YOUR QUESTIONS ANSWERED: Vol. 1 and 2

Hi All!

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

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

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

 

“International B-Mo Day”

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

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

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

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

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

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

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

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

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

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

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

Here’s Boris this morning:

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

Ruslan and Anton: The Skinny

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

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

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At their first wedding!

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

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

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

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

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

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

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

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

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

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At the car wash with Kenny

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

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Jed took the guys to the Black Sea!  

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Both guys love working out in the woodshop with Jed

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

 

Our Ukrainian Birth Story

Can you believe our sweet Evie Joy is one month old today?! In the past I’ve not been a fan of the newborn phase and have wished it away in search of more sleep. But these days I find myself wishing for time to slow down. Our precious Evangeline is just the sweetest little thing and I know she needs to be our last, so I want time to sloooooow down so we can savor every bit of her baby-ness. Sometimes it feels like no one in the world could ever love their baby the way I love this baby. She is such an incredible gift.

I promised I would share about the experience of our only Ukrainian birth, so here I am, as promised, attempting to write it out. This is a tricky one. I don’t want to sound at all like the US system is SOOOOO much better, or like the way it’s done in the US is the only right way. Because honestly, I don’t believe that. I think the US medical system has a lot going for it (ie…money), but I definitely don’t think there is only one correct way to do things. So, even though I can’t pretend the US is the only right way, it is the only way I know. It’s where I was trained.  It’s where I worked for 13 years. And it’s where all my other babies were born. You only know what you know. 🙂

The following is my experience. It’s what I felt and saw and lived. It may be different than another’s experience, but it’s mine. So take it for what it’s worth.

Evie’s entrance to the world was planned for a Monday.  It was a scheduled c-section, and my fourth (which is pretty rare here), so the doctor had me spend the last few nights of my pregnancy in the hospital in case I were to go into labor in the night. We had previously purchased all the supplies for the c-section at the pharmacy across the street and had them in a duffle bag at the ready. A nurse came in to my room the night before the c-section and said “Okay, you have a c-section tomorrow.  Tonight you need to give yourself an enema, and then give yourself another one in the morning.” Uh…hold the phone. Things were about to get real. Hehe. I’m no stranger to enemas (never thought I’d write that! Ha!). I’ve given a lot of enemas in my day. But I’ve never given one to myself– especially when the only toilet available was a communal toilet down the hall! Yeah, that was tricky. Let’s just say I don’t wish a shared bathroom enema experience on any of you.

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The list of anesthesia supplies for Jed to buy the morning of surgery

The next morning Jed arrived around 8:30 and we waited for the party to start. Unfortunately it didn’t start out too great. A grumpy nurse was on duty and was telling us all these instructions that we didn’t understand.  Something about Jed taking all the surgery stuff somewhere and me waiting in my room, but we were sure the doctor had told me to go with Jed… We were all confused and she was annoyed at our lack of understanding and I started crying and it was a bit of a mess. To be fair, I was totally freaked out and hormonal and it probably wasn’t a truly cry-worthy scenario. I’ll own that. 🙂

So Jed was gone to who-knows-where with the supplies and I was sitting on my bed, crying, waiting for someone to come and tell me what to do. After a bit, a super kind lady came and took me through back hallways and staff elevators to where the surgery would take place. The staff elevators are so interesting! Each elevator has an older lady sitting in it whose job is to operate the elevator and make sure no unauthorized person uses it. Each tiny elevator has a chair and a little table in it where the operator sits and drinks her tea, waiting for the next customer. Fascinating. Anyway, my guide saw I was crying and did her best to calm my fears. “I’ve worked here 30 years!  Everything will be fine. Don’t cry or your baby will cry! Everything is fine. Today you meet your baby!” She was a sweetie, but I could not stop crying! Geez Louise. I think all the worrying of the last 9 months had just built up and spilled out in that moment. I was a mess until I saw my wonderful doctor. She is the mom of our dear Kenny, and her presence totally calmed me.  Instantly. She put her arm around me and the familiarity of her just made all the difference.  I was never so thankful that we had chosen a non-stranger to deliver our baby.

