Advocating | Wide Awake Family

The Best News About Ruslan!

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!

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Fighting for Ruslan 💪

Posted on March 10 by kimnjed

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!

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Saturday, 8/20/22

Posted on August 20 by kimnjed

I don’t have a witty title today. Not that my other blog titles have been necessarily “witty”, but today I just have no thoughts of what to name this post. My mind is racing, my heart is hurting. Russia has waged a war of nightmare and terror on Ukraine for nearly 6 months now and they appear to have no intention of stopping any time soon. They bomb people’s homes, schools, kindergartens, hospitals, city centers. They rape, pillage and torture- like Vikings of old. They threaten the safety of an entire continent by using a nuclear power plant as a shield. They are trying to exterminate an entire nation, an entire culture, and the world grows weary of watching. Some even dare to say this war isn’t even really happening. While Ukrainians lay down their lives to protect the freedom of the Western world, Russians cry because they might not get to vacation in their beloved European resorts anymore. What.Is.Happening. Is this really the year 2022? Is the world really letting this continue? What.Is.Happening.

The other day we went to our kids’ school to register them for the upcoming school year. We drove down the usually quiet road in the forest and were surprised to see loads of Ukrainian soldiers on the premises. Apparently the empty building right next to our little school in the forest has been turned into a military facility…which means our kids will no longer be able to attend school. Our plan for them to be secluded and safe in the forest doesn’t really apply now. A few days later we returned to the school to discuss distance learning options and I had a moment of weakness. “Come on Jed, maybe we should just send them to school. The chances of anything significant happening here are low…” We went to a cafe in town to think and talk about it and heard a lot of airplane activity overhead. One does not simply ‘hear an airplane’ in Ukraine anymore. Any sound of an airplane means all heads are up, all eyes are fixed on the sky, all hearts beat a little faster. The sound of an airplane is the sound of terror these days. We tried to ignore the sounds and kept our discussion about school. An hour later we were at home and heard two big explosions. Something in town had definitely been struck. Never mind. The kids won’t be going to school anytime soon. Russia steals everything.

Air raid sirens are a daily occurrence here. There have been 4 just today, and it’s still only late afternoon. We hear them out in the village only when it’s very quiet at night and we’re standing in our backyard. They tell us the latest rockets strikes were launched from Belarus- our not-so-friendly neighbors to the north. No thank you very much. We tell the kids to go to a safe place when they are in town and they hear the sirens. I hope they do. Sometimes I can’t believe the conversations we have with our kids; conversations about air raid sirens, where to find the closest bomb shelter, if the sound we just heard was the rock quarry down the road or a missile strike, a sports car speeding down the highway or the roar of a jet. They are brave. They were brave before, but war has made them even more so. It changes us all- in good ways, and in ways I’m not ready to talk about yet. One thing is certain: war definitely changes a person.

Ukrainian Independence Day is August 24th and everyone looks ahead to this week with trepidation. Surely Russia doesn’t plan to let that day pass quietly. Russia is a terrorist state and it seems like they will want to mark that day in their own special way. We will celebrate quietly at home. I remember the Independence Day we spent once in Lviv. It was beautiful. Who could have imagined what was to come? Ukraine deserves its independence just like every other country. Ukrainians deserve to celebrate without fear and without a foreign power occupying their lands and decimating their cities. Ukraine deserves to be free from Russia and if other countries want to stay free they better step in and make sure Ukraine wins this terrible war.

My cousin married a wonderful man, Misha, who is a proud Ukrainian. He recently wrote this truth (the words in bold are mine):

“Let me explain really quick what would happen if Ukraine will not win this war.
Major part of central Ukraine, east, north, and south will be occupied. Russia will become bigger, more aggressive, their borders as well as appetite will expand.
Immediately, all the people on occupied territories will go through filtration camps (This is already happening in occupied areas), where they will be checked how Ukrainian they are. Any past cooperation with ZSU (Ukrainian military), any man with patriotic pro Ukrainian position, any former rear guard volunteers, as we are, – will be prosecuted. People will be sentenced to death, sent with their families to Siberia or just disappear. Russia knows how to do that very well.
At the same time, in their apartments will move another families from poorest and remote parts of Russia, bringing famous ‘Russian culture’, terror and aggression. Women will work as a teachers of their language and literature, men will be KGB workers, searching for Ukrainian patriots, hating all the locals, but taking their goods. That’s how my my grandma’s family from Siberia appeared far west in Transcarpathia in early 50’s.
During the first years Russia will establish pro-Russian managers in every governmental facility, every school, every public place, police and post office. Ukrainian culture will be suppressed and if that happens long enough – will become extinct, we might be the last generation of the native speakers.
This is the cyclical nature of Russian invasion known for centuries. They always wanted to go west to occupy reacher territories. My grandparents’ generation suffered from that, my parents’ generation lived as a part of regime as well as me, so let’s stop them now so the kids would live free, being who they are – Ukrainians.
Please help as protect our little peaceful nation. We would never raise a weapon if not to defend our people.” Instagram

I have recently been brushing up on some of Ukraine’s history and what Misha wrote is 100% how things will go if Ukraine doesn’t win this war. This is what Russia does. This is what can not happen.

