(God’s) Timing is Everything

So yesterday was basically amazing.

We had the extreme honor and pleasure of meeting with a woman in Kyiv who has worked for twenty years to provide rights for, and secure the rights of people with disabilities.  She and her team have worked tirelessly to rewrite laws and create legislation and lobby for the ones we love.  This incredible woman was fighting for our Boys before we even had a clue they existed.  This incredible woman deserves a standing ovation.

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As a mother of an adult son with disabilities she recognized the holes in the social system of Ukraine.  She saw how her own son would fall between those cracks.  She knew the value of his life and decided to do something about it.

As Ukraine attempts to move toward European Standards of Care for institutionalized children and adults it has become obvious that the current model of care can not continue “as is”.  Major overhauls must happen.  Major change must come.  And it will have to be MAJOR.

Before we moved here we told people that the whole social system here in Ukraine would have to change in order for the dreams God has given us to come about.  We dream of community living for people of all abilities where they are not isolated, but are active members of society.  We dream of homes where children are not confined to their beds, but they are truly living and thriving, surrounded by loving support for all their days.  Those dreams are legally impossible with the current system.  BUT, change is coming.  We don’t know when (but we do know it will be soon), we don’t now how, but now we know the people who have been dreaming this dream long before we arrived.

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Timing is everything.  The harvest is so ripe.  How can we honor those who have gone before us? How can we thank them enough for their tireless, unrecognized efforts?  It’s truly humbling and so encouraging!  I mean, think about this: we knew at some point we would have to hire a legal team to dig in to, and fight to change the laws here concerning people with disabilities.  Then yesterday we learned that there are people here already doing that- and with much success!

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There is much, much work to be done, and many battles yet to be fought, but we are not alone. We are a teeny-tiny piece of a great big puzzle here in Ukraine.  There are others who care, and it is personal to them.  We met one of them yesterday.

I’m a concrete thinker.  I like to know what to do next.  All these policies and plans and multi-year projects are nearly impossible for me to wrap my brain around.  But, in our meeting we were given a solid next step to work toward.  We learned that it is important to register Wide Awake International as an NGO here in Ukraine.  That will be to our benefit once the big changes start to take place.  So, we’ll get working on that right away.

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In the meantime we’ll keep in touch with our new contact in Kyiv, and faithfully serve the Boys God has put right in front of us.  It’s more and more obvious as time goes by that this is the exact place we are supposed to be at this exact time in history.  Because of that we can rest.  Even though Ukraine is at war and the task before us seems insurmountable, we can be confident that God is truly in control.  Yay for that!!!!  Thank you all for your continued prayers and support.  You are making a difference in many lives!

The photos are from last week at Romaniv.  Little Ilya was cracking us up with his absolute love for music.  It really helps him to regulate.  He even tried to climb inside the guitar!  Don’t miss him on Jed’s lap in the pics.  Hilarious and awesome.  

 

 

An Update on the Littles!

You’ve been asking and wondering, so I won’t leave you in anticipation any longer.

Everyone’s been asking, “How are the Littles???”

(You can also read about them here: http://wideawakefamily.com/2014/07/04/it-just-keeps-getting-better/)

 

Okay, you’ve twisted my arm. I guess I can spare a few to chat about the sweetest little babies you ever did see. 😉

The Littles are doing really well. I’ll tell you that it was obvious to us right away that they looked physically healthier. A small church here in Zhytomyr that does great orphan care here in our region went to Romaniv while we were in Lviv. They also saw the need for more nannies and donated money to hire another nanny for the Littles! With our forces combined, we now have a nanny with the Littles 7 days a week from 7am-7pm. This is HUGE. How can they not improve?? Impossible.

Jed and I go to Romaniv twice a week now. We go on Friday with the team, like usual, but we also go on Tuesdays. Our dream is to form another Isolation Room team for Tuesdays, but we just don’t have the manpower for it right now. There is a church from another city that has joined MTU at Romaniv on Fridays for years. They bring a group to Romaniv on Tuesdays as well, and they mostly work with the older boys. We are so thankful for them! They are absolutely fabulous people. So, for the last two weeks while they work with the older boys, Jed and I have taken aside a couple of our Isolation Boys to work with them more individually. In the group setting on Fridays it’s really difficult to connect well with each individual boy. We are really excited about this time on Tuesdays to observe and connect with boys more strategically.

