Category: Deinstitutionalization

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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 in 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]

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“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.

Waiting for Jed to sign documents Freedom!

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. ❤️

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10 Things I’m Learning

Every day is an adventure around here. You just never know what the day will hold! We are definitely in the trenches right now with our new guys, but are seeing little signs of progress along the way. There were a few weeks in there when I woke each morning with great fear of what the day would hold. I don’t feel that as often anymore. The days (and nights) are still unpredictable, but the better we know our guys and the better they know us, the more tools and relationship backbone we have when the rough moments come. Things are looking up, slowly but surely!

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Things I’m learning right now:

Routine routine routine. Nothing beats a good routine. Our guys thrive on it like nobody’s business. They seem so much more at peace when they know what’s coming next.

Routine routine routine can also turn around and bite you. In other words, a change up in the routine can really throw a wrench in their day. Yikes.

Double (or triple) every recipe, every time. 

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Keep the bedside loaded. Anton sleeps better if all his fidget spinners (even the broken ones) are at his bedside during the night. He just likes to know they’re there.

Time spent on character building is time well spent. When it comes to homeschooling, character training comes first. It is not a waste of time to spend time on character building. Good character is what it’s about! Who cares if our kids are super smart but lack character?!

A load a day keeps the mountain away. One load of laundry a day keeps things manageable. Two a day is even better, but at least one must happen or we drown.

Outsource cooking. Vladik cooks a big ol’ pot of soup every week with his teacher, we pay a neighbor lady to make lunch once a week, and I’m currently teaching Addy to cook dinner one night a week. In a world where most everything has to be made from scratch and I’m feeding 10-13 people 3 times a day, these kitchen respites are saving my life.

Spiritual Disciplines matter. We have no business walking into our day without putting Jesus in His proper place in our lives. We need him for every breath.

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Sleep is overrated. Between Anton’s middle-of-the-night roamings, Boris’ middle-of-the-night screechings, and Evie’s middle-of-the-night feedings I’m learning to hold on to sleep reeeeeeeeal loosely.

All people are precious. People will not know they are precious unless someone tells them and shows them they are precious. It’s easy to say, but harder to live. At times it seems our guys want to make themselves as unloveable as possible, but still, in those moments, we must show them that they are precious and loved. Every time they rage or yell or cry or harm themselves it is communication. In those moments they are crying out “Do you love me? Am I lovable? Do I matter to you?” Ruslan asks in words, “Do you love me, Mama?” Anton asks with his eyes, forehead touching mine, eyes searching. My prayer is that in those moments, no matter how tired I am, no matter how hard my buttons have been pushed, no matter if my feelings have been hurt- my prayer is that my answer will always be “Yes. You are precious and I love you.”

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The Lonely

Yesterday we got Anton and Ruslan’s medical histories from the institution. Oh my heart. Twenty plus years of their life, summed up in doctor’s chicken scratches on paper yellowed from time. We know the basics of how they spent the last 20 years. They sat on benches inside in the winter, and sat on benches outside in the summer. End of story. The medical files are the only hints we have of any significant life events outside bench- sitting.  They are our glimpse of our boys’ past- those, and a photo of each boy from time gone by.

My heart leapt and sank when I saw the photos. My babies! Oh my dear ones, I’m so sorry you had to wait so long. I’m so sorry you had no mama to comfort you, no papa to guide you. I’m so sorry you endured such abuse and neglect when you could not defend yourselves. You were so young, so small. My heart is broken for the little boy left at Romaniv alone and afraid.

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Ruslan, age 10

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Anton, age 16

Our life here is a full one; full of responsibilities and full of people. But our life here is also a lonely one. Our lives are completely absorbed with the care of people whom the society has thrown away. Our time, energy and love is wrapped up in people who are not accepted in this country. Our work is isolating. Couple that with language barriers and cultural difference, and then add the distance from loved ones…sometimes the loneliness of this life threatens to overwhelm.

The other night I was rocking Evie to sleep in a quiet, dark room. My thoughts were wandering and all of a sudden I was completely overwhelmed by loneliness. It washed over me like a giant ocean wave. I’d never felt anything like it. Evie wasn’t asleep, but I had to leave the room, lest my mind wander to a verrrrrrry dark place. I wept as I longed for family and friends far away. I lamented my lonely and often isolated existence in my Ukrainian village. I wished for the peer relationships with other moms that are non-existent at this time of my life when I need them so badly. If there ever was a “woe is me” moment- that was it. Not.pretty. Yikes.

I share that story not to bring pity on myself or to fill my inbox with messages from concerned friends, but to share what I am learning from it.

