Category: Wide Awake Family Grows

IMG_3793

Life Together is Beautiful

Last week Ruslan and Jed returned home to us at long, long last. Oh, the sweet relief and joy of having them safe and sound, back in our arms. Annnnnnd they brought home with them our dear Christiana! Christiana is a friend of ours and of Wide Awake/Dim Hidnosti for many years. Her dream (and ours) was that once she finished grad school she would come spend a longer period of time here with us as a house parent, living with the boys. At long last, she finished and now she is here! It still doesn’t feel quite real that she’ll be with us for a full two years. I think we all feel a bit of the “pinch me” feelings. πŸ™‚

Now that Jed is home and Christiana is here we really do have what we have always dreamed of. We have our boys living in our beautiful homes and we have amazing house parents living with them, building family. And a huge bonus is that all of us living here on the Homestead truly love and like each other! What we have is something special and right now I’m really feelin’ all the feels about it.

Dajana and Christiana love the boys and are feeling inspired to finally make Side A of the duplex a real home. Just in time for the coziness of the holidays, too! Dajana has such a calm, intuitive way with the boys that you would never know this work was absolutely, completely new to her just a few short months ago. She’s a natural and I’m pretty sure she’s happily surprised by that. πŸ™‚ Christiana is new to us but is already thoughtfully considering how she can create meaningful time with the boys in the evenings when it’s family time. I love that! Oleg and Masha have done a really great job of making Side B into a true home for Anton and Sasha. They are dream house parents and are an example to us all of how to live life not just physically “with” the boys, but to really and truly live with them. To invite them into family, to look at them as equals, and to consider their wants and desires as humans in this world. I, for one, am inspired by them all the time.

What we have together here on the Homestead is a living, breathing, loving community and I feel so honored to be a part of it. Masha recently wrote her thoughts about community life on our team’s Instagram and Facebook pages and what she wrote was so beautiful it made me a little teary. Here’s the translation (Just a reminder, “Dim Hidnosti” translated “Dignity Home” or “House of Dignity” is the Ukrainian arm of Wide Awake. It is the name of Wide Awake’s work that is done here in Ukraine, simply because “Wide Awake” doesn’t translate well into Ukrainian) :

Life in Community
“In this era of individualism, people have begun to lose their sense of community and interdependence with others❌. In a society where no one owes anyone anything, unfortunately, there is very little room left for creating a community where all move in the same direction.

But do people need community now?
As we have already verified over the past year and a half – community, for us, is a huge driving forceπŸ’ͺ! Without community in various forms of its existence, it would not be possible to achieve goals for the benefit of society. Therefore, the development of local communities right now is very important for the further development of our country.

In a society where ‘no one owes anyone anything’, deinstitutionalization, saving children and adults from institutions, would not be possible. If ‘I don’t owe anyone anything’, then the innocent suffer. People remain defenseless at the hands of the institutional system and there is no one to help them πŸ’”. Would we want such a fate for ourselves, our children, our relatives? Then why should others be condemned to loneliness and a life without a family? We cannot choose to exist only for ourselves – we simply do not have the right to do so while there is such injustice in the world. We must act, join local communities that are already helping people, or create them ourselves πŸ™ŒπŸ»

Would it be possible for the ‘House of Dignity’ (Dim Hidnosti) to exist without community? We can say with confidence: NO. Only in community and unity is it possible to achieve the goal we have set for ourselves – to give dignity, hope, and love to people with disabilities β€οΈβ€πŸ©Ή.
The community of Dim Hidnosti is protection, support, and family for the men with disabilities who live with us. Moreover, we are their only family forever.

Community is a calling. Not every person can choose such a life for himself, because it requires full disclosure of your personality to other members of the community 🫣. To see imperfection in yourself and others and to have the courage to forgive, recover, recognize your right to make mistakes, and give this right to others πŸ€β€¦.
We appear before everyone as we are, without decorations – and there is always a risk of not being accepted or being rejected. But, is it worth taking the risk and finding out what community acceptance and love can be like and how lifelong friendships can realize and fulfill dreams?
πŸ™ŒπŸ»

Dim Hidnosti is a place of restoration and healing, not only for our boys but also for those of us who have dedicated our lives to them.
This healing and restoration is possible when every member of our community gives their heart to the work.
We are grateful for every person who has been with us, who is with us now, and who will come to Dim Hidnosti because each has given a part of their life and heart to our boys and this community
❀️.”

The longer I am a part of this community/family God has brought together the more beautiful it becomes and the more thankful I become. Is it always an easy life, living in close community where your actions affect everyone and their actions affect you? Heck no! Sometimes it hurts. Sometimes it’s tiring. Sometimes it’s disappointing. But is it worth it? Yes, a thousand times yes. I wouldn’t give up the gift of my Dim Hidnosti family for all the world. They are God’s gift to me and there is nowhere else I would rather be.

Please don’t live life alone. Seek out community. Open your eyes, your heart, your arms, your home. I am certain there is someone who needs what you have to give and your life will be so much richer for having given. We were not meant to walk this life alone. Life together is so much more beautiful.

Read More
IMG_6809

All About Sasha: Two Years Home!

This week marks two years since Sasha joined the big Wide Awake/Dim Hidnosti family. I gotta say, it feels like much longer. A hundred lifetimes have passed since then and it seems like our Sashulya has been with us forever. Today Masha reminded our team that it was Sasha’s two year anniversary, and looking back at the photos of the day we brought him home- it’s like a dream. So much in our lives has changed since then.

