Wide Awake Family

Healing From the Inside Out

I (Kim, if you’re new here) wear a few hats here at Wide Awake International.

Mom of EVERYONE
Communications Director. If you hear some news coming from Wide Awake, it’s from me. Hellooooo!
Medical Director. Now that sounds like quite a lofty title that should belong to someone super smart, but alas, it’s just me.
Gardener-Extraordinaire. I gave that title to myself and I’m keeping it. 😆

The mom hat never comes off. It’s front and center at every minute of every day. For our kids, for our boys, I’m always mama. The Communications Director hat comes on about 3 times per week. Sometimes it’s a joy for me to tell our story and sometimes it feels like a bit of a drag, but whether I like it or not, that hat’s not going anywhere. The story’s gotta be told and I’m honored to be the one to do it (except on the days when I really don’t feel like it…hehe). The Medical Director hat is one that I have been hesitant to call my own for many years.

I’m an RN and worked for 12 or 13 years in a hospital in Oregon before moving to Ukraine. I’m a smart person with a lot of experience, but moving to another culture has a way of making you feel like the most incompetent, stupid person to walk the face of the planet. I went from working confidently as a charge nurse in a hospital to not knowing how to ask for the right size of bag for my groceries at the store. I went from being a social, outgoing person to a wallflower who was afraid of opening her mouth for fear of sounding like a toddler because the Ukrainian language was so dang confusing. That lack of confidence and growing self-doubt crippled me for many years. So when we started taking our boys out of the institution the thought of learning to navigate the confusing Ukrainian medical system and fighting for their health sounded like the equivalent of climbing Mt. Everest. I had no idea how to do it. I had no desire to do it. And I had no confidence that I would succeed in finding them help.

When we adopted Vlad we took him straight to the US to deal with understanding his medical needs there. And then, thankfully, the first 4 boys we brought out of the institution while in Ukraine (Boris, Anton, Ruslan, and Sasha) had no urgent health needs and I was able to dip my toes in the medical system waters without having to fully submerge. We could get by with a couple specialist visits a year and things were “good enough”. Honestly, the trauma they were all bringing to the table was much more urgent than any physical diagnosis. They were soooooo broken in their minds and hearts- their bodies could wait.

We got by pretty well the first few years and their bodies began to heal a lot, just by living in a loving, safe environment. We fed them a diet of healthy, whole foods. They got plenty of sunshine and fresh air. We gave them vitamins and paid close attention to food intolerances. We kept them on their meds and/or added some meds to help with some difficult behaviors. And they began to heal. My Medical Director hat wasn’t really required. The Mom hat was enough.

Then came Yaroslav and Vova and everything changed. Their medical needs were much higher than our other boys and the Mom hat would not be enough- not nearly enough. It was time for me to think like a nurse again and to take charge of our boys’ health, whether I felt qualified or not. So, with my trusty sidekick, Roma at my side, we dove on in- on a mission to get our boys as healthy as possible. And it has been an interesting ride.

The diagnoses we are addressing are (this doesn’t count Vlad who is currently in the US):

Cerebral Palsy x 3
Epilepsy x 2
Foot deformities x 2
Phenylketonuria
Williams Syndrome
Mitral Valve Regurgitation
Hypertension
Phenylketonuria
Gluten intolerance
Lactose Intolerance x 3
ADHD
Anxiety Disorder x 3 (really, all of them except Sasha would probably qualify here)
Microcephaly x 3
Scoliosis
Autism Spectrum Disorder x ???
Fetal Alcohol Syndrome

Plus, we’ve got a host of undiagnosed issues that we are constantly weeding through: frequent vomiting, chronic constipation, symptoms of PTSD (duh), skin issues, frequent bloating, gait problems, balance issues, improperly healed broken bones…

