Created in His Image | Wide Awake Family

Fighting for Ruslan 💪

I know I’ve said it before, but here I am saying it again: our boys are superheroes. They really are! They are survivors. After all they endured while living in the institution, they still enjoy life and have learned to love and trust others, all the while daily overcoming the limitations of their physical bodies. They are forces to be reckoned with.

Our Ruslan is a mega-superhero. Is that a thing? Well, I just made it one. 🙂 He has a foot that is pretty severely deformed, and he has never had a shoe that actually fit, but he never ever complains about it. He has to limp when he walks, which over the years has transformed his hips and spine as he compensates for the limp, but he rarely even complains about any discomfort in his body. On the one hand it’s awesome because it just shows how strong he is. But on the other hand it’s sad, the fact that he has just adapted to the pain and has zero expectation that his body could change for the better. Ruslan has resigned himself to his broken body, but the rest of us have not. We want something better for him and won’t stop looking until we find a way to help.

It is not our practice at Wide Awake/Dim Hidnosti to immediately search in other countries for help for our boys, but to try to use only local resources whenever possible. One of our goals is to create something that can be replicated by Ukrainians in other parts of the country. If we rely too heavily on western help we are creating an unsustainable model that is only achievable with western connections. We want to be a spark of change in the culture here and are always on the lookout for local like-minded medical professionals who want to partner with us to help improve the lives of people with disabilities. At the same time, we recognize that this is an extremely difficult time here in Ukraine and sometimes outside help is what is needed. This is one of those moments.

Over the past four years we have searched and searched and have not been able to find any help for Ruslan here in Ukraine. Doctors don’t want to touch him and physical therapists say it is much too late for anything to be done. We tried to find a place where they could make him some special shoes, but only one company agreed to try and their attempt looked like Frankenstein shoes! I kid you not- they were like props from a horror movie. I think Rus lasted about 5 days before he just refused to put them on. They were so heavy and clunky (not to mention uuuuuuugly). He could barely walk in them. No other companies will even try to make shoes for Ruslan. Last week a PT told us “No one in Ukraine can help you. No one.” Hmmmm not exactly encouraging.

Alright, so we haven’t had any luck finding help here in Ukraine, but we refuse to just sit down and accept that. Rus is a young man and he has his whole life ahead of him. Surely we can do something to improve the quality of that life! If we don’t, his posture will only get worse and I fear that someday he won’t be able to walk anymore at all. We have to stay on this and not let it go.

So, now I’m coming to you, our awesome Wide Awake community. Will you help us search for help for Ruslan? We are looking for knowledgeable medical professionals who can become a resource for us and help us to understand the steps we should take to help Ruslan walk better and more comfortably. I have no idea what a solution for Rus even looks like.

Do we need to try to fix Ruslan’s foot with surgical interventions? If so, where can we do that? We need a surgeon to donate his time and a hospital to donate their facilities. Ruslan is a Ukrainian citizen, but he could easily get a visa to the US, for example, because Jed is his guardian and Jed is a US citizen. Several years ago we got a visa for Boris that way with zero problems.

Is surgery impossible or too big a risk and we need special shoes made? Great! Who can make the shoes and where do we need to go to make that happen? Our current solution is buying whatever shoe we find that will “semi” stay on his foot and then replacing it every 2-3 months because he walks a hole into it. Not to mention he has to stop every few meters and put his shoe back on because only the ball of his foot stays in the shoe.

Is there some sort of nonprofit out there that helps people like Ruslan and we need to start by connecting with them? Great! Send their contacts my way and I’ll get on it.

We have been advised by an American PT and by Ukrainian PT’s that no therapy will help Ruslan’s foot. Everything is fused in place and the foot is not flexible at all. PT is helpful for strengthening his leg and helping with his back, but as long as he limps the way he does, he will have problems with his hips and back. It seems that we’ve got to start with the foot.

