Five Years!

Happy Ukrainiversary to us! Yesterday marked 5 years since the plane touched down in Kyiv and we began our new life. FIVE YEARS! Momentous. 🙂

So much has changed in the past five years it hardly feels like we are the same people that arrived in Ukraine with 12 suitcases and a guitar. For one thing, we’ve grown from a family of 6 to a family of 11. Wooooooah Nelly!

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Then

 

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Now

Last night we had plans to go out to a restaurant for a traditional Ukrainian meal, but one of our guys was having a rough one so we needed to stay in for the night. After we got the guys to bed we gathered the kids on our bed upstairs and took turns sharing something we each love about our life here in Ukraine. It was a sweet time. Many of your names were mentioned! Along this journey we have met so many wonderful friends from all over the US and around the world.

I shared with our kids a memory of our very first day in Ukraine. It’s a memory that about sums up our first several months here.

When we arrived in Kyiv on November 13, 2013 our dear friend, Olya, came with us from the airport to Zhytomyr to spend the first couple of days with us, to help us get settled a bit. Keep in mind that we knew ZERO language and were basically clueless about everything having to do with life in Ukraine. Sure, we had visited, but let me tell you- visiting another country IS NOT the same as setting up a life there and living there. The morning after we arrived we decided to hop on the bus with our littles in tow and head to the big grocery store to get some necessities. I remember arriving at the store, hopping off the bus and Addy, 9 years old at the time, saying “It doesn’t really seem that different here!” Oh Addy, bless your heart. 😉  We wandered aimlessly through the store, jet-lagged and overwhelmed. Three-year old Seth fell asleep in the grocery cart. We knew we needed diapers…and maybe TP? Why did we not make a list??? The kids were being super loud and all other children in sight were silent…we were stressed and didn’t know what any of the labels on the food meant…

I remember the chaos of figuring out money at the checkout and Jed vowing never to go the store again with all 4 kids. I’m pretty sure that at that time we felt like 4 kids was waaaaaay too many. Little did we know what the future held! Oy.

We got home from the store with as much as we could carry and, after unpacking the bags, realized we still had no idea what to cook for dinner. I think we ended up eating a lot of oatmeal in those early days. Ha! We learned much through trial and error, and still do. But it’s actually quite encouraging to think back and realize how stupid we were then! Hehe.

Now, five years later, we can fondly look back at those beginnings and praise God for ALL the amazing things he has done. When we arrived in Ukraine the dreams we had in our heart were not even legal. There was no legal mechanism for the deinstitutionalization of adults. We had no idea that two weeks after we arrived a revolution would begin. And as Ukraine endeavors to move toward the EU, our dream of deinstitutionalization is now a mandate. What are the odds? God is crazy good like that.

God had so many beautiful gifts waiting for us in Ukraine. Four of those gifts are currently downstairs drinking tea. 🙂 We had no idea when we first visited Romaniv that we were meeting 4 of our sons. Oh, and if you would have told me 5 years ago that we would have another baby, and that she would be born here in Ukraine, well, I probably would have spit out my coffee. Woooooooah, that was a doozy of a surprise. But, I love how God knows exactly what we need and when we need it. Our Evie blesses our hearts and brings us joy and healing every single day.

It’s funny to imagine that most of our team members were teenagers when we first moved to Ukraine. Kids! I absolutely love the team He is building here. I’m thankful that our guys are surrounded daily by people who don’t just tolerate them, but love them, champion them, and challenge them.

The days are long and often hard, but the years are quick. The greatest gift that God has given to me in these past 5 years is the gift of learning to lay myself down. Daily I’m confronted with my own weakness and my own brokenness. As we serve the broken hearts, broken minds, broken bodies here in our home, I’m confronted with my selfishness and general ickiness of heart. I thank God that He is moving the hearts of our family from charity to compassion. He is changing us all, from the inside out.

So, here’s to 5 more years of saying YES to the next thing. Thank you to each of you who have prayed for us, encouraged us, supported us. We could never walk this journey alone. Thank you for joining us in YES!

BeLOVE[d]

Photo highlights:

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My Littles, our first week in Ukraine

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Our first Christmas

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Boris and me, back in the day

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2014

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Christmas #2!

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Vladik’s Day of Freedom! 2015

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The day we got the keys to the Wide Awake Homestead! 2016

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A biiiiiiiig work in progress

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Wide Awake Homestead! 2017

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Boris’ Day of Freedom! 2017

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Welcome to the world Evie Joy 2018

 

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Ruslan and Anton’s Day of Freedom! 2018

‘s

 

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]

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!

 

BeLOVE[d]

I remember that night as clear as day. I remember the night we drove to the institution, knowing only that one little boy was dying and we had to do something about it.

