Eight Months In

We’re coming up on 8 months with Anton and Ruslan and I feel like we’re slowly starting to come up for air. Caring for our guys is still pretty much all-consuming, but we have gotten in to a bit of a rhythm, and things are looking up!

Sometimes it feels like their progress is so minuscule, but then we look back and remember things we had to do a few months ago just to keep the peace around here and we see how far the guys have come. Very far!

Anton. Six months ago we were barely sleeping because Anton was up all hours of the night wandering the halls. I remember we used to have to turn off all the water to the house and unscrew all the downstairs lightbulbs before we went to bed every night because Anton would get up and try to take a bath at 3 in the morning, or shriek and hoot and holler at 2am so that we would get him up and feed him. We had to remove all options in order for him to be able to turn his brain off enough to rest and fall asleep. At one point Jed was sleeping on a couch in front of his door to remove the option of nighttime wanderings. Those were the days…yikes.

Now I can happily report that Anton goes to bed easily and doesn’t get up until at least 6:30 every morning. (knock on a biiiiiiig ol’ piece of wood 🙂 ) His sleep success is thanks to a strict evening routine that we dare not stray from, and blessed medication. The combo of the two saved our lives.

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He’s saying a lot of words, and more and more often he says them at the appropriate times! He used to only really speak when he was angry, but now that’s not always the case. There are so many words in there and sometimes he’ll shock us with a “See you tomorrow!” (in Ukrainian of course) or something like that.

Anton gets stressed pretty easily, and when he doesn’t feel good, physically, he gets really worked up. In times of stress he is aggressive toward others, so that is a big bummer. I hate those times because I know he is just repeating what he’s seen his whole life and it’s not the real Anton. When he is in an aggressive mood it just becomes a matter of keeping him separate from everyone else and that is exhausting. I hope and pray that someday Anton will be able to express his emotions in ways that are less painful to others. We are doing all we can to help him learn a new way.

When Anton feels good and is at ease he is so joyful, sweet and fun-loving. He loves big bear hugs, dancing, toy cars and fidget-spinners. He enjoys stirring things in the kitchen and will gladly eat anything and everything you put in front of him. He has started to say “I love you” on occasion and this week he said “Mama” for the first time. Melt my heart.

Ruslan. To be honest, it’s hard for me to write about Ruslan because I’m unsure how much to share. Whenever I share about our boys I want to respect their dignity and respect their privacy. It’s so important for me not to overshare their personal struggles. At the same time, I always want to be honest about this process. It does none of us any good for me to pretend all is unicorns and rainbows when they so clearly are not. This is stinkin’ hard work for us, our team, and our boys every.single.day. Most of all for our boys. Learning to become a human after 20+ years of living like an animal is not an easy process to go through. They need our empathy and our compassion, but they also need our strength. They need to have a standard to rise to, expectations to meet. They need to know we believe in them and we want more for them because we love them!

Ruslan’s trauma presents itself as high anxiety and a need to be in control of everything. At Romaniv his world was small. The stressors were crazy HUGE, but there were few of them. His main priority there was keeping himself safe and keeping himself fed. Here in the real world, the wider world, there are many, many things outside of his control. There are so many more things for him to obsess about and be anxious about. If it’s not one thing it’s another.  He wants desperately to control his environment, but when you live in a house with 10 other people you just can’t control every single detail. That is outrageously hard for Ruslan. Sometimes it seems like it’s only getting harder, only getting worse, but he has actually made some great strides in the past few months. A few months ago he was was having daily meltdowns and those really only happen on rare occasions now. You can see him ramping up for a meltdown, and then most of the time he can wind himself down. Not always, but most of the time. I’m so thankful for that!

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When Ruslan is relaxed and at peace he is hilarious. He has a great sense of humor and a compassionate heart. He really loves Evie and is mostly gentle with her. He loves to sing, and worship time at church is his most favorite thing EVER. The anxiety ridden Ruslan who acts out in fear holds back the real Ruslan. The anxious Ruslan is also extremely hard to live with. It breaks my heart because I want things to be different. So, we will continue to fight for him. We will fight to get him all the help we can so that he can live his life to the fullest.

We have waited a bit to see how things would play out with a highly structured day and several months of safety and now we have an accurate baseline for Ruslan. We are ready to seek out psychiatric care for our guy and see how we can best help him move forward. If you would pray with us for wisdom in this we would really appreciate it.