So we pray, we mourn, we have days of hope and days of fear. Most days are “normal”. We continue to love our children, our boys, and our team. We celebrate together and try to remember to enjoy the little things: the way the goats nuzzle us like cats, Anton pedaling a bike, the plums from our trees, Sasha singing a new tune that we all recognize, homemade bread, being home and cozy nights with the sound of rain on the roof. When the underlying tension of war comes to the surface we try to remember to give our cares to Jesus. Only He can help.

Please, I beg you, don’t forget Ukraine. I know there are so many things to care about in this world, so many tragedies, so many stories on the news. But I still ask you to remember Ukraine, to pray for Ukraine, to elevate Ukrainian voices and the Ukrainian perspective. We would really appreciate it so much.

An Idea I’m Excited About :)

Posted on October 7, 2020 by kimnjed

A couple days ago I got the best message from an American couple that live in Kyiv. I met them briefly on a trip to Ukraine before we moved here. Throughout the years they have followed the work and sent encouraging notes here and there to let us know that they pray for us. (Those kinds of notes are the best notes, by the way)

Last winter when it all hit the fan and we had to immediately remove Anton from our house, they let me know that they had been praying for Anton every night, and would continue to do so. In that terrible time, it was such a giant encouragement to hear that they were praying faithfully for our precious guy.

That brings us to a couple of days ago when I got another message from the couple letting us know that through all these months they have continued to pray for Anton every night. I was so shocked to read that! In that moment I was able to let them know that actually, Anton has really been struggling the past couple of weeks. They were thankful to know so they could understand better how to pray for him. It made me wish I had been sharing more about Anton with them all along.

Then I had an idea!

As we’ve been planning our transition off of social media, we have been trying to think of ways for the Wide Awake community to stay engaged. I love the “back and forth” we have on social media and I really love that so many of you feel that you truly “know” our boys. That is a beautiful thing, to know our boys have cheerleaders in their corner that rejoice with us in every little victory and cry with us when times are tough. I don’t want to lose that part of community. It is an important piece at the heart of this work: to know and be known.

I would love to gather like-minded people together into groups that would celebrate, cheer on, pray for, and share the beauty of each of our boys. I’m thinking we need a “Team Boris”, “Team Ruslan”, “Team Anton” and “Team Vlad”. Then as more boys are added to our Wide Awake Family, we can gather teams for them as well. We probably need to gather a “Team Sasha” too, seeing as how Jed will soon be his guardian. Woot!

What does it mean to join a team?

We will send each team member a postcard of their boy that they can put on their fridge as a daily reminder of the precious life across the ocean.
I will email the teams each month with an update on their boy, prayer points and fun videos and pictures.
If we’re going through a rough patch I can let the team know and they can pray, support and encourage.
If there is a big gain for one of our boys, the team will know and be able to celebrate with us. I know it would mean a lot to our team here in Ukraine to hear that support and love from others for the boys that mean so much to them.
I even had an idea for a live chat with the team and their boy every so often…now that sounds fun!
Edited to add: I will still give regular updates about all the boys on the blog and in the weekly emails. The “teams” are more about targeted info about that specific boy. You can totally join more than one team!

What do you think? Wanna join a team? We would absolutely love for you to join us in caring for our boys in this way.

How to join?

Send me a message and let me know which team you would like to join.
Make sure I have your email address so I can send you the monthly updates.
If you would like us to send you a postcard, please send us your mailing address as well.

I’m so excited to see what comes of this. This idea was prompted because you all have shown so much love for our boys over the years. Thank you for loving them and for seeing them. Thank you for looking past the diagnoses and seeing the people. I can’t wait to keep sharing them with you and I really can’t wait till we have even more boys to introduce!

Wide Awake is leaving social media on Monday, October 12. But that doesn’t have to be goodbye! We are sending weekly email digests, so all the goodness you usually see on social media lands right in your inbox. Sign up below to get the weekly emails. I promise not to spam you. 🙂

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The First Time

Posted on June 30, 2020 by kimnjed

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.