May is the month for all the medical things to happen (or as many as I can fit into the schedule). It’s the month when my nurse hat comes on full-force and stays on for the whole month. It’s also the month when I feel like I basically live at our local clinic. It becomes my second home. 😆 This May is special because my friend Christina, also a nurse, is here visiting and has been my right hand lady during all the visits. Christina and I worked together on the pediatric floor of our local hospital in Oregon for several years before Jed and I moved our family to Ukraine. She has been a faithful supporter of the work all these years and finally got to make the long trek here to visit! Her timing was perfect and she and I have been quite the nurse team the past couple of weeks. We’re getting alllllll the things done. 💪

Ukraine has socialized health care, so while it’s possible to take our boys to the public clinics for (almost)free, we take them to a private clinic for most of their specialist appointments. In the public clinic the vibe is very institutional and every time we go there the boys show us with their bodies that they reeeeeally don’t like it. The smells, the paint on the floors and the walls, the sounds, the attitude of the majority of the personnel, is all reminiscent of the life they left behind. When we bring them into public clinics their bodies tense up, their negative behaviors ramp up, and we have found that, in most cases, the money we save by going the free route is not worth the negative experiences that generally occur in those appointments. There are good doctors to be found in public hospitals and clinics, for sure! But they are hard to find and the number of bad experiences we’ve had over the years has made me quite weary of the search. A couple of the specialists we see regularly are at public clinics, but most are not. It’s just not worth the heartache.

Finding doctors and therapists in our town that see our boys as humans, as valuable, and worth their time and effort has been a huge undertaking. I am not willing to settle for doctors who merely tolerate our boys’ presence. I need and insist on doctors who are willing to help, that have compassionate hearts and don’t see our boys as mere problems to be dealt with, but as people worthy of a dignified life. For starters, I look for doctors who will greet our boys and attempt to talk with them. If a doctor only looks at me in an appointment and acts like the boy (who is the actual patient) isn’t even in the room, then that doctor is not for us. Peace out. ✌️ If a doctor finds delight in our boys and shows curiosity and empathy, then we have found a treasure and will gladly pay the money to come back to that doctor again.

Over the years I have built a repertoire of specialists whom I trust and who know our boys, and over the past couple years I have been able to develop relationships with them. I’m thankful for those doctors who truly see our boys. Of course it’s a process and we still have to big-time speak up and advocate, but we’re getting there. Little by little the doctors are learning what it means to treat our boys with dignity, love, and hope. Let’s be honest, we are all learning together. 💙

Each of our boys has a “family doctor” (a general practitioner), but they rarely see that doctor because most of the time they are need of specialists. They are rarely sick, but they each do have chronic diagnoses that require yearly check-ups, at the minimum. We regularly see a neurologist, cardiologist, gastroenterologist, geneticist, ENT, and psychiatrist. The neurologist gets the most business from us, as each of our boys, except Anton, need yearly neurologist appointments. Our neurologist is a lovely woman who really delights in our boys. Man, it took me years to find her!! She remembers little details about them and laughs at the quirky and funny things they do. Every time I take one of our boys in she asks me more and more questions about our work. She’s truly curious about our boys and about our why. Last week she was lamenting to me about how sad it is that Ruslan didn’t get the care he needed as a little boy. She said “He has so much potential and could have been so smart. It’s such a shame that no one helped him when he was small.” Then she asked, without judgement but with genuine curiosity, “Why do you only take these men who have no potential? Why not take some kids who could grow and learn and change? It’s too late for these guys. Why them?” I then had the great opportunity to share with her how we believe that every person deserves to know the love of a family- regardless of his potential. We do see growth in our boys, but our work is very slow. I told her that no matter if they grow and change or if they stay exactly as they are now, we love them. Love is our why. She was baffled, but that’s okay. 😂 I’m so glad she asked. Now we just pray that the seeds the Lord is planting in her heart through our boys will bear some fruit.

Another great doctor in the repertoire is our psychiatrist. FINALLY, after years of searching, we have a psychiatrist who is relevant and smart, AND who understands our desires for the boys. He works in Kyiv, but we meet with him online. He understands that we want to help our boys become they best versions of themselves, and in order to do that they often need help from psychiatric medications. Other psychiatrists in our town have looked at our boys and literally said to me “What do you expect me to do? They are the way they are. There’s no hope for them.” It has felt hopeless and frustrating over the years as I knew our boys needed serious psychiatric help, but was unable to find it. The psychiatrist we have now is truly a gift. I’m soooo thankful that God brought him to us. I feel we can trust him and I see that he has our boys’ best interests at heart. What a win!

