is potty-trained and goes to the toilet independently. He does not self-harm, nor have I ever seen him harm others. He doesn’t really interact with the other boys at all. He could learn to feed himself, but at this time he’s not interested in learning. He can walk and run, but he does not speak. he spends all of his days standing under the window or sitting in the kitchen waiting for the next meal. He spins and twirls to get his sensory needs met and he adores going outside. But, his quality of life is very poor and will remain that way until he is free.

I believe with all of my heart that there is a family out there for our sweet boy. He has SO MUCH potential!!! Please don’t be scared off by his age. He’s like a toddler in behavior, and like a first grader in size, yet in a little over two years he will age out and his chance to be adopted will be gone forever. He has waited too long in unsafe darkness.

Would you please pass on Stephan’s face to others? Would you please consider him for your own family? Maybe you have said that you hope to adopt some day but have never considered a special needs adoption. Would you consider it now? Would you at least promise to pray and ask God how He would like you to respond? We always said we would not consider special-needs adoption…uh yeah…never say never. Ha!

This boy lives in a very bad place and he needs out yesterday. I know that I know that the family who chooses him will be so blessed to see him blossom before their very eyes. He is an absolute treasure.

I am happy to answer any questions you may have about Stephan. Just comment here or email me at kjohnson@wideawakeinternational.org

Also, our Stephan has a $10,000 adoption grant through Reece’s Rainbow!!! That removes a HUGE barrier to his adoption. Please share him far and wide and let’s find this boy a family!