*In the hospital in Germany with Vova and Yarik*

As you can see, the needs have become significant enough that just acting like mom isn’t going to cut it anymore. First I took on more of a Case Manager role. We don’t have active primary physicians here who are, with a team, managing our boys’ care. It’s all on me and the more boys we have in our care the more organized and intentional I’ve had to become in that role. Roma and I began to search for doctors that we felt we could trust that would see the value of our boys and treat them well. We visited many, many doctors and rejected many, many doctors. We did bloodwork, tested urine, adjusted med doses, weaned off unnecessary meds, and more. We have been to countless specialists and have worked hard to improve our boys’ health, but unfortunately I don’t see much of a difference. In the spring I found myself increasingly frustrated at the perspective of the doctors we visited. They were doing their job, but I felt it just wasn’t enough. I couldn’t be satisfied, but didn’t know how to articulate what else I was seeking. We were treating all their symptoms and diagnoses, but their bodies were so deeply broken by the years of neglect and abuse, another approach was necessary for them to find true health. I realized what I really wanted was healing for them from the inside out. I also realized that if I wanted that for them then I was going to have to take the task on myself. No one knows their bodies better than I do and it is my responsibility to see them live up to their full potential. No doctor is going to dig deep enough. This is on me. Medical Director hat ON.

I began to research how to get smarter. 🙂 I thought maybe I should go for my Nurse Practitioner license, but dismissed that almost right away. It’s not something I could do while in Ukraine and really, it’s not the specialty I’m looking for. After more and more digging I started to become familiar with the world of Functional Medicine. The deeper I dove into that world the more convinced I became that the functional medicine perspective is what is needed for our boys.

What is Functional Medicine? The Institute for Functional Medicine defines it like this: “Functional medicine is a systems biology–based approach that focuses on identifying and addressing the root cause of disease. Each symptom or differential diagnosis may be one of many contributing to an individual’s illness.” Functional medicine looks at the root cause of disease, not just the symptoms. It’s a way of looking upstream, and then addressing issues all along the way while looking at the diet, environmental toxins, mental and emotional well being, and more. Our boys definitely need an upstream, whole person approach and I think functional medicine is the approach that will bring them into greater health. Functional medicine doesn’t replace traditional medicine, but compliments it and works along with it.

Functional medicine isn’t a thing in Ukraine, but I really believe it will help our boys and so I have decided to become a functional medicine provider myself. After graduating nursing school more than 20 years ago I told myself I would never ever go back to school, buuuuuuut, here I am, eating my words. Never say never! In just a few days I will head back to school as a part of the School of Applied Functional Medicine’s fall cohort. Eeeeeek! The program to become a functional medicine provider is a 2.5-3 year process, so it’s gonna take a while, but I’ve heard from graduates that I will be able to begin implementing my learning within the first 6 months, so that excites me. I don’t want to wait any longer for our boys to gain better health.

I’m eager to share with you the things I learn along the way as we walk this new path of healing for our boys. I’m also excited to expand my knowledge and become a more well-rounded medical professional. Our boys deserve the very best and I’m truly honored to do this for them. Here we gooooooo!

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Back to School 2023

Posted on 12 Days Ago by kimnjed

It’s that time of year again. I can hardly believe it! Summer flew by in a haze of peppers, pickles, puppy, and the pool. (see what I did there…hehe) For reals, it went by so fast! I’m not a mom that gets super excited about her kids returning to school. Sure, I can get more done for work when they are gone at school, but I like having them here! I love the freedom of summer. It’s bliss to not have to have them out the door super early in the morning. I’m a firm believer of letting sleeping children lie and it absolutely goes against my morals to wake my kids up bright and early each morning for school. I detest it! But, summer can’t last forever, so alas, we are crawling our way back into the swing of things.

This is our ninth year in Ukrainian school and we’ve come a long way, baby. It actually hurts my stomach to think about our first 2 or 3 years in Ukrainian school. We knew nothing, understood little, and every day was a lesson in how much we didn’t know. It’s not even just about the language (although most of it was about the language, let’s be honest) but it was also little things like, there are no school supply lists here. You just have to know what is required, and everyone knows the requirements because they never change. There are these little notebooks that the kids need for every subject with different types of lines on them. Slanted lines for the first couple of years while kids are learning to write, grid lines for math and other “mathy” type subjects, and then regular lines for other subjects. But that’s not all! All those different types of notebooks have different varieties with different numbers of pages…so you also need to know how big of a notebook to buy, depending on the grade and the subject. These are not things you ask about, these are things you just “know” because this is how it’s always been. Now it’s second nature for us and school shopping is a breeze, but man oh man, it wasn’t always that way.