We are still in search of a decent orthopedic doctor, but I have one in mind who we’ll try next time the need arises. The last orthopedist we went to suggested we just amputate Boris’ untreated clubfoot rather than seeking further help for him soooo…yeah, needless to say we won’t be darkening his door again anytime soon.😱

Every spring I start by taking our boys, two by two, to a laboratory for testing. We don’t need a doctor’s order for blood testing. I just choose the tests I want for them and we pay for them. It would be free to do most of them at the public hospital, but like I said before, we’re willing to pay if it means we get kind, dignified, and efficient service. Public hospitals have very long lines and since we have to do labs early in the morning on empty stomachs, it is not the best choice for our boys by any stretch of the imagination. Their stress around institutional settings, combined with their stress around food, combined with their stress about needles is a recipe for disaster with a capital D. Trust me on that one. We have tried- and failed. The personnel at the lab we go to have come to know our boys over the years and the phlebotomists are very skilled and kind. I always bring another team member with me and most of the boys cooperate just fine. Vova hates blood draws and puts up a gigantic fight every time, so there needs to be at least three of us when we take him to the lab. But that’s an improvement! I used to have to gather five of us to take him to his blood draws just to help hold him down! When we take Vova for blood draws we all leave the lab worn out and sweaty, but having accomplished what we set out to do. Poor Vova. He is surprisingly strong! 😣

After the lab results are back I start scheduling the specialist appointments. We then take the boys two by two to the different specialties. I try as much as possible to schedule two appointments back to back so we’re not going into town for just one appointment. I bring another team member with me who sits out in the hall with one boy while I take the other into the doctor. Then if there are follow-ups of some kind I can bring them back alone. Any kind of imaging usually requires an extra set of hands for the members of our Wide Awake family who don’t understand the importance of lying still. 😕 Every year Yarik and Sasha have to have and EEG (a test that measures the electrical activity of their brains) and that day’s always a challenge. But, we do the best we can. 🙈

Besides the doctor appointments there is the medication ordering and distributing that needs to be done. Natasha, our office manager, orders the meds for the boys every month and makes sure we have a three month supply in storage in case of an emergency shortage. The assistants give the medications during the day and the house parents give them at night and on weekends. We have medication logs for each of the boys on the refrigerators of the homes where team members initial when a med has been given. We weigh all the boys the first week of every month and note the weight on the med log, as well as toileting habits and seizure activity. It’s important when working with mostly nonverbal boys and a big team with many moving parts that we document document document. I don’t want any health need to fall through the cracks!

So that’s a quick snapshot of the medical care around here. It took many years to get a system down that worked, but I feel confident now that our boys’ health needs are being met well. Thank you to all of you who pray for our boys’ health. Please continue to pray for strength and health for them. Their bodies have endured a lot and they carry the impacts of their former lives in their bodies. And thank you to all of you who donate to Wide Awake and support us financially. Because of your donations we can afford to take our boys to doctors who treat them with dignity, love, and hope. Our guys deserve the best care we can find, so thank you for making it possible for us to search until we find doctors who truly see them. We couldn’t do any of this alone and we are so thankful to walk this journey with you!

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

1. Mom of EVERYONE
2. Communications Director. If you hear some news coming from Wide Awake, it’s from me. Hellooooo!
3. Medical Director. Now that sounds like quite a lofty title that should belong to someone super smart, but alas, it’s just me.
4. 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):

1. Cerebral Palsy x 3
2. Epilepsy x 2
3. Foot deformities x 2
4. Phenylketonuria
5. Williams Syndrome
6. Mitral Valve Regurgitation
7. Hypertension
8. Phenylketonuria
9. Gluten intolerance
10. Lactose Intolerance x 3
11. ADHD
12. Anxiety Disorder x 3 (really, all of them except Sasha would probably qualify here)
13. Microcephaly x 3
14. Scoliosis
15. Autism Spectrum Disorder x ???
16. 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…

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!

A little over a month ago I had had it with our boys and their feet. Ruslan had once again walked a hole through the bottom of his shoes and another PT had told us that he couldn’t help, and said in fact “No one in Ukraine can help you.” In the throes of frustration, I decided to put it out to the wonderful Wide Awake community to see if any of you knew someone who could help our Ruslan. We had exhausted our resources here in Ukraine and at last, decided it was time to look outside our borders for help. I wrote a blog post asking for help or recommendations for Ruslan and was blown away by all of you! You all came out of the woodwork with ideas and offers to reach out to doctors on Ruslan’s behalf. Many of you even told me that you had been following us for a long time but this was your first time reaching out- and I was so so glad to hear from you! It was really encouraging to see how many of you deeply care for our boys. Thank you from the bottom of our hearts.

I am so pleased and thankful and EXCITED to share with you that a medical team and hospital in California have agreed to treat Ruslan’s foot for free!! It’s really going to happen! I’m still a bit in shock and I’m not sure I’ll believe it’s real until Jed and Ruslan land there in California, but believe it or not, we are moving forward in faith and doing the work on our end to make it happen. It’s so exciting, right?

