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. 😆 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. 😂 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!

Making our garden accessible, and fun moments from the past couple of weeks ❤️

A video update about all the things + sweet moments with our boys from this past week

Daily life around these parts ☀️

A little over a month ago I had had it with our boys and their feet. Ruslan had once again walked a hole through the bottom of his shoes and another PT had told us that he couldn’t help, and said in fact “No one in Ukraine can help you.” In the throes of frustration, I decided to put it out to the wonderful Wide Awake community to see if any of you knew someone who could help our Ruslan. We had exhausted our resources here in Ukraine and at last, decided it was time to look outside our borders for help. I wrote a blog post asking for help or recommendations for Ruslan and was blown away by all of you! You all came out of the woodwork with ideas and offers to reach out to doctors on Ruslan’s behalf. Many of you even told me that you had been following us for a long time but this was your first time reaching out- and I was so so glad to hear from you! It was really encouraging to see how many of you deeply care for our boys. Thank you from the bottom of our hearts.

I am so pleased and thankful and EXCITED to share with you that a medical team and hospital in California have agreed to treat Ruslan’s foot for free!! It’s really going to happen! I’m still a bit in shock and I’m not sure I’ll believe it’s real until Jed and Ruslan land there in California, but believe it or not, we are moving forward in faith and doing the work on our end to make it happen. It’s so exciting, right?

Who? How? WHAAAAAAAT? I know you are dying to know the details. Sit tight and I’ll tell you. ☺️ Just a few days after I wrote the post asking for help I got an email from a super kind lady in Oregon who had been following us for years, but whom I’ve never met. We have a mutual friend ❤️ from my days working as a nurse in Oregon. She told me that she has a brother who works as an anesthesiologist at a hospital in California. She read our blog, reached out to him, and right away he was interested in helping. The anesthesiologist asked his friend, the surgeon if he was on board and he also agreed! Then that most kind anesthesiologist wrote to the hospital and the hospital answered YES! In a matter of just a few weeks, God put us in contact with the kindest people with the most generous hearts and it’s a go!

I waited a couple of weeks to share this with you because we had to figure out the issue of getting Ruslan a visa. I wanted that situation somewhat in hand before I spilled the beans. Right now, during wartime, the US embassy in Kyiv is not issuing any visas. That means that we had to find an embassy in another country at which to schedule a visa interview. Embassies always prioritize the residents of the country where the embassy is located and on most of the websites, it said that nonresidents would need to wait until 2024 for a visa interview. We really, really didn’t want to wait a year for this surgery when we have doctors and a hospital willing and able to do it whenever we’re ready! But, we worked it out and Ruslan has a visa appointment in July in Bucharest, Romania. We will need to move the date out a bit, but at least we are in their system! That was the most important part. The tentative plan as of now is for Ruslan and Jed to travel to Romania for the visa in late July or early August and then fly straight from Bucharest to California for the surgery. Once the surgery is done Ruslan will be non-weight bearing for 6 weeks. So, all together Jed and Rus will likely be gone for about 2 months. As our new anesthesiologist friend wrote, “Oh what a great adventure we are starting together” 🙂

How you can help: Jed and Ruslan will be in the Santa Cruz area for the surgery. Do any of you live near there? We do have lodging covered for Jed and Ruslan for the time they will be in California. What we definitely need help with is a car. If any of you have contacts in the area who might have an extra car that Jed could use for several weeks in early August it would be a great help. Also, any help with meals or groceries would also be just a wonderful gift. Those first few days back at the guest lodging with Rus will likely be quite difficult and any support any of you could offer Jed would be a blessing to him and Ruslan both. If you live in the area and would like to help in any way, we would love to hear from you! You can email me at kjohnson@wideawakeinternational.org

Thank you again to everyone who went for bat for Ruslan over the past month. We are really thankful for every effort made on his behalf. We don’t take it lightly and are honored that you would speak out. I promise to keep you updated on this journey toward wholeness for our Rus. Praise God for his great love for our boys!

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.

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.” 🙂 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.

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!

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.

Wonderful moments together from the past couple of months ❤️

For everyone following the journey, we’ve done a lot of building during the last 6 years. Jed gives a tour of the new barn, cargo bikes, walkways, and his best attempt at keeping the chicken eggs clean. Enjoy.

www.wideawakeinternational.org

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]

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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!