Orphans with Special Needs | Wide Awake Family

PRESTON: An Update + Video

Posted on January 16, 2019 by kimnjed

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.

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.
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.
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 on 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?

I advocate for that because no one in Ukraine has stepped forward for him.
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.
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 are 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 other just like him that compel 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.

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.

URGENT- Family Needed

Posted on January 7, 2019 by kimnjed

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 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.

The Next Big Leap

Posted on September 11, 2018 by kimnjed

Tomorrow is a big, big day around here. Tomorrow Ruslan and Anton, two more of our friends from Romaniv will come to live with us forever. Jed has legal guardianship of them, and now we are taking the next big leap to bring them into our family.

I’ve been posting updates about the process on our Wide Awake Facebook page, but I haven’t really had the time to write all about it on here. So, here goes!

The plan all along has been for us to be a pilot home for deinstitutionalization here in Ukraine. The family-style homes that we dream of don’t exist here (that we know of), so we are taking the leap to do it ourselves and see if we can be a model that Ukrainians can replicate. We don’t pretend to be, nor do we want to be THE great hope of Ukraine (that would be Jesus). This issue of institutionalized people is an issue that Ukrainian people need to solve. We are just called to be a spark. We are called to model a different way and encourage others to follow. To that end, we remodeled the Homestead house with the space to bring 3-4 boys/men from Romaniv to live with our family, to become members of our family. We already took guardianship of Boris back in December, and now Anton and Ruslan will round us out as a family of 11. We would technically have room for one more, but we feel that with Boris’ needs, plus the added blessing of our Evie, two more will pretty much bring us to capacity. 🙂

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Jed with Ruslan and Anton a couple weeks ago 🙂

Just like with Boris, we are now the legal guardians of Anton and Ruslan. We did not adopt them because they are already adults, so it’s not legally possible to do an adoption. Our Vladik is adopted (he was 15 when we adopted him, so legally still a child), but in our minds and hearts they are all the same. It’s just different in legal terms. In our minds, once they enter our home they are our family till death do us part. The intensity level rises a tad when you are bringing in a 30 year old, instead of a 15 year old, but if this is what God is asking us to do our answer still needs to be yes.

People have asked how we chose Anton and Ruslan out of all the wonderful boys that we know and love at Romaniv. Wow, that’s a good question with probably kind of a vague answer. I guess we just knew! With Boris it was no question. Jed and I both had a really intense attachment to him and it was just a “duh” that he would be the first. He needed out desperately and we knew he was meant to be with us. Then we started to pray and ask God who would be next. At first we thought we would take the men who were going to be first to age out of Romaniv, but right now in our region no-one is being transferred in to the institution, and no-one is being transferred out. So age doesn’t really matter. We knew we wanted to take men who were too old to be adopted and we wanted men who had no family to go back to. In our minds, reunification with birth family is the most amazing plan ever, and we want to advocate for that as much as possible. So, it was important for us to take men who would not have the opportunity for reunification.

Three years ago Anton and Ruslan were taken to a camp for children with special needs that our friends at Mission to Ukraine provide each year. I was on the “Romaniv” team with them and got to know them a bit. I’ll be honest that before that camp I had never noticed either of them at Romaniv. I absolutely fell in love with Anton at that camp. He has such a sweet spirit and boy oh boy, he is so abused at Romaniv. He is a whipping boy for the aggressors and spends most of his days rocking on a bench, probably attempting to disappear. At camp his precious spirit came alive and it was such a joy to behold. I’ve had a special love for him ever since that time.

Anton and me at camp (2015)

Jed and I both also recognized at that camp the awesomeness of Ruslan. He is so smart and full of joy. Then in the spring of 2017 Jed and I both had encounters at Romaniv with Ruslan that firmly placed him in our hearts. We each had encounters when we were present when he had been hurt by another boy/man and were able to be at his side to comfort him while he cried. We had the gift of holding him and giving him the compassion that he has lacked for so many years. When it came time to choose our guys, Jed and I both eventually, in discussion and prayer, narrowed it down to those two boys. And we have never swayed since. There are many guys that, for safety reasons, we could not have in our home with our children, and then there are many that we absolutely adore and wish so much could come be a part of our family. But, we just don’t have space for everyone. We really needed God to speak to us, and we believe He has.

