On Christmas Day we had much to celebrate. Not only is Christmas always the best holiday EVER, but this Christmas we celebrated one week of having our sweet Boris home.

Yes! On December 15th the guardianship committee granted Jed’s petition for guardianship in a quick and easy 10 minute meeting. I realized that I said I would come back and share the news here on the blog, but I forgot! Sorry to keep you hanging. I share much more frequently on our Wide Awake Facebook page, just so you know. 🙂

We waited for the documents to be drawn up and ready, and then on Monday, December 18th we brought our boy to his forever home on the Homestead.

I still can’t quite believe Boris lives with us! It’s unreal! I remember the many hours our team has spent sitting with Boris at Romaniv praying and crying over him. We cried over the injustice of his life and we prayed for his freedom. Now those prayers have been answered. It’s miraculous.

I would say that overall, Boris is doing much better than we anticipated! We definitely have some big challenges, and the road to healing will be steep and long, but I’m actually shocked at how well he is doing. For instance, I thought that we wouldn’t be able to take Boris out of the house for quite some time. I imagined that the stimulation of going new places would be far too much for him, but he has proved me wrong. He loves going in the car and we have already seen improvement in his ability to cope with new surroundings and new people. Yay!

I know many of you are very curious about every aspect of this journey, so I will try to be faithful to share. I also want to make sure in sharing that I always guard Boris’ dignity. He has had so much stolen from him over the years, I don’t want to be yet another person who steals from him. He deserves better than that. So, I will share our experience, but many details I won’t share.  This is Boris’ journey as much as it is ours, and I want to be very careful to show him respect. Thank you for understanding!

Medical. Medically, we don’t really have anyone to guide us. Boris is a total medical mystery. He is the size of our 7 year old, but Boris is almost 26 years old. The only diagnosis he had at the institution was “severe mental retardation” (not my words, just the literal translation). We have no idea what kind of condition he was in upon coming to the institution in 1998, so we really don’t have any way of knowing how much of the Boris we see now was preexisting, and how much of who he is now is caused by living at Romaniv for 19 years. I’m just assuming that the main things we are dealing with are a lifetime of abuse, neglect, and constant stress and trauma. There is no handbook on how to navigate the path to healing for someone like Boris so we are just praying for wisdom and creativity and taking it one day at a time.

I’m an RN, so I’m thankful for that background right now. We took Boris last week to get a bunch of lab work done, just for some baseline numbers. Some of the labs came back quite concerning, so we will need to dig deeper into that once we find a doctor that we feel we can trust with Boris’ medical care here. We also took him for a full abdominal ultrasound, just because his body shape is so strange and he is obviously not healthy. We just have no idea what is going on with those organs in there. The US showed some abnormalities that, again, we will need to address once we find a medical home for Boris’ care. Right now we are just doing these tests at a private clinic and just ordering them ourselves. Once we collect a few more specimens for evaluation we will present all our findings to a doctor and get recommendations on how to proceed.

We will be applying for a passport for Boris ASAP so that we can get him to Germany for medical evaluations there with some of our partners. He has a foot/ankle and arm (humerus) that were broken at one point and never healed correctly. The breaks really hinder his mobility, so we are eager to find out what a surgeon will say about that.

Physical (Daily Life).  Boris requires pretty much full care. He can walk, but really only around the house. He has no stamina, pretty poor balance and the odd shape of his foot makes finding suitable shoes a real problem. We are borrowing a wheelchair from some friends while we look for a permanent chair that will fit him correctly. The wheelchair is not needed at home, but is a necessity when we are out and about. He really likes being wheeled around, so that’s a bonus!

I thought that food would be a big obstacle, but honestly, he’s done amazing! I remember Vladik being SO picky when he first came home. He would only eat pureed textures and if anything had much taste at all he would say it was “spicy”. I expected Boris to be even more picky, but boy has he proved me wrong! He hasn’t turned down anything! I’m so relieved about that. Sure, we have the food insecurities and the food obsession going on, but at least when he’s given food he’ll eat it. We all just have to be careful not to eat in front of him when it’s not his mealtime. If you eat in front of Boris you better be prepared to share! He is capable of feeding himself, but his coordination is quite poor and he crams the food into his mouth way too fast. It’s really not safe, so for now we are feeding him. Once he begins to learn that no one is going to steal his food and food will always be there when he wants it, we’ll start to work on independent feeding skills. At first he was turning down all liquids except soup, but already in one week he has changed his tune. He’ll drink basically anything except water at this point, so that’s a big victory!