The feelings of loneliness I have are only the tip-tip-top of the iceberg of the loneliness our guys lived with their whole lives. In Anton, Ruslan and Boris we are seeing the effects of how 30 years of utter aloneness and helplessness shape a person. The effects are devastating. In my own loneliness, which greatly pales in comparison to the life they have known, God is granting me greater empathy and compassion for the boys I love so dearly.

I may feel alone, but-

I am surrounded by my family who love and care for me. They were abandoned by their family.

I chose this life that I’m living, and the sacrifices that come with it. They had absolutely no choice or agency in their situation. They were completely helpless. 

I have always been taught, and have always known that I was loved by God first, and also by many people. They had no one to teach them or comfort them. 

I have hope. I know that this work, this life is exactly what God has asked me to do and I trust that He will give me the grace to do it. They had no reason to hope. They lived in hell and were prisoners, innocent of any crime.

I do believe and trust that God comforted them while they were in the institution. I believe that He fathered them in ways we could not see. His word says that He is a Father to the fatherless, so I know it has to be true. At the same time, there is the reality that they were abused and neglected in every way- for decades. I can’t explain that paradox. I know both sides to be true and I guess I just won’t be able to make sense of it this side of eternity.

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Boris, age unknown

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Baby Vladik

Jean Vanier, a great man who has spent his life living with and loving people with intellectual disabilities, said “To be lonely is to feel unwanted and unloved, and therefore unloveable. Loneliness is a taste of death. No wonder some people who are desperately lonely lose themselves in mental illness or violence to forget the inner pain.”

Ruslan, Anton, Boris, Vladik. I weep over the many years they had to taste that loneliness. I look at the pictures of them as little ones and wonder at what could have been, had they not waited so long.

In Ukraine alone, there are thousands of children and adults who are helpless and alone in institutions. But it doesn’t have to be that way!

Do you have room at your table for one more? Do you have love in your heart to give? Could you reach out and give of yourself so that one more soul could know the love of a family? No child, no adult should be alone and if you have the ability to help, then by all means- do it. It really doesn’t need to be more complicated than that. If all that is standing in your way is your desire for your own comfort, then it’s time for something to change.

Adoption is messy and uncomfortable and hard. Let’s be honest, it’s so much easier to not adopt. Like 500% easier. But this life isn’t about doing what’s easier. It’s about chasing hard after Jesus and running the race full-on till the race is complete. If you are alive, then your race is not complete. If running hard after Jesus means laying down your life so that another may truly live, then just go ahead and do it. If adoption is meant to be your YES and you are still saying NO, please reconsider. Someone is waiting for your yes, and the sooner you can get to that someone the better. If adoption isn’t supposed to be a part of your race, that’s perfectly okay! Just figure out what your YES is and get busy doing it.

In this month of November, this National Adoption Month, please consider again if adoption should be your YES. Consider again how you can make space in your heart and home for the lonely. Consider laying down your life so that others may live. Say YES!

BeLOVE[d]

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Deinstitutionalization is no Joke.

It’s been about a month since I last wrote here. We’ve been a family of 11 for about 6 weeks now and finding time to come up for air these days is quite the challenge. 🙂 The past 6 weeks have contained some of the highest highs and the lowest lows I have ever experienced. Alllllllll the feels. All of ’em. Deinstitutionalization is no joke.

The more we know our guys, the more we grieve over the many wasted years, the many abuses and the neglect. And the more we know them the deeper we grieve for the ones left behind.

Ruslan, Anton, Boris- they are not children. They are men, each with more than 20 years spent wasting away, locked away, hidden away. The tragedy of it makes my heart ache. They have spent their whole lives living in fear, treated like animals, when all along they were worth so much more.

Sometimes I look at them and I see them at face value: men who spent their lives in a mental institution. They have B.O. They don’t close the door when they use the bathroom. They don’t wash their hands without a reminder EVERY TIME. Anton spits when he is angry and has been aggressive at times. Boris still hits himself waaaaaaay too much. They don’t sleep well (which means we don’t sleep well). They have major anxiety about just about everything. They are food-obsessed. Ruslan asks the same questions approximately 258 times per day. They wipe their noses on their pillows. Anton will wander off and has no awareness of cars or strangers. Boris will wet himself as a way of manipulating us or the situation. Ruslan has a tennis ball that he obsessively searches for in the night- just to make sure it’s still there.

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And on and on. So much brokenness. So many tears (cried by me, because they never cry,  they only laugh when they should cry).