Jed and Ruslan at camp (2015)

Anton and Ruslan are both more independent than Boris. Boris needs help with every aspect of life. Anton and Ruslan can feed themselves, go to the toilet independently, dress themselves, and walk. Ruslan has some mobility issues, so when we are out and about in town he’ll need to use a wheelchair, like Boris. Ruslan can speak, Anton only has a couple of words. Anton will need more assistance with daily life activities than Ruslan, but in general they will require less “hands-on” than Boris.

We understand the gravity of what we are about to take on. Well, I should say we understand it as much as we can at this moment! In reality, there is zero percent chance that we can predict what this transition will be like. We know that it is no small thing to take in two thirty year olds who have lived in hell for 20 years. We know they have been neglected and abused beyond belief and the path to healing will be long. But, we also know for certain that these two are meant to be with us. We have put safety precautions in place. We have had discussions with our kids. Our interns and Jed’s assistant, Kenny, will be helping us several days a week. Now all we can do is see how it goes, modify the plan as needed, and trust God to give us the wisdom we need. It seemed right to take Anton and Ruslan both out at the same time. Ruslan is a helper, and we hope he might be a comfort to Anton. Also, our family has been through A TON of transition over the last year and we just feel like we need to do this big transition and then be done with transition for a bit (if that’s even possible). We are eager to settle in as a family of 11 and get on with it!

I’ll be honest, this YES is the biggest yet for me. Yes, it was a lot to commit our lives to Vladik and Boris, but this feels even bigger to me. It feels scarier. Maybe that’s because now we have lived the reality of our commitment to Boris for several months and we are knee deep in the challenges and reality of what that looks like. Life with Boris is not without joy, but it is a hard, hard road. I know that Anton and Ruslan will have their own challenges and sometimes I worry about what that will look like in day to day life.

BUT

We know that we know that this is what God has asked us to do, so we have to put our trust in Him and keep on trusting. Just like before, the only thing required of us is the next YES. We don’t need to worry about the future, because we’ll have the grace for it when it gets here. 🙂 I’m so excited to watch Ruslan and Anton become the men that God created them to be. I’m so excited to shower them with love. I’m so excited for our family to be complete.

Please pray for us as we take this big step. Pray for grace and peace and safety and health and most of all that God’s Kingdom would come and His will would be done in our home.

Thank you, Friends!

(This little snippet of Anton at camp a few years ago makes me smile)

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A Different Kind of Hero

Posted on May 4, 2018 by kimnjed

On Sunday we had quite the scary experience. We had been at church, picked up some groceries, and arrived back at home. Seth was helping Boris get out of the van and Boris, for whatever reason, didn’t try to step out of the van at all, but just leaned all of his body weight on unprepared Seth. Boris fell backward and hit the ground- head first with a loud thunk/crack/give.me.a.heart.attack. I screamed (loudly) for Jed and he rushed out to scoop Boris up in his arms. It was so scary. It makes my stomach ache just remembering that moment.

Boris turned out to be fine. Thank you Jesus! Since he is nonverbal and couldn’t tell us anything about how he was feeling, we decided it was best to take him straight to the hospital after the fall to get him checked out. All the questions about blurry vision or pain or feeling confused were irrelevant since Boris doesn’t speak. I found myself watching him constantly for any sign of discomfort or any irregularities. He seemed a bit “off” that day and the next, but since then has been totally himself. We are so thankful.

In those moments after the fall his vulnerability slapped me in the face. In those moments my empathy for him grew by leaps and bounds. I realized again just how incredibly vulnerable Boris is. He can’t verbalize his needs or wants. He can’t cook or prepare his own food. He can’t get to the toilet without help. He can’t get his clothes on and off without help. He can’t bathe himself. He can only walk very short distances. He relies on us for absolutely everything – 100% of the time.

We don’t know if Boris was able to do more things independently in his early years, before he came to the institution. But we do know that for the past 19 years at the institution he was 100% reliant on others to meet his needs. He was completely at the mercy of the institution’s staff. He relied on them for food, drink, cleanliness, safety- he could do nothing for himself. He was completely vulnerable and had to entrust himself into their hands, because he had no choice. But the ones who were meant to meet all of those needs let him down. He wasn’t safe. He wasn’t clean. He was chronically dehydrated and his body was emaciated and twisted from neglect. Because of lack of resources, lack of staff, and an environment that does not value life, he suffered. He suffered so greatly for many years. The neglect and abuse he has seen is more than any human should ever have to endure. My heart breaks.