Who? How? WHAAAAAAAT? I know you are dying to know the details. Sit tight and I’ll tell you. ☺️ Just a few days after I wrote the post asking for help I got an email from a super kind lady in Oregon who had been following us for years, but whom I’ve never met. We have a mutual friend ❤️ from my days working as a nurse in Oregon. She told me that she has a brother who works as an anesthesiologist at a hospital in California. She read our blog, reached out to him, and right away he was interested in helping. The anesthesiologist asked his friend, the surgeon if he was on board and he also agreed! Then that most kind anesthesiologist wrote to the hospital and the hospital answered YES! In a matter of just a few weeks, God put us in contact with the kindest people with the most generous hearts and it’s a go!

I waited a couple of weeks to share this with you because we had to figure out the issue of getting Ruslan a visa. I wanted that situation somewhat in hand before I spilled the beans. Right now, during wartime, the US embassy in Kyiv is not issuing any visas. That means that we had to find an embassy in another country at which to schedule a visa interview. Embassies always prioritize the residents of the country where the embassy is located and on most of the websites, it said that nonresidents would need to wait until 2024 for a visa interview. We really, really didn’t want to wait a year for this surgery when we have doctors and a hospital willing and able to do it whenever we’re ready! But, we worked it out and Ruslan has a visa appointment in July in Bucharest, Romania. We will need to move the date out a bit, but at least we are in their system! That was the most important part. The tentative plan as of now is for Ruslan and Jed to travel to Romania for the visa in late July or early August and then fly straight from Bucharest to California for the surgery. Once the surgery is done Ruslan will be non-weight bearing for 6 weeks. So, all together Jed and Rus will likely be gone for about 2 months. As our new anesthesiologist friend wrote, “Oh what a great adventure we are starting together” 🙂

How you can help: Jed and Ruslan will be in the Santa Cruz area for the surgery. Do any of you live near there? We do have lodging covered for Jed and Ruslan for the time they will be in California. What we definitely need help with is a car. If any of you have contacts in the area who might have an extra car that Jed could use for several weeks in early August it would be a great help. Also, any help with meals or groceries would also be just a wonderful gift. Those first few days back at the guest lodging with Rus will likely be quite difficult and any support any of you could offer Jed would be a blessing to him and Ruslan both. If you live in the area and would like to help in any way, we would love to hear from you! You can email me at kjohnson@wideawakeinternational.org

Thank you again to everyone who went for bat for Ruslan over the past month. We are really thankful for every effort made on his behalf. We don’t take it lightly and are honored that you would speak out. I promise to keep you updated on this journey toward wholeness for our Rus. Praise God for his great love for our boys!

I know I’ve said it before, but here I am saying it again: our boys are superheroes. They really are! They are survivors. After all they endured while living in the institution, they still enjoy life and have learned to love and trust others, all the while daily overcoming the limitations of their physical bodies. They are forces to be reckoned with.

Our Ruslan is a mega-superhero. Is that a thing? Well, I just made it one. 🙂 He has a foot that is pretty severely deformed, and he has never had a shoe that actually fit, but he never ever complains about it. He has to limp when he walks, which over the years has transformed his hips and spine as he compensates for the limp, but he rarely even complains about any discomfort in his body. On the one hand it’s awesome because it just shows how strong he is. But on the other hand it’s sad, the fact that he has just adapted to the pain and has zero expectation that his body could change for the better. Ruslan has resigned himself to his broken body, but the rest of us have not. We want something better for him and won’t stop looking until we find a way to help.

It is not our practice at Wide Awake/Dim Hidnosti to immediately search in other countries for help for our boys, but to try to use only local resources whenever possible. One of our goals is to create something that can be replicated by Ukrainians in other parts of the country. If we rely too heavily on western help we are creating an unsustainable model that is only achievable with western connections. We want to be a spark of change in the culture here and are always on the lookout for local like-minded medical professionals who want to partner with us to help improve the lives of people with disabilities. At the same time, we recognize that this is an extremely difficult time here in Ukraine and sometimes outside help is what is needed. This is one of those moments.

Over the past four years we have searched and searched and have not been able to find any help for Ruslan here in Ukraine. Doctors don’t want to touch him and physical therapists say it is much too late for anything to be done. We tried to find a place where they could make him some special shoes, but only one company agreed to try and their attempt looked like Frankenstein shoes! I kid you not- they were like props from a horror movie. I think Rus lasted about 5 days before he just refused to put them on. They were so heavy and clunky (not to mention uuuuuuugly). He could barely walk in them. No other companies will even try to make shoes for Ruslan. Last week a PT told us “No one in Ukraine can help you. No one.” Hmmmm not exactly encouraging.

Alright, so we haven’t had any luck finding help here in Ukraine, but we refuse to just sit down and accept that. Rus is a young man and he has his whole life ahead of him. Surely we can do something to improve the quality of that life! If we don’t, his posture will only get worse and I fear that someday he won’t be able to walk anymore at all. We have to stay on this and not let it go.

So, now I’m coming to you, our awesome Wide Awake community. Will you help us search for help for Ruslan? We are looking for knowledgeable medical professionals who can become a resource for us and help us to understand the steps we should take to help Ruslan walk better and more comfortably. I have no idea what a solution for Rus even looks like.