Last week, at an especially hard moment, I looked at Jed and asked “How can we ever expect anyone to want to do this work with us? It’s just.so.hard.” And then Jed calmly reminded me that God loves our guys more than we ever could and this is HIS work. Any time we try to pick up the weight of this and carry it by ourselves we collapse under the weight of it. We have to daily, sometimes hourly, hand the weight of this work back over to Jesus.

Yes, the more we know them the more we grieve.

But, also, the more we know them the more we love them.

Ruslan sings himself to sleep every night. He sings about whatever is on his mind and it’s hilarious. He sings about the friends who will come over the next day, or about a girl he thinks is pretty 🙂 or about Jesus. And Anton!  Guys, Anton is talking. Like a lot! When he was in the institution I only ever really heard him say one word. If you asked him who loved him he would answer “God”. Now he talks so much. He talks in bed, on the toilet, in the bath, at the table. Mostly he talks to himself, but when you ask him a question he will often answer, and a lot times we can understand him!  It’s absolutely incredible to watch him explode with language. We hoped for that, but I’m not sure we really expected it to happen! Boris is growing and changing all the time. He understands English and I pretty much only speak to him in English now. He is so smart! Watching the three of them during worship at church is good for the soul. They all love music and each dance in their own way. It’s so funny and cute and soul-filling.

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When we lay ourselves down and choose to view our guys through Jesus’ eyes, with eyes of compassion, we can look past the effects of a life of trauma and see the little boy inside who just wants to know he is safe.

Our sweet Anton can get quite stressed in his new life. He spent the last 20+ years sitting on a bench, so it makes sense that he would get overwhelmed. Now we can see the signs: red cheeks and neck and lots of talking. He can get a bit aggressive when he is overwhelmed and that really scared me. My mind started racing “What have we done???” Then one day we realized that Anton is a 30 year old sized two year old. He really is!  He is developmentally stuck at about age 2 or 3- he’s just a big dude, so looks can be deceiving. Now we know when he has a tantrum we just need to treat him at his developmental age and all will be well, eventually.  Our sweet buddy, we love him so much. Now if he’d just sleep a little more…

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The kids are still doing well. Vlad has been reverting into some old behaviors, so that’s tricky, but I guess was to be expected. Yesterday we went to lunch and the three older guys stayed at home with Kenny and one of our interns. We asked the kids each how they are doing, what are some of the joys and struggles of having our new additions home. By and large, table manners were the biggest complaint (ha!) and hearing Anton talk was the biggest joy. I was happy with those answers. We can work on table manners!

The days are full, and often hard, but we also have a lot of moments of laughter. Most of all, we have love. So, we’ll just keep putting one foot in front of the other. 🙂

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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 of 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, Wednesday, 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 its 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!

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The Next Big Leap

Tomorrow is a big, big day around here. Tomorrow Ruslan and Anton, two more of our friends from Romaniv will come to live with us forever. Jed has legal guardianship of them, and now we are taking the next big leap to bring them into our family.

I’ve been posting updates about the process on our Wide Awake Facebook page, but I haven’t really had the time to write all about it on here. So, here goes!

The plan all along has been for us to be a pilot home for deinstitutionalization here in Ukraine. The family-style homes that we dream of don’t exist here (that we know of), so we are taking the leap to do it ourselves and see if we can be a model that Ukrainians can replicate. We don’t pretend to be, nor do we want to be THE great hope of Ukraine (that would be Jesus). This issue of institutionalized people is an issue that Ukrainian people need to solve. We are just called to be a spark. We are called to model a different way and encourage others to follow. To that end, we remodeled the Homestead house with the space to bring 3-4 boys/men from Romaniv to live with our family, to become members of our family. We already took guardianship of Boris back in December, and now Anton and Ruslan will round us out as a family of 11. We would technically have room for one more, but we feel that with Boris’ needs, plus the added blessing of our Evie, two more will pretty much bring us to capacity. 🙂

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Jed with Ruslan and Anton a couple weeks ago 🙂

Just like with Boris, we are now the legal guardians of Anton and Ruslan. We did not adopt them because they are already adults, so it’s not legally possible to do an adoption. Our Vladik is adopted (he was 15 when we adopted him, so legally still a child), but in our minds and hearts, they are all the same. It’s just different in legal terms. In our minds, once they enter our home they are our family till death do us part. The intensity level rises a tad when you are bringing in a 30-year-old, instead of a 15-year-old, but if this is what God is asking us to do our answer still needs to be yes.