Then one day, 4 months ago, Boris was plucked out of that environment and had no choice but to entrust himself to others: us. As vulnerable as ever, he came to us broken and afraid. Life has not taught him that people are to be trusted. Life has taught him that he has to fight and manipulate to make sure his needs are met. Boris didn’t know our intentions, and maybe he still doesn’t fully know them, but because of his physical and mental limitations, he must put his trust in us. He is completely vulnerable. He has no other choice.

This morning I was helping Boris to put his dirty clothes in the hamper. He did an awesome job and I was so proud of him! In that proud and happy moment I reached up to give him a high five and he flinched. He thought I was going to hit him and all the happiness of the moment flew out of the room. Oh my heart. He had so much fear on his face. So I tried to repair the moment. I told him how much I love him, I told him how smart he is, how special he is…I kissed his face and hugged his neck. But the peacefulness of the morning was ruined. He went back into his place of fear. Self-harm was again the order of the day. I took him outside to wait for our neighbor to take him for his morning walk. I brought Bluebell (our dog) over for comfort, put his weighted blanket on his lap, turned on some of his favorite music, and after a few minutes he was smiling at me again. He again entrusted himself to me. What a precious, brave soul.

What will we do with the trust Boris gives to us? How will we care for him in his moments of greatest vulnerability? Will we shush him and brush him off even when we see that he is trying to communicate something, or will we take the moment to be patient and try to understand? Will we get irritated when he self-harms, or will we choose compassion and again help him to keep himself safe? Will we become victims to our own life decisions, or will we recognize what an honor it is to care for him and take part in his healing?

I want to always remember what an incredible honor and privilege it is to be the ones who get to care for Boris. We get to teach him a new way. We get to show him that people can be loving. Hands can be for hugs and gentleness. Words can be spoken in love and patience. What joy to watch him learn that there will always be enough to eat. He will always have a place at the table. He will always have a daddy there to scoop him up when he falls. He will always have brothers and sisters to push him on the swing. He will always have a safe, warm place to sleep. Every time we serve Boris we show him a new way. We hold his vulnerable heart in our hands and we care for his vulnerable body. It isn’t always easy, but if we keep our hearts open it will always be beautiful.

Boris is so incredibly strong. His body may be weak, but to have endured the life he has been given and still choose to smile, still choose to love, still choose to accept love from others… I have so much to learn.

There is no doubt in my mind that people like Boris will be the ones at the head of that big feasting table in heaven. The weakest among us has become my hero.

BeLOVE[d]

Posted on March 30, 2018 by kimnjed

I remember that night as clear as day. I remember the night we drove to the institution, knowing only that one little boy was dying and we had to do something about it.

He was new to the institution, having arrived the week before from the baby house. He was sick upon arrival and was quickly sent to the hospital. The hospital said there was nothing they could do for him: “His brain is dying”. So they promptly sent him back to the institution to die. We had seen him just the day before, and although we had never met before and had no baseline, we didn’t think he looked too concerning. I’m an RN with many years of experience and I never would have imagined that the next night he would be on his deathbed. He looked pale, stiff, eyes with circles under them from exhaustion, but many of our boys look like that and they are not actively dying. I thought he looked fragile, but I did not fear for his life.

The first day we met

I was wrong. Because now that I know this precious, precious boy I can look back and see how very ill he was that night. He was a shell of a boy. His body was there, but his soul was just barely hanging on. The boy we saw that day should have frightened the heck out of me. He was oh so sick. We just didn’t know.

Late at night, the day after we first met him I was contacted by some ministry friends who told me that he was dying and the nannies didn’t expect him to live through the night. I was shocked. What??? I just saw him! How can this be? A few of us from the team rushed to the institution late in the night to see if there was anything at all that could be done to save his life.

It was a fight. It was a battle I’ll never forget. I remember standing on the sidewalk outside the Isolation Hall. All around us was dark, save the moon above us, the four of us were discussing/arguing about what to do next. We were panicked and knew time was not on our side. In the end we had to pull connections at the very top of the Ukrainian government to get our boy to the hospital. But, God made the way and to the hospital he went. From the local hospital he went to a regional hospital, then to a hospital in Kyiv- creating waves at every stop.

His story reached many people all over Ukraine. Top Dogs in the Ukrainian government took a big interest in his story and a fight for life became no longer just about him- but he began to represent the thousands just like him: forgotten, neglected, deemed unworthy, deemed a waste of time and resources. News stories were broadcasted and people rose up in outrage. This little boy whose life was miraculously saved that night in a rural institution became a type of poster child for orphan reform. His life became a voice for the voiceless.