Do we need to try to fix Ruslan’s foot with surgical interventions? If so, where can we do that? We need a surgeon to donate his time and a hospital to donate their facilities. Ruslan is a Ukrainian citizen, but he could easily get a visa to the US, for example, because Jed is his guardian and Jed is a US citizen. Several years ago we got a visa for Boris that way with zero problems.

Is surgery impossible or too big a risk and we need special shoes made? Great! Who can make the shoes and where do we need to go to make that happen? Our current solution is buying whatever shoe we find that will “semi” stay on his foot and then replacing it every 2-3 months because he walks a hole into it. Not to mention he has to stop every few meters and put his shoe back on because only the ball of his foot stays in the shoe.

Is there some sort of nonprofit out there that helps people like Ruslan and we need to start by connecting with them? Great! Send their contacts my way and I’ll get on it.

We have been advised by an American PT and by Ukrainian PT’s that no therapy will help Ruslan’s foot. Everything is fused in place and the foot is not flexible at all. PT is helpful for strengthening his leg and helping with his back, but as long as he limps the way he does, he will have problems with his hips and back. It seems that we’ve got to start with the foot.

If any of you have any connections to share with me I would greatly appreciate it. Please feel free to pass this need on to others. Surely, there’s got to be someone out there who knows how to help our guy. Let’s find that person together!

BeLOVE[d]

If you have any info or leads on help for Ruslan you can comment on this post or email me at kjohnson@wideawakeinternational.org Thanks!

Her heart pounded in her chest and her stomach churned as the van turned onto the gravel road lined with trees.

Two weeks earlier she and he had left their four small children and flew all the way across the world to visit that place. They had heard the stories and knew deep in their souls that they were supposed to DO something about the injustices being done in that place and others like it.

She had cried countless tears over the past year as she washed dishes and changed diapers and swept the floor in suburban America. Her heart was broken for the helpless ones who were trapped in their suffering with no future, no hope. Though she had never met them, in her heart she already loved them. Her mama heart ached to hold them and make everything better.

The van pulled up to a gate and stopped. They stepped out of the van and instantly she heard them. She heard the sounds of the ones she had dreamed of and longed to know. The yelling, the moaning, the cries of excitement intensified- visitors had arrived!

She and he walked hand in hand down the sidewalk of the institution and the noises became louder. She saw curious faces peeking through windows and her heart skipped a beat. Would her heart deny her? Would her body betray her? Would all their preparations and prayers leave them reeling in the depth of their naivety? What if they met the boys face to face and wanted to run away from them instead of embracing them? What if this was not the YES they had hoped it would be?

But then a door opened and she was among them, punched in the gut by the smells and the sounds; all five senses assaulted in an instant.

As she and he were swarmed by faces and hands and bodies, fear melted away and her heart became alive. In that moment she realized that her soul had been longing for those souls in front of her. Her hands were covered in their saliva and their scent, and yet she couldn’t contain the joy and the “rightness” she felt in that moment. She glanced in his direction and their eyes met. He gave a slight nod, yes, he felt it too.

This was what they were put on the earth to do. These were their people. This was their path.

______________

That first day at Romaniv will forever burn in my memory. I met my boys that day. I met my future that day. I loved them instantly and fiercely that day and I promised myself I would fight endlessly for them. It was a naive love, most definitely, but it was true.

Mama Bear awoke that day. Circumstances and disappointments have made her cower in her cave these last months, afraid to love them like she did before. Living with them was harder than she imagined it would be. In the midst of their overwhelming trauma, her love has not been enough. Their hearts are like bottomless pits that can never be filled. No amount of her love will ever be enough. So she cowers in her cave, afraid to give more, afraid to bring more boys to freedom because of the damage, pain and disappointment that is sure to follow.

But she can not fight for them from her cave. She can not fight for them and remain safe from pain. To love them is to feel their pain and to walk with them through it, even if that walk takes forever.

I am their Mama and I will not be afraid.

It’s story time. And this is the best kind of story. This is the kind of story in which all looks hopeless and then, at the last second, hope arrives and the helpless one is saved. This is the kind of story where life is lost, and then life is found. It’s the kind of story where love wins over fear. It’s a story of miracles.

Several years ago, in the Eastern United States, Nate and Jen saw a documentary that would change their lives forever. They saw a film about orphans with special needs in Bulgaria. The film showed how the children were mistreated in institutions and the results of a very broken system. After that film they knew they had to do something. They were moved to action. (My kind of people!)

Nate and Jen’s hearts were turned toward adoption and they went on to adopt a little boy from Bulgaria and then a little boy from China. But they weren’t done yet. Or rather, God wasn’t done with them yet. 🙂

In the summer of 2018 they began the process to adopt another little boy. This little boy was in southern Ukraine. In fact, he was in the very orphanage that God used to turn our hearts to Ukraine back in 2010. Nate and Jen fell in love with this boy and were moving forward to make him their son, but then, while they were still working on documents on the US side, the little boy died in Ukraine.