He was new to the institution, having arrived the week before from the baby house. He was sick upon arrival and was quickly sent to the hospital. The hospital said there was nothing they could do for him: “His brain is dying”. So they promptly sent him back to the institution to die. We had seen him just the day before, and although we had never met before and had no baseline, we didn’t think he looked too concerning. I’m an RN with many years of experience and I never would have imagined that the next night he would be on his deathbed. He looked pale, stiff, eyes with circles under them from exhaustion, but many of our boys look like that and they are not actively dying. I thought he looked fragile, but I did not fear for his life.

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The first day we met

I was wrong. Because now that I know this precious, precious boy I can look back and see how very ill he was that night. He was a shell of a boy. His body was there, but his soul was just barely hanging on. The boy we saw that day should have frightened the heck out of me. He was oh so sick. We just didn’t know.

Late at night, the day after we first met him I was contacted by some ministry friends who told me that he was dying and the nannies didn’t expect him to live through the night. I was shocked. What???  I just saw him! How can this be? A few of us from the team rushed to the institution late in the night to see if there was anything at all that could be done to save his life.

It was a fight. It was a battle I’ll never forget. I remember standing on the sidewalk outside the Isolation Hall. All around us was dark, save the moon above us, the four of us were discussing/arguing about what to do next. We were panicked and knew time was not on our side. In the end we had to pull connections at the very top of the Ukrainian government to get our boy to the hospital. But, God made the way and to the hospital he went. From the local hospital he went to a regional hospital, then to a hospital in Kyiv- creating waves at every stop.

His story reached many people all over Ukraine. Top Dogs in the Ukrainian government took a big interest in his story and a fight for life became no longer just about him- but he began to represent the thousands just like him: forgotten, neglected, deemed unworthy, deemed a waste of time and resources. News stories were broadcasted and people rose up in outrage. This little boy whose life was miraculously saved that night in a rural institution became a type of poster child for orphan reform. His life became a voice for the voiceless.

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In the hospital in Kyiv

Eventually our little one, we’ll call him “Andy” (Addy’s name choice) 🙂 was released from the hospital and went to live with a sweet family from our church- an older mom and her two adult daughters. The plan was that he would live with them for a short time while his birth mom decided what she wanted to do: take him home, or sign away her rights and release him for adoption (returning him to institutional care was never an option any of us considered). The weeks turned into months and the months turned into a year, and the foster family fell in love. Andy has become a member of the family and he loves them just as much as they treasure him. And oh, how he has thrived in the light of their love.

The time has now come- the time we anticipated and dreaded all at once. The time has come to find our Andy a forever family outside of Ukraine. Mom decided that she is just not able to give him the care that he needs and deserves and she has signed away her rights. Our sweet foster family, as much as they adore Andy, recognize that he will never be able to live up to his full potential here in Ukraine. He needs therapy and medical attention that is simply unavailable here. They cry just talking about me writing this blog post, but they love him enough to let him go.

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So, I’m turning to all of you, asking for help. The time has come to find the family that is perfectly suited for our boy. I am absolutely confident that they are out there.

Let me tell you more about Andy. He is 7 years old and has lived most of his life in family. He lived with his mother and father until they felt they couldn’t care for him anymore, and then he spent a year and a half in institutional care before moving to live with our foster family. Because of that, he does not have the institutional behaviors you see in our boys at Romaniv. He has endured trauma, there is no doubt about that, but he has also known the love of a family and has been very well-loved at that!

Andy has Cerebral Palsy and this is his great challenge. He is not able to sit up, stand, or walk independently- but he sure wants to! He tries to mimic people and say words, but does not speak fluently. He is not toilet trained at this time. His muscles just do not listen well to his brain, so his ability to feed himself or do much independently is limited. He is so smart. He understands everything and knows what he does and doesn’t want. Don’t let his disability trick you- he is fully alive in there and I can’t wait to see what he has to say once he is given more ways to communicate. Other than his CP diagnosis, he is a fairly healthy boy. He gets the occasional respiratory infection, but he is growing and developing in a healthy manner.

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He wants to stand and walk so bad!