Because Sasha was moved out of Romaniv to a different institution during COVID and visitors were not allowed, by the time the guardianship was in the approval process and Jed and I were allowed visitation, we hadn’t seen Sasha in more than a year. He acted like he didn’t know us at all and we really didn’t know him well anymore either. We had to start our relationship over completely and that was a very different situation than with all of our other boys whom we visited with often and felt we knew very well. I remember feeling so sad for Sasha because I knew he didn’t remember us well and was confused by all the changes. I desperately wanted him to know that all was well, that his life was about to change for the better, but his understanding of the whole situation was very limited. He was afraid of everything, all the time.

I remember the day we finally, after a million delays, brought him home. The whole team was so excited. We all breathed a big sigh of relief- our boy was home. Now his life could truly begin. In those first days Sasha would just crouch on the floor, making his body as small as possible. He wouldn’t respond to his name at all and didn’t want any physical contact. He was so much in his own little world that he would literally walk into walls. He was a shell of a person. Max and Morgan, an American couple who were living in the duplex as house parents, were the perfect landing spot for Sasha. They poured all their love and attention on him and he began to thrive. It was like we had a newborn baby with us and every little new thing Sasha did and every discovery he made was lovingly documented by our devoted team. It was a precious time.

Now, two years later, Sasha is a tall, almost-17-year-old with a super loud voice and a very strong will. πŸ˜† Gone is our scared little boy. We’ve got a full-blown teenager on our hands now and I think he’s going to be an actual giant. He’s huge and it doesn’t look like he’s going to stop growing anytime soon. Sasha often seems lost in his own world, especially when he has a water bottle or one of his favorite toys in his hands, but when he wants relationship he is the most loving, affectionate cuddle bug there ever was. His smile absolutely lights up the room and everyone who knows him falls in love with him. He’s not afraid to show us what he thinks by batting us away or even falling onto the floor when he doesn’t want to go somewhere. He’s heavy and I think he knows it. πŸ˜‚ But we choose to recognize that he is communicating, showing us his likes and dislikes and I’ll take that any day over a scared little boy crouching in the corner.

Sasha loves music, especially old Ukrainian and Soviet children’s songs. He is musical and even though he doesn’t speak, he can sing the words to a couple of his favorite songs. Sasha likes water (if it’s warm) and riding in the car- but only if he gets to sit by the window! He likes to kick balls and play in our little ball pit. He’s very tactile and when he’s in the mood he really loves hugs.

Sasha’s diagnoses are Autism Spectrum Disorder and Epilepsy. He also has microcephaly and Raynaud’s Syndrome. Over this past year or so we have struggled to get his seizures under control. The doctors think this is mainly because he is growing at such a rate that we haven’t been able to keep the medication at a therapeutic level. Just last week he had an overnight EEG and we are now waiting to hear the results. Overall, his health is good, we just need to him to slow down on this growing for a bit!

Oleg and Masha are the house parents in the duplex now and they live with Sasha and Anton. It’s so cool because years ago when Masha was an intern at the institution, Sasha was one of the boys on her caseload. Now she gets to live with him like a mama. God’s plans are the best.

We love our Sashulya deeply and are mega thankful he is a part of our family. I’m just so glad he isn’t afraid anymore. I’m so happy to know that every single day he is surrounded by love and is safe. Sasha is precious and our big Wide Awake/Dim Hidnosti family adores him. Happy 2 years, Buddy!

Read More
F1A7FDAD-52F2-40BD-8155-F403C55B90E92022-04-15_12-28-13_634 2

All About Yarik and Vova: One Year Home

Can you believe that today marks one year since Jed took our precious Yaroslav and Vova out of the institution and they joined our big Wide Awake family? One whole year! On one hand it feels like this past year flew by in a wink, but on the other hand it feels like we have lived a lifetime since the boys joined us in that church in Germany. The passing of time during war is a whole different thing. Time passes quickly, but also it feels like the war has always been. So much has happened, so much has changed over this past year. We have changed and Yarik and Vova have massively changed, but imagining them back in Romaniv is just not possible. They have always been ours.

I don’t know if you remember the story of how our boys came to be with us, but it’s worth a reminder. Before the war started we had planned that Yaroslav and Vova would be the next two boys to join our family. We were just waiting on the construction of the second side of the duplex to be completed and were keeping our eyes peeled for house parents to live there upon its completion. Then February 24th came and all our dreams were put on pause (so we thought). Most of our team and all of our boys evacuated in early March and we began living together as refugees in a church in Germany. We had been living at the church for about a month when Jed made a trip back to Ukraine to check on our team here, the Homestead, and the boys at Romaniv.

I remember standing in the church kitchen when I got a text from Jed: “I’m busting the boys out”. It was so unexpected! I was absolutely shocked. Apparently a bunch of men from institutions near the front lines had been moved to Romaniv and the institution administration was severely overwhelmed with meeting all their needs. Jed’s request to take Yarik and Vova home with him came at just the right time. He had asked before and been denied, but on this trip back to Ukraine he saw their overwhelm and decided to ask again. I’m so glad that he did.