Boris is not able to dress himself, so we help him with that. He wears a boys size 8. What a little peanut! He is so darn cute.

Communication. Boris is nonverbal. He doesn’t speak at all. He also does not know any signs. It’s been fun to begin to learn his ways of communicating. Some of it we already knew just from knowing him at Romaniv, but he is already much more communicative, after just one week! Having your needs consistently met encourages communication. It’s beautiful. His main methods of communication are reaching for things, or walking to the room where the need can be met (going to the kitchen for food, going to his room when he’s ready for bed, going to the bathroom when he wants the toilet). He also makes eye contact and then makes a kind of grunting sound when he wants to communicate a desire. He shakes his head when he is saying no. Like if he is grunting to me and I ask him if he needs the toilet, he will shake his head, or he will get up and start to walk to the bathroom (if we’re lucky…toileting is a whole other beast we are tackling. Oy.).  It’s really difficult to know how much Boris understands. He definitely understands simple commands, and obeys them well. How much he understands at a deeper level, beyond just simple language is impossible to ascertain at this time. Only time will tell.

As you can see on his face, Boris has quite a history of self-harm. Years and years with almost zero sensory input can lead the boys to self-harm in order to get some sort of sensory input. Right now it doesn’t seem that Boris is hitting himself for any kind of sensory input. Right now it almost seems like communication, or just his way of processing his emotions. Like, if we tell him we’re going outside, he’ll get really excited and his go-to reaction is to hit himself in the head. Or when he first came home he would hit himself very aggressively when it was time for his clothes to be changed. He has already backed way down on that. We make sure that two of us are present for big transitions and one of us will be on “hand duty” to try to keep the hitting to a minimum. We know we can’t undo the past 19 years in one week, but we can sure try. 🙂

Emotional. Emotionally, Boris was at the best he has been since we met him when we took him from Romaniv. His one on one time with his intern, Mira, has helped him to begin to develop. He is able to process this huge transition in a more positive way than he would have before. That really is one of the goals of the internship, and of our work at Romaniv, to prepare the boys for life outside of the institution. It’s awesome to be able to reap the benefit of the internship with Boris. Three years ago he would have been a complete disaster- he was self-harming almost constantly and his arms were always tied up to try to keep him safe. He’s come a long way since then. God’s timing is perfect.

Even though he can’t speak, Boris makes it very obvious that he is happy with his new life. He is so happy that today one of our kids described him as being “jolly”! Anyone who has met Boris before would be shocked to hear that word used to describe him. In this past year, at Romaniv, Boris began to laugh at appropriate times and in appropriate situations. He would laugh when his favorite volunteers were near or when he was taken outside, but it was not frequent. He was generally quite serious. Not anymore!  He will laugh appropriately at the kids when they do funny things. When he’s happy with his food he’ll make sure to catch your eye and smile and laugh. He loves music and smiles a lot when good music is playing. He especially smiles when he’s been gone in the car and realizes we’ve arrived back home. Ahhh, home sweet home.

A lot of times the laughing is appropriate, but it is also often inappropriate. Inappropriate laughter is laughter that goes on and on and on for no apparent reason. We’re talking laughter that goes from midnight till 2am without a pause…yeah, at that point we can safely assume he’s not just really, really happy.  We are aware that he is processing more complex thoughts and emotions through the limbic system.  As he heals and his brain reorganizes itself we hope to see his processes advance and change.  We’ve noticed that the manic kind of laughter happens more frequently when Boris has been overstimulated- maybe we were out and about too much, or had a houseful people (all things that are hard to avoid the week of Christmas). While Boris handles the activity and commotion quite well, he seems to pay for it later. So, we are trying to be more aware of that.

Family. It’s truly wonderful how well Boris has melded into our family. All our kids have commented on how different he is than how they expected. He’s more mellow than they expected, but also louder than they expected (hello laughter!), and he has a lot more personality than any of us expected. It’s amazing how in the institution the boys are just shells of their true selves. It only takes love and a sense of safety for their true selves to start to show up. We’re just getting glimpses of the true Boris, and he is so fun! I love watching our kids delight in him.

