Tetyana Demiyanova and Project Hopeful

So thankful for Tetyana Demiyanova! She has accepted a new position in our ministry — Family Consultant. She works directly with the parents, grandparents, and caregivers of those children who are hospitalized in the HIV/AIDS unit at Okmatdet, the national children’s hospital. She has not only accepted the position, but she is flourishing! Everyone loves her…the children, the parents, and the staff.

She has already created a flyer with valuable information for new patients’ families. Complete with a map of the hospital grounds, closest metro, restaurants, grocery stores, ATMs, hair salons…things you want to know but you don’t know who to ask.

Tanya is also in the process of compiling frequently asked questions to then put together a handbook for families with newly-diagnosed children. So often, it seems, parents are given too much technical/medical information…and all at once. We pray that this handbook will be a resource that will also point them to other resources when they’re ready for details!

We are thrilled to partner with Project Hopeful in this endeavor…and, in particular, with Traci Heim. While Traci was in-country adopting — AGAIN! — she visited the hospital with us. She observed as a new child was being admitted and innocently asked the question, “Who reaches out to the parents?” When Tanya heard the question, she couldn’t forget it. And she realized that SHE could be the answer to the question.

The rest is history. Well, since September. And Traci will be arriving in Kyiv in time for World AIDS Day. Tanya is organizing lots of visits to various sites so that Traci will have a better picture of just what it means to be HIV+ in Ukraine. The stigma is overwhelming. There is MUCH to be done. But we are on the way!!

HIV/AIDS patients

So thankful for the open door we have at the national children’s hospital in Kyiv, particularly the unit where the HIV/AIDS children are treated.

For years we have been visiting weekly — Jim teaches medical English to interested doctors there and I simply break up the children’s boring hospital stay with some silliness, some stickers, BINGO, crafts, Jesus Storybook Bible gifts, and whatever else we find to do. On warm enough days we play outside…warning: these boys kick a mean futbol! Chalk is always fun whether we’re outlining their shadows or creating a hopscotch board or a long and winding street for their cars. The youngest ones are just happy to be held. Occasionally we are privileged to witness a child’s first steps!

I am also thankful for those loyal volunteers who join me there. It’s great to see God’s people committing TIME to the least of these. And the smiles and hugs we get in return are absolutely priceless.

A truly positive meeting

I sometimes feel like a broken record. (Does anybody even know what that means anymore??!!) You know, when the needle is stuck in the groove and keeps repeating the same thing over and over and over again.

“Worldwide we have done such a great job of scaring people re HIV/AIDS that we now have people scared of PEOPLE! And the only way to change this is to educate, educate, educate.”

I cannot even count how many times I’ve stated this obvious fact…on my blog, on facebook, on twitter, at conferences, among friends, wherever!

And how many times we’ve asked for prayer for how to change things here in Ukraine! Lord, send us some like-minded Ukrainians who see the same need. And, Lord, direct us to useful information…knowledge plus practical.

Is our God faithful?

Does He answer prayer?

Well, yes. But not necessarily on my time schedule. And not necessarily in ways that I would expect.

He is God, after all.

I cannot even express the joy and expectation for great things I have felt since a meeting at our flat earlier this week. Initially we were meeting to discuss some summer camp thoughts. We shared what we do, and others shared their expertise. And hearts opened and raw emotion flowed freely. (Thankful over the years to be considered a safe place for many to pour out their hearts — praises, frustrations, sins, whatever.)

And then Traci Heim (Project Hopeful) and Viktor Grachov (Positive Heart) joined the discussion. (We were scheduled to meet with them after the camp meeting.) Traci had questions about the system here… and the next thing you know…real answers for real situations bubbled to the surface and I am confident that a group is coming together to tackle the serious stigma of living with HIV/AIDS in Ukraine.

There is palpable fear in revealing one’s status here.

So, what do moms need to know before even leaving the hospital? Who is offering emotional and spiritual counsel to these women…in a world where you don’t dare tell your situation? In a hospital where HIV+ mothers and their children are separated for long lengths of time, unlike the other moms. Where the clergy tells the women that it’s their sin and God is punishing them. Where suicide often seems the only answer.

Please, please, please pray with all of us as vulnerable people consider their potential role in boldly fighting back against stigma while also compassionately coming alongside others who have been recently diagnosed.

This is huge, my friends.

And only God can bring it all together… in His timing and to His glory!

Teaching the untaught

Today “Anna” (not her real name) finishes her second semester ever at school. She is 10 years old and has lived almost half of her life as an inpatient at Okmatdet, the national children’s hospital here in Kyiv. Her mother died, her father is nowhere to be found, and her aunt cannot transport her to the hospital three times a week for dialysis…so she simply lives at the hospital. Yes, the government DOES supply teachers to instruct the children in the dialysis unit, but they are not willing to teach Anna. Why, you ask? Anna not only has failing kidneys caused by tuberculosis but she also is HIV+. And the teachers are afraid of her.