Vova leaving Romaniv for good!
Yarik busting out of Romaniv!
Yarik (L) and Vova on their first day of freedom

The situation Jed brought them to in Germany was certainly less than ideal, but nevertheless, Yarik and Vova thrived. They adapted so well to life with all of us in the church and I really believe it was only by God’s grace that they did as well as they did. I mean, Jed took them out of Romaniv one day and they next day they began a three day road trip across Europe to get to us! Only by God’s grace- for real.

Yaroslav and Vova are like different people now. Like with all of our boys, we realize after a year with them that we never really truly knew them when they lived at Romaniv. We knew only a version of them. We knew a version of them where they lived in fear every day and their brains were continually in fight or flight mode. Now we know the real Yarik and Vova. And bit by bit, as they feel safer and more secure with us, more of their true selves is shown. It’s a beautiful and sometimes difficult process to love them through and behold. This is not our first time to watch humans learn how to be people but it never loses its magic. Watching them learn to love and trust is inspiring. Watching them test the boundaries and express their true feelings (positive and negative) can be a test in patience. Watching them experience the love of a family and find safety and security is satisfying. Bringing our boys out of lives of abuse and neglect is always a test of creativity and thinking outside of the box because no two boys adapt to new life the same way. As they change and grow our approach must change and grow. There is no one-size-fits-all in deinstitutionalization. We are reminded of that every single day.

Yaroslav. Yarik is Mr. Personality and even when he was still living at Romaniv and we dreamed about taking him home with us we would all chuckle and kind of say “What the heck are we thinking? Bringing Yarik to the Homestead? Now THAT would be no joke.” πŸ™‚ We knew he would present some challenging behaviors and we would really need to have our ducks in a row, but really, the process has been a joy. Yes, there have been some big challenges because everything Yaroslav does is BIG. He moves big. His emotions are big. His voice is big. But his love is also big and he brings so much life to our big family. The timing of bringing Yaroslav home was right. We had some experience under our belts and our team was ready for whatever Yarik was going to bring our way. He has done amazingly well and has thrived in the love of our Wide Awake family.

Physically, Yarik is doing fine. He still struggles with some gastro issues, but nothing like in the those first few months. The state of his gastrointestinal system is very tied to his emotions, so the better he is able to manage his emotions, the more healthy he appears to be, gastro-wise. Yarik has epilepsy, but his seizures are really well controlled at the moment. His gross motor skills have greatly improved and the days when he can’t seem to control his limbs are now few and far between. His mouth was full of rotten teeth, so unfortunately, after working to get his mouth healthy he only has 3 teeth left. Poor guy! This summer we plan to see if he has enough healthy bone for a few implants.

Emotionally, Yaroslav is slowly growing and maturing. I think his biggest struggles have to do with unhealthy attachments. All of our boys struggle with attachment issues, and with good reason, after living most of their lives without any opportunity for healthy attachments at all. But Yaroslav’s struggles seem the greatest. He will attach himself to one person and then obsess over that person, cling to them and also push them away, vie for their attention in super unhealthy ways and act out in sometimes quite astonishing ways. He needs time. We aren’t worried. All will be well.

Yaroslav at his birthday party
Yarik and Rus, chillin’ in the kitchen πŸ™‚
Yaroslav with his sister, Vlada. You can read about their story here.

Vova. Vova has had a crazy transformation this past year. He’s like a different person! Vova has Phenylketonuria (PKU) that was untreated his whole life until we began treatment in September. PKU is basically an inherited disorder in which the body can not properly break down protein for use. As the amino acid in protein is not broken down and builds up in the body it becomes toxic to the nervous system. Untreated phenylketonuria can lead to brain damage, intellectual disabilities, behavioral symptoms, seizures, skin problems, and many other things. The only treatment for PKU is a very strict diet with severely limited protein intake and the addition of a medical supplement that provides a form of protein that can be used by the body. Vova’s PKU was untreated for 27 years. So much of the damage done to his nervous system is irreversible, but as we have seen, some of his symptoms have gone away with the PKU diet. It’s been incredible to watch him change!

Vova used to shy away from any kind of physical contact, but now he seeks out contact with the people he loves. We joke that he’s like a cat, always grabbing our hands and wanting us to rub his head and face. He now goes to the toilet independently when before he was completely incontinent. Untreated PKU leads to reduced melanin in the body so before treatment Vova was sooooo pale. His hair was almost white! Now he has brown hair and color in his cheeks. I could go on and on. He has changed so much. As he feels safer and more secure he is also starting to express more of his wants and desires, likes and dislikes, and this is good, but can also be challenging. For instance, this past week Vova began to bite people when he was unhappy with them or didn’t want to do what they were asking him to do. Ummmm that’s not gonna fly, so we’re gonna have to nip that one! Always something new with our boys…and never a dull moment!

Sasha making Vova smile. Blurry, but getting a good pic of Vova is a monumental task, sooo πŸ™‚

With Vova it’s impossible to know which changes in him are a result of treating the PKU and which changes are the result of living within the love and safety of a family, but regardless, we’ll take the changes. We’ll just keep doing what we’re doing and see how he blossoms. He is definitely the most guarded of all of our boys, so any steps toward relationship that Vova takes are cause for big celebration!

Thank you for supporting us and encouraging us along this journey with Yarik and Vova. They came into our family so unexpectedly, but what a wonderful surprise they have been. They have stolen our hearts and we can’t imagine our lives without them.

Read More
3BA7071B-2006-47D1-BEDF-4AB6C603BEF1

You Are Not Going to Believe This.