Health. As far as medical stuff goes for both guys, we’ve been slowly but surely getting things taken care of. Fridays have become our “medical day”, so Kenny and I try to tackle the different medical appointments on Fridays. We’re focused on dental stuff right now and that’s super fun since Kenny and I both HATE going to the dentist. I’m not sure how much moral support we provide, but we do our best. Hehe. Anton has one problematic tooth that should be fixed next week and Ruslan has a whole mouthful of problems. I’m not sure he’ll have any teeth left when we get finished. Poor guy. 🙁 I’m guessing we’ll be exploring the world of dentures or implants in the near future. Anton has some physical symptoms that I don’t have answers for yet, but all in all I think they are both in pretty good health at the moment. Step by step we’re getting there!

I have to say that there is no way we could do any of this without our amazing team. Kenny and Oleg are with us Monday through Friday, bathing our guys, shaving them, taking them on bike rides, teaching them how to make tea, keeping them safe, talking them off the ledge, teaching them how to be men, loving them, comforting them, supporting us and all in all just being awesome. This really would be impossible without their help. We would have burned out months ago.

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Masha, Masha, and Lesya are also absolutely essential to the success of this home. “Harry Potter Masha” 😉 comes to our home three times a week. She plans and organizes the guys’ schedule for the week and is learning to implement the plans that Olya, our wonderful OT, recommends. Masha’s work makes it so that we aren’t just spinning our wheels with the guys, but we are hopefully moving toward specific developmental goals. “Second Masha” and Lesya each come once a week and provide great additional support to our guys and the rest of the team. I love our team and can’t express how thankful I am that God brought each of them to our family.

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So, there’s a bit of an update on our two newest family members. If you have any questions about Anton or Ruslan, or the process of deinstitutionalization don’t hesitate to ask! My hope and dream for writing this out is that someone reading it will also feel called to this deep, difficult, and beautiful work. We need help and I know God will call the right people to join us. I also write this so that those of you who pray will know better how to pray for our family and our team.

To all of you who pray, support, encourage and love us from afar, thank you! We can’t tell you how much we need it and appreciate it. Thank you for partnering with us on this journey. We couldn’t do it without you!

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Superheroes Live in Our House.

Sometimes I don’t know completely what I’m thinking or feeling until I write it out. You’ve been warned. 🙂

When we moved to Ukraine 5 years ago our mission was clear: to bring hope, love and dignity to people with disabilities. Our main goal was deinstitutionalization.  We dreamed of this work. We dreamed of this reality. We dreamed of the day we would begin to bring our guys out and have the opportunity to show them the love of a family. I dreamed of being a mama to them- to those who had no mama.

Now we are living that dream. It is a reality!

Four of the very ones we dreamed of setting free are downstairs drinking tea at the kitchen table. The ones who can speak call me “mama”. I dreamed of that. 🙂

Yes, I dreamed of it, but now that it’s here, I struggle with the reality of it. The day to day of it is harder than I imagined- much less romantic than I imagined. The reality of deinstitutionalization of adults who are so very broken- body, mind and spirit is non-stop work with very little reward. Yet I longed for it. I wept for it. I dreamed of it. But it’s so dang hard. So.dang.hard.

Where’s the disconnect? I love our guys. I can’t imagine not having them with us. Then why do I struggle so bad with their behaviors?  Why am I so often annoyed? Why do I (too often) wake with dread in my heart over the hardships I know the day will bring?

I can tell you why. Two reasons:

  1.  Far too often I try to do this work, live this life, without Jesus.
  2. As much as I fight for our guys to be included and seen as equals by the people around them, in my heart, I still see them as “less than”.

Friends, this work will bring you to your knees. Spending your life with the broken, teaching them to become human is a work that will break you. Well, I guess I can’t speak for you, but it’s definitely breaking me. Every single day I’m confronted with my own weakness, my own ugliness. It’s so yucky. Here I am fighting for justice for our guys; trying to show Ukrainians a new way, and yet I know that I don’t value them the way they deserve to be valued. Somehow, even after knowing all they have suffered, I still have a bit of my heart that looks down at them.

God forgive me.

I put my agenda before them. I dismiss their feelings as less important than my own. I shower love on them when they behave more human, but when they move into old behaviors I withhold my affection.

God forgive me.

I find myself realizing that those who are “lower functioning” (I hate that term but don’t know a better one) are generally easier for me because they require less of me. I can care for them more on my terms- when it’s convenient for me. The “higher functioning” of our boys demand more. Their struggles, feelings and hurts are presented in more complex ways and I’m exhausted with trying to make sense of it all, so I sometimes give up.