Mind-boggling, isn’t it? If anyone should know the truth about HIV/AIDS, you would think it would be the hospital staff! And you would HOPE that they would pass on that truth to volunteers. But that is simply not the case.

Jim and I visit this hospital every week, Jim teaches medical English to the staff and I simply play with the children. It turns out that this combination is making an impact…not only are we interested in the children but we also care for the staff! We don’t have deep pockets, but we DO have time and find ourselves modeling compassion as we deal with real-life situations at the hospital. And it has not gone unnoticed.

The staff trusts us and they trust our recommendations. When we approached the head doctor about the situation involving no education for these inpatients, she was totally open to our recommendation of a private teacher. We have started small — one student with one teacher once a week. Sveta is our teacher — a mom who herself has adopted a special needs child in Ukraine and knows firsthand the challenges that come from being institutionalized, whether an orphanage or a hospital! She home-schooled her daughter until she was able to attend the neighborhood school. She has designed a program for Okmatdet that takes into account that some ‘students’ will be there for only a few short weeks, some for months, and some for years. We love that Sveta is teaching much more than simply ‘book learnin,’ including how to express emotions appropriately (using words rather than just pouting) and she brings a Christian perspective to the world around Anna. The parents and care-givers are begging her to teach the other children as well. Such an opportunity!

We all were thrilled to hear that Anna had become a Believer over the holidays — lots of visitors flood the hospitals during Christmas/New Year’s break — and one took the time to quietly pray with Anna. We planted seeds over the years, Sveta watered them, and someone else harvested. God’s ways are perfect.

Yesterday Sveta came by to report on Anna’s progress. To quote Sveta:

We have got four great achievements in January:

1. Anna is very excited about doing math. She is super at addition and subtraction from 1 to 10. She also is very good at problem solving. She had a big problem with numbers, she even could not remember how to write them 5 months ago. God is really great!!! All glory to Him!!

2. Anna’s and my backs would be shown on TV and people could see how it is important for such children to have lessons at hospital.

3. Anna’s aunt came and saw a little of our lesson. She was very excited and looked at Anna’s achievements and signed her school day book.

4.Anna finished one more book World Around Me.

These are huge steps in the life of a little girl who spends so much time sitting bored in her hospital room or in the dialysis unit. She is often tired and extremely thin. But she is so very excited to learn new things. We are so thankful for Sveta and her first student!

We are challenging schools, teachers, parent-teacher groups and others to consider partnering with us in the project to educate these hospitalized HIV+ patients. Once we replace Sveta’s current salary she will be going full-time with us. How exciting is that? We also have dreams of another angel working with the upper school patients…we have someone in mind, but we would need to also replace her current salary. We pray that groups will be willing to raise funds to take care of just one month a year, every year. That cost ranges from $500 to $900 a month (depending on one or two teachers) and also includes all the supplies needed to teach the various ages. We can do this, but not alone.

Are YOU willing to organize a group to take financial responsibility for one month a year? We have already heard from one school in Alabama and also a parent group from a private school who will be making a donation each year in honor of the teachers!

Two months down, ten to go.

Hospital time

Visiting hospitalized children in the HIV+ section of the national children’s hospital in Kyiv. Such a delight! We never know for sure who will be there, but we have come to know many of the children over the years.

This week was a special treat because friends joined us. Jim’s medical English class was on Christmas break so he was able to join the fun. Wayne Dickinson and his daughter Taylor are visiting other friends of ours (the Malones) just outside of Kyiv. He first joined us at the hospital when he and his wife were adopting a precious little one. Wayne and Taylor along with Blake and Hannah Malone met us at our flat and we traveled to the hospital together.

We were extra thankful that Wayne had his guitar with him. One of the little boys has very poor eyesight and so he cannot join us for some of our games. When I asked him if he wanted to play the guitar, he grinned, nodded and I took him the hand to Wayne. Wayne spent one-on-one time making music while the rest of us played holiday bingo.

And then everyone joined in for pin the carrot nose on the snowman. Lots of laughter as the dizzy participants strayed far from the snowman before being led a bit closer. Jim nearly left the room on his turn, and stuck the carrot on Blake at one point. Howls of laughter, of course.

Another family also joined us there…the Bergstroms. They visited these children several times during the summer, but then school began and their afternoons were no longer free. Thankful for Christmas break so that they could visit once again. They packaged candy for each of the patients and also provided various colors of fingernail polish for the girls. Ellie and Adeline (and Hannah and Taylor) applied the chosen colors much to the delight of the young girls. Aiden left the painting to the girls but he played an awesome game of bingo!