Oh my goodness, have I got a doozy for you today. I was trying to think of a clever title, but decided to just go with the obvious. You are seriously not going to believe this story, but I promise it’s true.

I’m not sure if you know this, but we have a team of builders who live here and do all the constant building and repairing on our property. They built the duplex and are now finishing up the barn and making accessible walkways around the property. We have a goal that all the construction on the Homestead will be done in the next three years and won’t that be a grand day! But until then, our building team of 5 men is a constant fixture on the Homestead. During the week they live in the old house at the front of the property and on the weekends they go home to their village about 50km away. They don’t have a ton of interaction with our boys, but they are always kind to them and the boys know them.

So, a few weeks ago one of the builders, a young guy named Vadim, was cleaning out the boiler room of the duplex. The duplex is heated with a wood boiler and every Friday one of the builders cleans it out. In the boiler room was a box of recycled documents from our office set aside to be burned. Vadim saw on the top of the pile of documents a copy of our Yaroslav’s passport and noticed that Yarik’s last name and patronymic were the same as his girlfriend’s. He snapped a photo of the document with his phone and texted his girlfriend, Vlada. “Hey look, this guy has your same last name. Weird, right?” (It’s not a common last name) Vlada looked at the name and birthdate and was shocked to put two and two together: Yaroslav is her long lost brother. I.Kid.You.Not. The girlfriend of our builder is Yaroslav’s sister!!! What the heck even??? It’s like a Hallmark movie!

This is how it all went down. When Yarik was small and it was discovered that he had a disability his mother put him in an institution. He is 8 years older than Vlada and she never met him, but she always knew she had an older brother with a disability. Yarik and Vlada’s mother was/is an alcoholic and her parental rights were removed when Vlada was small and Vlada was placed in an orphanage. She was typically developing, so she was not placed with Yaroslav. When she was 4 years old she was adopted by a good, loving family. Vlada always remembered she had a brother and when she was a teenager she decided to try to find him. She contacted her birth mother and was told that Yaroslav had died. She was too late. We don’t know why the mother told her that because we all know that Yarik is very much alive and well with us here on the Homestead. Imagine Vlada’s surprise when she got that text from her boyfriend! Ha!

The discovery about the relationship was made on a Friday afternoon and that very Sunday Vadim and Vlada showed up here on the Homestead. She just couldn’t wait to meet her long lost brother. Over the past month Vlada has visited Yarik here several times. She comes just to be with him, to sit with him, to get to know him. We don’t know if Yaroslav understands what a sister is, but he 100% understands that Vlada is someone special in his life. He asks for her almost every day and cries when she leaves to go home. He showers her with kisses and basks in her attention. He understands that she is there just for him and he adores her. For our Yarik, who’s need for love and attention is like a bottomless pit, Vlada’s presence in his life is a most beautiful, unexpected gift. And for Vlada to know her brother and to have a safe, warm, inviting place to build relationship with him- well, it’s just all around amazing.

Today we will celebrate Yaroslav’s 28th birthday and his sister, Vlada, will be joining us. He will be surrounded by all the people who love him: his big Wide Awake family and his very own sister. God’s love for Yarik and Vlada is just crazy big and we are thankful to be witnesses to it.

BeLOVE[d]


Read More
003ACBFD-84EA-469D-89BE-410C3D0497D02022-05-08_15-38-38_938

Update on Our Boys, Part 2

Like I said in the last post, amidst all the talk of war and surviving Russia’s invasion of Ukraine, it’s been quite some time since I’ve given you a good update on each of our boys. If you would like to see more frequent pictures and hear about what our boys are up to on the regular you can always sign up for our newsletter (form at the end of this post) or follow our team’s Instagram. But today I thought it would be fun just to let you know how each of our guys is doing and how you can pray for each of them, specifically.

You can find the first part of the update where I shared about Vlad, Boris, Ruslan, and Anton here.

Sasha, Yaroslav, and Vova are the newest members of the big Wide Awake Family and you probably feel like you know them the least. Back when the other 4 boys joined our fam I was active on social media and shared a lot about them. I really want you to know these three boys well too! They are so fun, precious, deserving, and wonderful. You would just love them if you met them face to face. I know it. They are impossible not to love. If you have any questions about any of our boys you are always welcome to write me! I love to talk about them to anyone and everyone. πŸ™‚

Sasha joined our family in 2021, is now 16 years old, and lives in Side B of the duplex with Anton, Grant, and Lois the cat. Sasha (aka Sashulya) is the baby of the family (well, Sasha and Evie share that role…hehe). He is the youngest of our boys by a mile and is the cuddliest, most precious, sweetest, and squishiest ever. Everyone who meets him falls in love with his smile. When we were considering taking guardianship of Sasha we felt like the Lord told us that Sasha would bring us joy. That has been the truth. He had the easiest transition to family life and just brings us tons of joy with his singing and his wide smile that lights up his whole face. He thinks he’s smaller than he is and will try to climb you like a tree if he wants to be held. But, in fact, we are pretty certain that Sasha is going to turn out to be a giant. He’s growing like a weed and his huge hands and feet show no signs of that slowing down any time soon. He’s so big and just solid!