God forgive me.

As you’ve figured out, if you’ve read this far- I am far from a superhero (I’m sure you already knew that). I am a super flawed human who screws up on the regular. I function too often out of my own strength, which is consistently running out.

I need Jesus. Guys, I have zero business getting out of my bed and letting my feet touch the ground without first talking with Jesus. I’ll tell you what happens when I try to do my day in Kim’s strength. I’m short- like I have zero patience. I’m easily annoyed. I find more joy in my coffee than in the people around me. I’m discontent. I search for approval from others. I look for distraction. I compare my life to the lives of others and I either envy them, judge them, or puff myself up. Bottom line: Kim minus Jesus equals HOT MESS.

I’m not sure why I think I can do this on my own when I so clearly stink at it.

And yet-

His power is made perfect in my weakness. God has called us to this work and I know that I know if I turn to Him He will give me everything I need. Tomorrow is a new day and His mercies are new every morning. Amen?

I’ll tell you who the superheroes are around here: their names are Ruslan, Anton, Boris and Vladik.

Our guys have endured unimaginable pain, abuse and neglect. Their childhoods were stolen from them. Their teen years were stolen from them. So many missed opportunities, missed birthdays, missed cuddles, missed “I love you”s, missed adventures, missed family dinners, missed holidays, missed moments of peace and joy. Ruslan, Anton and Boris spent 3 decades as prisoners, innocent of any crime.

They came to us afraid, diseased, malnourished of body and spirit. But every single day they wake up and they try again. They are survivors. They are learning to give themselves to others, learning to become human. I’m certain it hurts them far more than it hurts me.

Our guys are deserving of the best- not because of what they have endured and not because of their likability, but because they are children of God, created in His image, just like you and me.

I’m done. I’m done holding back a part of my heart and selfishly longing for something different. I’m done parceling out my love to those who “deserve it” in that particular moment.

I’m here. I’m planting myself. No matter if our guys are every fully included into society here in Ukraine, they will fully be included into my heart. Not everyone is lucky enough to live with superheroes, but I get to live with 4. I’m one lucky lady. 🙂

BeLOVE[d]

 

YOUR QUESTIONS ANSWERED: Vol. 1 and 2

Hi All!

Thank you so much for all the wonderful questions! It has been fun for us to find out what you are interested in and where the pieces are missing in the stories we share. People asked questions on Facebook, by email, and on Instagram. So fun!

The response was big so we divided the questions into 4 categories: Family (Johnson Fam minus the guys), Food, The Guys (Boris, Ruslan and Anton), The Homestead, and “Past, Present, Future”.

Here are the video responses we created for “Family” and “Food”. The rest are in the works, so stay tuned! If you follow Wide Awake on Instagram you can also see responses to the Instagram questions in our Stories and Highlights. 🙂

 

“International B-Mo Day”

Today marks ONE WHOLE YEAR since our beloved Boris was taken out of Romaniv and joined our family. ONE YEAR! It feels like it has flown by, but it also feels like he’s been with us for a lot longer.

Learning to love and care for Boris has been the most character-defining time in my life. I’ve said it before and I’ll say it till the cows come home: caring for the weak and broken is a fabulous way to expose your own weaknesses and areas of brokenness. I thought I was a pretty okay person until B-Mo joined us. He has taught me the extreme selfishness in my heart and the extreme impatience as well. I will be forever grateful to him for this. Not that those battles have been won, but at least now I can see that the battles are there and the areas where I am exposed.

We had no idea what to expect when we took Boris home last December 18th. I remember that he knew the day was special. As soon as I entered the Isolation hall to get him dressed he grabbed my hand and scooted toward the door like “Let’s get outta here!” Now that I know him and I know how smart he is, of course he knew the day was special! I’m sure he heard nannies and others talking about it for weeks in advance. Sweet boy. Boris is no dummy.

I remember how when we pulled up to the driveway he was afraid to get out of the van. Jed eventually had to pick him up and carry him into the house. I remember how after he ate he tried to grab all the food he could off the counter. I remember how we had to feed him and how he was so impatient because he was used to food being shoved down his throat at such an amazing speed, he didn’t know how to eat slowly.

I remember how in those first days he was quiet and only interested in sitting on the couch alone.