They brought me to a room with a bed and a changing table. Jed was there! They had Jed change into clean, comfy clothes and laid out all the supplies we had brought for the baby. Directly across the hall was the operating room. The plan was that as soon as the baby was delivered they would take her across the hall, assess her, and then put her on Jed’s chest, skin to skin, while they finished operating on me.  I can’t tell you how it eased my mind to see where Jed would be with the baby and to know he would instantly be with her.  I absolutely loved that plan. High five Ukraine!

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Everything laid out and ready for Evie’s big debut

Then they sorted through our duffel, digging out all the supplies we had bought for anesthesia and the operation and took them across the hall to the OR (YIKES…good bye sterile field…I tried to not think about that too hard…).  Then it was goodbye Jed, and off I went to have a baby! It was so strange that he couldn’t be with me. It was the only birth I’ve ever experienced without him.

The anesthesiologist numbed me up and then, before I knew it, we had a baby! They pulled Evie out and the anesthesiologist, who spoke a little English said “Gel, gel!”  I was like “Girl?  Did you say girl?” Then my doctor announced in Russian that we had a girl and the tears started flowing again. A girl!!!  Wahoooooooo!  We totally wanted a girl but were afraid to get our hopes up.  Evie cried right away.  They showed her to me super briefly and then took her straight to Jed. I just laid there crying tears of joy and wondering about Jed’s reaction to our perfect little baby. Jed said that he was pacing back and forth outside the operating room waiting for news when he heard a cry.  Then some random lady came out into the hall and just matter-of-factly said “Girl” in Russian and walked away. Hahahahaha. Hilarious. I have to say that the surgery itself seemed no different to me than my previous c-sections in the US. Everyone was very professional and I felt like I was in really good hands. Again, high five Ukraine!

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Light showing a surgery in progress- eeeek!

Evie (who had no name at the time) was with Jed and I was moved up to a recovery room. After about an hour there they brought Jed and Evie up to me. I was to stay the first night in that room with Evie, but Jed wasn’t allowed to stay.  There really wasn’t any room for him there anyway. There was just a bed and then some old equipment stored in the corner. I’ll be honest, that night was the most miserable of my life.  It felt about a million hours long. I was in a bed that had to stay totally flat (it didn’t raise anyway) with zero pillows and no side rails, and Evie with me in bed.  Try breast-feeding a few-hours-old newborn while lying flat on your back with no pillows and no help. Yeah, tricky is putting it lightly- and this wasn’t my first rodeo! A few hours into the night a nurse came in and said “You need to start turning from side to side.” I knew I needed to start moving a bit.  I knew it was important and I didn’t want to lay only on my back. But I had just been cut open and now I was supposed to get over onto my side with no pillows and no side rails and no help and with a baby in my arms! It was quite a feat, but somehow I managed without dropping baby on the floor. Hehe. I think I deserve a prize. Another strange thing about that night was there was no call light. Soooo if I needed help I just had to wait for someone to come check on me, or yell. I preferred to just wait and silently will them to come by my room.  Luckily I had no emergencies. 😉 There was also curtain and my door was open wide to the hall all night. Hello world! No high five for that experience. It was kind of terrible.

The next morning I had to show I could get up out of the bed and then once Jed arrived they allowed me to be moved to a regular room. Hurray! We had paid for a private room so that Jed could stay with me and Evie at night. I’m so glad we did! The room had an entry area with a couch where Jed slept, a little mini fridge and a microwave. Then through a doorway was a changing table, a bed for me, and a bathroom with a toilet, sink and shower. It was a really good setup. A nurse and doctor would come see us in the morning and in the evening and that was it, unless I asked for pain medicine. No one ever came in at night. So interesting! They really kept a much looser eye on us than after a c-section in the US. They took my vital signs twice a day and had me take Evie’s temperature twice a day.  They would just ask me if her temp was normal, if she was eating, and what color her poop was- the basics. 🙂 Since I knew what I was doing I actually really appreciated being left alone. But, I think if I had been a first time mom I would have been a bit freaked.