If any of you have any connections to share with me I would greatly appreciate it. Please feel free to pass this need on to others. Surely, there’s got to be someone out there who knows how to help our guy. Let’s find that person together!

BeLOVE[d]

If you have any info or leads on help for Ruslan you can comment on this post or email me at kjohnson@wideawakeinternational.org Thanks!

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All About Sasha and Life in the Duplex

Posted on June 10, 2021 by kimnjed

If you follow our team’s social media accounts or if you’re subscribed to our newsletter you already heard the wonderful news that Sasha is home! I’m finally getting around to writing about it in this space. Two weeks ago we got to bust him out of the institution for good. It was a long road of documents and jumping through too many hoops, but that’s all behind us, and our Sasha is now safe and sound in his forever home. We are so relieved and thankful. Thank you for all the prayer support along the way.

Sasha lived with his mother for his first 11 years and then was removed from her care and placed in the institution. I remember the day he arrived at Romaniv. He was so beautiful! He looked so innocent, so full of life. We were all devastated to see such a precious soul sent to such a dark place. He was affectionate, sought out eye contact, and could even sing songs; it was obvious that he had been loved. We knew his innocence wouldn’t last long, and sure enough, over the following months and years, we watched him quickly decline and turn into a shell of his former self.

A couple years ago a social worker asked us to help find a home for Sasha, and since we knew we were creating forever homes for people just like him, it seemed obvious that he should be the first boy to come live in the duplex as soon as it was ready. Jed started on documents, Max and Morgan picked up and moved their whole lives to Ukraine, and the duplex was made into an absolutely beautiful home, all so Sasha could know love and be free. And FINALLY it is a reality. As I’m writing this he’s on his way to a swimming pool for the first time. He loves water, so I’m guessing he’s going to be pretty excited. 😊

Because Sasha’s history is different from the rest of our boys, having lived with his mother for so many years and having obviously known love at some point, we were hopeful he would have an easier period of adaptation. And so far he has! Also, he is just now 15, and the difference between taking a 15 year old out of an institution and a 30 year old is not small. His brain is more pliable. He is more flexible. He seems to learn more quickly. Yes, we are in for a marathon, not a sprint, but the head start of him being younger is a pretty big deal.

When Sasha first came to us he was afraid of everything. He resisted any transition to a different activity or a different location in the house. He was afraid to lay down to sleep and paced in his room till all hours of the night. On the first night, it took three of us to change his diaper because he was just so afraid. He didn’t really want to be touched. But he has already grown so much! It’s pretty miraculous how ready he was to be loved and cared for. He is so affectionate. He loves hugs and kisses and when he is sad he wants to be held and comforted. He is feeding himself- slowly, but safely. He smiles and has started to make some sounds. He is easily overstimulated and is pretty food-obsessed, but overall, he is really doing amazingly well. I think his development is going to explode over the next several months. It’s so fun to watch him open up and show more and more of himself.

Sasha is under the legal guardianship of Jed, but he lives in the duplex with Max, Morgan, and Anton. Max and Morgan could not be a better fit for Sasha. They love him so much and from day one they gave their hearts away to him. It’s clear that Sasha cares for them and feels safe with them. It’s just so beautiful!!! They are so attuned to Anton and Sasha and their moods, their needs. Max and Morgan are all in and they are doing a fantastic job. It’s a really wonderful thing to be able to trust them completely with the boys’ care. We are nearby if they need us, or if they have questions, but we don’t worry for one second about the boys because we know they are in capable, loving hands. I really can’t express how thankful we are that God brought Max and Morgan to us. What a gift!