In the hospital in Kyiv

Eventually our little one, we’ll call him “Preston” was released from the hospital and went to live with a sweet family from our church- an older mom and her two adult daughters. The plan was that he would live with them for a short time while his birth mom decided what she wanted to do: take him home, or sign away her rights and release him for adoption (returning him to institutional care was never an option any of us considered). The weeks turned into months and the months turned into a year, and the family fell in love. Preston has become a member of the family and he loves them just as much as they treasure him. And oh, how he has thrived in the light of their love.

The time has now come- the time we anticipated and dreaded all at once. The time has come to find our Preston a forever family outside of Ukraine. Mom decided that she is just not able to give him the care that he needs and deserves and she has signed away her rights. Our sweet in-between family, as much as they adore Preston, recognize that he will never be able to live up to his full potential here in Ukraine. He needs therapy and medical attention that is simply unavailable here. They cry just talking about me writing this blog post, but they love him enough to let him go.

So, I’m turning to all of you, asking for help. The time has come to find the family that is perfectly suited for our boy. I am absolutely confident that they are out there.

Let me tell you more about Preston. He is 7 years old and has lived most of his life in family. He lived with his mother and father until they felt they couldn’t care for him anymore, and then he spent a year and a half in institutional care before moving to live with the family. Because of that, he does not have the institutional behaviors you see in our boys at Romaniv. He has endured trauma, there is no doubt about that, but he has also known the love of a family and has been very well-loved at that!

Preston has Cerebral Palsy and this is his great challenge. He is not able to sit up, stand, or walk independently- but he sure wants to! He tries to mimic people and say words, but does not speak fluently. He is not toilet trained at this time. His muscles just do not listen well to his brain, so his ability to feed himself or do much independently is limited. He is so smart. He understands everything and knows what he does and doesn’t want. Don’t let his disability trick you- he is fully alive in there and I can’t wait to see what he has to say once he is given more ways to communicate. Other than his CP diagnosis, he is a fairly healthy boy. He gets the occasional respiratory infection, but he is growing and developing in a healthy manner.

He wants to stand and walk so bad!

Preston enjoys cars and trucks and toys of all kinds. He needs some help to play with them, but he does like to play. He loves to watch cartoons and to color…he enjoys age-appropriate activities, he just needs help in order to engage. His arms move unpredictably and the spastic nature of his CP makes intentional movement extremely difficult. He absolutely needs consistent therapy. Preston is social and likes to be with people. He is firmly attached to his current family and it’s easy to see how he loves them. He prefers them over anyone else and cries when he is separated from them. He even sleeps in their arms! I told you he is well loved. 🙂

Preston is now available for international adoption and we are actively seeking a family. This adoption will be different than any other Ukrainian adoption I know of, because Preston will be adopted while living in his current family- not from an institution. The high-ups in the government who personally care about him have worked to make that exception possible. The adoptive family will be well-supported in Ukraine as many, many people have a very personal interest in Preston and his well-being. He is loved by many. The Ukrainian portion of the adoption will be well-supported by the government. The current family is an absolute wealth of knowledge and would love to be a support to the adoptive family in whatever ways the family wants. In other words, if you step off the ledge for this one you will not be alone. We are here for you and our love for Preston compels us to do anything and everything we can to make his adoption a success.

Saying yes to adopting Preston is no small decision. He will require a lot of care- especially in the beginning as he will be separated from everyone he loves. His care is physically demanding too. He’s getting to be a big boy and he can not care for himself at this point.

But, oh the joy. Oh.the.joy!

Out of the many thousands of children in institutions all over Ukraine, God chose this one. He plucked Preston from his deathbed in the dead of night from an institution in the middle of nowhere and saved his life. He was mere hours away from dying- this beautiful, amazing, smart, happy boy was almost lost to us. But no. God saw him and acted. God has used Preston’s life to be a voice for others and I believe He will continue to do that.

He is one special boy and I have no doubt that his adoptive family will be blessed beyond measure by his life.

Will you help share him with the world? Please share this post and please pray about your own response. Are you the family that is missing their son?

You can view Preston’s profile on an adoption advocacy site here.

If you have any questions about Ukrainian adoption in general, or more specific questions about Preston you can email me at kjohnson@wideawakeinternational.org and I will be happy to talk with you. Videos can be made available to interested families.