Yesterday I got to spend some very quality time with “Little #1” (the bigger of the two) and one of our nannies. The other Little, was with the orphanage nurses, so I didn’t get to interact with him. The time was awesome! Our friend Alosha came along to translate and I got to talk with the nanny very freely about the boys and their care. We discussed feeding progresss and difficulties and I learned that it takes her over an hour to feed the boys at each meal. Little #1 eats well and is improving his feeding skills with the spoon (yay!), but #2’s reflux is still a big problem. Thank The Lord we have those nannies! The other nannies do not have near that amount of time to spend feeding just two boys. Our nannies are able to feed them slowly enough that they finally hold down 100% of every meal. WOOHOO! They are not losing more weight, but are now maintaining. The next step will be working toward weight gain.

I got to work with Little #1 on the floor, showing the nanny how to do some stretches and exercises with him. I was amazed to see that he is now able to briefly lift his head while lying on his tummy! This is huge. I can tell that our nannies really work with the boys and want them to grow and improve.

I think the biggest and best thing that I noticed during my time with him was the change in his socialization. These boys get 2 to 1 attention all day long and IT SHOWS. He would turn to look for his nanny when she spoke. She reported that the boys each cry when she is giving attention to the other one. THIS IS GREAT! These are Littles who were silent when they arrived at Romaniv. They weren’t silent because they had no needs. They were silent because they had learned that crying got them nowhere. There would not be a response, so why cry out? A silent orphanage is not a good sign. It is healthy and right that children should cry out or call out when they have a need. I was ecstatic to hear that the boys cry for their nanny. Woot! My heart was full to hear her talk about their likes and dislikes. She described how Little #1 reaches for his mobile that we brought him before we left in August. She reported that he loves it, but his greatest love is going for walks outside. Every day the boys get to go out for a walk. Every day!!!! She laughed as she described how all the orphanage staff from maintenance men to cooks have to stop and ooh and aaah over the Littles when they see them outside. Of course a family is their very best option, but if that can not be at this time, then we will work with what is possible. I’m so thankful this is possible.

Praise God. Praise God that He made a way for these two lives to be saved. Praise God that he put a dream to help our Boys in the heart of a 13 year old boy all the way back in Oregon. Praise God for the church here in Zhytomyr that also saw the need and joined in to help. Praise God for nannies who truly love our Boys. Praise God that we have the funds to continue this care for 4 more months.

There is so much need at Romaniv. There is so much injustice and sadness. The need can be overwhelming and suffocating, but yesterday I got to see a glimmer of things to come. There is one room in that building where joy abounds. May it continue and spread and grow like wildfire. May God grant us abundant wisdom beyond ourselves to know what steps come next. Seventy-eight other boys sit and wait day after day for their turn. The same God who saw the Littles and made a way for them will make a way for the rest. We are confident of that!

P.S. We will share more about our work at Romaniv in our September newsletter. If you would like to receive our newsletters in your inbox you can subscribe here!

P.P.S. Sorry about the lack of pictures. We’re finishing up some discussions about posting pics of the Boys. I’ll post more as soon as I can!

Big News: A Wide Awake Nanny!

Oh guys, today was a good day.  I think you’re going to be pretty excited about today.  I know I’m excited.  Maybe that’s why it’s 12:52am and I’m still awake and just crazy enough to start writing a blog post.  Forgive the late-night typos and the lack of pictures, this news just can’t wait.

About a month ago I shared with you about our two newest additions to the Isolation Building.  I wrote about it here: http://wideawakefamily.com/2014/07/04/it-just-keeps-getting-better/  Our two new little guys (the “Littles”) are teeny tiny and we knew they would need a lot of extra support to be able to thrive.  Right before we left for camp in July we brought a bunch of supplies to Romaniv to help the nannies care for them more easily.  We left for camp unsure of how they would do at Romaniv, in their new environment, but hopeful.

Last Friday we finally made it back to Romaniv after three awesome weeks at camp.  Oh my, it felt amazing to be back with all our boys.  They were visibly happy to see us (which was a blessing all on it’s own!) and we were ecstatic to be back with them.  We missed those faces!