The food situation was interesting.  We learned that I needed to have my own set of dishes if I wanted food. Every morning, midday and evening someone would come along, knock on the door and say “Breakfast!” or “Dinner!” and I would need to take my dishes to the hallway where a lady with a cart would give me soup and tea. Each day, three times a day it was like a chicken broth with carrots, potatoes, and a little buckwheat or other grain in it. Jed would bring me food from home to supplement the meals. Each day a doctor would tell me what different foods I could add to my diet.  But she was clear on a few things: No fresh fruits or vegetables (only cooked), no fried foods, nothing sweet the first two days (not even sugar in my tea), and nothing red. My doctor was so sweet. She brought me homemade soup from her house, compote (stewed fruit juice) from her home, and some tea cookies that I could have on the third day. Her thoughtfulness really meant so much to me. I’ll be honest though, I totally didn’t stick to their food rules. I just did what we do in the US and ate what I felt like eating. Shhhh…that’s our secret.

There was no wifi at the hospital and I don’t care for Ukrainian TV, so I listened to a lot of podcasts, read some, and mostly just rested and marveled over our sweet baby.  The hospital was on quarantine because of a lot of sickness in our city, so no visitors were allowed- only Jed. He spent a few hours at home (mostly to help care for Boris) every morning and evening, so I had a lot of time just alone with Evie.  It was a completely different experience than my previous births when we had loads of visitors and family members and American TV and wifi and all that.  It was much quieter and simpler. I missed my parents so bad, and it was a little sad at times, mostly when Evie was so cute and I had no one to show her off to, but it was mostly really beautiful and special. The simplicity of it was peaceful and I needed that. We had 5 days in the hospital and it was just the right amount of time.

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Hurray! One month old!

The main differences I can point out between my birth experiences on both sides of the ocean:

  1. Pain Control. Ouch. Ouch. Ouch. The big push after a c-section in the US is to get the mom on oral pain meds as soon as possible. At the hospital I worked at that usually included a combo of Tylenol, Ibuprofen, and Oxycodone. That has worked like a dream for me in the past. But, alas, it was not to be in Ukraine. From the first day post-op I was only given pain meds via a big ol’ shot in the behind. Oral pain meds were not an option. The only med I was given after the first day was a med similar to Toradol (kind of like a shot of Ibuprofen). It was given every 8ish hours, when I asked for it (not scheduled), and not at all at night. Did I already say ouch? ‘Cause, ouch. 🙁
  2. Call Lights. The Recovery Room and our regular room had no call lights. It was fine for me, but I always wondered what would happen in case of emergency???  The nurse in me kinda wanted to freak out over that.
  3. Security. In the US, in the hospital I worked at, every patient has a name band and every baby has a name band and the numbers match each other.  Each newborn also has a security band that alarms if they are removed from the postpartum floor.  Before giving any medications the nurse has to scan the armband and then scan the barcode on the med and all of that jazz.  In Ukraine I had no armband, no patient identifier at all.  Evie had a little paper band on her ankle the first day. No one ever checked my identity or anything. I imagine that’s how things used to be in the US, but I never experienced patient care like that as a nurse. Interesting.

There’s so much more I could write, but those are the main things that stand out. My only real complaint is regarding the pain control. My recovery could gotten a much quicker start if I had better pain control, but such is life. I survived. 🙂 I will say that in general, I had a great hospital experience. It far surpassed what I imagined it would be. The staff were kind, and reassuring when I had freak out moments. They were waaaaaay more hands off than in the US, but when I did need something they were quick to respond. My doctor was fantastic and I have nothing but good things to say about her. Sure the conditions weren’t as fancy-shmancy and there weren’t any amenities to speak of (ie. room service, massages, lactation consultants, wifi), but I had what I needed, and besides that first night I never felt like I was lacking care.

Thanks everyone who prayed for us throughout the pregnancy and on the day of delivery.  We are truly blessed by our sweet girl and I’m super relieved to have all that surgery business behind me!

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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