Now, entering our 9th year in Ukrainian school and our 8th year in our current school, I can confidently say that we are solidly a part of the school community and our kids are just one of the crowd. They are just Hava, Seth, and Evie. They are not “The Americans” or something special and weird. I feel glad about that and proud of my kids for how far they’ve come. I’m also super thankful to God for leading us to our current school. My kids feel at home there and I know the teachers care about them. That’s not something you can find just anywhere.

*The one pic I took on the first day of school*

So how old are the kids and which grades are they in? For those of you who have followed our family for a long time I’ll share the deets, starting with the youngest.

Evie Joy is 5 years old and is in her last year of preschool/kindergarten. Kids start first class here when they are 6, so next year she will officially be in school. Crazy! The kindergarten is in the same building as the school and is a Montessori school. Evie loves to go there and I think it’s a wonderful environment for her. It has been a huge blessing to us to have her there.

Seth is 13 and is in 7th class. Seventh class is when they begin algebra, geometry, physics, and chemistry, so that’s a bit intimidating! Seth has an individual learning plan because of his diagnoses, and the class has an aide available for when he needs extra help. Last year he had his best year yet, so we are hopeful that this year will also go well. He has some good friends at school and socially he doesn’t struggle at all. He is the football star of his class, so as you can imagine, PE is his current reason for getting up each day. 🙂

Havalah is 14 and in 8th class. She doesn’t love school, but is smart and generally does really well. She has some good friends at school and feels her place there. She’s also really involved in our church and the youth group there. She’s doing great and is growing into a wonderful, beautiful person.

Ezra is 17 and will be a senior!! He is currently finishing up his last little bit of junior year work online and will start senior work in October. Our time in Germany really messed up his schooling trajectory, poor guy. But we are hopeful that with a lighter senior year he will be able to graduate next summer. He is doing an American program online so he can get a US diploma. Ezra is also working as an intern for Dim Hidnosti (the Ukrainian arm of Wide Awake) and is on the church youth group lead team, so he keeps quite busy. The kid is never home, I swear. But, when I do see him he is a delight. 🙂 I’m super proud of the man he is and is becoming.

Addie is 19 and just began her first college classes this week! My baby is all grown up. Addie is living in Montana with Jed’s parents and is starting the pre-nursing program at a community college there. She’s working as a barista and is excited to finally begin her journey to becoming an RN. She’s wanted this for a long time. Since moving to the US in the spring she got her drivers license, her CNA license, and her first real job. I’m so happy for her and proud of her and all the adulting she’s having to do with her parents so far away. We are really thankful that she is with Jed’s parents and has other extended family nearby to support her. She is not alone and that calms my heart a lot.

Vlad is 23(!) and is living with my parents in Oregon. He has been with them for a little over a year now and is doing really well. We left him there after our visit last summer so that he could get his teeth treated by an orthodontist. He has braces and his teeth have changed so much! This week he will have 8 teeth pulled and then I think we will see even more progress. Vlad works 2 days a week at a company that employs people with disabilities. He does landscaping and they told my mom he is their star employee. No one is surprised by that, right? Ha! Vlad loves to work like no one I’ve ever seen. He’s proud to earn his own money is thriving there with my parents. He recently got baptized at church and that was a big step for him. He’s spent the last few weeks with Jed and Ruslan in California and it has been a really special time for them all.

*Evie’s teacher sends pics sometimes. So cute!*

So, that’s the lowdown with our kids. This is the beginning of the second school year during the full-scale war and true to form, there was an air raid and they had to go down to the bomb shelter on the first day of classes. It’s routine now and no one is particularly bothered by it, but it’s always a reminder of the difficult and crazy time we are living through. I’m just thankful our school has a functioning bomb shelter so our kids are able to study in person.

