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) ūüôā 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. ūüôā

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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. 

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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. ūüôā

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. ūüôā

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. ūüėČ 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. ūüôā 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. ūüė¶
  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. ūüôā¬†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!

A Matter of Perspective

We’re settling into a new state of semi-normal here at the Homestead. ¬†Grammy and Papa (Jed’s parents) are still here with us for the next few weeks and OH.MY.WORD. I don’t know what we would be doing if they weren’t here. ¬†I can’t even imagine- nor do I want to try! They have been such a huge help and blessing! I’m just not letting myself think past the time when they have to leave…or I might hyperventilate. We’ll cross that bridge later.

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Evie is the most peaceful sweet baby. She rarely cries…and maybe that has something to do with the fact that she’s never actually put down. Hello Baby Number 7! But really, she is a great eater, a great sleeper and she is easily consoled. Everyone is in love with Evie and she like balm to our hearts. Vladik and Boris don’t seem terribly interested in her, but they have had zero experience with babies so i’m curious to see if they develop an interest in her as she grows and becomes more interactive.

Boris seems to be settling in again and we are breathing a big sigh of relief. That was a rough one, Folks. ¬†We got home from the hospital and it was like we had to start at the beginning all over again, but with a deficit. He was frantic, didn’t know what he wanted, was self-injuring worse than ever before and was just overall struggling with a capital S. We know that transitions are hard for Boris and we know that there is so much going on that he probably doesn’t understand. We can say that we understand why he is struggling, and even empathize, but the moment by moment, day by day of helping him overcome is WOW.HARD.WORK. Many tears have been shed (on my part) and many prayers of patience have been uttered (on Jed’s part). All of Boris’ care falls on Jed as I’m recovering, and Jed has been a total rock star, but never have we needed Jesus more. We are nothing without Him, and sure enough, Jesus is coming through for us. He is giving us wisdom and it seems He is granting Boris some peace. We can see the light! ¬†Things are getting better! Thanks for praying. ¬†Please keep it up! We need it and Boris needs it. His poor little face is so bruised right now. God, give us wisdom.

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Boris likes the pressure of legs on him to help keep him safe ūüôā

It’s interesting how a change in perspective can really make or break things. Last week, when Boris’ struggles were at their peak, I was so sad and so very frustrated. I was thinking (and this is where I get real honest) “Here we brought home a new baby, this should be the most joyous time and Boris is stealing all the joy! Jed can’t even enjoy Evie because Boris demands every second of his time.” I was struggling with resentment, and in the worst moments, even some regret. But then I started to notice something. ¬†Every night Jed fell into bed, exhausted from a day of caregiving and creative thinking and love giving and behavior managing and took little Evie in his arms. I could see how her presence, her sweet baby smells and sounds were bringing healing to Jed’s heart. ¬†I sat there and watched the refreshing happen right in front of my eyes. She is like medicine for our weary souls. I’m realizing that God gave us precious Evie for just this moment. He gave us what we didn’t know we would need. Boris isn’t stealing the joy of Evie, Evie is bringing a special joy that our family needs to help us love Boris better. It’s all about perspective. How miraculous that God planned this ahead of time- He knew and planned the exact timing of Boris’ arrival into our family and Evie’s arrival into our family. The timing of both arrivals could seem inconvenient when you look with just human eyes, but the timing is actually quite miraculous. Our God doesn’t miss a thing. We are thankful.

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On another note, I’m sorry that I haven’t been able to write about Romaniv for such a long time. The institution has had a quarantine for several weeks (teams are not allowed to visit) and it will extend at least until the end of the month. We have been delivering diapers, but have not been able to visit the boys. I want so badly to be able to give you news on the boys you love so much, but unfortunately, quarantine combined with the end of my pregnancy has made any updates impossible. Hopefully quarantine will end soon and we can be back in action with our boys! I’ll keep you posted on that.

Happy Monday, All. May our perspectives that need shifting shift today. May we see our circumstances in the light of Jesus’ love and in light of eternity. Jesus is worth it all.

BeLOVE[d]

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Wide Awake Family Grew!

Last week our sweet Evangeline Joy made her appearance and we couldn’t be happier. She is already bringing us so much joy. ¬†She is like a sweet balm on our hearts.

More to come later, but I realized that I didn’t share her arrival on the blog, and I thought you all would want to know! ¬†Thank you for your prayers for a safe delivery and a healthy baby. Everything went smoothly and Evie is perfection.

We would sure appreciate your continued prayers for Boris. Jed and I were gone at the hospital several days last week and the transition has been difficult for him. One step forward, lots of steps back…sigh. The long road to healing can feel extra long some days. Please pray for Boris’ heart to find peace, for our other kiddos to have patience and grace as Mom and Dad’s attentions are divided yet again, ¬†and for us for wisdom in how to best help Boris- especially Jed, since pretty much all of Boris’ care falls on his shoulders at the moment.

Thank you all! More to come. ūüôā

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. ūüôā

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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