We could see right away that the Littles have not been thriving.  I don’t fault the institution, the nannies in the Isolation Building genuinely do care about them and do their best to meet their needs.  I fault a system that sets people up for failure.  Simply put, there is no way it is possible for 2 nannies to give 22 boys with severe disabilities the care they desperately need.  Once you add the needs of the Littles to all the others it becomes over-the-top impossible.  The Littles are still learning to eat from a spoon instead of only by bottle.  Bravo nannies for trying to teach them to take food from a spoon!  They are unable to walk, and one of them is unable to even sit, but who has the time to help them weight bear and learn to crawl and learn to grasp toys and learn to interact with their environment?  With a building full of other boys who don’t understand personal space or boundaries or how to be gentle with “babies” , how do you keep these little ones safe without keeping them in their cribs all day long?  I don’t fault the nannies.  I’m not at all sure how I would do different if I were in their shoes.

The honest truth we saw right away is that there is no way these boys could thrive without a big intervention.

So, we went home last Friday and asked God how Wide Awake could or should intervene.

The thing is, we will be at a language intensive for the next bit and won’t be able to be at Romaniv for 3 weeks.  We couldn’t help but feel a desperation to help before we leave, and on Tuesday Jed and I met with the orphanage’s Assistant Director (who came in on his vacation) to see what that help could look like.

I can’t brag enough about this orphanage administration.  They are so open to help and to new ideas and we are beyond thankful for that.  They genuinely care about the boys and they really do want to improve their lives.  They know they need help and they don’t turn it away when it’s offered.  Thanks to those who have served them faithfully for years, we get to see the fruit that is cooperation and trust and encouragement.  It’s awesome.

In our meeting the Assistant Director was super open to our ideas.  He said “You know our boys.  If you have ideas to make their lives better we will do our best to help you reach those goals.”  Praise God.

We presented the idea of Wide Awake International hiring an extra nanny to care specifically for the Littles for the next three weeks while we are away.  The purpose of the nanny would be:

1.  To feed the boys the way they need to be fed so that they are able to keep down the nutrition they work so hard to take in.  They both have reflux and one of them is still very lacking in the oral skills needed to eat safely from a spoon.  Feeding them properly takes a long time and the regular nannies just don’t have that time with their normal workload.

2.  To provide therapeutic interventions that will help the boys build strength and motor skills- both gross and fine.  They need to bear weight on their legs and arms.  They need to learn to crawl.  They need to learn to grasp toys.  They need to have tummy time and neck control….and and and….  🙂  Any attention to their bodies, any play will help them come closer to achieving those goals.

3.  To love.  These little ones live confined to their beds.  Oh how they would thrive with time and attention and physical touch.  Oh how they would thrive with a walk in a stroller, to feel the sun on their faces.  Oh how they would thrive when being held, just for the sake of being held.

The Assistant Director liked the idea.  He presented it to the Director who liked the idea,

Annnnnnddddd….today we met our nanny!  Wahooooooo!

She is a kind, gentle woman who seems to be just the right fit.  We pray it is so.  She was visibly touched when she first met the boys and she was open to all our instructions and ideas.  Today we discussed our ideas for working with the boys’ bodies and how we would like them to be fed.  If she implements these ideas we won’t help but see improvement. Improvement in their overall well-being is inevitable.  🙂

Our Wide Awake nanny will work from 8-5, Monday through Friday (with possible some time on Saturdays) and her main focus will be the Littles.  If they are sleeping she can help out some with the others, but we were very clear about our expectations that she focus on the Littles.  We really want to see how they improve and how they respond to this care, so as much as we love all our other boys, we need our nanny to be pretty focused.  The Little’s room is like the ICU of Romaniv.  Yes, all the other patients in a hospital need care, but the ones in ICU need special attention for some time.  So it is with them.

Want to know something really awesome that’s like icing on the cake?  There’s this awesome kid in Portland, Oregon.  His name is Athen.  God really gave Athen a big heart for our Boys. He loves them and for the past several months he’s been working hard to raise money to help them.  He’s done a pancake breakfast and raffles and t-shirt sales.  He made bracelets and sold them during school lunch.  He worked hard.  On Monday, the day before Jed and I met at Romaniv to present our idea about the nanny, Athen gave us his total from his fundraisers:  $820.  SHUT UP!!!!!  So, not only did we have a really cool idea to present to the orphanage administration, but we had a big chunk of money to pay the bill for the idea (plus some!).  Too stinkin’ awesome.  Really.

When we get back from our language course we will see how it went with our nanny and at that point we will talk with the directors about a more long-term plan for improving the Littles’ health and well-being.  The rest of the money Athen raised will be put to good use at that time.  I’m confident of that!