Thanks for loving our family through all the years. Many of you have been with us from the very beginning when our kids understood nothing I was often wondering if we’d made the biggest mistake of our lives. Whew. We’ve all come a long way. Thanks for sticking with us!

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On Star-Gazing and Homesteading

Posted on 19 Days Ago by kimnjed

I didn’t grow up close to nature. Sure, we would go camping as kids, and those times are some of my fondest memories, but I wouldn’t say we were a “nature family” by any stretch of the imagination. We were more of an after-school activity, church, sports, Saturday-morning cartoon family. We had a couple cats when I was little, but they either ran away or we had to give them away when we moved…I can’t remember. And I had a few guinea pigs over the years. Fun fact: my first guinea pig’s name was Hudson Taylor. I was a weird kid, but I knew where my life was headed, I guess. What I’m getting at, is the extent of my childhood knowledge of farm life was limited to my heavy consumption of Little House on the Prairie (the TV series, not the books, thankyouverymuch).

When we lived in the US, before we were aware of Ukraine at all, Jed and I talked and dreamed about having some land, homesteading a bit. It wasn’t anything we were ever ready to seriously look into, but we dreamed of it someday in the future. I’m not even sure what sparked that dream. I guess we liked the idea of planting and growing things, of having space for our kids to run, of getting our hands dirty and caring for animals. Jed had a bit more experience with all that than I did, but not much. For whatever reason, it just sounded cool and it sounded very “us”. I liked to cook from scratch. We were always kicking our kids outdoors. We had backyard chickens. Baby steps toward the dream…

Then came that fateful night in the summer of 2010 when our eyes were opened to horrors of institutional life in Ukraine for people with disabilities and all other dreams flew out the window. There was the agonizing time of not knowing how to respond to the new information we had discovered. Then the decision to adopt. Then when that fell through, the first visit to Ukraine. Then the founding of Wide Awake and the selling of almost all our worldly possessions. Gone was our beautiful craftsman on a quarter acre (huge to us), our backyard chickens, our bunnies, our cook-from-scratch, grain mill-using, kefir-making kitchen. The homestead dream took a backseat to the urgent need to get to Ukraine and DO SOMETHING to relieve the suffering of those languishing in institutions.

Now we’ve been in Ukraine for almost ten years (pinch me) and this past week a thought hit me like a ton of bricks. Our homestead dream is coming, has come true. Say what???? Our land here in the village has slowly become the thing of our dreams. And it has happened so slowly, in the midst of so many more important things that I somehow seemed to have missed it, or forgotten that we had once, long ago dreamed of it.

When we decided it was time to buy land here, that it was time to start getting people out of institutions we debated about what was better- to be in the city or in the village. We didn’t want to hide our friends with disabilities away, out of sight, like they always had been, but at the same time, we wanted them to be able to touch nature, to walk freely outdoors, to have space to breathe. We eventually decided the village would be better suited for deinstitutionalization, so we bought a little bit of property and the Homestead took its first breath.

I always thought that we were in the village because it was better for the boys. And I do believe it is. I can’t imagine trying to do what we do in the middle of the city. But now I am starting to notice a sneaky truth, that God placed us in the village not just for the boys, but for me and Jed too. I truly believe that God remembered that long laid down spark of a dream and in his kindness he has made it a reality.

