Deinstitutionalization

The Heart of Deinstitutionalization

Posted on by kimnjed

From Jed:

“You can take the girl out of the trailer park, but you can’t take the trailer park out of the girl.”

Whenever Kim does something silly I like to remind her of her roots.

It’s all light-hearted but the adage makes me think of what it means to work toward the deinstitutionalization of people with disabilities in Ukraine… or anywhere for that matter.

Our dream is to help our friends find the love of a family and the support of their community as they work toward becoming fully human.

We have worked for many years, creating a beautiful space for them to flourish. They now have gardens, classes, coffee with friends, house parents, therapy, church community, fun time, work time, horses, yoga, their own bedrooms, holidays, birthdays, and countless other experiences. What full lives our dear friends now live, together with us in community.

As idyllic as this all sounds, to make this dream a reality we have a team of assistants, house parents, office staff, builders, teachers, cleaners, volunteers, managers, accountants… The organization of all this requires HR manuals, team meetings, performance evaluations, process improvement plans, goal setting, shift scheduling, training, retraining… you get the idea.

The most effective way to manage all of these details is to make institutional decisions so everyone is on the same page, they know what is expected of them, and they can perform their job functions effectively, timely, and measurably. Ok, this is sounding a bit too institutional for an organization focused on deinstitutionalization.

So, how do we keep from falling into the trap of systematizing the lives of our friends with disabilities, because it is more stable, easier to manage, and makes life all-around predictable? How do we not just create mini-institutions?

The truth: sometimes we do start making our friends’ lives more institutional. We catch ourselves bringing our hands to work, but leaving our hearts at home.

Boris is constantly teaching me to slow down and be present with him. Yes, he wants his needs met. But he also wants relationship and I can get so busy solving problems that I forget Boris is a person, longing for relationship, reaching out with whatever communication tools he has, “Know me, help me… give me a #$%^ cookie!”

When I treat Boris like a problem to be solved, my decisions and my relationship with him become institutional. I’ve done all this work to get him out of an institution and then I re-institutionalize him with my heart.

I use an analogy with my team that I learned from a dear friend years ago. He would talk about sending our stunt double to work, so we wouldn’t have to bring our real selves in that day. The stunt double takes all the hits, and never gets hurt, so we can keep on acting like everything is ok.

But with our kind of work, we don’t have the luxury of sending in the stunt double. This a work of the heart, from the heart, and each moment with our friends must be processed through our hearts. Now, we use a lot of thinking and strategizing, but that is only so we can be full-hearted and completely available when we are with our friends.

Another way we work towards keeping our organization leaning forward, open, and leading with the heart is to analyze what we are doing, with our vision in mind. “Why are we here?” When we build our job descriptions and work policies, we try to have a “skeleton of rules” that supports the body (our vision). No extra bones (rules) in the skeleton.

This year we are working on a community covenant that will represent the heart of what we are trying to accomplish and the ways we all agree to work together to further our vision of deinstitutionalization.

For analyzing our work, we use a team-wide process called Appreciative Inquiry. I’ve used this approach for more than 15 years now in my professional work. Instead of going with the old classic, problem-solving model, we sit back and ask ourselves, “What is working well here?” “How do we do more of what we do well and spend less time on the areas where we struggle?” “How do we apply the ways we do things well to all areas of our work?”

I like this approach because it uses everyone’s experience and perspective as we look ahead. Our work is cross-cultural and ultimately effective if our local staff is leading the analysis, development, and implementation processes.

Another way we seek to avoid recreating mini-institutions is by remaining small. Small is beautiful. There are more than 100,000 people with disabilities institutionalized throughout Ukraine. It would be foolish to think we can solve this enormous social issue.

But, we can be a sign of hope, a candle in the darkness, a piece of the puzzle as Ukrainians change the future reality for people with disabilities in their country. By remaining small we can stay close to the heart of what we are trying to accomplish- the deinstitutionalization of people with disabilities. Not just removing them from a physical institution, but fighting to keep our hearts at the forefront of this work, remaining open to the cry of each of our boys to know and be known, to love and be loved.