Many people have asked how Vladik has reacted to having Boris in our home. He is doing great! We talked about it a lot before Boris came, so Vladik was prepared. He likes to tell everyone that he has a new brother. 🙂 People have asked if Vladik and Boris were friends at Romaniv, and truthfully, no, they weren’t. I would say that the majority of the boys at Romaniv do not have “friend” attachments to any of they other boys. Many of them function socially and emotionally at such a low level that there is just not the awareness of others to form any attachments. Vladik had a peer or two that he had some attachment to, but Boris did not. Boris rarely interacted at all with any of the other boys. Honestly, all he did every.single.day was sit. Sit and sit and sit. He did not have friends.

When Boris first arrived he definitely reacted to Vladik. I assume that he, of course, remembers him! Vladik likes to talk to Boris and seems quite happy that he’s here. Vlad doesn’t love sharing attention, so he’s made sure to make his attention grabs, but that is very appropriate for where Vladik is in his emotional development. He’s adjusting just fine.

We are quite aware that this road to healing for precious Boris is going to be a long one. He has been damaged by others in every way possible. But I can honestly say that so far he has brought us immense joy. I honestly didn’t expect it! His laughter lights up a room. He is teaching our kids a new level of empathy and compassion and we are thankful for that. Taking care of him is physically demanding and requires creativity, but the feedback he gives is a gift. It is our joy to introduce him to true living.

Thank you so much for your encouragement and love during this time of transition. It blows us away how many people have reached out to cheer us all on. We need your prayers for wisdom and energy and creativity. We value your ideas and input. Thank you to every single person who has helped to make this dream possible. A life has been saved and you are a part of it. Thank you from the bottom of our hearts.

On December 15th a committee will meet to decide if we are allowed to take guardianship of our precious friend, Boris. The committee has never visited a case like ours before (non-relatives pursuing guardianship of an adult with disabilities), so we are totally unsure of the outcome. Jed has submitted all the requested documents and the law is on our side, along with institution administration. There is really no reason why they should deny our petition, but they could always ask for more documents and endlessly require more from us…there is just no saying! We are preparing our home and our hearts for the possibility of bringing Boris home on that day, but at the same time not setting our hopes too high. It’s an impossible heart situation that will only be solved with time.

So what does this “guardianship” word mean, in our case? I’ll tell you!

Legally, Boris can not be adopted by us because he is almost 26 years old and US law does not allow international adoption of adults. Also, if the goal is deinstitutionalization of all our boys, international adoption of ALL of them is probably not the most effective solution. Adoption is extremely expensive and the restrictions of who can and can’t adopt would limit our options for help in the years to come. Guardianship seems to be the best solution.

Ukraine has the options of an individual gaining guardianship or an organization gaining guardianship. In the future, once we have more homes on our property and are bringing out more boys we will most likely go the organization route. That makes more sense when you are looking at maybe having helpers in the family-style homes that are not able to commit the rest of their lives to these boys and this place. Having Wide Awake Int. remain the consistent guardianship overhead makes sense. For the boys that will be living in this house with our immediate family, like Boris, we decided to go the individual guardianship route. For one thing Wide Awake is not yet registered as a Ukrainian non-profit, but only as a US one at this point. More importantly though, we see the boys who will live in this house with us as becoming our immediate family, and as they will become a forever part of our family, it is right that we should personally be their guardians.

By law, the transfer of guardianship is from one individual to another. So the assistant director of the institution must express his desire to transfer guardianship of Boris to Jed, which he has done. The administration is totally supportive of this. They are behind us and have only helped the process so far. We are extremely thankful for that! It’s super important that they understand this is something we can do with them, not something we are doing to them. This gives them the opportunity to be an active part of the solution. Win win! Jed will have ultimate legal responsibility of Boris and will have total legal authority to make decisions on his behalf, as Boris is at this time unable to speak for himself. Through the coming years, as Boris gains his voice we will partner together in helping him become all God has made him to be with as much independence as he can safely have.