Living on the Homestead, working in our massive garden, caring for our chickens, goats, and dogs- it brings me so much life. It’s like therapy for me. For reals. Sure, with Jed gone it can feel a bit overwhelming, but I still love it so much and I know Jed does too. Many of our Facetime convos while he’s in the US consist of me showing him the garden and the animals. 😆 I like learning new things, trying new things, planting, growing, harvesting, and preserving our own food. I love watching baby chicks grow and change. Our one little chick that recently hatched has two mama hens and the three of them are just the cutest little trio there ever was. Now we have another mama hen brooding on 4 eggs and I can’t wait to see what will happen with her. She’s an aggressive one. Ain’t nobody gonna mess with her babies! One of our hens, Kelly Cluckson, broke her leg and I thought we were going to have to put her out of her misery, but after a few weeks of making sure she could be left alone with food and water I’m happy to report that now she can walk and jump and kinda/sorta limp-run. It’s so great! I’m so proud of her! 😆. Soon we will have horses and that will take everything up a notch. I have no idea what to do with horses, but I’m eager to learn. Dajana and I have a plan to take the horses to the forest after she teaches me to ride. Can you imagine? So cool.

One of my favorite moments of the day is late at night when I go out to the barn to lock up the goats and chickens for the night. It’s suuuuuuuuper dark. Our village doesn’t have street lights so the only light is from the moon. On clear nights there are so many stars. It’s incredible. I love to stand out there, look at all the stars, listen to the bazillion barking dogs. It’s like my soul can take a deep breath in that moment. In the midst of dealing with the trauma our boys carry, hard parenting moments, living in a country at war, our little Homestead brings me life and joy. It steadies me a bit. I’m thankful that God placed that kernel of a dream in our hearts all those years ago and that he brought it to fruition in a way we could never have imagined. He is so good and kind to us.

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Introducing, Dim Hidnosti Interns!

Posted on July 21 by kimnjed

It’s been a few years, but I am so happy to announce that a new cohort of Wide Awake/Dim Hidnosti Interns have officially begun their work. We have longed for new interns for a while now, but it just wasn’t the right time and the right people weren’t ready. But the time has finally come. We are so thankful and excited!

The vision of Wide Awake International is to bring dignity, love, and hope to people with disabilities in Ukraine. We do that, primarily, through the work of deinstitutionalization: bringing people with disabilities out of institutions and into family life. Our work, our vision, and our values go against the cultural norms here in Ukraine. For generations people with disabilities in Ukraine have been given to government-run institutions, hidden away from society, not valued, not seen, alone, and unloved. Our mission is not only to help the boys in our family and give them a better life, and it is not only to bring love and joy to our friends that remain at Romaniv. Our mission is to create a model of deinstitutionalization that can be replicated all over Ukraine. We can’t save everyone, but we can be an example. We can be a spark. We can be a model of change and hope. But in order for that spark to “catch” someone must raise up the next generation. Enter, the internship.

The goal of the internship is to raise up the next generation of Ukrainians who will carry on this work of deinstitutionalization. Whether they end up working for Dim Hidnosti in the future, or working with one of our partners, we desire to impart to them our values and our heart. And while they are learning from us they bring new life and energy to our team that we all need. The internship is definitely a win-win situation for everyone. Over the past 8 years we have had 2 successful cohorts of interns complete the 2 year internship. And out of those 6 interns, 5 of them are still active members of our team. They are our leaders, the rocks of our organization. One of the former interns, Mira, is now leading this new cohort! Full circle, baby! 😁

So, how does the internship work? Right now we have 4 interns and they are in the beginning of their 6 weeks of training. They train two days a week here at the Homestead with our team and one day each week they go with the team to Romaniv. Once their training is complete they will truly begin their work. They will work at the institution in Romaniv (where all our boys once lived) two full days each week, and then one day a week they will spend here at the Homestead planning their next week’s work and doing special projects with our boys here at home. At Romaniv their focus will be on the boys in the Isolation Hall. They have divided the boys up between themselves and will work one on one with each of the boys in their group. We have an assessment tool they will use to assess each of their boys and then will develop measurable three-month goals for each of them. The time they spend with each boy in the Isolation Hall will be spent working with them toward those goals. But the ultimate goal for the boys is to prepare them for life outside the institution. That is the “Hope” portion of the internship. We look forward to the day when each of our beloved boys will be free and cherished, within the love of a family. The internship helps them to prepare for that day of freedom. It is difficult work, but a valuable and necessary one. The day each week that they spend on the Homestead will remind them of what the future can look like when each of our boys are free. It’s important for them to see the full picture of deinstitutionalization.