Sasha’s development is slow and he often seems to be in his own world. He’ll get fixated on a toy or a water bottle (his item of choice) and he’s a goner. But, some new developments are that he will now often turn his head when his name is called and when food is being cooked he’ll make his way to the kitchen in expectation. Those are big things! It shows that he is becoming more engaged in the world around him. Sasha is very musical and loves to sing. He can even count to 10! Now, he totally doesn’t know what numbers are or that he’s counting, but the team counts to 10 each day during yoga and he is repeating what he hears. He even does it with the same intonation as the team. It’s so cute.

Sasha loves cuddles, eating (I think he’s the neatest eater of our boys), his toys, old Soviet children’s songs, and being with the people who love him. We love Sasha deeply and are so very thankful God has put him in our family.

How you can pray for Sasha: Pray for Sasha to continue to become more engaged in the world around him. Pray for good control, or even healing! of his epilepsy. Pray for our team to have wisdom in how to best reach Sasha and teach him new things.

Yaroslav joined our family this past April, is now 27 years old, and lives in Side A of the duplex with Vova, Lesya, and Carlos the cat. Oh Yaroslav (aka Yarik, Yaroslavchik). Yaroslav gives us a run for our money, just like we always knew he would when we dreamed of getting him out of the institution. He is such a character! I think anyone who has ever visited the Isolation Hall at Romaniv remembers Yarik well. He is just someone that is impossible to miss. He is full of so much life, energy, charisma, and fire- you just can’t help but react to his energy. Sometimes I look at him and I just can’t believe that he is here with us and not at the institution. He was such a presence there!

If you’ll remember, Jed brought him and Vova straight out of the institution and to Germany where they were refugees with us in the church. It was a really miraculous story and I think that’s why it’s sometimes still a little hard to believe it happened. We don’t have official guardianship of Yaroslav and Vova but will start the paperwork process for that this next week. We’ll have a big celebration when they are legally members of our family, but in our hearts, they are already ours.

Yarik has grown and changed a lot since we brought him out of the institution in April. He walks so much better, it’s really incredible. He has good days and bad days, as far as mobility and coordination, but most of the time he is completely independent in his walking. He needs a wheelchair for longer walks, but around the house he is independent. He is learning, slowly but surely, about boundaries and the rules of how to live in a family, but he is sooooo smart. We know he’ll get it. He’s much smarter than we ever realized before. He understands cause and effect, consequences for poor choices, and all sorts of things. He likes “helping” in the kitchen and drinking coffee, but most of all he loves people. Yaroslav longs for love and attention. Like all the rest of our boys, after living a lifetime full of neglect and abuse, his need for love and attention is like a bottomless pit that will never be filled. Sometimes his attention-seeking behaviors can be pretty destructive and tiring to manage, but we know that his journey of healing has only just begun and it won’t always be like it is now. We have hope for his future.

We dreamed of having Yarik in our family for years. I’m so thankful that dream finally came true!

How you can pray for Yaroslav: Yarik has pretty fragile health, so prayers for his health and physical wholeness would be appreciated. We recently did some genetic testing but are still waiting for the results. We want to know how to best care for his physical body and hopefully, we’ll get some answers in that testing. Please pray for Yarik and his brokenness in attachment. He is highly emotional and extremely dysregulated, especially when it comes to relationships. Please pray for him to have peace in his heart and mind, and to better understand the immense love God has for him.

Vova joined our family this past April, is now 27 years old, and lives in Side A of the duplex with Lesya, Yaroslav, and Carlos the cat. I am so so excited to share with you about our Vova (aka Vovka, Vovchik)! Vova is doing absolutely fantastic and his journey of healing over the past 8 months has been nothing short of miraculous. I am just in awe of God’s love for Vova. When Vova was in the institution we heard a rumor that he had Phenylketonuria (PKU), but the diagnosis was not in his paperwork. Once we took him out of the institution and I began to read up on untreated PKU and its symptoms, the more I was convinced that Vova was suffering from that disorder. The wait to get testing and help for PKU in Germany was months long and we ended up returning home before anyone there could help us, but FINALLY, in September we got the official diagnosis. To put it simply, PKU is an inborn error of metabolism that prevents the body from processing an amino acid found in protein. For someone with PKU, protein is toxic to the brain and when left untreated, the person develops a severe intellectual disability. Our Vova’s PKU was untreated for 27 years. πŸ™ The only treatment for PKU is a carefully controlled low-protein diet and the introduction of medical food, which provides Vova with a form of protein his body can use. In the US and most other developed countries when a baby is diagnosed with PKU their treatment is overseen by a team of specialists: a doctor, nurse, and dietician. But here in Ukraine, there is a doctor…and me. She basically gave us a couple cans of formula, a list of foods Vova can’t eat, and a wish for good luck. Ha! Let’s just say that my learning curve has been steep. But, over the past 3 months, our team has worked together and we have Vova’s PKU under good control. I do the research and math, write his weekly menu, and go grocery shopping for his special foods. We hired our friend, Inna, and she comes once a week to the duplex to cook for Vova. She has to weigh everything as she cooks and then portions out each meal by weight. Everything goes in the freezer and then the team just consults the menu and pulls out his meals for each day. It’s the only way a team of people could accurately treat his PKU. It’s a lot of work, but it’s going well!