Probably the biggest struggle we’ve been working through since Sasha came home is with Anton and his emotions about it all. Anton has big, big feelings, and any negative emotion is expressed with anger. It’s his go-to and he really hasn’t ever known another way. He’s had tons of transition over this past year and we expected that adding Sasha to the mix would be difficult for him. Sure enough, last week he really struggled with anger and aggression. Max and Morgan were super attentive and patient, we changed our schedule of assistants to give Anton more stability, and it seems like he has begun to turn the corner. Over the weekend he even showed some sadness with tears and crying. That’s something we haven’t really ever seen with Anton. It was super encouraging to see him working through sadness with tears instead of anger and aggression. If you remember, please pray for our Anton. He doesn’t want to hurt others, I really believe that. He just grew up his whole life in an environment where anger and aggression were the main modes of communication. Learning a new way takes time, but we won’t give up on our boy. He is learning. Please pray for Max and Morgan too. They really want to keep Sasha safe, and constantly being on the lookout for Anton’s mood shifts can be really exhausting. Pray for them for peace, wisdom, and perseverance. This work is certainly not easy. Worth it? Yes. But easy? Noooooooo. 😳

Lately, I’ve been struck by how wonderful it is to have the gift of time with our boys. We are in no rush for them to meet some sort of developmental milestones. Of course, we want to encourage them to meet their full potentials and we want them to have as much independence as they are capable of, but we are in no rush. We have the rest of their lives to help them learn. The most important thing is that they are safe and they are loved. As long as they are safe and loved- and they know it, then we have met our goal. My favorite thing is to look out into the backyard and see Anton on the swing, Sasha playing with a ball (or eating grass…🙃 ), and Bmo just enjoying sitting out in the sun. They are free! They are loved! They are valued and surrounded by people who truly know them and see them as individuals worth fighting for. Life with our boys is a gift. Sometimes it’s really hard, but a lot of times it’s really beautiful. What an honor to be the ones who get to show them love. What an honor to be the ones with whom they feel safe and at home. We are blessed to have our boys and I really can’t imagine a life without them.

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In Loving Memory

Posted on March 3, 2021 by kimnjed

Two weeks ago we heard the news, but it’s taken me a while to write about it. I’m not sure if I’ll find the right words tonight, but I’ll try, because their lives deserve to be honored. They should be known and celebrated by as many people as possible, because they were valuable and wonderful and their lives mattered.

I’m so sad to share that we have lost two of our friends. Vitya and Vova, two of our dear friends from Romaniv, have died and are now with Jesus. We are just so sad. On one hand, we are thankful that they suffer no longer. We know they are now free and they have no pain, no tears, no fear. But on the other hand we mourn so deeply for what they had to endure here on earth. We mourn that they never knew the love of a family and we weep that we didn’t get them out in time. Lots of emotions- a different one each moment. I guess we all remember anew just how important this work really is.

I’d love to share about our boys, if you’d like to know them better. I want to honor their memories by sharing with as many people as I can, just how wonderful they were.

Let’s start with Vitya. 🙂 I didn’t know Vitya quite as well as I knew Vova. We spent less time together over the years because Vitya didn’t move to the Isolation Hall until the last couple years of his life, and the Isolation Hall is where our team spends the majority of our time.

Before he was moved to the Isolation Hall, Vitya was in the same group as our Anton. He was nonverbal, but he could most definitely communicate! He was really very smart. I think anyone who visited Romaniv with us will remember Vitya. He was always ready with a handshake or a hug. When he smiled his eyes would close soooooo tightly! Vitya loved to dance and when we did our weekly dance class, back in the day, he was in absolute heaven. He had big emotions and was either very happy, or very sad, but his face showed it all. Vitya loved to pray. Any time we were going to have snack, or anytime a class ended, Vitya made certain that we stopped to pray. I will always remember that about him.

A couple of years ago Vitya was diagnosed with an inoperable brain tumor, and as his symptoms progressed he was moved to the Isolation Hall. He would fall often and just didn’t understand how to keep himself safe. We really saw him decline before quarantine. It is good and right that he is suffering no longer. But oh, we loved our Vitya and will miss his smiling face and tight hugs. I really can’t imagine Romaniv without him. He was a star and our team will never, ever forget him.

And now on to our precious Vova. Deep sigh.