The full internship program is two year long, but each of them have begun with a one year commitment. They will spend this first year determining if this work is really for them, if they see themselves participating in the work of deinstitutionalization in the future. It is a paid internship. The second year, should they choose to continue on, is more about nailing down which part of deinstitutionalization most interests them: PT, OT, Speech Therapy, Special Education, Social Work, Legal, Building, Organizational Development, Accounting, House Parenting…the list goes on and on. It literally takes a village to make this work happen and there are nearly endless ways to be a part of it.

Now that you understand more about the internship, let me introduce you to these amazing young people!

PS: They all refer to working with “Dim Hidnosti” and they don’t mention “Wide Awake”. Dim Hidnosti is the Ukrainian arm of Wide Awake International.

Sasha. We first met Sasha when he started attending our church’s youth group a few years ago. Later he became a volunteer at Dim Hidnosti. Sasha has lots of energy, loves Jesus so much, and brings loads of joy to everyone around him. We love having Sasha as a part of our team. He just “fits” with us like he’s always been here.

“My name is Sasha. I chose to be an intern because I started traveling to Romaniv as a volunteer and saw the need for help. It interested me and I wanted to help more.”

Masha. We have known Masha since she was just a little girl. When our oldest kids, Addie and Ezra, attended public school in the city, when we first moved to Ukraine, Masha was in their class. 🙂 Later, when our team member, Oleg, started working with us, we realized that Masha was his little sister! Masha also attends our church and has been Dim Hidnosti’s most faithful volunteer. She truly loves the boys and has a way with them that brings them peace. She is a natural with them, just like her brother, Oleg.

“My name is Masha. I decided to work for Dim Hidnosti in order to bring the boys joy and the feeling that someone is with them. Serving Dim Hidnosti and the boys at Romaniv is my goal. I know the boys are capable of more and I want to teach them. I will help make their lives better because they deserve it. Thank you, Dim Hidnosti for the opportunity to give them this chance!”

Ezra. Well, I have known Ezra since before he even took his first breath as a baby, because he’s my son! It actually came as a bit of a surprise to Jed and me that Ezra wanted to join the internship. But, of course we are so thankful, proud, and happy that he would want to join “the family business”. 😂 For real though, Ezra is a motivated and dedicated person. I know he will give his all to the boys and this work. What a joy to see our son join us on this mission.

“My name is Ezra. My parents are the founders of Dim Hidnosti, so I kind of grew up in this organization, but a year ago I would have never thought I would be an intern. A few months ago I started visiting the institution at Romaniv and realized that I have a heart for the work that our team does there. I want to spend more time with the boys. I became an intern to serve the boys and to find out if this work is right for me.”

Vlada. We first met Vlada just a few months ago when she realized, through a crazy sequence of events, that our Yaroslav was her long lost brother! If you haven’t read that made-for-the-movies story you should go read it here. Anyway, almost immediately after discovering that Yaroslav was alive and well with us here on the Homestead Vlada started spending as much time with him as she could. She became interested in our work and started volunteering around the Homestead. It is an absolute miracle to have her as an intern. I mean, who could have predicted the incredible story God started when He asked us to take Yarik out of Romaniv and into our big Wide Awake family. He was not only changing Yarik’s life, but Vlada’s life too. We are so, so happy to have her as part of the team.

“My name is Vlada. After my first trip to Romaniv I was not sure that I would be able to be there, that I would be able to help. But after I went a few more times everything changed. I realized that I wanted to help the boys and improve their lives, to give them love and support. Because seeing their smiles and how happy they are to see us, it gives us and impetus to improve their lives. I want to show them life from another perspective, not just what they see at Romaniv. I want them to see that they can be treated better. I thank God and Dim Hidnosti for the opportunity to do this.”

