Created in His Image | Wide Awake Family

Winds of Change and a Voice

Posted on April 7, 2017 by kimnjed

A couple weeks ago at church, a friend introduced us to her friend, who then met Vladik, and this story began.

The friend we met, Vera, is a local activist here in Zhytomyr. She is involved in some local politics and has a passion for children and adults with special needs. She is particularly passionate about developing inclusive education in our city.

“Inclusive education is based on the simple idea that every child and family is valued equally and deserves the same opportunities and experiences. Inclusive education is about children with disabilities – whether the disability is mild or severe, hidden or obvious – participating in everyday activities, just like they would if their disability were not present. It’s about building friendships, membership and having opportunities just like everyone else…Inclusion is about providing the help children need to learn and participate in meaningful ways.” source

Inclusive education, as a general practice, does not exist in our city, nor throughout the rest of Ukraine. There are places where inclusion is more possible than others, and of course I can’t speak to the whole country or to every school, but in general it is not practiced. Here in Zhytomyr, at this point in time, inclusive education is only available to very few children with disabilities, and generally it is only available to children who’s parents have fought, and continue to fight, a very hard fight to make it possible.

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At a press conference about inclusive education

The schools and school system in our city are simply not set up at all for children who need extra help. We have learned that just from having our own non-native speaker children in school here! Our kids’ “special need” was that they lacked language, and the schools just were not sure at all what to do with them because they didn’t fit the mold. It is not the fault of the teachers, or even the schools themselves, it is the fault of a social system that has spent decades hiding those who are different. If children with special needs do not exist in a society, then there is no need for society to adapt for them. For many years it was the practice to institutionalize people with disabilities, but that is slowly changing. More and more Ukrainian families are choosing to keep and raise their children. As more children with special needs are living at home, the need for education and inclusion for them is becoming more and more apparent.

This is not an issue isolated to Ukraine. All developing countries must face this issue at some point. In the US we have come a long way, but we really didn’t start addressing the issue of inclusive education until a few decades ago. So this is not me pointing a finger at Ukraine- as if the Ukrainian people are alone in this injustice; this is me knee deep in the fight for my son, here in Ukraine.

Now, back to the story. 🙂 Vera, our new friend, had heard about Vladik, about where he came from, and about the fact that he attends school. She was fascinated by it and asked if we would be willing to speak to the local news about our quest for education for Vladik. We agreed to meet, a bit leary in the beginning, but open to a discussion. We want to be very careful with how we expose Vladik to the news. His story is painful and tender and deserves to be shared in it’s entirety. Vladik is too precious and he has fought too hard to be reduced to a sound bite that induces guilt or pity. In my opinion, he deserves a standing ovation!

We met with Vera and agreed to share Vladik’s education story, but we wanted to make sure the focus was about how he is thriving, and not only about where he came from. She agreed, and two days later our boy was cheesin’ it up for a camera crew, charming them all with his awesomeness.

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We thought he would be nervous, but boy were we wrong! He absolutely loved the camera! He proudly showed how he gets ready for school, how he knows which bus to take and where to walk. Most of all, in my very biased opinion, he showed that he is a wonderful boy who is valuable and smart and deserving of an education, just like every other child. Here is the video:

When we decided to adopt Vladik, we felt like the Lord was telling us that Vladik would be a voice for those who have no voice. At that time we thought maybe that meant that someday Vladik would become a speaker who would share his story with others, many years down the road. And maybe that is still going to be true someday, but, wow have we been surprised how God has decided to use Vladik as a voice already! Here in his own country! Vladik is not necessarily being a voice with his words and speech, but with his life, with his joy, with his courage. He is showing his own people what is possible. He is showing how someone who was locked away for all of his childhood is still capable of learning and growing and changing, if only given the chance. He is a voice of hope for all of the children left behind.

The follow-up to the short news story about Vladik was a live interview on a local evening TV show. Gosh, I wish I would have realized it was going to be live before we got there. That was a bit of a shock! Ha! Anyway, we survived. 😉 In the first half of the show Vera interviewed Jed and me, along with one of the teacher’s from the kids’ school. We got the opportunity to share why it’s important to us that Vladik go to school. In that we were able to naturally share about his value and his worth as a human. It’s important for Vladik to go to school because he is a child and he wants to learn! He wants to be with other children and have experiences and gain independence and learn new things. He was robbed of so much in his life and we, as his parents, are obligated to help him grow to his fullest potential- however that may look like. It is our privilege to fight for him and the ones who will come behind him.

The second half of the show was what rocked my world. Vera interviewed a foster mom (our friend who fosters sweet “Baby A”) and three local mothers of children with special needs. Those moms shared about their experiences with fighting for inclusion in schools, and they said so many things that needed to be said- by Ukrainians, not by us foreigners. They spoke about the first need being an inclusive society. Inclusive education is not possible without an inclusive society. They spoke about the value of their children and their desires for them being the same as every parent’s desire for their children. We were cheering them on (literally clapping and bouncing up and down in our seats) from the green room.