So, there you have it!  Now is that good news or what?  How amazing that God sees and He knows our Littles.  He loves them so much that He moved the heart of a boy across the world who didn’t even know them to work his tail off so they could have a nanny just for them.  He loves them so much that He opened the hearts of the Directors to come to work on their vacation to find a nanny and sign papers and talk business and money and schedules.  He loves them so much that He moved the heart of a kind woman to love them and serve them for these next three weeks.

Oh how He loves us!  Woohoooooooo!

Pure Magic.

The candles were lit, white lights twinkled overhead.  The room was decked out in red and white, tablecloths smoothed, plates laden with treats.  We were ready.  I looked out the window to see the ones I love gussied up in their finest, smiling for the cameras like the stars that they are.  Moms surrounded them with pride in their eyes, snapping photos left and right, attempting to capture this moment and never let it go.

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It was our last night at camp and time for our “Ladies and Gentlemen” evening.  A night created to honor our campers and let them know how we cherish them.  A night without parents, a night to feel young and free, grown up and proud.  A night made for them to take with them for the rest of their lives.

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We opened the doors and applauded our dear ones as they entered the room arm and arm with their precious volunteers.  Oh how their faces beamed with pride and excitement.  They looked absolutely stunning- each one.  Pure magic.

Every volunteer had written something special for their camper, and as each one was called up we cheered and hooted and hollered.  We told them they looked beautiful.  We read beautiful words about them, telling them how they are seen by their friends.  Some had grins you couldn’t wipe off if you tried, some blushed furiously, shy with the praise, a few wept, and I know I joined them.  🙂

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Oleg shared a poem and dessert was served.  I flitted from table to table, wanting to savor each face in my mind, wanting to cement this night in my heart.  Volunteers, our waiters and waitresses for the night, served our guests like royals.  Feeding those who couldn’t feed themselves, holding hands and pushing wheelchairs, wiping drool and crumbs, smoothing skirts and jackets, refilling cups and sharing conversation.  The cream of the crop were there that night- Zhytomyr’s finest- young people who have chosen to ignore their culture’s definition of value and choose to see with eyes of the Kingdom.

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A waltz was shared and all were invited to join.  A tall volunteer bends low as he invites a beauty in a wheelchair to join him in a dance.  She laughs big as another volunteer cuts in. Every soul celebrated and treasured.

We ended the night with fireworks and the joy on each face was indescribable.  Kingdom of Heaven come to earth.  God’s Kingdom come here and now- on earth as it is in Heaven.

I wish I could transport each of you back to that night with me.  I wish you could see and feel the joy in the room.  I want you to meet those we love so.  Roma, Vitaliy, Dasha, Natasha, Luba, Andrei, Vitya, Rostik, Oksana, Vika, Anton, Olya, Maxim…real people with real hopes and dreams. They may be limited by their bodies, but there is no limit to God’s love for them.  They are of infinite value and worth.  They are worth it.  They are worth time and effort and energy and love.  They aren’t a diagnosis or a mystery in a chair.  They are beloved sons and daughters and sisters and brothers and friends, and on Sunday night they were celebrities.  🙂

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I won’t be the same after this last month.  Our whole family is changed.  So much was solidified in our hearts and many, many times this past month my heart knew there is no place else I’d rather be.  Yes, it is often difficult.  Yes, the language barrier makes me want to scream.  Yes, we feel like outsiders much of the time.  Yes, sometimes we are lonely.  Yes, we miss our family (so much).  Yes, we miss our church (so much).  Yes, we miss one-stop shopping and dryers and the coast and the beauty of Oregon.  But our hearts know where they belong. Our hearts belong in a town full of those broken in body but alive and awake in spirit. Our hearts belong in an institution of the broken and forgotten.  Our hearts belong with the royalty of Sunday night and with those who served them.

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Praise God for knowing so much better than we do.  Praise God for those who have gone before us and paved the way in a society that says their work is of little value.  I just can’t thank God enough for placing our family here.  Not every day is lollypops and roses, and someday soon I will share some of our struggles.  But beyond all that I am thankful.  God has flooded our hearts with love that only comes from Him and I can’t even express to you in words how much we love our Ladies and Gentlemen.  They are absolute treasures.

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How is this our life?  Somebody pinch me.  