I can’t imagine the heartbreak. To make the decision to adopt a child is no small thing. You have to be ALL IN. And then to find out the child died without knowing the love of a family that you desperately wanted to give. It’s just so so terrible.

In their grief, Nate and Jen understood that they had love to give, and that many other children in Ukraine waited for families, so they decided to continue the adoption process. Much to our joy and surprise, they chose to adopt “Kayden”, one of our boys!

Kayden was in pretty bad shape at the time he was chosen and we knew he needed to be adopted in order to survive. He just wasn’t/isn’t strong enough to live many more years in an institution. So we waited eagerly for the time when the documents would finally be completed on the US side and Nate and Jen could come to Ukraine to meet Kayden.

Earlier this summer the moment arrived! One Friday morning  in July they were driven out to the institution and got to meet their boy and begin the in-country adoption process. They got to spend a few hours with Kayden, and then of course they got to meet all our other loves who are equally as precious and equally as desperate for love and attention.

We had plans to meet up that night for dinner in the city, so they texted me when they arrived that evening at their hotel room. We chatted a bit about their day and then, out of curiosity, they asked if any of the other boys were adoptable, because they had heard none were. I clarified that yes, just one more boy was available for adoption, “Aaron” and I sent them this video so they would know who I was talking about:

[wpvideo vmHzsjaC]

Their reply “We love him.”

Nate and Jen spent the weekend with our boys and grew to love them more and more- not just Kayden, but all of them. They are a pretty lovable bunch, if I do say so myself. And then at the end of a whirlwind few days they were headed back to the US to wait for a court date.

On their way home they messaged me to let me know that they were praying about coming back after this adoption to take home Aaron too. Aaron, that one boy, the boy in the video, the last boy who is available for adoption at the institution. They knew that his time was short, as he ages out in December, and they just couldn’t fathom leaving him behind.

Guys, my heart skipped a beat or five when I read that message. Seriously? Hold up. Back up. They were thinking about adopting Aaron? Let me just tell you, I love Aaron deeply. I adore him. I see him for the precious little boy that he is deep inside, but I can tell you that not many see that. He is despised by nannies. He is bullied by other boys. He is about as far from an orphanage favorite as you can get. My faith has been so very small over the years that I have hardly advocated for him. For several years I knew he was available but I left advocacy for him on the back burner, instead advocating for all the others- the ones who seemed that they would be “easier”, the ones I could get decent pictures of, the ones I could write glowing reports about. I hate that I did that, but I want to be honest.

As much as Jed and I love Aaron, I had almost zero faith that anyone else would love him as much as we do. I halfheartedly advocated for him, but my deepest fear was that I would write as honestly as possible about him, but then a family would arrive to adopt him and be instantly scared off by his behaviors. The boy is loud. He is highly sensory seeking. I really do believe that he will change within the safety of family, but I can’t make any promises at all. I knew a family would have to take him as he is, and I just had no hope that anyone would.

But God. God promises to be a Father to the fatherless and He.Keeps.His.Promises. When our faith is small, that is when His glory shines brightest. Lest I should think that any of this has anything to do with how well I advocate or how catchy our blog is or how many followers we have to “like” our posts. This work is God’s work and these boys are His and we are simply his vessels. Thank God that His ways are higher and his timing is perfect.

I am just so deeply grateful to God for keeping His promise. And I’m so deeply grateful to Nate and Jen for seeing our boys with eyes wide open and not allowing fear to hold them back. I just almost can’t believe it’s actually going to happen!

Right now they are in the process of making necessary changes to documents so that they can bring both Kayden and Aaron home. Once they get them home there will be no more adoptable boys at the institution. Each one who has the possibility for adoption will be adopted. It is well with my soul.

As you can imagine, deciding to add another child to an adoption adds quite a bit of expense. So you can guess what I’m going to say next. 🙂 Would you help me support this family and their huge step of obedience?

Tomorrow I turn 40 (yes, I know, the big 4-0) and I can’t imagine any better gift than to see this family, who are adopting the FINAL TWO BOYS, be supported. I don’t want them to have to worry about money at all. Would you consider giving a tax-deductible donation to their adoption fund in honor of me turning old?

You can give your tax-deductible donation here. 

Thank you, thank you, thank you for your prayers, support and advocacy. Two more boys are about to know freedom and the love of a family. THANK YOU GOD!!!!

Today our precious “Kayden” met his adoptive family. That means that Aaron is the only boy available for adoption at the institution- and he ages out at the end of this year! SEVEN of our boys have been advocated for and are now living in families. SEVEN boys who were once lost are now found.

Aaron is the only one left behind who has the chance for a family. I wrote this post a couple of years ago. Will you please help me share Aaron’s face? He is so in need of the love of a mama and daddy. 

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Today I want to help you get to know our precious Aaron.

I haven’t done much advocating specifically for him.  Out of all of our boys who are available for adoption you probably know him the least.  That’s my fault.  My faith has been small.