At first, I think the team was a bit skeptical, and I’ll admit, I was too. We knew that some of the effects of untreated PKU are irreversible, but we hoped to see some sort of change after the diet was started, even if it was small. It’s just impossible to know which aspects of Vova’s disability are caused by the untreated PKU and which aspects are caused by him living in Romaniv all those years. The only way to find out was to begin treating the PKU and watch what would happen. I didn’t expect much, but Vova is changing and it is miraculous to watch! He is making so much intentional eye contact. He is happier, more peaceful. A previous doctor told us he had cerebral palsy because he was so spastic, but the geneticist (our PKU doc) thought the spasticity was more related to his untreated PKU. She was right. His muscles are still tight, but nothing like they were before. Untreated PKU has a really horrid smell and the whole house just reeked of it. No more! Vova smells fresh and clean every day. Vova used to yell a lot- kind of like a singing yell, but super loud and once he started you couldn’t get him to stop. He would randomly start yelling in church, in the car, anywhere. Now he barely ever does that and when he begins you can sometimes get him to stop just by talking to him. Another major thing is that he has started to toilet train! He was fully in diapers and had no interest in the toilet before, but now he will go there himself! He needs help, but he shows when he wants the toilet. It’s unbelievable. He is like a different person.

I am so thankful for our doctor here who has come to truly care for Vova and is so helpful to us. There is a wonderful community of Ukrainians with PKU who have donated their extra formula to us to get us by until the government starts to provide it to Vova in the new year. Our team has done a great job of following instructions and being careful with Vova’s diet. It is truly a team effort and we are rocking it. I’m just thrilled and thankful that Vova has this opportunity to truly LIVE. It’s just great.

How you can pray for Vova: Please pray for continued healing of Vova’s brain and body from the years of untreated PKU. Pray for a reversal of the harm it has done to his body. Please pray for Vova to grow in understanding of our love for him and God’s love for him and for him to learn to trust more. Pray that he would not be afraid.

Thank you again, for walking this journey with us. Thank you for loving our boys and caring about their lives. Thank you for supporting this work so that our boys could be free and live lives full of love. We are thankful!

Read More
IMG_3377

An Update on Our Boys, Part 1

We’re nearing the end of a doozy of a year and I realized, amidst all the talk of war and peace, I haven’t updated you on our boys in quite some time. This whole work exists because of them and for them, so I figured you might be wondering how they are doing! If you follow our team’s Instagram account or subscribe to our newsletter you have definitely seen pics of our fellows, but really good updates have been few and far between. So, consider this my end-of-year gift to you- part 1. We just have too many boys these days to try to write one big blog post about all of them. That’s a good problem to have! In this post I’ll share about Vlad, Boris, Ruslan, and Anton, and then in the next post, I’ll write about Sasha, Yaroslav, and Vova. Let’s dive in!

Vlad joined our family in 2015, is now 22 years old, and is living in Oregon Vladislav (aka Vlad, Vladik, Vladchik, Vlad the Builder, Vlad the Chicken Man) is doing fantastic! Many of you commented after his latest Youtube appearance that he was like a completely different person and I have to say that you’re not wrong. Vlad has grown and changed in ways we could have never imagined. When we adopted him 7 years ago he was barely verbal and whatever words he did have were barely intelligible. Now he is fluent in Ukrainian and English (and understands Russian) and is understood well by most people, most of the time. Vlad is crazy smart and crazy creative. We are so proud of the man he is becoming.

Vlad currently lives in Oregon with my parents. After our time as refugees in Germany, our Johnson family decided to make a quick visit to Oregon to see family and to do some Wide Awake business. Right before we left Germany to head to Oregon we had the idea to leave Vlad there for some time. Vlad has a lot of issues with his teeth and the structure of his mouth. Those issues have worsened drastically over the years and no one in Ukraine will even touch him. I get it- it’s a bit of a hot mess in there. There is an orthodontist in Oregon who years ago had offered to treat Vlad for free. We were thankful but knew we could never relocate our family to Oregon for the time it would take to treat Vlad’s mouth. But Vlad has grown, matured, and changed so much, we decided that he was ready to be in Oregon for his treatment without us. It kind of felt like a “now or never” moment. We asked my parents if Vlad could live with them, and they said yes! My mom just retired in May, so she has the time now to support Vlad that she wouldn’t have had before. I was able to visit Vlad there in November and he is absolutely thriving with my parents. We could never ever express to them how very thankful we are for their love and support of Vlad. It means the world to us.

In November Vlad began working in landscaping at a local company that employs people with disabilities. He only went to work once, then got sick, then visited us in Ukraine, but he arrives back in Oregon today and next week will get to begin working twice a week. He is loved by his church family and some of our friends back in Oregon. He is just doing great!! Also, his teeth are really changing. It’s exciting to see that progress. Vlad is happy, healthy, and thriving.

How you can pray for Vlad: Pray for peace in Vlad’s heart while he is away from us. He really does worry about us and our safety. He thinks about the war here and I know he feels a lot of emotions about it. Also, please pray that he would find friendship at his new job. I would just love for him to have a friend there.