We would really appreciate your prayers for our interns as they begin this work. It will require a lot from them, emotionally and physically. There will be times when being at Romaniv will bring them great joy, but also times when it will be so terribly painful and difficult. Please pray for them for wisdom, creativity and insight, perseverance, and strength. Let’s goooooooooo!!!

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All About Sasha: Two Years Home!

Posted on June 3 by kimnjed

This week marks two years since Sasha joined the big Wide Awake/Dim Hidnosti family. I gotta say, it feels like much longer. A hundred lifetimes have passed since then and it seems like our Sashulya has been with us forever. Today Masha reminded our team that it was Sasha’s two year anniversary, and looking back at the photos of the day we brought him home- it’s like a dream. So much in our lives has changed since then.

Because Sasha was moved out of Romaniv to a different institution during COVID and visitors were not allowed, by the time the guardianship was in the approval process and Jed and I were allowed visitation, we hadn’t seen Sasha in more than a year. He acted like he didn’t know us at all and we really didn’t know him well anymore either. We had to start our relationship over completely and that was a very different situation than with all of our other boys whom we visited with often and felt we knew very well. I remember feeling so sad for Sasha because I knew he didn’t remember us well and was confused by all the changes. I desperately wanted him to know that all was well, that his life was about to change for the better, but his understanding of the whole situation was very limited. He was afraid of everything, all the time.

I remember the day we finally, after a million delays, brought him home. The whole team was so excited. We all breathed a big sigh of relief- our boy was home. Now his life could truly begin. In those first days Sasha would just crouch on the floor, making his body as small as possible. He wouldn’t respond to his name at all and didn’t want any physical contact. He was so much in his own little world that he would literally walk into walls. He was a shell of a person. Max and Morgan, an American couple who were living in the duplex as house parents, were the perfect landing spot for Sasha. They poured all their love and attention on him and he began to thrive. It was like we had a newborn baby with us and every little new thing Sasha did and every discovery he made was lovingly documented by our devoted team. It was a precious time.

Now, two years later, Sasha is a tall, almost-17-year-old with a super loud voice and a very strong will. 😆 Gone is our scared little boy. We’ve got a full-blown teenager on our hands now and I think he’s going to be an actual giant. He’s huge and it doesn’t look like he’s going to stop growing anytime soon. Sasha often seems lost in his own world, especially when he has a water bottle or one of his favorite toys in his hands, but when he wants relationship he is the most loving, affectionate cuddle bug there ever was. His smile absolutely lights up the room and everyone who knows him falls in love with him. He’s not afraid to show us what he thinks by batting us away or even falling onto the floor when he doesn’t want to go somewhere. He’s heavy and I think he knows it. 😂 But we choose to recognize that he is communicating, showing us his likes and dislikes and I’ll take that any day over a scared little boy crouching in the corner.

Sasha loves music, especially old Ukrainian and Soviet children’s songs. He is musical and even though he doesn’t speak, he can sing the words to a couple of his favorite songs. Sasha likes water (if it’s warm) and riding in the car- but only if he gets to sit by the window! He likes to kick balls and play in our little ball pit. He’s very tactile and when he’s in the mood he really loves hugs.

Sasha’s diagnoses are Autism Spectrum Disorder and Epilepsy. He also has microcephaly and Raynaud’s Syndrome. Over this past year or so we have struggled to get his seizures under control. The doctors think this is mainly because he is growing at such a rate that we haven’t been able to keep the medication at a therapeutic level. Just last week he had an overnight EEG and we are now waiting to hear the results. Overall, his health is good, we just need to him to slow down on this growing for a bit!

Oleg and Masha are the house parents in the duplex now and they live with Sasha and Anton. It’s so cool because years ago when Masha was an intern at the institution, Sasha was one of the boys on her caseload. Now she gets to live with him like a mama. God’s plans are the best.

We love our Sashulya deeply and are mega thankful he is a part of our family. I’m just so glad he isn’t afraid anymore. I’m so happy to know that every single day he is surrounded by love and is safe. Sasha is precious and our big Wide Awake/Dim Hidnosti family adores him. Happy 2 years, Buddy!

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