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Andy enjoys cars and trucks and toys of all kinds. He needs some help to play with them, but he does like to play. He loves to watch cartoons and to color…he enjoys age-appropriate activities, he just needs help in order to engage. His arms move unpredictably and the spastic nature of his CP makes intentional movement extremely difficult. He absolutely needs consistent therapy.  Andy is social and likes to be with people. He is firmly attached to his foster family and it’s easy to see how he loves them. He prefers them over anyone else and cries when he is separated from them. He even sleeps in their arms! I told you he is well loved. 🙂

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Andy is now available for international adoption and we are actively seeking a family. This adoption will be different than any other Ukrainian adoption I know of, because Andy will be adopted while living in the foster family- not from an institution. The high-ups in the government who personally care about him have worked to make that exception possible. The adoptive family will be well-supported in Ukraine as many, many  people have a very personal interest in Andy and his well-being. He is loved by many. The Ukrainian portion of the adoption will be well-supported by the government. The foster family is an absolute wealth of knowledge and would love to be a support to the adoptive family in whatever ways the family wants.  In other words, if you step off the ledge for this one you will not be alone. We are here for you and our love for Andy compels us to do anything and everything we can to make his adoption a success.

Saying yes to adopting Andy is no small decision. He will require a lot of care- especially in the beginning as he will be separated from everyone he loves. His care is physically demanding too. He’s getting to be a big boy and he can not care for himself at this point.

But, oh the joy. Oh.the.joy!

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Out of the many thousands of children in institutions all over Ukraine, God chose this one. He plucked Andy from his deathbed in the dead of night from an institution in the middle of nowhere and saved his life. He was mere hours away from dying- this beautiful, amazing, smart, happy boy was almost lost to us. But no. God saw him and acted. God has used Andy’s life to be a voice for others and I believe He will continue to do that.

He is one special boy and I have no doubt that his adoptive family will be blessed beyond measure by his life.

Will you help share him with the world?  Please share this post and please pray about your own response. Are you the family that is missing their son?

If you have any questions about Ukrainian adoption in general, or more specific questions about Andy you can email me at kjohnson@wideawakeinternational.org and I will be happy to talk with you. Video can be made available to interested families. 

The Path to Healing

Yesterday marked a month since our friend, Boris, came to live with us. The range of emotions has been vast. Too many feelings have been felt and too many thoughts have been thought. It’s good and bad and wonderful and terrible and easy and hard all within the same day. There’s no ABC instruction manual for taking in a broken 25 year-old who has lived a life of abuse and severe neglect. He didn’t come home with manual on how to help him heal or how to integrate him into family or how to, as a family, accept him and the new normal that he brings. We are all learning, and in the learning we are all healing.

We’ve been reading a lot of Jean Vanier these days. The wisdom he has gained over many years of living alongside people with intellectual disabilities is amazingly helpful for us- “The wisdom of tenderness,” in his own words. If you haven’t ever read any of his works I highly recommend them!

“As we share our lives with the powerless, we are obliged to leave behind our theories about the world, our dreams and our beautiful thoughts about God to become grounded in a reality that can be quite harsh. That is where we meet God, God who is Emmanuel, God-with-us. There God is present, hidden in wounded humanity, hidden in the pain of our own hearts.”
-Jean Vanier, The Heart Of L’Arche

That quote sums it up. I can stop writing right now. 🙂

But you know I won’t.

Boris has been fighting for survival for most of his life. He is a true survivor- that’s the only way he is still alive right now. He’s a fighter, and he’s a stubborn little dude as well.  Those traits served him well in the institution, and they will serve him well again, but right now, to be completely honest, they are serving to expose the weaknesses in my own heart. The struggle is real, my friends.

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In this next bit Jed gets a little nerdy as to how we understand Boris and what he does to process the world around him.

“For the past 19 years when he lived at the institution the only thing that Boris could do was survive and his survival put him in a state of fear and toxic stress. His life was not one truly lived. He knew what his body needed: food, warmth and safety- and he fought to get those needs met.  

That fight and that environment formed the physical shape of Boris’s body, but also the shape of his brain.  Our brains are absolutely remarkable at processing how we live as fundamentally social beings.

The physical, social, emotional and spiritual world around us and within us create the context where our brain processes, interprets and informs the rest of the body how to act and react (in that instant and next time).  

Our brains are profoundly complex and truly something to be marveled.   How our brains function is entirely state dependent.  If we are calm, we can think clearly and with full access to our intellectual capability.  Think of Elon Musk, sitting in his office, safe, healthy and satiated, dreaming and designing some cool future space travel.  Conversely, if we are in a state of terror, we react quickly and complex processing and abstract conceptualization become non-essential and inaccessible.  Imagine sitting on the kitchen table, trying to help your kid with his geometry homework while a hungry tiger circles.  

Imagine living between toxic stress and terror through your early childhood and on into adulthood, unsure if you will be safe or hurting, wondering if you will get enough food or if your tummy will ache as you try to fall asleep to the sounds of other boys surviving the same terrible reality.

The trauma of daily life and survival is the soil where Boris’s brain grew and deteriorated.  Instead of growing, his brain pruned away things that were of no use, the need for friendship and human connection, desire to play, to understand motion and movement, balance, motor skills and the sense of where his body is in the space around him.  