People have asked how we chose Anton and Ruslan out of all the wonderful boys that we know and love at Romaniv. Wow, that’s a good question with probably kind of a vague answer. I guess we just knew! With Boris, it was no question. Jed and I both had a really intense attachment to him and it was just a “duh” that he would be the first. He needed out desperately and we knew he was meant to be with us. Then we started to pray and ask God who would be next. At first, we thought we would take the men who were going to be first to age out of Romaniv, but right now in our region, no one is being transferred into the institution, and no one is being transferred out. So age doesn’t really matter. We knew we wanted to take men who were too old to be adopted and we wanted men who had no family to go back to. In our minds, reunification with the birth family is the most amazing plan ever, and we want to advocate for that as much as possible. So, it was important for us to take men who would not have the opportunity for reunification.

Three years ago Anton and Ruslan were taken to a camp for children with special needs that our friends at Mission to Ukraine provide each year. I was on the “Romaniv” team with them and got to know them a bit. I’ll be honest that before that camp I had never noticed either of them at Romaniv. I absolutely fell in love with Anton at that camp. He has such a sweet spirit and boy oh boy, he is so abused at Romaniv. He is a whipping boy for the aggressors and spends most of his days rocking on a bench, probably attempting to disappear. At camp, his precious spirit came alive and it was such a joy to behold. I’ve had a special love for him ever since that time.

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Anton and me at camp (2015)

Jed and I both also recognized at that camp the awesomeness of Ruslan. He is so smart and full of joy. Then in the spring of 2017, Jed and I both had encounters at Romaniv with Ruslan that firmly placed him in our hearts. We each had encounters when we were present when he had been hurt by another boy/man and were able to be at his side to comfort him while he cried. We had the gift of holding him and giving him the compassion that he has lacked for so many years. When it came time to choose our guys, Jed and I both eventually, in discussion and prayer, narrowed it down to those two boys. And we have never swayed since. There are many guys that, for safety reasons, we could not have in our home with our children, and then there are many that we absolutely adore and wish so much could come to be a part of our family. But, we just don’t have space for everyone. We really needed God to speak to us, and we believe He has.

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Jed and Ruslan at camp (2015)

Anton and Ruslan are both more independent than Boris. Boris needs help with every aspect of life. Anton and Ruslan can feed themselves, go to the toilet independently, dress themselves, and walk. Ruslan has some mobility issues, so when we are out and about in town he’ll need to use a wheelchair, like Boris. Ruslan can speak, and Anton only has a couple of words. Anton will need more assistance with daily life activities than Ruslan, but in general, they will require less “hands-on” than Boris.

We understand the gravity of what we are about to take on. Well, I should say we understand it as much as we can at this moment! In reality, there is zero percent chance that we can predict what this transition will be like. We know that it is no small thing to take in two thirty-year-olds who have lived in hell for 20 years. We know they have been neglected and abused beyond belief and the path to healing will be long. But, we also know for certain that these two are meant to be with us. We have put safety precautions in place. We have had discussions with our kids. Our interns and Jed’s assistant, Kenny, will be helping us several days a week. Now all we can do is see how it goes, modify the plan as needed, and trust God to give us the wisdom we need. It seemed right to take Anton and Ruslan both out at the same time. Ruslan is a helper, and we hope he might be a comfort to Anton. Also, our family has been through A TON of transition over the last year and we just feel like we need to do this big transition and then be done with transition for a bit (if that’s even possible). We are eager to settle in as a family of 11 and get on with it!

I’ll be honest, this YES is the biggest yet for me. Yes, it was a lot to commit our lives to Vladik and Boris, but this feels even bigger to me. It feels scarier. Maybe that’s because now we have lived the reality of our commitment to Boris for several months and we are knee-deep in the challenges and reality of what that looks like. Life with Boris is not without joy, but it is a hard, hard road. I know that Anton and Ruslan will have their own challenges and sometimes I worry about what that will look like in day-to-day life.

BUT

We know that we know that this is what God has asked us to do, so we have to put our trust in Him and keep on trusting.  Just like before, the only thing required of us is the next YES. We don’t need to worry about the future because we’ll have the grace for it when it gets here. 🙂 I’m so excited to watch Ruslan and Anton become the men that God created them to be. I’m so excited to shower them with love. I’m so excited for our family to be complete.

Please pray for us as we take this big step. Pray for grace and peace and safety and health and most of all that God’s Kingdom would come and His will would be done in our home.

Thank you, Friends!

Follow Wide Awake on Facebook and Instagram to get more frequent updates about our new additions!  

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All About Boris: One Week Home

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.

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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.

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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.

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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. 🙂

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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.

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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.

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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.

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What Does the Next Yes Mean?

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.

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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.

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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!

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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!

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