Over the next three years, we plan to take four more people into our care and complete the final building on the homestead. After that, all our growth will be through partnerships and supporting the replication of this model of deinstitutionalization and family-centered care.

By remaining small, we can put our energy into helping other organizations and people to deinstitutionalize in their communities.

We strive to keep a simple approach that has the support of essential rules needed to function, with our focus on the heart of each person. We are creating a place where our values are not just applied to the work with our boys, but also to our coworkers and community members. Everyone is worthy of Dignity, Love, and Hope.

Staying close to this vision and not getting too big for a britches is how we plan to not only take more of our friends out of institutions but also to keep from re-institutionalizing them with our model of care.

Now, while I can’t get Kim to stop making tater-tot casseroles and listening to Joe Diffie, we haven’t been driving by that double-wide for sale down the road for a few weeks… so there’s hope. (I’m joking!)

Life Together is Beautiful

Posted on by kimnjed

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. 🙂

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. 🙂 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 the 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 force💪! 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 💔. 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 🙌🏻

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 ❤️‍🩹.
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 🤝….
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? 🙌🏻

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.

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Introducing, Dim Hidnosti Interns!

Posted on by kimnjed

It’s been a few years, but I am so happy to announce that a new cohort of Wide Awake/Dim Hidnosti Interns have officially begun their work. We have longed for new interns for a while now, but it just wasn’t the right time and the right people weren’t ready. But the time has finally come. We are so thankful and excited!

The vision of Wide Awake International is to bring dignity, love, and hope to people with disabilities in Ukraine. We do that, primarily, through the work of deinstitutionalization: bringing people with disabilities out of institutions and into family life. Our work, our vision, and our values go against the cultural norms here in Ukraine. For generations people with disabilities in Ukraine have been given to government-run institutions, hidden away from society, not valued, not seen, alone, and unloved. Our mission is not only to help the boys in our family and give them a better life, and it is not only to bring love and joy to our friends that remain at Romaniv. Our mission is to create a model of deinstitutionalization that can be replicated all over Ukraine. We can’t save everyone, but we can be an example. We can be a spark. We can be a model of change and hope. But in order for that spark to “catch” someone must raise up the next generation. Enter, the internship.

The goal of the internship is to raise up the next generation of Ukrainians who will carry on this work of deinstitutionalization. Whether they end up working for Dim Hidnosti in the future, or working with one of our partners, we desire to impart to them our values and our heart. And while they are learning from us they bring new life and energy to our team that we all need. The internship is definitely a win-win situation for everyone. Over the past 8 years we have had 2 successful cohorts of interns complete the 2 year internship. And out of those 6 interns, 5 of them are still active members of our team. They are our leaders, the rocks of our organization. One of the former interns, Mira, is now leading this new cohort! Full circle, baby! 😁

So, how does the internship work? Right now we have 4 interns and they are in the beginning of their 6 weeks of training. They train two days a week here at the Homestead with our team and one day each week they go with the team to Romaniv. Once their training is complete they will truly begin their work. They will work at the institution in Romaniv (where all our boys once lived) two full days each week, and then one day a week they will spend here at the Homestead planning their next week’s work and doing special projects with our boys here at home. At Romaniv their focus will be on the boys in the Isolation Hall. They have divided the boys up between themselves and will work one on one with each of the boys in their group. We have an assessment tool they will use to assess each of their boys and then will develop measurable three-month goals for each of them. The time they spend with each boy in the Isolation Hall will be spent working with them toward those goals. But the ultimate goal for the boys is to prepare them for life outside the institution. That is the “Hope” portion of the internship. We look forward to the day when each of our beloved boys will be free and cherished, within the love of a family. The internship helps them to prepare for that day of freedom. It is difficult work, but a valuable and necessary one. The day each week that they spend on the Homestead will remind them of what the future can look like when each of our boys are free. It’s important for them to see the full picture of deinstitutionalization.

