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!
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. 🙂
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. 🙁 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!
So, what exactly do we even do here in Ukraine? Wide Awake International has a lot of moving parts and I don’t blame you if you have a bit of a hard time keeping them all straight 😆. In this episode, I introduce our boys and our team, explain the full picture of what we are doing here in Ukraine, and describe the different focuses of our work here. It’s an info-heavy episode…you’ve been warned!
PS: My brother, the super-talented Matt Bittner, is our new sound designer for the podcast! The music is his and it’s perfect.
Hi Friends! Fall is here and I’m there for it. I LOVE FALL. It’s sunny but cool, the leaves are starting to turn, pumpkins and squashes are showing up in the market. It’s wonderful! This season makes me want to bake every single day. I have to hold myself back for the sake of all our waistlines. 😆 Fall treats and beverages aren’t a thing here, and you won’t find any pumpkin patches or corn mazes, but that’s okay. We have to make the fall magic up ourselves and I’m ready. Let’s do it!
If you are subscribed to our newsletter you heard the news that Max and Morgan, the house parents in the duplex, were moving back to the US. It was a very sudden move and kind of turned life on its head. They just left on Thursday and we are figuring out what our new normal will look like around here. I’ve had a lot of questions about what that means for us here and how things look without house parents, so I thought I’d share.
Right now Anton and Sasha live in the duplex. There is space there for two more boys, so in the future 4 boys will live in that home. But right now there’s just the two. Every week, Monday through Friday, an assistant (or two) comes to the duplex at 8:00 am and assumes care of the boys until 5:00pm. The assistant helps bathe them, fixes their meals and helps them to eat, plays with them, takes them for walks, loves them and treasures them. We have the best assistants!! For reals. Everyone on our team loves our boys deeply, and each of the boys has some level of attachment to our different team members. They are not lacking in love, that’s for sure! Then, for now, Jed goes to Anton and Sasha at 5:00 when the assistant leaves and we kind of tag-team both houses until the boys go to bed at 8:30pm. Then Jed sleeps at the duplex and is with them in the morning until the assistant arrives. On the weekend we tag-team both houses, since assistants have those days off. Some of our team members have volunteered to help out on some weekends, so whenever they are available to do that we will be super grateful!
It’s certainly not ideal, but we know that God is with us and will give us everything we need. Our boys are safe and loved. We want to make them the priority during this time of transition and make sure they feel nothing but love from us. We have decided that in this time we need to just make our lives and our world really small. These boys are why we are here and now is the time to lean into that. We aren’t quickly making sure their needs are met so we can get on to the next thing, because our life with them is the thing! They are our family and we are honored to love them.
As far as our kids go, they are totally good with it. They are taking turns spending time with Jed at the duplex and spending the night there. Our kids also love the boys and see them as family, so they understand that Anton and Sasha need all of us to step up and help each other.
This plan is working for now, but it’s obviously not sustainable for the long haul. I really like living with my husband…😆 So, if you would be praying with us for God to provide more helping hands and open hearts we would really appreciate it. We have boys we love deeply sitting in the institution, and a two big, beautiful homes ready for them to live in. All we lack are people to love and care for them.
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 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…🙃 ), 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.