So that’s the legal side of it. What does a transfer of guardianship mean for our family? Well, that remains to be seen! Of course we have no idea what this will look like in the coming years, but we are committed to our friend. In our hearts and minds, this is an adoption. Boris will not gain our family name, but he will gain our family identity and heritage. For all intents and purposes Boris will become a Johnson, with a different last name. 🙂 We are committed to him for life as if he were our own child, born from my womb. Sure, he’s only 12 year younger than us (ha!), but to us that makes no difference. Once he is with us he will be here to stay- forever, as a beloved son and friend.

It’s funny, Jed and I were talking the other day and realized we needed to decide how we would refer to each other when talking to Boris. On paper, we are way too young to be his mom and dad, but developmentally a mommy and daddy is what Boris needs. He is like a baby in many ways and has been neglected for so many years. He needs to cocoon with family like a newborn for as long as it takes for healing to come. We decided we will be Daddy and Mommy to Boris. He’s missed out on that relationship for far too long.

Because we are not adopting Boris, he will not become a US citizen. Vladik has US citizenship because he is adopted, but Boris will remain a Ukrainian citizen. That does make things tricky, as far as when we need to visit family and partners in the US. As a family we usually plan to visit the US for two months every 2 years. As soon as we have legal custody we will get Boris an international passport and then apply for a US visa for him. It’s a total toss-up as to whether he would be granted a visitor visa, but it’s worth a try! It would be great if he could travel with us for visits, but if he is denied a visa we will ask loving friends to stay here at the Homestead with him while we are gone. It’s not optimal, but there really aren’t many options. We are hoping for and expecting great healing for Boris-spirit, mind and body. But we are not unaware that a big trip across the ocean might not be what’s best for him at any given time. So we are trying to be very open handed with all of that. God will give us wisdom.

Medically, Boris is a total mystery. We have no idea what is going on in his body. He is obviously in poor health and will need the support of many specialists. We are hesitant to pursue initial medical evaluations here, as we are simply not confident that Boris will be seen as valuable and worthy of the best medical care available. Simply said, we live in a society that does not, as a general whole, accept people like Boris, so we would like to take him out of Ukraine for some baseline testing and examinations. Thankfully, Ukrainians can now travel visa-free in the EU for 90 days at a time, and also thankfully, we have loads of friends in the medical profession in Germany who are ready to welcome Boris with open arms. We are excited to get our boy a passport and begin to sort out that body of his so he can be as healthy as possible.

As time winds down till the committee meeting I find my heart in alternate states of peace and chaos. As I sat in his room folding all his precious, clean clothes and placing them at the ready on his shelves I felt such peace and anticipation. This is what we came here for. This is what the building project was all about. For Vladik and Boris and the ones yet to come, they are why we left everything and moved our family to Ukraine. FINALLY our boys are leaving Romaniv and my heart is so thankful and at peace. We love Boris and can’t wait to bear witness to his healing. What a privilege! What a joy! We can’t get him here soon enough!

Then minutes later, when I’m missing my parents or feeling lonely for a friend my heart will jolt with the reality that this is forever. Once Boris enters our family everything changes. When Jed legally becomes his guardian we are effectively saying “Here we stay. Here we will live, ‘Till death do us part’.” That, my friends, is no small thing. We are not superhuman. We get it, what we’re saying, and it’s hard. It’s a heavy statement that we’ve been building up to for many years now. It’s not a decision that we take lightly. The weight of it can panic me a bit, to be honest.
But, this is our act of love. This is our service to Jesus. This is how we give of ourselves in the biggest YES we’ve said yet.

Right now I can’t think of forever or I might freak. So, I’m trying to plan for the future but not resting my heart there. I’m attempting to be fully present today and then tomorrow and ask God for the grace to live well in these moments right in front of me. I fail so often (daily), but living well in the present is the only way I’ll even be mildly successful at loving Boris well. And he deserves to be loved well- as do my other children, and my husband.

We have no idea what the day to day will look like, but we know it will involve lots of diapers, lots of pureeing food, lots of trial and error, lots of firsts, lots of sacrifices, lots of documents, lots of healing, lots of tears, lots of joy and laughter and lots of YES. We are as ready as we’ll ever be. Right now we just want our boy home for Christmas.

Thank you for your prayers and your love and support as the journey of YES is about to get a whole lot wilder. Please don’t ever underestimate how much your notes of encouragement mean to us. We need each other along the way, so thank you for loving us.

Hopefully I’ll be sharing good news on December 15th!