I can’t help but cry as I write this. It’s heartbreaking to know that our Vova is gone. He is with Jesus, and I’m so so happy that he is free and safe and loved. We all feel that joy. But Vova’s death is a tremendous loss to our team. We planned that he would be the first to move into the second side of the duplex. We dreamed of his future as a part of our big Wide Awake Family. We imagined how he would grow and change and thrive. We wondered how he would transition and if he would maybe ever speak. We fully intended to set him free here on earth, but it will never be. He left us before we could show him that love and our heart break because of it.

I remember the first time Jed and I ever saw Vova. It was when we visited Romaniv in the spring of 2012. We were in Ukraine for the first time, scouting it out and listening for how God would have us respond to this great need, this great injustice. We visited Romaniv with Mission to Ukraine and knew at once that those boys were our people. That first visit was a bit overwhelming, but Jed and I both remembered Vova. He stood out to us because he was in such terrible condition. I’ll be honest that my first emotion upon seeing him, was fear. He was self-harming and blood was running down the side of his face. He was groaning and rocking, fiercely avoiding all human contact. He was just existing, cast away by society. His days consisted of rocking, and searching for string to swirl between his fingers.

I remember his sounds and I remember my fear. But that was not the Vova we eventually came to know. That was just a shell of a man. Our Vova had a deep laugh and an infectious smile. If you could get Vova to smile, then your day was made. Our Vova was curious. He didn’t always love to be touched and he didn’t always love to interact, but I think I can safely say that by the end of his life he had learned that some humans could be loving and good and safe. I pray that he knew he was loved by us. I know that I know that Vova knew he was loved by God. I just have to trust God’s faithfulness on that one. He promised to be a father to the fatherless, so I trust that Vova felt and knew that love. To be honest, that’s a leap of faith because Vova died from something preventable and treatable. He lived a life of abuse and neglect and in a way, he never even got to begin living. I find myself asking God a lot of questions, but in the end I choose to trust that he was near to Vova in ways we couldn’t see.

Our team visited and loved Vova for 6 years, and during 4 of those years the interns were also working closely with him on developing functional skills. It seems to us that out of all the boys in the Isolation he is one of the ones who benefited the most from that time of relationship. He really did change over time. It’s beautiful to look back through pictures and see the change in him.

The loss of Vova was a big shock to our team and we mourn him because he was loved. We will miss our friend. We are honored and thankful that we were able to know him and be witnesses to his life. As we start to bring more boys into the duplex we will remember our friend and our great love for him. His life mattered. You were loved, our Vova. You mattered to us. I’m sorry we couldn’t get to you fast enough. We will never forget you.

I’ll leave you with Vova’s laugh. This is how we want to remember our friend. Happy, curious, and gentle. Precious, and of immense value.

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Inside a Moment

Posted on December 10, 2020 by kimnjed

Watch this 26 second video:

Our team sent us that video this past week and my heart melted. Tears filled my eyes and I couldn’t stop watching it over and over. Then I showed it to Jed and he kinda bawled his eyes out. I haven’t seen him like that for quite some time. It was a moment.

That video means so much to us because of the people in it, their stories, how our lives have become entwined and all that has led up to that beautiful moment in time. I’d love to break it down for you so you can see some of what we see when we watch.

The first boy I see is our friend Maxim. He is 34 years old and loves to tell that fact to everyone he meets by holding his fingers up in their faces. He knows how to count and is proud of himself when he counts correctly.

We met Maxim and his mama 6 years ago and have loved them ever since. Maxim is tall, quick to bear hug, only speaks a few words, but is as smart as a whip when it comes to math. He has always lived with his parents, but they are quite elderly, and after his older brother passed away they had no plan for who would care for Maxim after they are unable to do so themselves. A couple of years ago his mama approached us and asked if we would be willing to take Maxim into our Wide Awake family when they pass. “You don’t have to do much for him. Just help him with his clothes and make sure to cook him food.” Of course our answer was YES! And we’ll do more than just help him with his clothes and feed him. We will love him and care for him always. He will never be alone. He will never be placed in an institution. NEVER.