Boris joined our family in 2017, is now 30 years old, and lives in our home. Boris (aka Bmo, Borya, Borka, Beemchick, Beemchick my Weemchick) has been in our family for 5 years! I can’t even believe that, but it also feels like he’s just always been with us. We love our Bmo. This year has been a rough one for our Mister Man. I mean, who am I kidding, it’s been a rough one for us all. But Bmo has really shown us with his body how stressful, difficult, and confusing 2022 has been for him. Navigating war, living as refugees, and then entering back into life in a country still at war has been challenging for all of our boys. Their understanding of the situation is limited, and for the ones who are nonverbal, it’s even harder because we don’t know how much they do and don’t understand and we don’t know what worries they hold inside of them. When we lived in the church all together in Germany Boris struggled soooo much. Who knows? Maybe he thought that was our new permanent home. Maybe he thought “Well, I guess this is what our life is now…” He was very vocal about his frustration with life there and he regressed in many of his skills and abilities. It was really heartbreaking to see, and actually, his regression ultimately helped us make the decision to return home to Ukraine. His suffering was painful to watch and there was nothing we could do to make it better for him. So hard. Transitioning back to life here in Ukraine has been good for our Bmo, but it has not been easy. It’s not like we got back home, the switch was flipped, and he was suddenly back to his old self. If only. No, it has been a hard road of recovery, but bit by bit he is getting back to where he was before the war began. We’re still in a war zone though, so some of our struggles will remain until the war ends and we can truly begin to feel safe and secure again…whatever that may look like. It’s honestly hard to imagine feeling truly safe again, but even still, we pray for God to comfort Bmo and bring him peace in his heart. He has made great strides since we returned home in July. We just keep loving him and helping him to feel secure in his place in our home and family. Boris is a gift to our family and I truly can’t imagine our lives without him.

How you can pray for Boris: Please pray for Boris to have peace and calm in his heart and mind. He is sooooo stressed much of the time. He even shakes because of the tension in his body. He isn’t harming himself, but he is very obviously not at peace.

Ruslan joined our family in 2018, is now 35 years old, and lives in an apartment with our team member, Luda. I would say that out of all of our boys Ruslan (aka Rus, Ruslanchik) has grown and changed the most over this past year. It’s absolutely incredible to see how much he has matured! Rus really doesn’t like change, especially when it is unexpected. He is a big fan of routine and knowing what comes next. So, as you can imagine, we were quite concerned about how Ruslan would do when we evacuated to Germany. I am amazed to say that Ruslan did amazingly well in Germany, and he even thrived there. If you would have told me a year ago that Rus would sleep in a room with 7 other people and do just fine I would have laughed in your face. But he did! He slept with 7 other people in one room. He lived with 39 other people in the church and was mostly happy. It was truly miraculous. One massive saving grace was that in Germany Ruslan was able to work. A place that employs people with disabilities took Rus and Vlad under their wing and the two of them were able to go to work 5 days a week. I think if Ruslan hadn’t had the stability of the work he would have really struggled in Germany. It was such a loving, positive environment and Ruslan really thrived there. We are so thankful for that experience.

After we returned home to Ukraine Ruslan began working at the electrical shop where Vlad used to work before the war. Our friend, Dima, really believes in the value of our guys and dreams of providing more work for people like our boys. His team likes having Rus there and Ruslan feels so proud to have occupation. He is slowly learning how to do different tasks and Dima even makes up work for Rus, just so he feels that he is helpful and needed there. It’s really great. Ruslan works at Dima’s shop Monday through Thursday for a little over 2 hours a day. We are super thankful to Dima for loving Rus and providing him with the possibility to work.

Ruslan is fun-loving, and caring, and really loves to pray and go to church. We love him so very much!

How you can pray for Ruslan: Pray for Ruslan to continue to grow in wisdom and to truly know that he is loved.

Anton joined our family in 2018, is now 34 years old, and lives in Side B of the duplex with Grant, Sasha, and Lois the cat. Our precious Anton (aka Antoshka, Antoha, Antonchik) has gained so many words over this past year! When we first took Anton from the institution he could say one word, the Ukrainian word for “God”. If you asked him who loved him he would answer “God”. Over the years he has learned to mimic a lot of words that people say and sometimes repeat after them, but this year he has begun to say a lot of words independently! It’s really great when he can express his wants and desires and we can only hope that his verbal skills will keep growing because I think better communication is key to helping Anton when his emotions are too big to handle. He is a high-emotion dude and in the past, any negative emotion would be expressed in anger. He is now able to sometimes express sadness too, which is a big step!

Germany was pretty rough on our Antoshka. Our living situation was basically like a mini institution and he absolutely did not thrive in that environment. It was no surprise to us that he struggled. Actually, I’m pretty amazed he held it together as long as he did! I didn’t really talk about it publicly, but in May we ended up sending Anton from Germany back to Ukraine to live with our team members that had remained here at the Homestead. Anton was struggling so hard and his aggression was growing and growing. He basically became a 1:1 and since there were so many vulnerable people living all together and no way to isolate him, there was just no way for us to keep people safe. It was actually a really tragic and impossible decision. We felt we had no option. We had to remove him from the church, but there was nowhere for him to go but home. Oleg and Maxim, two of our team members, were living here at the Homestead so Grant drove Anton to the border of Ukraine where Oleg met them and took Anton home. Although we felt we had no other alternative, it ended up being the best decision ever for Anton. We knew our guys could keep him safe and if things were to go bad here they could easily put him in the car and drive to Western Ukraine. We didn’t worry about his physical safety, but we definitely worried about his emotional state and how he would feel, being separated from all of us. His understanding is really limited, so we knew he would be super confused and sad. But, Oleg and Maxim did a great job with him and actually, once Anton was back here we knew it was just a matter of time before everyone else joined him. We are his guardians. We knew we couldn’t stay a couple of countries away from him for long. He just gave us the kickstart we needed. πŸ™‚

Since returning home Anton has done fairly well. He has his good seasons and hard seasons, but overall I would say he has had more good times than bad times. He is surrounded by people who love him dearly and he knows it. He is happy, healthy, and growing and he is very precious to us.