This is the thing: some kids are really easy to write about.  Every picture you take of them is adorable and people can’t get enough of their cuteness.  Maybe they smile all the time and our cameras seem to find them on every visit.  I can’t keep cuteness like that to myself!  It just wouldn’t be right!  😉

Other kids are more difficult to write about.  Maybe they don’t photograph well, or maybe they just never sit still long enough for anyone to capture more than a blur of movement. Maybe their behaviors are really difficult to manage and it’s hard to know what to say.  Maybe there aren’t many cute stories to share…maybe none of their history is known so it’s hard to paint a whole picture.

Aaron is one who has been difficult to write about.  I haven’t quite known what to say.

One of my biggest concerns with advocacy is that I want to be very, very certain that I am writing with honesty. I have nightmares about adoptive families arriving at the institution, meeting their child for the first time and saying to me “You didn’t tell me this!”  I know that adoptive families can never truly understand what our boys are like, or what Romaniv is until they arrive and see it firsthand: smell the smells, hear the sounds, feel the pain.  But I’d like them to at least feel that I was honest in my description of the son they have fought so hard to rescue.

Because of that, it’s more difficult to advocate well for a child like Aaron.

He’s so difficult to photograph. His behaviors are extremely tricky to manage.  He is not liked by many of the orphanage staff. His quality of life is so poor, I can’t even accurately describe it.  He is loud. When we first met he was like a wild animal: a sensory-seeking boy in a sensory-deprived environment.  His life is pure nothingness so he searches for sensory input however he can get it.  If that means he has to literally climb up a team member’s body to get their attention, he’ll do it.  He absolutely LOVES water, but never gets access to it, so we have spent many a visit with one team member’s sole task being to keep Aaron from ripping the sink apart in his desperate attempt to feel the water.

He needs so much more than he is getting- in every single area of his life.

But the thing is, all the reasons that make advocacy difficult are the reasons why Aaron needs a voice maybe more than any of the other boys who are available to be adopted.

It’s almost impossible to get a good picture of him.  But I think he is absolutely beautiful.

He is loud and he screams and he has no words.  I hear the plea of a baby boy asking for his mommy.  I hear a sweet little boy whose voice is never heard.  I hear a child crying to be rescued.

He is a wild man who drives the nannies absolutely crazy with his quest for sensory input.  I see a little boy who is desperate for a big backyard and a dog and a hose on a sunny day.  I see a sweet soul who needs to be able to swing for hours on end, feel the wind in his face and the grass under his toes.  

God has given us a very special love for our boys that goes beyond reason.  It’s a supernatural love that could only come from him.  He gave us mommy and daddy love that sees the beauty of our boys, even when they do things that would not be considered beautiful, or even cute. He gave this love to us so that we would have the umph and the passion and the drive to fight for them.  He gave us voices so that we could speak for the voiceless. He made us totally biased, because our boys need people who are on their side and are completely biased for them.

I am biased in my love for Aaron.  It’s true!

So today I speak for Aaron and I tell you that he is a treasure. He has boundless energy and so much curiosity. He wants to learn and soak in all that life has to offer. And this most precious treasure is desperate for a family.  His situation is dire.  He is unwanted and disliked and abused…and soon his time will run out. I want to talk all about the ways I believe he would change in a family, but I need to tell you how he is right now, because I can’t know he will or won’t change. A family that chooses him needs to come in with eyes wide open and love him just as he is.

See my boy.  Please see him.  Imagine if he was rescued and brought into a family where he could get love and care.  No doubt it will be a difficult road to walk, and the adoptive family will need to be prepared to devote a lot of time to Aaron, but oh my, it will be so worth it! To watch him come to life would be an absolute miracle to behold.  The parents who get that privilege are blessed indeed. I know from experience.  🙂

God knew Aaron before he was even born.  He saw him in his mother’s womb and formed him there.  He created him for purpose and destiny.  He is as valuable as you.  He is as valuable as me.  He is as worth it as my Ezra, my Seth, my Vladik.  He is someone’s son- they just don’t know it yet.  He shouldn’t be spending his summers sleeping on a mattress to avoid attention and abuse.  He should be running in the sprinkler and going down slides and eating Popsicles.  Why not?  He’s just a little boy.  A little boy in a desperate situation.

So, please pray and please share.  Please pause and ask the Lord how you should respond to Aaron.  Don’t dismiss him because he sounds difficult, please.  He is made in the image of God and he will bring blessing and joy to some lucky family’s home.  Maybe yours?

 

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You can read more about Aaron and donate toward the cost of his adoption here. Interested families are welcome to contact me with questions at kjohnson@wideawakeinternational.org

Yes, it’s true. A family has committed to adopting Preston!

WAHOOOOOOOOOOOOOOOOOOOOO! So many tears and cheers around here!

Thank you to every single one of you who donated to his adoption grant and shared his face with the world. His mommy and daddy found him via social media, so sharing does work! They are a family who have been around the special needs adoption world for a while now, advocating and supporting other families. Now their time has come, and I’m super glad about it.

So many of you have asked how best to support Preston, and now his family and I can tell you that there are two BIG ways you can help.