When we were at the sea in the fall our team felt like we needed to start incorporating Maxim into the life of our team, so every week, twice a week, he joins our boys for lessons and special time together. Because Maxim has always been loved and cared for, he doesn’t carry trauma like our other boys. His joy is like a little child. He adds something special to our family and is God’s gift to us all.

Next I see Ruslan, and then a glimpse of Anton: my precious boys. They wasted away for years- for decades- living like animals. Now they are celebrating Christmas, surrounded by people who love them and have given their lives so that they could live. They are known. They are happy. They are growing and thriving. In the good and in the bad, they are loved and accepted for who they are. BELOVE[d]

Then Kostya, sitting next to Masha, pops into the scene. Oh, my heart was so happy to see him there! Kostya lives with his courageous mama and is a great addition to our little group. Kostya has Down Syndrome and is also autistic. His autism makes it very difficult to engage with him. He is nonverbal and can get easily overwhelmed by new situations. But, oh man, he is perfect for us. He is just the kind of boy we love to love. He can be easily passed over in social situations, and it’s hard to know what’s happening in his mind, but our little company is great for him and his mom. Our teacher, Tanya, has worked really hard to keep connection with them and to help insure they are not isolated. They belong with us.

Oh, and then there’s Sergei! Look at that sweet smiling face. He’s showing us the ornament he’s made and he’s so proud of his work. Man, he looks so good, so healthy.

We met Sergei and his mama a few months ago when they were referred to us by the director of the institution. Sergei’s mama has been raising him all on her own and had reached the point of overwhelm many months earlier. Their situation seemed impossible, and his mama felt the only situation was handing him over to the institution. She couldn’t see any other way to move forward. Since then our team has worked so very hard to help keep Sergei in the home. They have encouraged mom, included Sergei in our classes and activities and brought him into the life of our team. We are praying and acting, doing whatever we can to keep this family together. We don’t know what the end of the story will be, but for now Sergei has new friends and he and his mama are a part of something bigger than themselves. Oh, my heart leaped when I saw his smiling face- happy and loved by friends. Please pray for his mama. She has been brave for so long. Pray that she will open up to our help and that she would know the Father’s love.

I see our team and Kostya’s mom, looking on with love and care. I know them and I understand what they had to do behind the scenes to make a little gathering like that come together. Oleg must have traveled all over town, picking everyone up and transporting them from their homes. Masha arranged the work schedule so there would be enough helping hands. Tanya planned the craft and made sure it was ready and developmentally appropriate. Max was there next to Anton, helping him to regulate his emotions within the bigger group. The candle was lit. I know music was playing- the atmosphere of love and warmth thought out and intentional. A gathering like that, with a group like that doesn’t just happen. It has to be thoughtfully created. But it is worth it that our boys would know they are loved and valued, and that they would feel Christmas cheer. 🙂

When I watch that video I remember the stories of how God brought so many different people together, people that 7 years ago we had no idea even existed, but are now our family.

Now go watch those 26 seconds again. Look into those faces and see what I see. I see beautiful, precious friends who were overlooked for too long, but are now celebrated. I see lives changed and I see love in action. Annnnd I’m thankful.

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PRESTON: An Update + Video

Posted on January 16, 2019 by kimnjed

Update 4/15: An adoptive family has stepped forward for Preston! They are currently compiling their adoption dossier as quickly as possible. If you would like to donate to their adoption fund follow this link: https://reecesrainbow.org/129794/sponsorrichardson2

THANK YOU to every one of you who has shared Preston’s story with the world. As of today more than 40,000 people have viewed the blog post about his urgent need for a family.

Please keep sharing! So far no one has stepped up for Preston. There have been many, many inquiries by email, Facebook and Instagram, but no one has taken the leap.