He reduced his life to mostly brainstem and cerebella functioning.  So imagine trying to process the entirety of your life through the part of your brain meant to maintain core functions, motor skill regulation, simple arousal responses, appetite/ satiety; chances are you might develop some behaviors that would seem strange and maladaptive to others around you.

Boris learned to pull his thoughts to focus, process his feelings, communicate needs and express himself through self-harming behaviors. While being with him in the institution we started seeing him process a bit through his limbic system, laughing appropriately and inappropriately, but development none the less. 

Ok, I’ll give you back to Kim.”

Now, instead of just surviving, Boris lives in a world where every need is met, and not only needs, but wants and desires are met as well.  Now we have a new struggle. Now Boris must learn to distinguish his wants and desires from his need. Because let me tell you, as a mom who has parented many a toddler, want and desire are not equal to need- even though the screaming 3 year-old may not be able to accurately distinguish the difference. Boris is a bit like a big 3 year-old at the moment- only one that has endured more trauma in his life than any human ever should. He wants things and he wants them NOW. His response to wanting things is the same as his response to needing something, and then the self-harm ensues.

If Boris is excited, he hits himself. If Boris is frustrated, he hits himself. If Boris wants attention, he hits himself.  He processes most desires, emotions, needs and requests somewhere between self-harm, disregulated motor skills, laughing, sweating, rocking, increased heart rate and chirps.  We have a feeling it’s only going to get worse before it gets better. He has to learn a new way of being, a new way of communicating, a new way of processing the world around him, and at 25 years old that’s a pretty tall order.

The response his self-harm evokes in me is surprising. It’s embarrassing and ugly to admit, but this is real life and we’re real people. Not one of us is perfect- least of all, me. I’m quickly realizing how much I see Boris’ self-harming, or lack thereof as a reflection of my personal success or failure. When he isn’t self-harming I feel good, warm, fuzzy, but when he hits himself I find myself feeling anger, impatience, and even disgust. And Jed just sits there like a zen master…grrrr.

Of course I don’t want Boris to hurt himself! But it’s humbling to realize how quickly my thoughts turn to myself in those moments of him harming himself. I feel failure. I feel disgust. I feel impatient. I wonder if I can really do this for the long haul. I, I, I.

Compassion and empathy have no room to grow in a space filled with selfishness and self-pity. It appears Boris is not the only one in need of healing.

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Boris’ brokenness is exposing in us the places in our own hearts that are broken.

In meeting his physical needs that he can’t meet for himself we are finding healing. In the pursuit of finding peace for Boris’ heart and mind, we must rely on the Holy Spirit. We need his wisdom so very much. We need strength, patience and love that can only come from above.

It’s easy, in the hard moments, to wonder if this is what it’s always going to be. Are things going to get worse and then better? Or are things just going to get worse and stay worse? No one can say. But does it make a difference? Is Boris any less worth it? Is the YES only worth it when it comes with obvious success?

What if twenty years from now it still takes 2 of us for every diaper change just to keep Boris safe? What will my soul be singing in those moments?  Will I have found contentment in the simple act of serving?  Will I be able to say “It is well with my soul”, or will I be bitter and resentful that my life took this turn?

The sooner we learn to truly walk in the Spirit, the better- for us, for our children, and for Boris. The sooner we stop looking at our own perceived successes and failures and start finding joy in the simple act of caring for our friend, the better.

This is a journey we can not walk in our own strength. We will totally screw it up. So each day we are learning and breathing and (hopefully) changing.

In the practical day to day of life with Boris the journey looks like a patterned consistent routine, loads of sensory integration, boundaries, creativity and good old fashioned parenting. When Boris is hitting himself because he doesn’t get what he wants he has to calm his body down, and only then, when he’s more calm does he get the thing he wants.  It means we have to maintain that calm presence, hands on him at all times. Sometimes it means leaving the table 3 times during a meal. Sometimes it means it takes 30 minutes to get out the door for a walk. But Boris will learn. Over time trust will build, new neural pathways will be built, and more understanding will come.

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When I choose empathy, when I remember where Boris came from and all he has endured and allow my heart to break again and again, rather than hardening my heart in the face of monotony and frustration, THEN healing can come. And when my heart is open to it’s own healing, only then can I be an instrument of healing to my dear friend.

So our friend is a challenge to us and a blessing to us in ways we could not have foreseen. May our hearts remain open and may the hard parts return to softness. May each of us see the loved ones in our lives as the beautiful treasures they are- worthy of our time, our love, our sacrifice, and our dedication.

BeLOVE[d]

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