I remember the first several months when Evie was born and Boris’ honeymoon period was over and how we (mostly I) cried every day. “How are we going to do this? Why did we do this? I can’t live like this forever…” I’m going to be painfully honest here. There were many days last spring when I had major feelings of regret. Not regret like “Let’s take him back to Romaniv”, but regret like “I regret that I chose to do this with my life.” Seriously. In those days, Boris had his good moments, but they were few and far between. He was mostly just unhappy and disregulated and demanding. Nothing was good enough. Nothing made him happy (except for riding in the car”. His self-harming was at an all time high and the only saving grace was bedtime, because thank God, Boris has always stayed in his bed at night. Every day I woke with dread. It was a dark time.

And now? Now those moments seem like ancient history. Now? Now I love my Boris/B-Mo/Beemchick/Borya/Borka/Beemo-my-Weemo like I never thought possible. I adore him. He blesses my heart and he is a gift to our family. With his small, broken body he is teaching us thankfulness and contentment and perseverance. But don’t be deceived, he isn’t perfect! He still loves to punch himself in the head whenever he gets the chance. He loves to throw fits at the dinner table and will throw his bowl and cup on the floor any chance he gets. He will pee his pants if he’s mad and all that jazz, but guess what? I’m not anything close to perfect either. I’m impatient and short and so so selfish. The difference is now, now we know each other. Boris is known. He is known and he knows us. We get each other and we know what to expect from each other. He has become a part of us- an irreplaceable member of our family, adored by all. After a lifetime of being treated like an animal, Boris is becoming human.

In Romaniv Boris was basically silent. Now I can say with confidence that Boris is THE LOUDEST member of our family. Oh.my.word. He has a lot to say and and is determined every day to make up for his 26 years of silence. He doesn’t say words, but we all understand his “B-Mo talk” just fine. We know what sounds are happy sounds, impatient sounds, wanting sounds, angry sounds, scared sounds. We know his favorite music and foods, and he has definite preferences in people. We know him, and being known is part of what has helped Boris in becoming human over this past year.

I am so thank that God has given us the gift of our Borya. I get teary just thinking of all the years we missed, but I’m so thankful for all the years to come. He is our sunshine blessing and our whole family is changed by him. At some point along the journey we realized we would be devastated without him.

So today we will celebrate our little Beemchick with cookies and hugs. We will kiss him and tell him how much we love him. He might not understand the big deal, but we do. We can look back and see a life redeemed, and we are thankful.

We’ll love you forever, our precious Boris. ❤️

Here’s Boris this morning:

And here’s a video we made 4 years ago. It makes me smile when I watch it now. ☺️

Ruslan and Anton: The Skinny

Well, we’re two and a half weeks into life with Anton and Ruslan, our new additions, and I stole away for a few minutes to update you all on how it’s going. I know many of you have prayed for us and journeyed alongside us for many years and now the answer to our prayers are sitting downstairs on the couch watching cartoons. 🙂 Crazy, right?

“How’s it going with the new guys?” That’s the question everyone’s been asking, and a question that is impossible to describe with just one word. In general, I think Ruslan and Anton are doing really well. We didn’t know them as well as we knew Boris before he came to live with us, so we really had no idea what to expect. Although, we have learned with Boris that it doesn’t matter how well you know someone in an institutional setting. Once you get them out and into family life you really never know what they will be like. Boris is much different than I expected. So, we knew that we could not predict how Ruslan and Anton would adapt to “life on the outside”. So far I’m pleasantly surprised.

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At their first wedding!

Physical.  Ruslan and Anton both seem to be in pretty good health. There are some digestive issues that we have to work out, and some concerning results of lab work we had done, but most of that will probably resolve itself in time.  One of Ruslan’s feet has a pretty major issue that would probably require therapy and maybe surgery to fix. He walks with a very big limp and it looks so painful to watch him do stairs. 🙁 But, he runs and jumps and dances with the best of them. When we are out and about and are going to be walking more than just a little bit we make sure to bring a wheelchair for him. Anton is a pretty big guy, who we’re learning, benefits from PLENTY of exercise. He was waking up all night long hootin’ and hollerin’ and waking the whole house with loud laughter, but that is happening less and less. He still wakes up pretty early, but 6:00 is much better than 3:00!!!  He’s on the right track. 🙂

Emotional.  As you can imagine, our guys are in need of a great amount of healing. We know that their paths to healing may be very long, so we need to be patient. They both lived at Romaniv for more than 20 years and we don’t know where they were before that. They have been neglected and abused in every way you can imagine, and beyond what you can imagine. Pain like that doesn’t heal overnight.