1.  Pray. If you are a person who prays, please pray for Preston’s family to be able to move through the adoption paperwork with lightning speed. Pray that no roadblocks get in their way so they can get to their boy before he is moved.
2. Donate. The biggest obstacle to this adoption happening in a timely manner is MONEY. Adoption is sooooo expensive and this family needs our financial support to help them move along quickly. They have decided to commit their lives to Preston. In that commitment, they have agreed to all the costs that come with adding a new member to the family: emotional, physical, and financial. Let’s be real, it’s expensive to care for a child with significant special needs. Their adoption journey with Preston will continue on for the rest of his life, and so will the financial aspects of it. I would just love to bless them in this part of their journey. I would love money to not be an obstacle at all in bringing him home. Follow this link to give a tax-deductible donation to the family’s adoption fund: https://reecesrainbow.org/129794/sponsorrichardson2

* * *

I know many of you were touched deeply by Preston and his story. He is a very special boy who is destined for great things. Many of you expressed to me your desire and willingness to be his family, and for that I thank you. Thank you for opening your hearts.

I know there are some happy, yet broken hearts out there, mommies and daddies who hoped Preston would be theirs. I want to tell you that I know exactly how you feel. Our journey to our life here in Ukraine started out in that exact way. We committed to adopting a boy in Ukraine, and gave our whole hearts to him in the process, but another family adopted him before we could get there. We were happy for him, that he wouldn’t have to wait for us to have the mommy and daddy that he so needed, but at the same time we were absolutely crushed. How could we have such love for a child and then have it turn out that he was not meant for our family? It was a difficult and confusing time. I wrote about it here. 

Long story short, God used that little boy in southern Ukraine who was never meant to be our son, to turn our hearts in the direction of Ukraine, in the direction of our future. God spoke to Jed so clearly in that time,

“Jed, I am so much more interested in the process than in the end result.  You have one end result in mind, but I’m taking you on a journey.  I needed you to love that boy like a father.  I needed you to love him with abandon.  I needed you to have that father’s heart for him because I need you to love lots of little boys and girls like him.”

I believe that is the current storyline for some of you. Preston as your son was not the end result God had in mind when He grabbed your heart, but instead He is using Preston’s story to start you on a journey. If that is the case, please don’t stop. Keep moving forward. Stay in a posture of YES. Do not be discouraged. Do not harden your heart. Do not simply move on. Quiet your heart and ask the Lord what He would have you to do next because I guarantee there is a reason your heart was so touched. Our end result is us in Ukraine with a houseful of broken and beautiful men so in need of love and healing. Your end result may not be the same (If it is, come on over! We could use some help over here! Haha), but it may be the adoption of a different child, or foster care, or advocacy. This gut-wrenching, pit of your stomach, can’t eat, too many tears, broken and open heart are unto something. So don’t miss it. These times of prompting from the Lord can be game-changers.

If you need some encouragement (and you have a few spare hours…hehe) go back and read the beginnings of this blog. You’ll see how we had no idea what we were in for, but we just wanted to say YES to Jesus. It has been a wild ride, but I don’t regret one second of it. Not that we’ve got it all figured out by any means! But we have walked the road of disappointment that led to great great joy.

I promise to keep you all updated on Preston and his family’s adoption journey! So stay tuned!

BeLOVE[d]

Update 4/15: An adoptive family has stepped forward for Preston! They are currently compiling their adoption dossier as quickly as possible. If you would like to donate to their adoption fund follow this link: https://reecesrainbow.org/129794/sponsorrichardson2

THANK YOU to every one of you who has shared Preston’s story with the world. As of today more than 40,000 people have viewed the blog post about his urgent need for a family.

Please keep sharing! So far no one has stepped up for Preston. There have been many, many inquiries by email, Facebook and Instagram, but no one has taken the leap.

I can not emphasize enough that this is a race against time. A family must step up NOW. If you are one of those interested families, I’m sorry to rush you…but hurry up! 🙂

Certain questions about Preston have been asked several times, so I will answer them here.

Why can’t Preston’s current family adopt him? There is no doubt that Preston’s current caregivers love him immensely. They adore him and he is a genuine member of the family. They also went into this committing to care for him for one year, and now have passed the two year mark. They never took Preston in with the plans to keep him forever. His current family saved his life. They nursed him back to life and have sacrificed SO MUCH because of their great love for him. Their hearts will break to see him go. But they are not, and have never been, his permanent plan.

1. Much like in the US, after a certain length of time in transition, a child’s case must move to a permanency plan. Preston’s time in transition has run out. His permanency plan is adoption- either domestic or international. He can not legally stay in his current situation.
2. Ukraine does not allow single parent adoptions. He currently lives with a single woman and her adult daughter. Neither of them are legally allowed to adopt him.
3. Both members of his current family have expressed more than once that they believe Preston would do best with a father in the family. He lights up around men and you can see he longs for that relationship that a father can provide. His current home can not provide that for him.