Many parents of children with special needs in our city, and throughout this country keep their children at home almost all the time. They are afraid to take them out because society as a whole does not accept them. Whether that means inaccessible public transportation and buildings, or just basically unaccepting people, the results are the same. It’s easier and less painful to just stay home. We have experienced this feeling many, many days here in Zhytomyr. Sometimes I get a horrible sinking feeling in my gut when I know we are about to go somewhere with Vladik. I know the stares and the finger-pointing and the mocking will come. I know that all my kids, including Vladik will hear it. I will wonder at his understanding and my heart will break for him. I know I will need to steer clear of groups of kids because that is when the staring is the worst. I know the cruel comments will come and I will wonder how to respond. It has become our reality- and yes, some days it seems like it would be better to just stay home. Vladik is loved at home. He is safe and understood.

BUT change will not come without exposure. People can not learn if they are not given the opportunity. Vladik, with his sparkling personality and loving, cheerful nature is the perfect person to teach others. To know him is to love him. If we keep him at home, hidden away, we are contributing to the problem, not being agents of change, as God has called us to be. Vladik loves to go out! He loves adventure and going on buses and seeing new things, meeting new people. If he is brave enough to face an intolerant world every single day- and do it with joy, then we can do it too.

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Our boy is a voice. In his own, unassuming way, he is standing up for all the families and children hiding in the shadows. As one of the local moms in the interview said in encouragement to families watching “Come out! Come out! Don’t hide anymore.”

The winds of change are coming. May God open and change hearts and may He receive all the glory.

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.

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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.

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!

Created In His Image: Matthew

Posted on March 10, 2016 by kimnjed

The name of this precious boy has been changed to protect his privacy, per orphanage administration request, as his family is still involved in his life. I’m choosing to call him “Matthew”, which means “gift from God”.

I’d like to introduce you to Matthew.

I’ve wanted to introduce you to him before, but I never knew quite what to say. Most every picture we have managed to capture of him has been blurry, or scary, or even sometimes a bit disturbing. Our Matthew has been so tormented. Our hearts have been broken time and time again as we have watched Matthew suffer.

Matthew came to the institution in the spring of 2014. He had been living with his family, but his aggressive behavior became unmanageable and his parents simply had no idea how to care for him or how to keep the rest of their family safe. Their family was being torn apart. So they did the only thing they felt they could do- they sent him to the institution.

I have no judgement for these parents, only sadness at their plight. They obviously love their son, and his father still visits him frequently. They just felt there was no way for him to live in their home. If I were in their position I honestly can’t guarantee I wouldn’t have done the exact same thing. With no social support, no medical support, and limited resources, what is a family to do? Matthew was SO aggressive. He hurt himself. He hurt anyone in arms reach. He destroyed every.single.thing he could get his hands on. He growled and bit and punched and screamed and cried. I have never met another child so tormented and in such agony as Matthew. Dealing with him, let alone actually helping him was beyond our scope. Since we first met we have learned to understand Matthew’s behaviors, and we are still learning.

When we bring teams to the orphanage we can only get Matthew out of bed if we have enough team members for one person to be solely devoted to Matthew. Once taking him out of bed it is a toss-up to whether we will be able to interact with him or not. In the early days if he would tolerate us and let us bring him out to the group for bananas and music it was a great success! We would stand behind him, arms wrapped around him for his safety and the safety of the other boys, and sway back and forth to the music. He knew he needed those arms around him and would often grab our arms to make sure we weren’t going to let go. He would sway and growl and yell and bare his teeth. At first it was hard to know if the growls were good or bad…but you could tell by the tenseness of his body if he was handling the stimulation or if he needed to go back to bed. We know that Matthew’s sounds and his movements are his way of processing the different sensory input coming at him. We have since learned which sounds mean that he his happy, what Matthew’s scared sounds like, what it looks and sounds like when he is overstimulated. These were not just noises, but his way of communication, his way of making sense of his environement and the people in it.

These days he knows that our teams are good and safe. One team member will try to get him out of bed and take him for a walk. We know that the nannies don’t have enough time to give Matthew the attention he needs, and he spends almost every single minute of every single day tied to his bed. He’s not safe to be left with the other boys without supervision and he has frequent seizures, which make his own safety a concern as well. It’s not that the nannies don’t care at all, but when you have two nannies caring for 23 boys with severe disabilities and medical needs you just can’t let a child like Matthew on the loose. So he sits. His quality of life is heart wrenching. We know there is not an easy answer. You have to visit Romaniv to understand why children are tied up. It is horrible and wrong and inhumane and unjust. We know that. We hate it. Yet, at this time, with the way things are there, we simply can not change it. Tying a child back up in their bed is something that will haunt us all of our days. Tears run down our faces as we tie the knots. It’s just not right. Come Lord Jesus.

One nanny has a special bond with Matthew. She truly sees him and when she works she will take the time to get him out of bed and walk the halls with him. She is a hard worker and has a big heart. I love her for loving Matthew.

Boys like Matthew are why the new internship program is so vitally important. Matthew needs consistent people in his life who can take the time to know him, to see what makes him click, to connect with him.

Our team sent us this video of Matthew today, working with Mira, his intern, and I just started weeping. This can’t be Matthew. How is it possible? This is a completely different child. Sitting calmly, making eye contact, following directions. This video is a precious glimpse into the future that is possible for Matthew.

Matthew is beautiful. Yes, I think we have all had moments when we’ve been afraid of him and his sharp teeth. 🙂 But those aggressive behaviors are not Matthew. Matthew was created in the image of God; a gift from God. He was created with purpose and destiny. He is known by God and loved so fiercely by Him. So right now we are praying for more. More healing, more peace, more life. No one is beyond the reach of our Father.

Let hope rise.