Ruslan is a pretty anxious guy. He is verbal, so that helps a lot in easing his anxiety. When we are out and about he always wants to know where home is and when we’ll go back there. He always needs to make sure everyone is present and accounted for, and hey, I’ll take any help I can get in that department! Haha.  I remember when Vladik first came to us he was the same way regarding asking about home and needing to know which direction home was located. Ruslan is also a pleaser and wants to make sure we are happy with him. He needs lots of affirmation. He loves to help around the house and one sweet thing is that out of all four of our boys from Romaniv, Ruslan is the only one who shows interest in Evie. He talks to her, strokes her little hands, and has even picked her up a couple times! Yikes! 🙂 It’s really beautiful to watch him interact with her.

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Anton is often in his own world and takes a lot more intentionality to reach. He is happy to sit and play with his spinner for hours on end, so we have to work to keep him active. He’s the happiest, most content guy who has begun to laugh A LOT. His laugh is so jolly! We are learning that Anton is sensitive to noises and he gets pretty easily agitated by Boris’ many vocalizations. So, we have to make sure to give him space in those times because he can get a little aggressive. He’s just repeating what he knows, so we have empathy for him, but he also knows it’s wrong to hit, so he’s learning the not-so-fun world of good ol’ fashioned consequences (ie. missing out on a treat, or sitting in a chair for a few minutes without his spinner). Anton has a lot of insecurities about food so we are working hard on eating slowly, not hovering around the kitchen every moment of the day 😉 , and eating appropriate amounts. He doesn’t speak often so it’s hard to know what’s going on in that brain of his!

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Integration into Family Life.  This is the fun one. Ruslan and Anton are doing really great integrating into family life. Ruslan already told me he wants to learn to speak English. I bet he will too! He is so stinkin’ smart. Ruslan likes to join in on anything and everything that is going on in the house. He loves to be a part of the group. Anton is happy to join in too, but just needs more help to do it. They both love music and playing ball outside. They enjoy going on walks and, of course, going anywhere in the car.

As a whole, I would say our kids are adjusting pretty well to having Anton and Ruslan in the family. We’re dealing with the normal meltdowns that come with a major life change- there’s no escaping that. But in general, I’m super impressed with our kids and their adaptability. They are heroes.

It’s been a pretty huge adjustment for Jed and me. Our hands are now extremely full(er) :). Anton and Ruslan are doing well, but they also require a lot of attention. We’re trying to nip institutional behaviors and teach new behaviors to replace the not-so-pleasant ones. That requires a lot of time. Teaching hygiene, manners, appropriate interpersonal interactions, safety…we are starting from the ground up and it’s pretty intense. Vlad and Seth have experienced some regression since their arrival, so we are working through that as well. And then there’s Boris…yeah, he doesn’t love sharing attention AT ALL, so he’s pretty challenging at the moment. Basically, in this phase of life, from the moment we get up in the morning till the moment we lay our heads down at night we have to be “on”. There are just a lot of moving parts around here and a lot people needing different levels of supervision and interaction. It’s a lot. More than ever we are aware of our deep need to abide in Christ. There is no way we can do this without His help.

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Evidence of the one time we took EVERYBODY grocery shopping. Not quite sure why we attempted that…hehe

Monday, Wednesdays and Friday we have one of our Wide Awake interns here helping us, and then Monday through Friday Kenny is here with us during the day as well. We’re working with the interns to develop an educational plan for the boys (Boris included), but it’s slow going. Right now they are still adjusting to life outside of Romaniv, and we’re okay with that. The interns and Kenny help us keep everyone engaged, active, and safe as they learn about the world around them.

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At the car wash with Kenny

That’s a glimpse into our life at the moment! It’s a bit insane and there’s definitely never a dull moment. Lots of laundry. Lots of cooking. Lots of noises. Lots of correcting and guiding. But also, lots of laughter. Lots of new experiences. Lots of love and memory making. It’s a raw kind of life. The good moments are so very good, and the bad moments are kind of horrible. It’s not all rainbows and unicorns- definitely not romantic. But, it’s the life we have chosen and our yes to the Lord. It is beautiful in it’s own way. We are learning about our own weakness and humanness and learning what it means to lay our lives down. Jesus is so faithful to meet us right where we are when we need Him most. I’m so thankful for that. I really am thankful for the opportunity to see my great need for Jesus every single day.

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Jed took the guys to the Black Sea!  

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Both guys love working out in the woodshop with Jed

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Thank you for loving our big ol’ messy family. We are so thankful for your love and support. Please, when you think of us, pray for us. We appreciate it so much!