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 🙂

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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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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All About Boris: One Week Home

On Christmas Day we had much to celebrate. Not only is Christmas always the best holiday EVER, but this Christmas we celebrated one week of having our sweet Boris home.

Yes! On December 15th the guardianship committee granted Jed’s petition for guardianship in a quick and easy 10 minute meeting. I realized that I said I would come back and share the news here on the blog, but I forgot! Sorry to keep you hanging. I share much more frequently on our Wide Awake Facebook page, just so you know. 🙂

We waited for the documents to be drawn up and ready, and then on Monday, December 18th we brought our boy to his forever home on the Homestead.

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I still can’t quite believe Boris lives with us! It’s unreal! I remember the many hours our team has spent sitting with Boris at Romaniv praying and crying over him. We cried over the injustice of his life and we prayed for his freedom. Now those prayers have been answered. It’s miraculous.

I would say that overall, Boris is doing much better than we anticipated! We definitely have some big challenges, and the road to healing will be steep and long, but I’m actually shocked at how well he is doing. For instance, I thought that we wouldn’t be able to take Boris out of the house for quite some time. I imagined that the stimulation of going new places would be far too much for him, but he has proved me wrong. He loves going in the car and we have already seen improvement in his ability to cope with new surroundings and new people. Yay!

I know many of you are very curious about every aspect of this journey, so I will try to be faithful to share. I also want to make sure in sharing that I always guard Boris’ dignity. He has had so much stolen from him over the years, I don’t want to be yet another person who steals from him. He deserves better than that. So, I will share our experience, but many details I won’t share.  This is Boris’ journey as much as it is ours, and I want to be very careful to show him respect. Thank you for understanding!

Medical. Medically, we don’t really have anyone to guide us. Boris is a total medical mystery. He is the size of our 7 year old, but Boris is almost 26 years old. The only diagnosis he had at the institution was “severe mental retardation” (not my words, just the literal translation). We have no idea what kind of condition he was in upon coming to the institution in 1998, so we really don’t have any way of knowing how much of the Boris we see now was preexisting, and how much of who he is now is caused by living at Romaniv for 19 years. I’m just assuming that the main things we are dealing with are a lifetime of abuse, neglect, and constant stress and trauma. There is no handbook on how to navigate the path to healing for someone like Boris so we are just praying for wisdom and creativity and taking it one day at a time.

I’m an RN, so I’m thankful for that background right now. We took Boris last week to get a bunch of lab work done, just for some baseline numbers. Some of the labs came back quite concerning, so we will need to dig deeper into that once we find a doctor that we feel we can trust with Boris’ medical care here. We also took him for a full abdominal ultrasound, just because his body shape is so strange and he is obviously not healthy. We just have no idea what is going on with those organs in there. The US showed some abnormalities that, again, we will need to address once we find a medical home for Boris’ care. Right now we are just doing these tests at a private clinic and just ordering them ourselves. Once we collect a few more specimens for evaluation we will present all our findings to a doctor and get recommendations on how to proceed.

We will be applying for a passport for Boris ASAP so that we can get him to Germany for medical evaluations there with some of our partners. He has a foot/ankle and arm (humerus) that were broken at one point and never healed correctly. The breaks really hinder his mobility, so we are eager to find out what a surgeon will say about that.

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Physical (Daily Life).  Boris requires pretty much full care. He can walk, but really only around the house. He has no stamina, pretty poor balance and the odd shape of his foot makes finding suitable shoes a real problem. We are borrowing a wheelchair from some friends while we look for a permanent chair that will fit him correctly. The wheelchair is not needed at home, but is a necessity when we are out and about. He really likes being wheeled around, so that’s a bonus!

I thought that food would be a big obstacle, but honestly, he’s done amazing! I remember Vladik being SO picky when he first came home. He would only eat pureed textures and if anything had much taste at all he would say it was “spicy”. I expected Boris to be even more picky, but boy has he proved me wrong! He hasn’t turned down anything! I’m so relieved about that. Sure, we have the food insecurities and the food obsession going on, but at least when he’s given food he’ll eat it. We all just have to be careful not to eat in front of him when it’s not his mealtime. If you eat in front of Boris you better be prepared to share! He is capable of feeding himself, but his coordination is quite poor and he crams the food into his mouth way too fast. It’s really not safe, so for now we are feeding him. Once he begins to learn that no one is going to steal his food and food will always be there when he wants it, we’ll start to work on independent feeding skills. At first he was turning down all liquids except soup, but already in one week he has changed his tune. He’ll drink basically anything except water at this point, so that’s a big victory!

Boris is not able to dress himself, so we help him with that. He wears a boys size 8. What a little peanut! He is so darn cute.

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Communication. Boris is nonverbal. He doesn’t speak at all. He also does not know any signs. It’s been fun to begin to learn his ways of communicating. Some of it we already knew just from knowing him at Romaniv, but he is already much more communicative, after just one week! Having your needs consistently met encourages communication. It’s beautiful. His main methods of communication are reaching for things, or walking to the room where the need can be met (going to the kitchen for food, going to his room when he’s ready for bed, going to the bathroom when he wants the toilet). He also makes eye contact and then makes a kind of grunting sound when he wants to communicate a desire. He shakes his head when he is saying no. Like if he is grunting to me and I ask him if he needs the toilet, he will shake his head, or he will get up and start to walk to the bathroom (if we’re lucky…toileting is a whole other beast we are tackling. Oy.).  It’s really difficult to know how much Boris understands. He definitely understands simple commands, and obeys them well. How much he understands at a deeper level, beyond just simple language is impossible to ascertain at this time. Only time will tell.