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It Just Keeps Getting Better

Once upon a time, four years ago, I happened upon a blog of an adoptive mom who had just returned from Ukraine with her two new daughters, both with special needs.  That night, sitting on the couch with my laptop and cup of coffee, my life was changed.  Our lives were changed.

Tears streamed down my face that night as I read every post of the adoption blog.  That night I learned about life in Ukraine for orphans with disabilities.  A whole world was opened to me that I hadn’t even known existed.  I learned about school age children, the size of infants, living their lives bedridden in their cribs.  I learned about mental institutions in rural villages that house the disabled- hidden from the rest of the world. I read for hours that night.  One blog led to another that led to a website that led to another site.  My heart was broken and I knew something big was happening.  God meant for Jed and I to do something about this issue and these children, and He was serious about it.

Now, four years later, I’m in Ukraine, sitting on my bed with my laptop and my cup of coffee, realizing just how serious God was that night.  Yeah, He wasn’t messing around.  🙂

All along the journey that began that fateful night, God has been growing and refining the dreams He’s given us for the orphans with disabilities here in Ukraine.  We knew then, and we know now that He has called us here with a specific focus on bedridden children.  That is a population of orphans that is extremely difficult to reach, but God has been very clear that they are our people.  They are the ones we are to fight for.  Of course we are absolutely in love with many, many people with disabilities here that are not confined to their beds.  The big vision of Wide Awake includes varying levels of ability, but we knew then and we know now that God has a special plan for us that involves bedridden children.

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The big question has always been “How will we gain access to the bedridden children?”  Those children are generally more hidden away and it’s difficult for outsiders to work with them at all.  Perhaps orphanage directors are afraid, maybe they are protective…we will probably never fully understand the reasons.  We have just known that it would be up to God to bring those children across our path.  After all, it’s not like we can just walk into any old orphanage and ask to be shown to the crib section.  Ha!  Access to medically fragile kids only comes with relationship and trust.  Those things take time, so we have not been in a hurry.

But God.

Last week our team arrived at Romaniv and learned that two new little boys had been transferred to our Isolation Building from the baby house orphanage.  When Jed saw them for the first time his heart skipped a beat (or two).  They are both five years old and the size of infants.  They are bedridden and have spent their whole lives thus far in their cribs.  They are exactly our target population.  For these boys, and others just like them, we have sold everything and moved across the globe.  After months (actually years!) of wondering how we would gain access to children like these they have literally been dropped in our laps.  We didn’t even have to find them.  They were brought to us! I still can’t believe it.

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 Mission to Ukraine has been faithfully serving at Romaniv for five years.  Over those five years they have loved and given and loved and given some more.  They have brought Jesus there and His light and love have changed everything.  It is not the same place it once was.  The staff are not the same.  The Directors are not the same.  The boys are definitely not the same!  Because of MTU’s incredible faithfulness we now reap the harvest.  We are standing on the shoulders of giants.  Because of the amazing work they’ve done over the years we have full access to our boys in the Isolation Room.  We can visit any time we want.  We can take boys to the Sensory Room.  We can try new things and interact intentionally with each boy.  The Directors welcome us whenever we can come and invite us to even come more often.  It’s a situation we could only ever dream about.

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Now we have new boys who are completely bedridden and we have full access to them.  We even got to visit on Tuesday and talk with the staff about some of their biggest concerns about caring for these new boys!  Today we got to bring them a pack n play so they are not confined to their room every minute of the day.  We got to bring them mobiles for the cribs.  We got to observe their feedings and give input and advice. We get to be actively involved in improving their quality of life and it’s unreal.

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Testing out the new pack n play!

Each one of our boys in the Isolation Building holds a special place in our hearts.  We are learning their likes and dislikes, their habits and cues.  I really can’t express in words how much they mean to us and how great our love is for them.  They are our babies, each one of them.  I can’t even believe we have the honor of knowing them and loving them.  And now we have two more to love.

I guess I just had to share how awesome our God is.  His plans are so perfect.  He is so wise.  He placed us right where He wanted us, knowing all He had in mind.  He brought us here with an impossible-to-reach population in mind, and then proceeded to drop them right in our laps.  Incredible.  I can not thank God enough for our dear friends at MTU.  They have paved the way through many hours of love and care, and they loved our boys before we even had a clue of their existence.   We will be forever grateful.  Now to watch and see what God does next!  🙂

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Our little celebrities 🙂