Even dad Chris entertained the troops by reading Russian poems to them. The giggles were priceless as they corrected his accent…they thought he was quite understandable, by the way.

So appreciative of friends who will spend their afternoons breaking up the monotony of another day in the hospital for these patients. They will long remember you…

Zhenya

One of my most favorite little patients died last week.

She would put with my silly Ukrainian language even as she soundly beat me at dominoes over and over again. Chempionka! I gave her a sticker each time she won and she rapidly had quite the collection. I tried beating her at ‘picture’ bingo…but she would grin and proudly proclaim in English: Bin – go!

When a team from Huntsville came to serve the children of Ukraine this summer through vacation Bible school, Zhenya could no longer get out of bed and be upstairs with the other patients as she had in years past. But the team instead went to her and painted her nails and simply sat nearby. And her mother was so thankful for the attention.

I loved to act like I was going to tickle her feet — her whole face would scrunch up in anticipation of the tickle and she would giggle the sweetest little giggle.

We gave her a wheelchair in August so that she could go home with her Mama for a few weeks (thanks, again, to our friends in Switzerland who left that chair for us last summer) and fully expected to be losing games and stickers to her regularly this fall.

But, God had other plans for her. She spent time in and out of an intensive care unit in her hometown and eventually succumbed to the multiple diseases her body so valiantly fought for so long.

My last picture with her was the day before she left…outside in her new wheelchair. We said good-bye and rather than me instigating a farewell kiss, she grinned and blew me one first.

Love that little girl. Love her Mama. Wish I could give her Mama a big hug.

So thankful that we will meet again and we will all be able to hop, skip, jump…and play dominoes!

And even speak the same language!

Reality on the field

Consistency speaks volumes here in Ukraine as became evident a few weeks back when we were once again visiting hospitalized HIV+ children.

The head doctor approached me as she was leaving the building for the day and asked me to do her a favor. She told me about a teen-aged patient who would not take her ARV medicines by mouth. She would not eat and if food or medicine were pushed on her by mouth, she would immediately vomit. The head doctor feared that the patient had lost her will to live — her father had died about six years ago and her mom died last year. She was feeling all alone and the doctor wanted me to just visit and tell her that God is always with her. I was more than surprised at this request, specifically being asked to talk about God!

I went to visit Dasha and found a gorgeous young lady with penetrating dark brown eyes and beautiful long brown hair. Though she seemed to wonder why Lena and I had stopped in, she was smiling by the time we left. We asked permission to visit her again and she readily accepted the proposal.

The next week we returned accompanied by Jana Daley and her two daughters. Dasha picked the colors and the girls made her multiple bracelets and anklets. They even left extra threads so that Dasha could make more later. The conversations centered first on food — what had been Dasha’s favorites before she became sick — and we all shared in the light banter. I asked her whether she liked McDonald’s — there is one nearby the hospital — and when she responded yes we began to make plans to visit. Of course, she’d have to be off the IV and strong enough to make the short trip. She gave the idea serious consideration and thought it might be fun. Motivation to eat by mouth.

When we asked if there was anything that she wanted she replied that she would love some music. Her equipment had broken so she threw it away and she was yearning for some good old Russian pop. We didn’t promise anything, but told her we’d try to help out. She even gave Lena access to her social site to be able to download her favorite music.

She told us about her godmother who was now staying in her room with her. And we located a Bible and some biblical DVDs in her room. She seemed to know God. But I planned to take the Jesus Storybook Bible to her…requesting she let me know what she thought about it for children.

The youth leader in our church donated a CD player, Toliy added headphones, and several people gave us CDs. We were excited to visit Dasha and present her with her heart’s desire. But when we arrived at the hospital, she had been transferred to the intensive care unit. It seems they were attempting to feed her through a tube while she slept so that she would not reject it. Because she was under anesthesia to keep her knocked out we were not allowed to visit.

Nor the next week.

The following week — last week — we were told that she had had surgery to remove some sort of intestinal blockage…THAT was why she couldn’t eat. It wasn’t just in her head. And much to my surprise, we were told that we could visit her! Lena and I put on our fancy blue shoe coverings and rang the bell at the intensive care unit.

Shoe coverings alone would not allow us in. We needed a robe. A mask. And a hat. So back we went to the previous unit and borrowed what we needed. Upon our return, we were permitted to enter her room. She was so weak and could hardly keep her eyes open, but when we showed her the CD player she whispered, “Spaseeba.” Thank you. The staff cleaned the machine and set it up for her right next to her pillow. The nurse even put the earplugs into her ears. She was so happy.

She wanted some mint drops…a small request, we thought, though it took us a half hour to complete the search and buy them at a nearby drug store. She was looking forward to our excursion to McDonald’s and she said that she would no longer be in intensive care the next week, but would be back in her room. She wanted us to come back again. She spoke so quietly that Lena had to lean close, but her words were certain.