The full internship program is two year long, but each of them have begun with a one year commitment. They will spend this first year determining if this work is really for them, if they see themselves participating in the work of deinstitutionalization in the future. It is a paid internship. The second year, should they choose to continue on, is more about nailing down which part of deinstitutionalization most interests them: PT, OT, Speech Therapy, Special Education, Social Work, Legal, Building, Organizational Development, Accounting, House Parenting…the list goes on and on. It literally takes a village to make this work happen and there are nearly endless ways to be a part of it.

Now that you understand more about the internship, let me introduce you to these amazing young people!

PS: They all refer to working with “Dim Hidnosti” and they don’t mention “Wide Awake”. Dim Hidnosti is the Ukrainian arm of Wide Awake International.

Sasha. We first met Sasha when he started attending our church’s youth group a few years ago. Later he became a volunteer at Dim Hidnosti. Sasha has lots of energy, loves Jesus so much, and brings loads of joy to everyone around him. We love having Sasha as a part of our team. He just “fits” with us like he’s always been here.

“My name is Sasha. I chose to be an intern because I started traveling to Romaniv as a volunteer and saw the need for help. It interested me and I wanted to help more.”

Masha. We have known Masha since she was just a little girl. When our oldest kids, Addie and Ezra, attended public school in the city, when we first moved to Ukraine, Masha was in their class. 🙂 Later, when our team member, Oleg, started working with us, we realized that Masha was his little sister! Masha also attends our church and has been Dim Hidnosti’s most faithful volunteer. She truly loves the boys and has a way with them that brings them peace. She is a natural with them, just like her brother, Oleg.

“My name is Masha. I decided to work for Dim Hidnosti in order to bring the boys joy and the feeling that someone is with them. Serving Dim Hidnosti and the boys at Romaniv is my goal. I know the boys are capable of more and I want to teach them. I will help make their lives better because they deserve it. Thank you, Dim Hidnosti for the opportunity to give them this chance!”

Ezra. Well, I have known Ezra since before he even took his first breath as a baby, because he’s my son! It actually came as a bit of a surprise to Jed and me that Ezra wanted to join the internship. But, of course we are so thankful, proud, and happy that he would want to join “the family business”. 😂 For real though, Ezra is a motivated and dedicated person. I know he will give his all to the boys and this work. What a joy to see our son join us on this mission.

“My name is Ezra. My parents are the founders of Dim Hidnosti, so I kind of grew up in this organization, but a year ago I would have never thought I would be an intern. A few months ago I started visiting the institution at Romaniv and realized that I have a heart for the work that our team does there. I want to spend more time with the boys. I became an intern to serve the boys and to find out if this work is right for me.”

Vlada. We first met Vlada just a few months ago when she realized, through a crazy sequence of events, that our Yaroslav was her long lost brother! If you haven’t read that made-for-the-movies story you should go read it here. Anyway, almost immediately after discovering that Yaroslav was alive and well with us here on the Homestead Vlada started spending as much time with him as she could. She became interested in our work and started volunteering around the Homestead. It is an absolute miracle to have her as an intern. I mean, who could have predicted the incredible story God started when He asked us to take Yarik out of Romaniv and into our big Wide Awake family. He was not only changing Yarik’s life, but Vlada’s life too. We are so, so happy to have her as part of the team.

“My name is Vlada. After my first trip to Romaniv I was not sure that I would be able to be there, that I would be able to help. But after I went a few more times everything changed. I realized that I wanted to help the boys and improve their lives, to give them love and support. Because seeing their smiles and how happy they are to see us, it gives us and impetus to improve their lives. I want to show them life from another perspective, not just what they see at Romaniv. I want them to see that they can be treated better. I thank God and Dim Hidnosti for the opportunity to do this.”

We would really appreciate your prayers for our interns as they begin this work. It will require a lot from them, emotionally and physically. There will be times when being at Romaniv will bring them great joy, but also times when it will be so terribly painful and difficult. Please pray for them for wisdom, creativity and insight, perseverance, and strength. Let’s goooooooooo!!!

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All About Sasha: Two Years Home!

Posted on by kimnjed

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!

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All About Yarik and Vova: One Year Home

Posted on by kimnjed

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.” 🙂 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 🙂
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 🙂

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.

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