How you can pray for Anton: Please pray for Anton to learn to care for others. Pray for him to learn to express his emotions without aggression toward others.

Thank you for loving our boys! I know much of the growth they have experienced is because of the faithful prayers of the people who love them. They are all on journeys of healing and we are so honored to walk beside them and to be their family. Thank you for helping to make their freedom possible.

Read More
IMG_8105

Ruslan and Anton: Three Years Free

This past week was a big milestone for our family. We celebrated three years of freedom for Anton and Ruslan. Three years!! It seems like they have been with us for so much longer. It’s a little hard to remember life without them. Three years ago when we brought them out of Romaniv to join our family we committed to them for life. We committed to love them and care for them always. We naively thought we knew them then. Now I think of how much they’ve changed and I can see that we really didn’t know them at all. They had never had the opportunity to truly be known, and I’m incredibly thankful that now they are loved and known and treasured by many, many people.

If you’ve followed our journey for a while you know that life with Ruslan and Anton has not been an easy one. We have had our fair share of struggles along the way. When we committed to them for life we thought we knew what that would look like. We thought they would live with us in our home, like Boris, forever. Well, that dream lasted a year and a half, and then we realized it was 100% not sustainable. Together we have journeyed through times of great joy and great sorrow, great healing and great pain, great suffering and great hope. It has been a massive rollercoaster. BUT- I am happy to report that God has always been with us. He has never left us or our boys and he has always given us exactly what we needed. He has taught us and helped us and we are all better having traveled this path.

The day we took Anton and Ruslan home ❀️

Ruslan is living with Luda, a member of our team, and her teenage son, Nazar. They live in an apartment about 10 minutes away from our village and Ruslan is doing FABULOUSLY well. He is happy and thriving. Since living in the apartment he has grown so much in independence. We are seeing now the man that God created Ruslan to be and we are so proud of him. He brings us lots of laughs and his love for “cappuccinkos” rivals the biggest coffee fanatics’ out there. πŸ˜‚ Ruslan still struggles a lot with the trauma of his past and life with him is not all butterflies and unicorns, but Luda has great patience and they really are suited so well for life together. God blessed us abundantly when he brought us our dear Luda. What a gift.

Anton is living in the duplex, right outside our back door, with Max, Morgan, and Sasha. Life in the duplex is the best of both worlds for our Antoshka. We learned that he’s not well-suited for life in a big family, and over time it became unsafe for him to live with our family since we have small children in the home. But, he really does best when he is close to us and can see us every day. He’s a mama’s boy and I love him right back, so the duplex is the perfect place for him. Also, the proximity allows Jed and I to be a support when Anton is struggling. Man, I’m so thankful for that home! Anton has also grown and changed so much in the past three years. He is saying more words and we are all learning how he communicates and what he needs in his environment to thrive. He still struggles with anger and aggression, but he is also learning about sadness. He is learning that it’s okay to be sad and not every negative emotion he feels needs to go straight to anger. It’s okay to cry. It’s okay to make mistakes. Over and over our team shows him that he is loved no matter what. His road to healing has been a steep one, but we love him dearly and we will not stop walking with him.

Last Sunday, on the anniversary of Ruslan and Anton’s freedom, our family picked them up before church and took them out for coffee. It was the first time it was just the 11 of us since Anton and Ruslan lived with us. I can’t even tell you what a precious time it was. Every time I think of it I get all emotional! We have all come so far together. I just kept looking at their faces and feeling overcome with thankfulness that they are our family. I was reminded of what blessings they are and what an honor it is to love them and be loved by them. When our boys love, they do so without restraint. They have like a sixth sense about people and when they feel that you truly love them you will have a friend for life. They are our precious, precious gifts from God and I so needed that reminder.

Our Boys

Sometimes in the daily grind of life here our focus can shift. We can get caught up in problem-solving, scheduling, budgeting, and team management. Our boys can easily become problems to be taken care of or tasks to completed. We always love them, but their demands and needs are so great that if we aren’t careful they can become our “burdens” when God is inviting us to recognize that they are our blessings. They are so valuable and our lives are forever changed because of them. I’ll be the first to admit that I have had seasons of feeling burdened by the responsibility of our boys. The responsibility for their lives is huge! But that responsibility is an honor- not a burden. My prayer is that our hearts will always remain soft to our boys. That in the good times and the bad we would recognize that they are our blessings- our gifts. They bring us joy. They teach us to love unconditionally. In loving them and caring for them our own weaknesses are brought to light and we have the great privilege of working that stuff out and not being allowed to just sit in that place of weakness and selfishness. As their lives are changed, so our lives are changed. Not one of us remains the same on this journey of bringing the lonely into family. Praise God for that. ❀️

BeLOVE[d]

Read More
IMG_6808

All About Sasha and Life in the Duplex

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.

Sasha’s first day at Romaniv

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.

Taking Sasha home!

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 potential 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…πŸ™ƒ ), 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.

Read More
Sasha’s Homecoming

Sasha’s Homecoming

Here is a look at Sasha’s first few days in his forever home. We are so thankful HE IS HOME!!!

Read More