As you can see on his face, Boris has quite a history of self-harm. Years and years with almost zero sensory input can lead the boys to self-harm in order to get some sort of sensory input. Right now it doesn’t seem that Boris is hitting himself for any kind of sensory input. Right now it almost seems like communication, or just his way of processing his emotions. Like, if we tell him we’re going outside, he’ll get really excited and his go-to reaction is to hit himself in the head. Or when he first came home he would hit himself very aggressively when it was time for his clothes to be changed. He has already backed way down on that. We make sure that two of us are present for big transitions and one of us will be on “hand duty” to try to keep the hitting to a minimum. We know we can’t undo the past 19 years in one week, but we can sure try. 🙂

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Emotional. Emotionally, Boris was at the best he has been since we met him when we took him from Romaniv. His one on one time with his intern, Mira, has helped him to begin to develop. He is able to process this huge transition in a more positive way than he would have before. That really is one of the goals of the internship, and of our work at Romaniv, to prepare the boys for life outside of the institution. It’s awesome to be able to reap the benefit of the internship with Boris. Three years ago he would have been a complete disaster- he was self-harming almost constantly and his arms were always tied up to try to keep him safe. He’s come a long way since then. God’s timing is perfect.

Even though he can’t speak, Boris makes it very obvious that he is happy with his new life. He is so happy that today one of our kids described him as being “jolly”! Anyone who has met Boris before would be shocked to hear that word used to describe him. In this past year, at Romaniv, Boris began to laugh at appropriate times and in appropriate situations. He would laugh when his favorite volunteers were near or when he was taken outside, but it was not frequent. He was generally quite serious. Not anymore!  He will laugh appropriately at the kids when they do funny things. When he’s happy with his food he’ll make sure to catch your eye and smile and laugh. He loves music and smiles a lot when good music is playing. He especially smiles when he’s been gone in the car and realizes we’ve arrived back home. Ahhh, home sweet home.

A lot of times the laughing is appropriate, but it is also often inappropriate. Inappropriate laughter is laughter that goes on and on and on for no apparent reason. We’re talking laughter that goes from midnight till 2am without a pause…yeah, at that point we can safely assume he’s not just really, really happy.  We are aware that he is processing more complex thoughts and emotions through the limbic system.  As he heals and his brain reorganizes itself we hope to see his processes advance and change.  We’ve noticed that the manic kind of laughter happens more frequently when Boris has been overstimulated- maybe we were out and about too much, or had a houseful people (all things that are hard to avoid the week of Christmas). While Boris handles the activity and commotion quite well, he seems to pay for it later. So, we are trying to be more aware of that.

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Family. It’s truly wonderful how well Boris has melded into our family. All our kids have commented on how different he is than how they expected. He’s more mellow than they expected, but also louder than they expected (hello laughter!), and he has a lot more personality than any of us expected. It’s amazing how in the institution the boys are just shells of their true selves. It only takes love and a sense of safety for their true selves to start to show up. We’re just getting glimpses of the true Boris, and he is so fun! I love watching our kids delight in him.

Many people have asked how Vladik has reacted to having Boris in our home. He is doing great! We talked about it a lot before Boris came, so Vladik was prepared. He likes to tell everyone that he has a new brother. 🙂 People have asked if Vladik and Boris were friends at Romaniv, and truthfully, no, they weren’t. I would say that the majority of the boys at Romaniv do not have “friend” attachments to any of they other boys. Many of them function socially and emotionally at such a low level that there is just not the awareness of others to form any attachments. Vladik had a peer or two that he had some attachment to, but Boris did not. Boris rarely interacted at all with any of the other boys. Honestly, all he did every.single.day was sit. Sit and sit and sit. He did not have friends.

When Boris first arrived he definitely reacted to Vladik. I assume that he, of course, remembers him! Vladik likes to talk to Boris and seems quite happy that he’s here. Vlad doesn’t love sharing attention, so he’s made sure to make his attention grabs, but that is very appropriate for where Vladik is in his emotional development. He’s adjusting just fine.

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We are quite aware that this road to healing for precious Boris is going to be a long one. He has been damaged by others in every way possible. But I can honestly say that so far he has brought us immense joy. I honestly didn’t expect it! His laughter lights up a room. He is teaching our kids a new level of empathy and compassion and we are thankful for that. Taking care of him is physically demanding and requires creativity, but the feedback he gives is a gift. It is our joy to introduce him to true living.

Thank you so much for your encouragement and love during this time of transition. It blows us away how many people have reached out to cheer us all on. We need your prayers for wisdom and energy and creativity. We value your ideas and input. Thank you to every single person who has helped to make this dream possible. A life has been saved and you are a part of it. Thank you from the bottom of our hearts.