I can not emphasize enough that this is a race against time. A family must step up NOW. If you are one of those interested families, I’m sorry to rush you…but hurry up! 🙂

Certain questions about Preston have been asked several times, so I will answer them here.

Why can’t Preston’s current family adopt him? There is no doubt that Preston’s current caregivers love him immensely. They adore him and he is a genuine member of the family. They also went into this committing to care for him for one year, and now have passed the two year mark. They never took Preston in with the plans to keep him forever. His current family saved his life. They nursed him back to life and have sacrificed SO MUCH because of their great love for him. Their hearts will break to see him go. But they are not, and have never been, his permanent plan.

Much like in the US, after a certain length of time in transition, a child’s case must move to a permanency plan. Preston’s time in transition has run out. His permanency plan is adoption- either domestic or international. He can not legally stay in his current situation.
Ukraine does not allow single parent adoptions. He currently lives with a single woman and her adult daughter. Neither of them are legally allowed to adopt him.
Both members of his current family have expressed more than once that they believe Preston would do best with a father in the family. He lights up around men and you can see he longs for that relationship that a father can provide. His current home can not provide that for him.

How can it be best for Preston to leave his country, culture and language and be adopted internationally? This is a question that is not easily answered in one paragraph of a blog post. So, so much in that question.

For sure, bringing Preston out of Ukraine into a family culture and language that is completely foreign to him will be very difficult on him. FOR SURE. There is no denying it. I am a huge advocate of keeping kids in their home culture whenever possible. The USA and other western countries are wonderful and have many amazing resources that we do not have access to further east, but I definitely do not believe that the USA and other western countries are the best place for every child.

So why do I advocate for Preston to be adopted out of Ukraine?

I advocate for that because no one in Ukraine has stepped forward for him.
Preston would greatly benefit from medical resources (therapy, medications) that are simply not available yet in Ukraine. He has so much potential, but lack of consistent therapy and doctors up-to-date on the latest in helping children with CP hold him back significantly. His CP is basically untreated at this point.
He is a very smart boy, but Ukraine does not have special education, so he is unable to attend school. This breaks my heart because I KNOW he is so capable. There are no resources here for home education- least of all education of a child with any special needs.

We love Ukraine. Heck, we moved our entire family here, permanently. I am not some random person who is not personally invested into this country and her people. We have given our lives to being sparks of change here. So let’s get that straight: I love Ukrainian people. I am committed to Ukraine. I also am raising children and adults with significant special needs here in Ukraine and I face every day what it means to live with people in a culture that does not accept them. Change is coming slowly, but it is extremely difficult to live in Ukraine with people with special needs. I’m not just talking about lack of accessibility, which is a big problem, I’m talking about the attitude of the society as a whole. Life here is an uphill battle for our guys every day and I’m not going to pretend that life would necessarily be better for Preston here.

If a child with special needs is born into a Ukrainian family that love him and are ready to fight for him then OF COURSE it is better for that child to stay in Ukraine with his family. That’s not even a question. On the other hand, if a child with special needs is born into a Ukrainian family that does not want him (like Preston) or feels they can not care for him and they give that child to the State, then it is in the child’s best interest for us to look as far and wide as we can until we find someone who will love and care for him.

Those are hard words to write, but it’s my love for Preston and thousands other just like him that compel me to point at the elephant in the room and not ignore it. If Preston is not adopted he will return to the institution where he nearly died, so no, when it comes down to him losing his language or losing his life, I will not say it is best for him to stay in Ukraine.

If you have more questions about Preston or adoption please don’t hesitate to ask! I am happy to talk with interested families.

I wrote extensively about his needs here. You can give a tax deductible donation to Preston’s adoption grant here.

Thank you for your continued advocacy! Please keep it up! Let’s find our boy a family.

I know I wrote some strong words about Ukraine. Of course there are many exceptions to this and a few of them come and work at our house every day. They fight alongside us for our guys and they, and others like them, will be the ones to change their country.