How can it be best for Preston to leave his country, culture and language and be adopted internationally? This is a question that is not easily answered in one paragraph of a blog post. So, so much in that question.

For sure, bringing Preston out of Ukraine into a family culture and language that is completely foreign to him will be very difficult for him. FOR SURE. There is no denying it. I am a huge advocate of keeping kids in their home culture whenever possible. The USA and other Western countries are wonderful and have many amazing resources that we do not have access to further east, but I definitely do not believe that the USA and other Western countries are the best place for every child.

So why do I advocate for Preston to be adopted out of Ukraine?

1. I advocate for that because no one in Ukraine has stepped forward for him.
2. Preston would greatly benefit from medical resources (therapy, medications) that are simply not available yet in Ukraine. He has so much potential, but lack of consistent therapy and doctors up-to-date on the latest in helping children with CP hold him back significantly. His CP is basically untreated at this point.
3. He is a very smart boy, but Ukraine does not have special education, so he is unable to attend school. This breaks my heart because I KNOW he is so capable. There are no resources here for home education- least of all education of a child with any special needs.

We love Ukraine. Heck, we moved our entire family here, permanently. I am not some random person who is not personally invested into this country and her people. We have given our lives to being sparks of change here. So let’s get that straight: I love Ukrainian people. I am committed to Ukraine. I also am raising children and adults with significant special needs here in Ukraine and I face every day what it means to live with people in a culture that does not accept them. Change is coming slowly, but it is extremely difficult to  live in Ukraine with people with special needs. I’m not just talking about lack of accessibility, which is a big problem, I’m talking about the attitude of the society as a whole. Life here is an uphill battle for our guys every day and I’m not going to pretend that life would necessarily be better for Preston here.

If a child with special needs is born into a Ukrainian family that love him and is ready to fight for him then OF COURSE it is better for that child to stay in Ukraine with his family. That’s not even a question. On the other hand, if a child with special needs is born into a Ukrainian family that does not want him (like Preston) or feels they can not care for him and they give that child to the State, then it is in the child’s best interest for us to look as far and wide as we can until we find someone who will love and care for him.

Those are hard words to write, but it’s my love for Preston and thousands of others just like him that compels me to point at the elephant in the room and not ignore it. If Preston is not adopted he will return to the institution where he nearly died, so no, when it comes down to him losing his language or losing his life, I will not say it is best for him to stay in  Ukraine.

If you have more questions about Preston or adoption please don’t hesitate to ask! I am happy to talk with interested families.

I wrote extensively about his needs here.  You can give a tax-deductible donation to Preston’s adoption grant here.

Thank you for your continued advocacy! Please keep it up! Let’s find our boy a family.

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I know I wrote some strong words about Ukraine. Of course there are many exceptions to this and a few of them come and work at our house every day. They fight alongside us for our guys and they, and others like them, will be the ones to change their country. 

Update 4/15: An adoptive family has stepped forward for Preston! They are currently compiling their adoption dossier as quickly as possible. If you would like to donate to their adoption fund follow this link: https://reecesrainbow.org/129794/sponsorrichardson2

Hello Dear Friends.

I’m coming to you today with an urgent need. My heart is heavy and I’m pleading with you to share, pray, and consider how you could play a part in this story.

Remember “Preston” (formally known as ‘Baby A’)? I wrote a detailed blog about him here. To jog your memory, he was dying at the institution in October 2016. We went there in the night and after calls to people in high places of the Ukrainian government, he was rescued and he lived. He now lives with a wonderful family in our church and is available for international adoption.

We just learned that Preston has 6 months to be adopted or he will be returned to the Institution.

Friends, this simply CAN NOT happen.

Life in the institution almost killed Preston. He was hours from death when we came to him that October night. I am certain returning to that place would be a death sentence for him.

He is so smart, so beautiful, so social. He is a part of a family now and he is adored. Preston has blossomed in family life and we just can’t let him be orphaned again.

Due to personal circumstances and Ukrainian law, Preston cannot remain in his current living situation. He is loved very much, but all involved know international adoption is the best plan for him.

So I am asking you to please DO something to help our boy. Do not just read this and move on. Imagine your son or daughter, your nephew or niece, safe in their bed at home one day and the next day left alone in a mental institution. What would you do to prevent that reality? I know what I would do. I would shout. I would share the story. I wouldn’t give up and I wouldn’t shut up until they were free. Preston is no less worthy of that effort.

Here are ways you can help:

1. Share this post far and wide.

2. Donate to Preston’s adoption grant. The donations are tax-deductible and help remove the financial burden of the adoption process for the family that chooses him. Donate here.

3. PRAY! God knows and sees our boy. May His will be done.

4. Consider if you could be Preston’s family. Why not you? Do not assume this is someone else’s YES. Maybe this is your YES. Please consider.

Help me shout for Preston! He can’t speak up for himself. We are his voice.

Read more about Preston here.

BeLOVE[d]

Please email me at kjohnson@wideawakeinternational.org for more information about Preston or the adoption process.