So Wednesday I arrived at the hospital to see our recovering patient. You needed to pick my chin up off the floor when I was told she had died on Saturday. What? Why? Are you sure? Jim continued to discuss the medical aspects with the doctors and I quietly left the area. I settled down on ‘my’ couch where we wait for the little ones to come and play and I silently cried out to the Lord. Tears for Dasha. Tears for me. (Selfish, I know.) But additional happy tears that she no longer felt alone…she is in the presence of the living God.

Changing lives, one HIV+ child at a time

Posted earlier today on our ministry blog about our dinner meeting with the team last night.

I get so encouraged when I hear the passion in the voices as the caregivers talk about the hospitalized HIV+ orphans.

May the Lord continue to strengthen them as they provide tender care coupled with tough advocacy when they confront people/systems who cannot see the value of these children.

Children to children

Oh, I love when new friends get to visit my little friends in the HIV/AIDS unit of the hospital. And I especially enjoyed visiting this week with a whole family involved!

The patients love a card game called Serpentina and so Lena gave Wendy and her children a quick lesson. The goal is to complete the serpent — be the last person to add the head or the tail and you get to collect that serpent. You want the longest snake possible, but you don’t want to pass up a chance to complete a smaller one. And all pieces have to match colors.  Lena won the practice round!

The patients found these English-speaking children very entertaining. And as the crowd grew around our group, the finger nail polish was placed out on the table. (These guys came prepared!) It didn’t take long before Wendy was multi-tasking…playing cards AND painting nails.

The afternoon was hot, but the shaded pavement in front of the building was perfect for sidewalk chalk. (Did I mention that these guys came prepared?!) And what was the favorite drawing? Outlines of the children. I’m sure that some of the Ukrainian parents/caregivers watching were not thrilled with the children stretching out on the pavement, but the children were hooked. They contorted into all kinds of strange shapes and then giggled after looking at their outlines. Such a fun time.

Even our little 2-year-old visitor got into the action…once she spotted a 13-month-old girl sitting in a walker, she just could not stay away. When Lena and I each took a hand of the little patient so that she could walk, we had a certain little someone close on our heels. And then hugs. And a kiss on the forehead. So sweet.

As we left the scene, one of the little patients ran up to ask if we’d be back again.

You bet.

Back to the hospital

Wednesday. My day to visit the hospitalized children in the HIV/AIDS ward at the national children’s hospital in Kyiv. Typically Jim teaches medical English to the doctors here also on Wednesday, but this week was a bit different. No lessons, but we wanted to see everyone after our time away. We checked in with the doctors…who were very excited to see us back in the country. Two of Jim’s students had babies while we were gone and so are currently at home. Never even knew they were pregnant — oh how lab coats can hide baby bumps! I can’t wait to see those little ones! Jim was able to catch up with the conditions of some of the children as he reconnected with the doctors.

As we left the office and headed to the ‘waiting’ area — waiting for the children to awaken from afternoon naps — I was greeted with a huge hug from one young boy. He started rambling on a mile a minute and then remembered that he needed to slow down for me to understand him. He was so patient as I struggled to get my foreign language brain into Ukrainian gear. He wanted to know just what was in our bag…nothing. Sidewalk chalk for everyone to share. No individual gift. He has perfected the pitiful look — head down, lips pouting. But he knows we have his number…we don’t fall for that look from him!

One of my favorite moms came down the hall next, looking tired and thin. She managed a sweet smile and gave me a hug. I asked about her daughter — a champion bingo player — and she said that she can no longer sit up. Because of some deterioration of the vertebrae…this is being written by a non-medical person…she must stay flat in her bed and wears a corset when sleeping. I asked if I could visit her in her room and her mother said, “Of course.”

I went into her room and was honestly quite shocked at the sight of the little girl we had left just a few months ago. A child who previously looked frail and gaunt was now puffed into twice her size. I went to her bedside and smiled at her. She focused and then smiled back…a weak smile. Not letting on that she was in great pain. I took her hand and showed excitement as I noticed her fingernail polish. Another smile. But then she got more and more tired. I stroked her arm and squeezed her hand and challenged her to squeeze back. She asked why I had not been there for so long. I explained that I was visiting grandsons in America. She stared at the ceiling and her eyes began to close. I asked her if she was tired and she said that she was. I asked her if she wanted to go to sleep and she said yes. I stood up, kissed my finger and placed the kiss on her cheek. She grinned the biggest grin of the day, kissed her own finger and put it on my cheek.

It was hard for me to leave the room. And hard to tell Jim what she looked like. Well, hard to not start crying like a baby. She’s a fighter…but I’ve been told that she’ll never be able to sit up again.

Praying for these children. And their families.